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"disqusTitle": "How Therapy Became A Hobby of the Wealthy – Rather Than A Necessity for the Mentally Ill",
"title": "How Therapy Became A Hobby of the Wealthy – Rather Than A Necessity for the Mentally Ill",
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"content": "\u003cp>There’s something that really bothers Stanford psychiatry professor Keith Humphreys. When he thinks of all the years he spends training the next generation of psychiatrists, the enormous investment in medical school and residency, he wants them to devote that education to taking care of people with serious mental illness.\u003c/p>\n\u003cp>But many of them instead set up a private practice, where they can charge $400 an hour in cash to help people who Humphreys calls “the worried well” –- people who enjoy the self-exploration of therapy but do not necessarily have a mental health problem.\u003c/p>\n\u003cp>\"A minute I spend training that person is a minute of my life wasted,” Humphreys says. “That very well-trained person should be taking care of very, very troubled people. When they don’t, everyone who needs that care loses out.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'They’re horribly addicted to OxyContin or their child is showing signs of bipolar disorder, and they can’t find somebody to take their insurance. It’s unjust.'\u003ccite>Keith Humphreys, Stanford Psychiatry Professor \u003c/cite>\u003c/aside>\n\u003cp>Humphreys says this trend of mental health clinicians shunning the health insurance industry and decamping to the cash market dates back 70 years, to the end of World War II.\u003c/p>\n\u003cp>In 1946, the majority of veterans cared for by what was then called the Veterans Administration were mental health patients, Humphreys says. But there weren’t enough mental health providers to take care of them. So the VA partnered with several medical schools, including Stanford where Humphreys teaches, to train mental health professionals.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Those schools started turning out hundreds and hundreds of psychologists a year. The expansion dovetailed with soaring American affluence -- and soaring American interest in self-exploration.\u003c/p>\n\u003cp>Having a psychoanalyst became \"a sort of status symbol,\" Humphreys says.\u003c/p>\n\u003cp>A lot of psychologists who were trained to work in the public sector saw a better financial opportunity and jumped ship. They hung shingles and started their own private practices where they could charge wealthy people much higher rates.\u003c/p>\n\u003cp>“When you put in a free market in a society where people were very interested in self-exploration, a lot of them went out and did their own thing,” Humphreys says.\u003c/p>\n\u003cfigure id=\"attachment_187932\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-187932\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/keithatDavos-400x225.jpg\" alt=\"Stanford psychiatry professor Keith Humphreys\" width=\"400\" height=\"225\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-960x540.jpg 960w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Stanford psychiatry professor Keith Humphreys \u003ccite>(Courtesy: Keith Humphreys)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The reason this was possible is because of how the overall U.S. health care system was established, Humphreys says. Most people got their health insurance through work. Employers competed with each other for the best employees by offering better benefits.\u003c/p>\n\u003cp>So the standards for coverage developed over time in a piecemeal, haphazard way.\u003c/p>\n\u003cp>As health policy evolved, mental health benefits continuously lagged, Humphreys says. Coverage for mental health treatments or hospitalizations was meager or nonexistent.\u003c/p>\n\u003cp>“We don’t seem to have this problem with cardiology or oncology,” Humphreys says. “You don’t see people lining up to pay cash for those services because the benefits are so low.\"\u003c/p>\n\u003cp>This wouldn’t happen in places that have single-payer health systems, like Canada, Humphreys says, because all the health care payments are controlled by the government. Mental health care was baked into that system earlier on.\u003c/p>\n\u003cp>As a result, people in Canada with more severe mental illness are more likely to get services, according to \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJM199702203360806\" target=\"_blank\">a study\u003c/a> published in the New England Journal of Medicine.\u003c/p>\n\u003cp>That’s not the case in the U.S. People with less serious mental health conditions get more services here. Humphreys says it's mainly wealthy people who fall into the worried well category, who are consuming psychotherapy.\u003c/p>\n\u003cp>“If it’s a market where you pretty much have to pay for yourself, the rich are always going to win,” he says.\u003c/p>\n\u003cp>The growing workforce of psychiatrists, psychologists, marriage and family therapists, and licensed social workers has responded to that market demand.\u003c/p>\n\u003cp>And not just because it’s better money. Treating high-functioning professionals in a private office is a lot less stressful than doing rounds on a psychiatric ward of a public hospital.\u003c/p>\n\u003cp>“It’s understandable why someone would say this is really demanding,” Humphreys says. “For my own well-being or professional satisfaction, I’m going to stop doing this and move into doing outpatient psychotherapy with executives from Google who have angst. My salary goes up dramatically and my work is much, much easier.”\u003c/p>\n\u003cp>[contextly_sidebar id=\"tU61AbaxNL1XAbjFbyvdGvgJyPnAKYCV\"]Especially in affluent places like the Bay Area, this creates a divide, a culture of mental health haves and have-nots. Mental health clinicians don’t need to participate in the health care system or take insurance to keep their schedules full -- making it harder and harder for people of lower income to find a therapist.\u003c/p>\n\u003cp>“That’s why you can have a lot of mental health professionals in an area, but still have a shortage of care for people in need,” Humphreys adds. “The person who’s hurt is the person who’s suicidal, maybe they’re horribly addicted to OxyContin or their child is showing signs of bipolar disorder, and they can’t find somebody to take their insurance. It’s unjust.”\u003c/p>\n\u003cp>Mental health advocates have worked to shift this balance, passing the Mental Health Parity and Addiction Equity Act of 2008 and the Affordable Care Act in 2010. Together, those laws require health plans to offer mental health coverage on par with other medical coverage.\u003c/p>\n\u003cp>But so far, it hasn’t put a dent in the cash market for mental health. Humphreys says given the nature of mental health care and the American obsession with self-improvement, the cash market will be here to stay.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“Accessing mental health care is often pleasurable and enjoyable, and accessing a lot of other health care isn’t,” Humphreys says. “I mean, who goes to the dentist for fun?”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>There’s something that really bothers Stanford psychiatry professor Keith Humphreys. When he thinks of all the years he spends training the next generation of psychiatrists, the enormous investment in medical school and residency, he wants them to devote that education to taking care of people with serious mental illness.\u003c/p>\n\u003cp>But many of them instead set up a private practice, where they can charge $400 an hour in cash to help people who Humphreys calls “the worried well” –- people who enjoy the self-exploration of therapy but do not necessarily have a mental health problem.\u003c/p>\n\u003cp>\"A minute I spend training that person is a minute of my life wasted,” Humphreys says. “That very well-trained person should be taking care of very, very troubled people. When they don’t, everyone who needs that care loses out.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'They’re horribly addicted to OxyContin or their child is showing signs of bipolar disorder, and they can’t find somebody to take their insurance. It’s unjust.'\u003ccite>Keith Humphreys, Stanford Psychiatry Professor \u003c/cite>\u003c/aside>\n\u003cp>Humphreys says this trend of mental health clinicians shunning the health insurance industry and decamping to the cash market dates back 70 years, to the end of World War II.\u003c/p>\n\u003cp>In 1946, the majority of veterans cared for by what was then called the Veterans Administration were mental health patients, Humphreys says. But there weren’t enough mental health providers to take care of them. So the VA partnered with several medical schools, including Stanford where Humphreys teaches, to train mental health professionals.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Those schools started turning out hundreds and hundreds of psychologists a year. The expansion dovetailed with soaring American affluence -- and soaring American interest in self-exploration.\u003c/p>\n\u003cp>Having a psychoanalyst became \"a sort of status symbol,\" Humphreys says.\u003c/p>\n\u003cp>A lot of psychologists who were trained to work in the public sector saw a better financial opportunity and jumped ship. They hung shingles and started their own private practices where they could charge wealthy people much higher rates.\u003c/p>\n\u003cp>“When you put in a free market in a society where people were very interested in self-exploration, a lot of them went out and did their own thing,” Humphreys says.\u003c/p>\n\u003cfigure id=\"attachment_187932\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-187932\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/keithatDavos-400x225.jpg\" alt=\"Stanford psychiatry professor Keith Humphreys\" width=\"400\" height=\"225\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/keithatDavos-960x540.jpg 960w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Stanford psychiatry professor Keith Humphreys \u003ccite>(Courtesy: Keith Humphreys)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The reason this was possible is because of how the overall U.S. health care system was established, Humphreys says. Most people got their health insurance through work. Employers competed with each other for the best employees by offering better benefits.\u003c/p>\n\u003cp>So the standards for coverage developed over time in a piecemeal, haphazard way.\u003c/p>\n\u003cp>As health policy evolved, mental health benefits continuously lagged, Humphreys says. Coverage for mental health treatments or hospitalizations was meager or nonexistent.\u003c/p>\n\u003cp>“We don’t seem to have this problem with cardiology or oncology,” Humphreys says. “You don’t see people lining up to pay cash for those services because the benefits are so low.\"\u003c/p>\n\u003cp>This wouldn’t happen in places that have single-payer health systems, like Canada, Humphreys says, because all the health care payments are controlled by the government. Mental health care was baked into that system earlier on.\u003c/p>\n\u003cp>As a result, people in Canada with more severe mental illness are more likely to get services, according to \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJM199702203360806\" target=\"_blank\">a study\u003c/a> published in the New England Journal of Medicine.\u003c/p>\n\u003cp>That’s not the case in the U.S. People with less serious mental health conditions get more services here. Humphreys says it's mainly wealthy people who fall into the worried well category, who are consuming psychotherapy.\u003c/p>\n\u003cp>“If it’s a market where you pretty much have to pay for yourself, the rich are always going to win,” he says.\u003c/p>\n\u003cp>The growing workforce of psychiatrists, psychologists, marriage and family therapists, and licensed social workers has responded to that market demand.\u003c/p>\n\u003cp>And not just because it’s better money. Treating high-functioning professionals in a private office is a lot less stressful than doing rounds on a psychiatric ward of a public hospital.\u003c/p>\n\u003cp>“It’s understandable why someone would say this is really demanding,” Humphreys says. “For my own well-being or professional satisfaction, I’m going to stop doing this and move into doing outpatient psychotherapy with executives from Google who have angst. My salary goes up dramatically and my work is much, much easier.”\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Especially in affluent places like the Bay Area, this creates a divide, a culture of mental health haves and have-nots. Mental health clinicians don’t need to participate in the health care system or take insurance to keep their schedules full -- making it harder and harder for people of lower income to find a therapist.\u003c/p>\n\u003cp>“That’s why you can have a lot of mental health professionals in an area, but still have a shortage of care for people in need,” Humphreys adds. “The person who’s hurt is the person who’s suicidal, maybe they’re horribly addicted to OxyContin or their child is showing signs of bipolar disorder, and they can’t find somebody to take their insurance. It’s unjust.”\u003c/p>\n\u003cp>Mental health advocates have worked to shift this balance, passing the Mental Health Parity and Addiction Equity Act of 2008 and the Affordable Care Act in 2010. Together, those laws require health plans to offer mental health coverage on par with other medical coverage.\u003c/p>\n\u003cp>But so far, it hasn’t put a dent in the cash market for mental health. Humphreys says given the nature of mental health care and the American obsession with self-improvement, the cash market will be here to stay.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“Accessing mental health care is often pleasurable and enjoyable, and accessing a lot of other health care isn’t,” Humphreys says. “I mean, who goes to the dentist for fun?”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>When San Francisco resident Natalie Dunnege needed a therapist, \u003ca href=\"http://ww2.kqed.org/stateofhealth/2016/05/23/single-moms-search-for-therapist-foiled-by-insurance-companies/\" target=\"_blank\">she couldn’t find one\u003c/a> who took her insurance.\u003c/p>\n\u003cp>“When I would call them they wouldn’t return my phone calls or they wouldn’t be accepting patients,” she says.\u003c/p>\n\u003cp>Insurance companies say there’s a shortage of therapists.\u003c/p>\n\u003cp>But it’s not that simple. Especially in urban areas, there are lots of therapists. They just don’t want to work with the insurance companies.\u003c/p>\n\u003cp>Take Michael Klein, a psychologist practicing in San Francisco for more than 20 years. He considers it his spiritual calling to help people calm their social anxiety and to help couples stop fighting and build trust.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“With the right kind of support, they blossom,” he says.\u003c/p>\n\u003cp>Klein doesn’t accept insurance -- and he’s far from alone. Nearly half of therapists in California don’t take insurance, according to a \u003ca href=\"http://www.camft.org/ias/images/PDFs/articles/mariam/2015_demographic_survey.pdf\" target=\"_blank\">recent survey\u003c/a> from the California Association of Marriage and Family Therapists. The same is true of \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3967759/\">psychiatrists\u003c/a>. There are two reasons why, Klein says.\u003c/p>\n\u003caside class=\"pullquote alignright\">Insurance companies say there's a shortage of therapists, but therapists struggle to be accepted into a network.\u003c/aside>\n\u003cp>“One, because the reimbursement rates don’t provide a living wage,” Klein says. “You can’t own a home and drive a car and survive on what in-network providers pay you.”\u003c/p>\n\u003cp>Most insurance companies pay therapists in their networks between $60 and $80 per session. In the Bay Area and Los Angeles, therapists say the market rate for therapy is more like $150 or $200 a session.\u003c/p>\n\u003cp>“The second thing is the paperwork. For an hour of psychotherapy you spend a half hour of paperwork. So, I got into this field because I don’t like paper work,” Klein says with a laugh.\u003c/p>\n\u003cp>On that first point -- money -- insurance companies acknowledge that they may have to raise their rates to attract more therapists, particularly in rural areas. But they also say it’s on therapists to compromise.\u003c/p>\n\u003cp>[soundcloud url=\"https://api.soundcloud.com/tracks/265685067\" params=\"color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false\" width=\"100%\" height=\"166\" iframe=\"true\" /]\u003c/p>\n\u003cp>“I think it’s unrealistic to expect either the state of California taxpayers or for health plans to just pay providers whatever they ask to be paid,” says Charles Bacchi, CEO of the California Association of Health Plans, a trade group for the insurance industry.\u003c/p>\n\u003cp>“That's not sustainable,” he continues. “So you're either in the system, and you want to be part of our health care system. Or you want to do concierge service outside of it and just pretend our health care system doesn't exist. That's your choice as a provider. Our job is to find providers that are willing to be part of the solution and willing to provide coverage to those of low and moderate income.\"\u003c/p>\n\u003cp>That’s exactly how San Francisco psychologist Jonathan Horowitz feels. He wants to take insurance. But he’s hit roadblock after roadblock. He sent out 10 applications to insurance companies and got nowhere.\u003c/p>\n\u003cp>“I might knock on Cigna’s door and say, 'Hey are you guys accepting any new therapists in 94105?'” he says. “And they might say, 'No we’re not doing that. We’re totally full.'”\u003c/p>\n\u003cp>[contextly_sidebar id=\"eS6QVmoo2kjciQQ0tu4JO43ybZNtSzAw\"]\u003c/p>\n\u003cp>Six different companies told Horowitz their networks were full.\u003c/p>\n\u003cp>So even though a patient like Natalie Dunnege might call seven therapists in her insurance network and not be able to get an appointment, insurance companies are telling new and willing therapists that there’s no demand for them.\u003c/p>\n\u003cp>“I definitely think it’s to control costs,” Horowitz says. “That’s very clear.”\u003c/p>\n\u003cp>He tried for a year, and one company finally said yes. Sort of. Horowitz never got a formal notice saying his clinic was admitted to the network.\u003c/p>\n\u003cp>“It was just like, 'Oh wait, it looks like we’re suddenly getting a couple referrals from them. I wonder if we’re in their directory,'” he explains.\u003c/p>\n\u003cp>They were. Sort of. The clinic was listed in the directory. But the therapists who work at the clinic weren’t approved yet, meaning there was no one who was allowed to see the clients calling the clinic.\u003c/p>\n\u003cp>So Horowitz tried to call the insurance company to clear things up. He tried many, many times. Here’s what happened during his latest attempt to navigate the automated phone system:\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company automated attendant:\u003c/strong> First I’ll need your provider identification number. If you need a moment, say, hold on.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> Hold on.\u003c/em>\u003c/p>\n\u003cp>Sound familiar? Turns out therapists get the automated run around as much as patients do. Horowitz persevered.\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Okay, please say or enter your pin.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> My pin? Is this my pin? (He enters a few numbers).\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> I’m sorry I couldn’t find an account using the info you gave me. Do you already belong to the network?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> I think so?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Sorry, yes or no.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> Um, I don’t know ... yes?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Alright. And have you already requested a credentialing application?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> Yes.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Sorry could you repeat that.\u003c/em>\u003c/p>\n\u003cp>These experiences did not bode well from Horowitz' perspective.\u003c/p>\n\u003cp>“Honestly, I got a really bad feeling about it,” he says.\u003c/p>\n\u003cp>He figured, if this is what it’s like just finding out if he’s in the network, how’s it going to be when he has a problem with a claim and can’t get paid?\u003c/p>\n\u003cp>“I could just see that getting out of hand really quickly,” he says. “So at that point we just said, do we really even want to do this?”\u003c/p>\n\u003cp>Not just that. The reimbursement rate was even lower than he expected, and the billing was so complicated that he was going to have to hire someone to do it. He says he couldn’t afford that.\u003c/p>\n\u003cp>“We made the decision that we’re just going to cancel the contract and continue to go with cash,” he says.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Easier said than done. Horowitz hasn’t been able to get through to anyone on the phone to cancel the contract. In the meantime, prospective patients are finding his name on the directory and are calling for appointments. Horowitz says he just has to say no.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>When San Francisco resident Natalie Dunnege needed a therapist, \u003ca href=\"http://ww2.kqed.org/stateofhealth/2016/05/23/single-moms-search-for-therapist-foiled-by-insurance-companies/\" target=\"_blank\">she couldn’t find one\u003c/a> who took her insurance.\u003c/p>\n\u003cp>“When I would call them they wouldn’t return my phone calls or they wouldn’t be accepting patients,” she says.\u003c/p>\n\u003cp>Insurance companies say there’s a shortage of therapists.\u003c/p>\n\u003cp>But it’s not that simple. Especially in urban areas, there are lots of therapists. They just don’t want to work with the insurance companies.\u003c/p>\n\u003cp>Take Michael Klein, a psychologist practicing in San Francisco for more than 20 years. He considers it his spiritual calling to help people calm their social anxiety and to help couples stop fighting and build trust.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“With the right kind of support, they blossom,” he says.\u003c/p>\n\u003cp>Klein doesn’t accept insurance -- and he’s far from alone. Nearly half of therapists in California don’t take insurance, according to a \u003ca href=\"http://www.camft.org/ias/images/PDFs/articles/mariam/2015_demographic_survey.pdf\" target=\"_blank\">recent survey\u003c/a> from the California Association of Marriage and Family Therapists. The same is true of \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3967759/\">psychiatrists\u003c/a>. There are two reasons why, Klein says.\u003c/p>\n\u003caside class=\"pullquote alignright\">Insurance companies say there's a shortage of therapists, but therapists struggle to be accepted into a network.\u003c/aside>\n\u003cp>“One, because the reimbursement rates don’t provide a living wage,” Klein says. “You can’t own a home and drive a car and survive on what in-network providers pay you.”\u003c/p>\n\u003cp>Most insurance companies pay therapists in their networks between $60 and $80 per session. In the Bay Area and Los Angeles, therapists say the market rate for therapy is more like $150 or $200 a session.\u003c/p>\n\u003cp>“The second thing is the paperwork. For an hour of psychotherapy you spend a half hour of paperwork. So, I got into this field because I don’t like paper work,” Klein says with a laugh.\u003c/p>\n\u003cp>On that first point -- money -- insurance companies acknowledge that they may have to raise their rates to attract more therapists, particularly in rural areas. But they also say it’s on therapists to compromise.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cdiv class='utils-parseShortcode-shortcodes-__shortcodes__shortcodeWrapper'>\n \u003ciframe width='100%' height='166'\n scrolling='no' frameborder='no'\n src='https://w.soundcloud.com/player/?url=https://api.soundcloud.com/tracks/265685067&visual=true&color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false'\n title='https://api.soundcloud.com/tracks/265685067'>\n \u003c/iframe>\n \u003c/div>\u003c/p>\u003cp>\u003c/p>\n\u003cp>“I think it’s unrealistic to expect either the state of California taxpayers or for health plans to just pay providers whatever they ask to be paid,” says Charles Bacchi, CEO of the California Association of Health Plans, a trade group for the insurance industry.\u003c/p>\n\u003cp>“That's not sustainable,” he continues. “So you're either in the system, and you want to be part of our health care system. Or you want to do concierge service outside of it and just pretend our health care system doesn't exist. That's your choice as a provider. Our job is to find providers that are willing to be part of the solution and willing to provide coverage to those of low and moderate income.\"\u003c/p>\n\u003cp>That’s exactly how San Francisco psychologist Jonathan Horowitz feels. He wants to take insurance. But he’s hit roadblock after roadblock. He sent out 10 applications to insurance companies and got nowhere.\u003c/p>\n\u003cp>“I might knock on Cigna’s door and say, 'Hey are you guys accepting any new therapists in 94105?'” he says. “And they might say, 'No we’re not doing that. We’re totally full.'”\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Six different companies told Horowitz their networks were full.\u003c/p>\n\u003cp>So even though a patient like Natalie Dunnege might call seven therapists in her insurance network and not be able to get an appointment, insurance companies are telling new and willing therapists that there’s no demand for them.\u003c/p>\n\u003cp>“I definitely think it’s to control costs,” Horowitz says. “That’s very clear.”\u003c/p>\n\u003cp>He tried for a year, and one company finally said yes. Sort of. Horowitz never got a formal notice saying his clinic was admitted to the network.\u003c/p>\n\u003cp>“It was just like, 'Oh wait, it looks like we’re suddenly getting a couple referrals from them. I wonder if we’re in their directory,'” he explains.\u003c/p>\n\u003cp>They were. Sort of. The clinic was listed in the directory. But the therapists who work at the clinic weren’t approved yet, meaning there was no one who was allowed to see the clients calling the clinic.\u003c/p>\n\u003cp>So Horowitz tried to call the insurance company to clear things up. He tried many, many times. Here’s what happened during his latest attempt to navigate the automated phone system:\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company automated attendant:\u003c/strong> First I’ll need your provider identification number. If you need a moment, say, hold on.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> Hold on.\u003c/em>\u003c/p>\n\u003cp>Sound familiar? Turns out therapists get the automated run around as much as patients do. Horowitz persevered.\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Okay, please say or enter your pin.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> My pin? Is this my pin? (He enters a few numbers).\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> I’m sorry I couldn’t find an account using the info you gave me. Do you already belong to the network?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> I think so?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Sorry, yes or no.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> Um, I don’t know ... yes?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Alright. And have you already requested a credentialing application?\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Horowitz:\u003c/strong> Yes.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003cstrong>Insurance company:\u003c/strong> Sorry could you repeat that.\u003c/em>\u003c/p>\n\u003cp>These experiences did not bode well from Horowitz' perspective.\u003c/p>\n\u003cp>“Honestly, I got a really bad feeling about it,” he says.\u003c/p>\n\u003cp>He figured, if this is what it’s like just finding out if he’s in the network, how’s it going to be when he has a problem with a claim and can’t get paid?\u003c/p>\n\u003cp>“I could just see that getting out of hand really quickly,” he says. “So at that point we just said, do we really even want to do this?”\u003c/p>\n\u003cp>Not just that. The reimbursement rate was even lower than he expected, and the billing was so complicated that he was going to have to hire someone to do it. He says he couldn’t afford that.\u003c/p>\n\u003cp>“We made the decision that we’re just going to cancel the contract and continue to go with cash,” he says.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Easier said than done. Horowitz hasn’t been able to get through to anyone on the phone to cancel the contract. In the meantime, prospective patients are finding his name on the directory and are calling for appointments. Horowitz says he just has to say no.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Do Women Need Periods?",
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"content": "\u003cp>Six years of your life. Or 2,190 days. That's about how long the average woman will spend having her periods.\u003c/p>\n\u003cp>For some women, that's too many days, too many periods.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There's absolutely no medical need to have a period when you're on contraception.'\u003ccite>Dr. Elizabeth Micks, University of Washington\u003c/cite>\u003c/aside>\n\u003cp>More women in their 20s and 30s are choosing contraception that may suppress their menstrual cycles, says \u003ca href=\"http://www.uwmedicine.org/bios/elizabeth-micks\">Dr. Elizabeth Micks\u003c/a>, who runs an OB-GYN clinic at the University of Washington in Seattle. \"In general, I think views are changing really rapidly,\" Micks says. \"That need to have regular periods is not just in our society anymore.\"\u003c/p>\n\u003cp>With traditional birth control, a woman takes a hormone pill for 21 days to stop her cycle. Then she takes a sugar pill for a week, so she can have what looks like a period.\u003c/p>\n\u003cp>But Micks says, physiologically this isn't a real period at all. And it isn't necessary. \"There's absolutely no medical need to have a period when you're on contraception,\" she says.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>So why have women been having all these \"fake\" periods for decades? \"It's actually a historical thing,\" she says.\u003c/p>\n\u003cp>One of the doctors who helped invent the pill was Catholic. He thought the pope might accept the pill if it looked like women were having periods.\u003c/p>\n\u003cp>But the Catholic church never came around to the pill. And when doctors actually asked women if they wanted to have these fake periods, many said they didn't.\u003c/p>\n\u003cp>Today women have many options if they want to try to suppress their cycles. There's the hormonal \u003ca href=\"https://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000774.htm\">IUD\u003c/a>, an arm \u003ca href=\"https://www.nlm.nih.gov/medlineplus/ency/article/007555.htm\">implant \u003c/a>and a hormone shot. They can also take some types of birth control pills continuously.\u003c/p>\n\u003cp>Use of the IUD and implant has risen nearly fivefold in the past decade, a \u003ca href=\"http://www.cdc.gov/nchs/data/databriefs/db188.pdf\">report\u003c/a> from the Centers for Disease Control and Prevention found.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-full wp-image-187814\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM.png\" alt=\"\" width=\"1446\" height=\"794\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM.png 1446w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-400x220.png 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-800x439.png 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-768x422.png 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-1440x791.png 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-1180x648.png 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-960x527.png 960w\" sizes=\"(max-width: 1446px) 100vw, 1446px\">\u003c/p>\n\u003cp>And two top medical organizations — the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics — \u003ca href=\"http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Adolescent-Health-Care/Adolescents-and-Long-Acting-Reversible-Contraception\">recommend\u003c/a> these forms of contraception as the top choice for young women who want birth control. One study \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMoa1110855\">found\u003c/a> the IUD and implant were nearly 20 times more effective at preventing pregnancies than birth control pills.\u003c/p>\n\u003cp>But none of these methods are a guarantee for getting rid of periods altogether. \"It's not an on and off switch for menstruation,\" says \u003ca href=\"https://med.stanford.edu/profiles/paula-hillard\">Paula Hillard\u003c/a>, an OB-GYN at Stanford University Medical Center.\u003c/p>\n\u003cp>Instead, most women have spotting or unscheduled bleeding when they first start these methods. \"It can happen without a rhyme or reason, but it tends to improve over time.\"\u003c/p>\n\u003cp>For example, with the hormonal IUD, about 50 percent of women don't have periods after a year. But nearly all women will have lighter, shorter and less painful periods after about six months, Hillard says.\u003c/p>\n\u003cp>[contextly_sidebar id=\"mbRzjQZUuK2lzuuYAAXtvryaTtXBNUFf\"]Even if a woman hasn't had a cycle in five to 10 years, there's no evidence that suppressing menstruation hurts future fertility, Hillard says. Most women can get pregnant right after they stop using the contraception, except for the hormonal shot — which can decrease fertility for months after it's discontinued, or even a year.\u003c/p>\n\u003cp>As with all forms of hormonal contraception, there are risks and side effects with these devices, such as an increased risk of blood clots. And some doctors think there isn't enough known about the long-term effects of menstruation suppression, especially with teenagers.\u003c/p>\n\u003cp>\"Important studies, like what are the effects on the breast? What are the effects on bone — haven't been done,\" says \u003ca href=\"http://www.cemcor.ubc.ca/media/prior_bio\">Jerilynn Prior\u003c/a>, an endocrinologist at the University of British Columbia.\u003c/p>\n\u003cp>She says women should think carefully before trying to suppress their cycle. Having a period does serve a purpose, she says: It tells you your reproductive system is working well and that you're not pregnant. It isn't a \"disease\" that needs to be treated away, she says.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"I think there is value in understanding and appreciating our own intrinsic hormonal cycles,\" Prior says. \"It's our identity.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Do+Women+Need+Periods%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Six years of your life. Or 2,190 days. That's about how long the average woman will spend having her periods.\u003c/p>\n\u003cp>For some women, that's too many days, too many periods.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There's absolutely no medical need to have a period when you're on contraception.'\u003ccite>Dr. Elizabeth Micks, University of Washington\u003c/cite>\u003c/aside>\n\u003cp>More women in their 20s and 30s are choosing contraception that may suppress their menstrual cycles, says \u003ca href=\"http://www.uwmedicine.org/bios/elizabeth-micks\">Dr. Elizabeth Micks\u003c/a>, who runs an OB-GYN clinic at the University of Washington in Seattle. \"In general, I think views are changing really rapidly,\" Micks says. \"That need to have regular periods is not just in our society anymore.\"\u003c/p>\n\u003cp>With traditional birth control, a woman takes a hormone pill for 21 days to stop her cycle. Then she takes a sugar pill for a week, so she can have what looks like a period.\u003c/p>\n\u003cp>But Micks says, physiologically this isn't a real period at all. And it isn't necessary. \"There's absolutely no medical need to have a period when you're on contraception,\" she says.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>So why have women been having all these \"fake\" periods for decades? \"It's actually a historical thing,\" she says.\u003c/p>\n\u003cp>One of the doctors who helped invent the pill was Catholic. He thought the pope might accept the pill if it looked like women were having periods.\u003c/p>\n\u003cp>But the Catholic church never came around to the pill. And when doctors actually asked women if they wanted to have these fake periods, many said they didn't.\u003c/p>\n\u003cp>Today women have many options if they want to try to suppress their cycles. There's the hormonal \u003ca href=\"https://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000774.htm\">IUD\u003c/a>, an arm \u003ca href=\"https://www.nlm.nih.gov/medlineplus/ency/article/007555.htm\">implant \u003c/a>and a hormone shot. They can also take some types of birth control pills continuously.\u003c/p>\n\u003cp>Use of the IUD and implant has risen nearly fivefold in the past decade, a \u003ca href=\"http://www.cdc.gov/nchs/data/databriefs/db188.pdf\">report\u003c/a> from the Centers for Disease Control and Prevention found.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-full wp-image-187814\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM.png\" alt=\"\" width=\"1446\" height=\"794\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM.png 1446w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-400x220.png 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-800x439.png 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-768x422.png 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-1440x791.png 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-1180x648.png 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/Screen-Shot-2016-05-23-at-6.40.54-AM-960x527.png 960w\" sizes=\"(max-width: 1446px) 100vw, 1446px\">\u003c/p>\n\u003cp>And two top medical organizations — the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics — \u003ca href=\"http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Adolescent-Health-Care/Adolescents-and-Long-Acting-Reversible-Contraception\">recommend\u003c/a> these forms of contraception as the top choice for young women who want birth control. One study \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMoa1110855\">found\u003c/a> the IUD and implant were nearly 20 times more effective at preventing pregnancies than birth control pills.\u003c/p>\n\u003cp>But none of these methods are a guarantee for getting rid of periods altogether. \"It's not an on and off switch for menstruation,\" says \u003ca href=\"https://med.stanford.edu/profiles/paula-hillard\">Paula Hillard\u003c/a>, an OB-GYN at Stanford University Medical Center.\u003c/p>\n\u003cp>Instead, most women have spotting or unscheduled bleeding when they first start these methods. \"It can happen without a rhyme or reason, but it tends to improve over time.\"\u003c/p>\n\u003cp>For example, with the hormonal IUD, about 50 percent of women don't have periods after a year. But nearly all women will have lighter, shorter and less painful periods after about six months, Hillard says.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Even if a woman hasn't had a cycle in five to 10 years, there's no evidence that suppressing menstruation hurts future fertility, Hillard says. Most women can get pregnant right after they stop using the contraception, except for the hormonal shot — which can decrease fertility for months after it's discontinued, or even a year.\u003c/p>\n\u003cp>As with all forms of hormonal contraception, there are risks and side effects with these devices, such as an increased risk of blood clots. And some doctors think there isn't enough known about the long-term effects of menstruation suppression, especially with teenagers.\u003c/p>\n\u003cp>\"Important studies, like what are the effects on the breast? What are the effects on bone — haven't been done,\" says \u003ca href=\"http://www.cemcor.ubc.ca/media/prior_bio\">Jerilynn Prior\u003c/a>, an endocrinologist at the University of British Columbia.\u003c/p>\n\u003cp>She says women should think carefully before trying to suppress their cycle. Having a period does serve a purpose, she says: It tells you your reproductive system is working well and that you're not pregnant. It isn't a \"disease\" that needs to be treated away, she says.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"I think there is value in understanding and appreciating our own intrinsic hormonal cycles,\" Prior says. \"It's our identity.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Do+Women+Need+Periods%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>We’ve made great progress treating people who are infected with HIV, but if they get cancer they’re less likely to get the care they need, a \u003ca href=\"http://onlinelibrary.wiley.com/enhanced/doi/10.1002/cncr.30052\" target=\"_blank\">recent study\u003c/a> found.\u003c/p>\n\u003cp>Researchers examined treatment for a variety of cancers, including upper gastrointestinal tract, colorectal, prostate, lung, head and neck, cervix, breast, anal and two blood cancers. With the exception of anal cancer, treatment rates differed significantly between HIV-infected people and those who weren’t infected, according to the study.\u003c/p>\n\u003cp>For example, 33 percent of patients with HIV and lung cancer failed to receive any treatment for the cancer compared with 14 percent of those who weren’t infected. Similarly, 44 percent of people who were HIV positive didn’t receive treatment for upper GI cancer versus 18 percent of those where weren’t infected with HIV. Twenty-four percent of men with prostate cancer who were HIV positive didn’t get treatment compared with 7 percent of non-HIV infected men.\u003c/p>\n\u003cp>Cancer treatment was defined as radiation, chemotherapy and/or surgery.\u003c/p>\n\u003cp>“To have made such great strides with treating HIV only to have them succumb to cancer is devastating,” said Dr. Gita Suneja, a radiation oncologist at the University of Utah’s Huntsman Cancer Institute in Salt Lake City and the lead author of the study. It was published online this month in the journal Cancer.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The study used the National Cancer Data Base to analyze treatment for adults younger than 65 who were diagnosed with any of the 10 most common cancers to affect HIV patients between 2003 and 2011. The study included 10,265 HIV-infected adults and 2.2 million without HIV.\u003c/p>\n\u003cp>The data base, which is sponsored by the American Cancer Society and the American College of Surgeons, captures roughly 70 percent of newly diagnosed cancer cases in the United States.\u003c/p>\n\u003cp>The study noted that more than a third of the patients with HIV had stage 4 cancer — cancer that has metastasized — when they were diagnosed, while only 19 percent of those without HIV did.\u003c/p>\n\u003cp>Improvements in antiretroviral therapy to treat HIV have helped reduce the incidence of cancers such as \u003ca href=\"http://www.cancer.org/cancer/kaposisarcoma/detailedguide/kaposi-sarcoma-what-is-kaposi-sarcoma\" target=\"_blank\">Kaposi sarcoma\u003c/a> that are closely linked to AIDS, but rates for other cancers often associated with normal aging have increased among HIV patients. In addition, people with HIV have a higher incidence of some lifestyle-related cancers, such as lung cancer, which could be linked to higher rates of smoking. Cancer is now the \u003ca href=\"http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60604-8/fulltext?_eventId=login\" target=\"_blank\">second most common cause of death\u003c/a> among HIV-infected people, behind AIDS-related causes.\u003c/p>\n\u003cp>HIV patients are more likely to be uninsured or underinsured, and lack of coverage can affect access to cancer care. But having insurance didn’t eliminate the problem: privately insured people with HIV were significantly more likely to be untreated for many cancers than were privately insured people without HIV, the study found.\u003c/p>\n\u003cp>“We know that people with Medicaid or who are uninsured receive subpar cancer treatment, and that’s a big public health issue,” said Suneja. “But even factoring that in, HIV-infected people are still less likely to receive cancer treatment. That means there are other drivers that we couldn’t measure in the study.”\u003c/p>\n\u003cp>Disparities in cancer treatment could exist for several reasons. For one thing, for most cancers there are no national treatment guidelines for HIV-infected patients, Suneja said. One of the few exceptions is anal cancer, the only cancer for which the study found little discrepancy in treatment among HIV-infected and non-infected patients. According to the research, the difference among those not receiving treatment was 4.8 percent for HIV patients versus 3.1 percent for others.\u003c/p>\n\u003cp>For other cancers, “the oncologist may pause and ask, ‘Does the HIV infection mean they shouldn’t get standard cancer treatment?’” Suneja added.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>This story was produced by \u003ca href=\"http://khn.org/\" target=\"_blank\">Kaiser Health News\u003c/a>, an editorially independent program of the \u003ca href=\"http://kff.org/\" target=\"\">Kaiser Family Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>We’ve made great progress treating people who are infected with HIV, but if they get cancer they’re less likely to get the care they need, a \u003ca href=\"http://onlinelibrary.wiley.com/enhanced/doi/10.1002/cncr.30052\" target=\"_blank\">recent study\u003c/a> found.\u003c/p>\n\u003cp>Researchers examined treatment for a variety of cancers, including upper gastrointestinal tract, colorectal, prostate, lung, head and neck, cervix, breast, anal and two blood cancers. With the exception of anal cancer, treatment rates differed significantly between HIV-infected people and those who weren’t infected, according to the study.\u003c/p>\n\u003cp>For example, 33 percent of patients with HIV and lung cancer failed to receive any treatment for the cancer compared with 14 percent of those who weren’t infected. Similarly, 44 percent of people who were HIV positive didn’t receive treatment for upper GI cancer versus 18 percent of those where weren’t infected with HIV. Twenty-four percent of men with prostate cancer who were HIV positive didn’t get treatment compared with 7 percent of non-HIV infected men.\u003c/p>\n\u003cp>Cancer treatment was defined as radiation, chemotherapy and/or surgery.\u003c/p>\n\u003cp>“To have made such great strides with treating HIV only to have them succumb to cancer is devastating,” said Dr. Gita Suneja, a radiation oncologist at the University of Utah’s Huntsman Cancer Institute in Salt Lake City and the lead author of the study. It was published online this month in the journal Cancer.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The study used the National Cancer Data Base to analyze treatment for adults younger than 65 who were diagnosed with any of the 10 most common cancers to affect HIV patients between 2003 and 2011. The study included 10,265 HIV-infected adults and 2.2 million without HIV.\u003c/p>\n\u003cp>The data base, which is sponsored by the American Cancer Society and the American College of Surgeons, captures roughly 70 percent of newly diagnosed cancer cases in the United States.\u003c/p>\n\u003cp>The study noted that more than a third of the patients with HIV had stage 4 cancer — cancer that has metastasized — when they were diagnosed, while only 19 percent of those without HIV did.\u003c/p>\n\u003cp>Improvements in antiretroviral therapy to treat HIV have helped reduce the incidence of cancers such as \u003ca href=\"http://www.cancer.org/cancer/kaposisarcoma/detailedguide/kaposi-sarcoma-what-is-kaposi-sarcoma\" target=\"_blank\">Kaposi sarcoma\u003c/a> that are closely linked to AIDS, but rates for other cancers often associated with normal aging have increased among HIV patients. In addition, people with HIV have a higher incidence of some lifestyle-related cancers, such as lung cancer, which could be linked to higher rates of smoking. Cancer is now the \u003ca href=\"http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60604-8/fulltext?_eventId=login\" target=\"_blank\">second most common cause of death\u003c/a> among HIV-infected people, behind AIDS-related causes.\u003c/p>\n\u003cp>HIV patients are more likely to be uninsured or underinsured, and lack of coverage can affect access to cancer care. But having insurance didn’t eliminate the problem: privately insured people with HIV were significantly more likely to be untreated for many cancers than were privately insured people without HIV, the study found.\u003c/p>\n\u003cp>“We know that people with Medicaid or who are uninsured receive subpar cancer treatment, and that’s a big public health issue,” said Suneja. “But even factoring that in, HIV-infected people are still less likely to receive cancer treatment. That means there are other drivers that we couldn’t measure in the study.”\u003c/p>\n\u003cp>Disparities in cancer treatment could exist for several reasons. For one thing, for most cancers there are no national treatment guidelines for HIV-infected patients, Suneja said. One of the few exceptions is anal cancer, the only cancer for which the study found little discrepancy in treatment among HIV-infected and non-infected patients. According to the research, the difference among those not receiving treatment was 4.8 percent for HIV patients versus 3.1 percent for others.\u003c/p>\n\u003cp>For other cancers, “the oncologist may pause and ask, ‘Does the HIV infection mean they shouldn’t get standard cancer treatment?’” Suneja added.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>This story was produced by \u003ca href=\"http://khn.org/\" target=\"_blank\">Kaiser Health News\u003c/a>, an editorially independent program of the \u003ca href=\"http://kff.org/\" target=\"\">Kaiser Family Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>For Tim Goliver and Luther Glenn, the worst illness of their lives started in the same way — probably after having a stomach bug.\u003c/p>\n\u003cp>Tim was 21 and a college student at the University of Michigan. He was majoring in English and biology and active in the Lutheran church. \"I was a literature geek,\" says Tim. \"I was really looking forward to my senior year and wherever life would take me.\"\u003c/p>\n\u003cp>Luther was in his 50s. He'd spent most of his career as a U.S. military policeman and was working in security in Washington, D.C. He'd recently separated from his wife and had just moved into a new house with his two daughters, who were in their 20s.\u003c/p>\n\u003cp>Both men recovered from their stomach bugs, but a few days later they started to feel sluggish.\u003c/p>\n\u003cp>\"Here we are trying to unpack, prepare ourselves for new life together, and I'm flat-out dead tired,\" says Luther. He fell asleep in the car one morning and never made it out of the garage. Then he fell in the bathroom.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>For Tim, it started to feel like running a marathon just to lift a spoonful of soup. One morning, he tried to comb his hair and realized he couldn't lift his arm above his shoulder. \"At that moment I started to freak out,\" he says.\u003c/p>\n\u003cp>Both men got so weak that their families had to wheel them into the emergency room in wheelchairs. They got the same diagnosis: \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024547/\" target=\"_blank\">Guillain-Barre syndrome\u003c/a>, a neurological disorder that can leave people paralyzed for weeks.\u003c/p>\n\u003cp>People who come down with Guillain-Barre typically have had some sort of illness a few days or weeks before, like the flu, says \u003ca href=\"https://profiles.med.tufts.edu/profiles/display/138457\" target=\"_blank\">Dr. Ken Gorson,\u003c/a> a neurologist at Tufts School of Medicine and St. Elizabeth's Medical Center in Boston. He's on the medical advisory board of \u003ca href=\"http://www.gbs-cidp.org/\" target=\"_blank\">GBS/CIDP Foundation International\u003c/a>, which is dedicated to Guillain-Barre syndrome.\u003c/p>\n\u003cfigure id=\"attachment_185756\" class=\"wp-caption aligncenter\" style=\"max-width: 1438px\">\u003cimg class=\"size-full wp-image-185756\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583.jpg\" alt=\"Luther Glenn developed Guillain-Barre syndrome after coming down with a stomach virus in 2008. He's still dealing with the consequences.\" width=\"1438\" height=\"1078\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583.jpg 1438w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-960x720.jpg 960w\" sizes=\"(max-width: 1438px) 100vw, 1438px\">\u003cfigcaption class=\"wp-caption-text\">Luther Glenn developed Guillain-Barre syndrome after coming down with a stomach virus in 2008. He's still dealing with the consequences. \u003ccite>(Meredith Rizzo/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In many cases the trigger is a bacterial infection like \u003cem>Campylobacter jejuni,\u003c/em> which sometimes \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627687/\" target=\"_blank\">contaminates\u003c/a> undercooked chicken. In super-rare cases, people have developed Guillain-Barre after getting certain \u003ca href=\"http://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm\">vaccines\u003c/a>. The patient gets well, and then, \"within days or a week, has terrible numbness or tingling and weakness,\" says Gorson.\u003c/p>\n\u003cp>The syndrome gets its name from two French military doctors, Georges Guillain and Jean Alexandre Barre. In 1916 they diagnosed two World War I soldiers with the illness. The soldiers had come to the military hospital weak and with a tingling sensation up their arms and legs. One tried to leave at 5 a.m. to rejoin his comrades, but fell down with his backpack on and couldn't get back up.\u003c/p>\n\u003cp>Here's what happens. The immune system launches an attack against the pathogen that's making someone sick. It succeeds, and the person gets better, but the immune system doesn't realize the battle is over and attacks stuff in the body. Unfortunately, that can include the \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024280/\" target=\"_blank\">myelin\u003c/a> coating around nerves.\u003c/p>\n\u003cfigure id=\"attachment_185757\" class=\"wp-caption alignright\" style=\"max-width: 600px\">\u003cimg class=\"size-full wp-image-185757\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/incidence-of-guillain-barre-syndrome_final-97b21384607101d15087546dc230b76cb1ca4bf7.png\" alt=\"Exposure to pathogens can set the stage for Guillain-Barre syndrome. It can leave people paralyzed for weeks.\" width=\"600\" height=\"450\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/incidence-of-guillain-barre-syndrome_final-97b21384607101d15087546dc230b76cb1ca4bf7.png 600w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/incidence-of-guillain-barre-syndrome_final-97b21384607101d15087546dc230b76cb1ca4bf7-400x300.png 400w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">Exposure to pathogens can set the stage for Guillain-Barre syndrome. It can leave people paralyzed for weeks. \u003ccite>(Rae Ellen Bichell and Katie Park/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"The immune system is by mistake attacking the peripheral nerves,\" says Gorson.\u003c/p>\n\u003cp>That is not good, because like the insulation around an electrical wire, if the nerve coating gets damaged, the messages traveling from the central nervous system to the rest of the body can get lost.\u003c/p>\n\u003cp>Tim and Luther were admitted to the hospital and were told to expect a quick decline. Their blood was \u003ca href=\"http://www.cochrane.org/CD001798/NEUROMUSC_plasma-exchange-for-guillain-barre-syndrome\" target=\"_blank\">filtered\u003c/a> to remove the antibodies attacking their own bodies, and they received \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD002063.pub6/full\" target=\"_blank\">injections of antibodies\u003c/a> from donated blood.\u003c/p>\n\u003cp>No matter what the cause, a diagnosis of Guillain-Barre syndrome, or GBS, usually means you're about to go through something really traumatic. You can expect to lose almost everything that makes you \u003cem>you\u003c/em>. That could mean not being able to walk, to talk — even to breathe.\u003c/p>\n\u003cp>But after weeks or months in the intensive care unit, you'll gain it back. Probably.\u003c/p>\n\u003cp>Gorson says about 80 percent of people who come down with Guillain-Barre will recover almost fully. Very few die. And some people recover, but never fully regain their abilities. And no one knows, while in the midst of Guillain-Barre, how much they'll get back.\u003c/p>\n\u003cfigure id=\"attachment_185755\" class=\"wp-caption alignright\" style=\"max-width: 1917px\">\u003cimg class=\"wp-image-185755 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e.jpg\" alt=\"Kelli Glenn holds a photo of her father while he was in the hospital.\" width=\"1917\" height=\"1078\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e.jpg 1917w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-960x540.jpg 960w\" sizes=\"(max-width: 1917px) 100vw, 1917px\">\u003cfigcaption class=\"wp-caption-text\">Kelli Glenn holds a photo of her father while he was in the hospital. \u003ccite>(Meredith Rizzo/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I was watching TV and I lost use of the right side of my face. All the muscles just sagged,\" says Tim, recalling the first few days in the hospital.\u003c/p>\n\u003cp>Within five days of entering the hospital, the muscle that used to lift Tim's lungs for each breath went lax, so the staff put a breathing tube down his throat, taping it to his mouth. Then he had to go on a ventilator, through a tube that went straight to his windpipe through a hole in his neck.\u003c/p>\n\u003cp>\"You feel like your body is a bellows, and you feel like you're being pumped and fanned again, again, again,\" says Tim.\u003c/p>\n\u003cp>Because Tim's nerves were under attack, every little touch was excruciating — even a soft towel felt like steel wool digging into his skin. And he'd lost control over his mouth and throat muscles, so he couldn't talk anymore. He could blink and nod to some extent, but that was about it.\u003c/p>\n\u003cfigure id=\"attachment_185758\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-185758\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-400x400.jpg\" alt=\"Tim Goliver and his wife, Christine, last year in Washington, D.C. Goliver was 21 when he first developed a stomach bug, and then Guillain-Barre.\" width=\"400\" height=\"400\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-400x400.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-800x800.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-1180x1180.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-960x960.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-150x150.jpg 150w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428.jpg 1223w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Tim Goliver and his wife, Christine, last year in Washington, D.C. Goliver was 21 when he first developed a stomach bug, and then Guillain-Barre. \u003ccite>(Courtesy: Tim Goliver)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I was just completely unable to move and I just would watch the same episode of \u003cem>Sports Center\u003c/em> again and again on replay and feel like I was in a loop and things were totally out of control,\" says Tim.\u003c/p>\n\u003cp>When friends and family came over, they'd communicate to him with a poster full of letters, slowly dragging their fingers across each letter until Tim nodded or blinked to indicate he wanted to use it to spell something out. It could take 10 minutes to spell out one word.\u003c/p>\n\u003cp>For weeks, he lay paralyzed and silent, fed through a tube. When he did start breathing on his own again, Tim says, each breath was so nerve-racking it felt like he was about to fall off the edge of a cliff.\u003c/p>\n\u003cp>\"But bit by bit, it got to the point where I was able to do that and it felt like I was in control,\" he says. Tim spent two months in the intensive care unit and two months in rehab, and then went home in an electric wheelchair.\u003c/p>\n\u003cp>Luther lost mobility, too, and spent weeks in intensive care. But he was able to breathe and talk the whole time.\u003c/p>\n\u003cp>\"I remember my sister saying, 'GBS took everything else away but didn't take his mouth away,' \" says Luther, laughing.\u003c/p>\n\u003cp>During his years in the military, Luther had routinely aced the physical fitness tests. He trained about 2,000 recruits and sent them off on their military careers. There's an old saying, \"the more you sweat in peace, the less you bleed in war,\" he says.\u003c/p>\n\u003cfigure id=\"attachment_185759\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-185759\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-400x300.jpg\" alt=\"Luther trained recruits in the military.\" width=\"400\" height=\"300\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513.jpg 1438w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Luther trained recruits in the military.\u003c/figcaption>\u003c/figure>\n\u003cp>\"The military gave me the idea that I could do just about anything, so when I was in the hospital, I looked at this illness as just another mission that I had to accomplish,\" says Luther.\u003c/p>\n\u003cp>He loved being in shape because it was the one thing he knew he could control, but Guillain-Barre syndrome made him so weak that he couldn't even blink. When he fell asleep, his eyes would just roll back in his head. The nurses had to put gel on his eyes so they wouldn't dry out at night. After six weeks in the hospital, he saw himself in a mirror for the first time.\u003c/p>\n\u003cp>\"And when I looked up, I was shocked. I was floored that that was me — this thin, gaunt guy. That was probably more shocking to me than anything,\" he says.\u003c/p>\n\u003cp>He'd lost about 30 pounds. For his birthday, the nurses pureed a cake for him, because his face and throat muscles were too weak to chew and swallow solid food. \"It was horrible, but I loved them for it,\" he says.\u003c/p>\n\u003cp>For a while, things did not look good — he wasn't making any progress toward moving again. But when a doctor told Luther that most people fully recover, that gave him hope. \"It's on. I got this, Doc,\" he said. \"GBS done messed with the wrong person.\"\u003c/p>\n\u003cp>Every night he'd give himself a pep talk, repeating a line from a song. \" 'Nobody told me the road would be easy, but I don't believe He brought me this far to leave me.' Just say that every night. Every night,\" he says.\u003c/p>\n\u003cp>One day, Luther moved his hand ever so slightly. Then a muscle twitched in his leg. A few days later, he blinked. After months in the hospital, he was transferred to rehab, where he learned how to move around in a wheelchair.\u003c/p>\n\u003cp>Finally he was able to return to the house that had been full of boxes when he left about six months before. He had to live in the basement because he couldn't get up the stairs. His progress at home was excruciatingly slow.\u003c/p>\n\u003cp>\"Days start running into weeks, weeks start running into months,\" he says.\u003c/p>\n\u003cp>Luther was not one of the lucky 80 percent. He's in the \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMra1114525\" target=\"_blank\">20 percent\u003c/a> of GBS patients who don't recover fully. For the most part, he's independent. He lives in his own apartment at National Harbor near Washington, D.C. An aide stops by three times a week to help out with cleaning and cooking. He goes out to movies and dinner with his family in an electric wheelchair. He loves to read on a dock at the harbor. He's even learning Spanish. But he still can't take more than a few steps with a walker, and just moving his face enough to talk can feel like a muscular feat.\u003c/p>\n\u003cfigure id=\"attachment_185760\" class=\"wp-caption aligncenter\" style=\"max-width: 1911px\">\u003cimg class=\"size-full wp-image-185760\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326.jpg\" alt=\"Luther checks out the waterfront near his home in National Harbor, Md.\" width=\"1911\" height=\"1075\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326.jpg 1911w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-960x540.jpg 960w\" sizes=\"(max-width: 1911px) 100vw, 1911px\">\u003cfigcaption class=\"wp-caption-text\">Luther checks out the waterfront near his home in National Harbor, Md. \u003ccite>(Meredith Rizzo/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"One of the things I hate the most is that I lost my ability to smile. It's difficult for me to do. It looks almost like a grimace,\" he says.\u003c/p>\n\u003cp>It's been six years since he first got sick.\u003c/p>\n\u003cp>\"It doesn't dishearten me, but I realize this just might be my plight, so I take a smile with me and let's go. Make the best of it,\" he says.\u003c/p>\n\u003cp>Tim, on the other hand, recovered almost fully. He quickly regained his ability to talk and work. He went back to school and got his degree. He even proposed to his wife at the top of a mountain.\u003c/p>\n\u003cp>\"At the point where I started to walk up mountains again without pain, I felt that I had conquered the actual experience. I look at it now and I don't see anything that it's keeping me from doing,\" says Tim.\u003c/p>\n\u003cp>He has leather braces to stabilize his ankles, some tingling in his feet, and a very small scar on his throat from the ventilator, a mark from when he hit rock bottom. That's about it.\u003c/p>\n\u003cp>Why did Tim recover so much more function than Luther did? And why did the two of them get Guillain-Barre syndrome when so many other people who were exposed to the same bugs didn't?\u003c/p>\n\u003cp>\"Unknown,\" says neurologist Gorson. \"There's clearly an interaction between the infectious agent, the immune response, and then something that's special or unique about the patient's peripheral nerve system,\" he says. Sometimes it has to do with age, medical care, how much nerve damage happened, or even the kind of bacteria or virus that caused the illness in the first place.\u003c/p>\n\u003cp>Predicting how much a patient will recover is one of the things Gorson and other neurologists are trying to \u003ca href=\"https://www.gbsstudies.org/about-igos\" target=\"_blank\">figure out\u003c/a>. They're collecting blood from over 1,000 people around the world, hoping to find out what triggers some people's immune systems to react in such an extreme way. It might lead to better treatments, or maybe even something they can do to stop the progression of the disease before it gets so bad.\u003c/p>\n\u003cp>If the Zika virus does begin spreading through the U.S. as \u003ca href=\"http://www.nature.com/nrmicro/journal/vaop/ncurrent/full/nrmicro.2016.70.html\">predicted\u003c/a>, there may be \u003ca href=\"http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00562-6/abstract\">more cases\u003c/a> of Guillain-Barre syndrome. The condition will still remain rare, but even a slight increase in cases could be horrible — not just for the people who get it, but also due to the \u003ca href=\"http://link.springer.com/article/10.1007%2Fs00134-016-4364-x\">strain\u003c/a> it puts on hospital intensive care units and insurers.\u003c/p>\n\u003cp>\"I cost over a million dollars, and that is something I have never forgotten,\" says Tim.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Tim and Luther did not get Guillain-Barre from Zika. But the result is the same. And if their cases show anything, it's that no matter what the cause, the disease is one wild ride.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Suddenly+Paralyzed%2C+2+Men+Struggle+To+Recover+From+Guillain-Barre&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>For Tim Goliver and Luther Glenn, the worst illness of their lives started in the same way — probably after having a stomach bug.\u003c/p>\n\u003cp>Tim was 21 and a college student at the University of Michigan. He was majoring in English and biology and active in the Lutheran church. \"I was a literature geek,\" says Tim. \"I was really looking forward to my senior year and wherever life would take me.\"\u003c/p>\n\u003cp>Luther was in his 50s. He'd spent most of his career as a U.S. military policeman and was working in security in Washington, D.C. He'd recently separated from his wife and had just moved into a new house with his two daughters, who were in their 20s.\u003c/p>\n\u003cp>Both men recovered from their stomach bugs, but a few days later they started to feel sluggish.\u003c/p>\n\u003cp>\"Here we are trying to unpack, prepare ourselves for new life together, and I'm flat-out dead tired,\" says Luther. He fell asleep in the car one morning and never made it out of the garage. Then he fell in the bathroom.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>For Tim, it started to feel like running a marathon just to lift a spoonful of soup. One morning, he tried to comb his hair and realized he couldn't lift his arm above his shoulder. \"At that moment I started to freak out,\" he says.\u003c/p>\n\u003cp>Both men got so weak that their families had to wheel them into the emergency room in wheelchairs. They got the same diagnosis: \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024547/\" target=\"_blank\">Guillain-Barre syndrome\u003c/a>, a neurological disorder that can leave people paralyzed for weeks.\u003c/p>\n\u003cp>People who come down with Guillain-Barre typically have had some sort of illness a few days or weeks before, like the flu, says \u003ca href=\"https://profiles.med.tufts.edu/profiles/display/138457\" target=\"_blank\">Dr. Ken Gorson,\u003c/a> a neurologist at Tufts School of Medicine and St. Elizabeth's Medical Center in Boston. He's on the medical advisory board of \u003ca href=\"http://www.gbs-cidp.org/\" target=\"_blank\">GBS/CIDP Foundation International\u003c/a>, which is dedicated to Guillain-Barre syndrome.\u003c/p>\n\u003cfigure id=\"attachment_185756\" class=\"wp-caption aligncenter\" style=\"max-width: 1438px\">\u003cimg class=\"size-full wp-image-185756\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583.jpg\" alt=\"Luther Glenn developed Guillain-Barre syndrome after coming down with a stomach virus in 2008. He's still dealing with the consequences.\" width=\"1438\" height=\"1078\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583.jpg 1438w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_3-2ad7e58e4ec2ce9d973e937c60aecdde0f67f583-960x720.jpg 960w\" sizes=\"(max-width: 1438px) 100vw, 1438px\">\u003cfigcaption class=\"wp-caption-text\">Luther Glenn developed Guillain-Barre syndrome after coming down with a stomach virus in 2008. He's still dealing with the consequences. \u003ccite>(Meredith Rizzo/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In many cases the trigger is a bacterial infection like \u003cem>Campylobacter jejuni,\u003c/em> which sometimes \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627687/\" target=\"_blank\">contaminates\u003c/a> undercooked chicken. In super-rare cases, people have developed Guillain-Barre after getting certain \u003ca href=\"http://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm\">vaccines\u003c/a>. The patient gets well, and then, \"within days or a week, has terrible numbness or tingling and weakness,\" says Gorson.\u003c/p>\n\u003cp>The syndrome gets its name from two French military doctors, Georges Guillain and Jean Alexandre Barre. In 1916 they diagnosed two World War I soldiers with the illness. The soldiers had come to the military hospital weak and with a tingling sensation up their arms and legs. One tried to leave at 5 a.m. to rejoin his comrades, but fell down with his backpack on and couldn't get back up.\u003c/p>\n\u003cp>Here's what happens. The immune system launches an attack against the pathogen that's making someone sick. It succeeds, and the person gets better, but the immune system doesn't realize the battle is over and attacks stuff in the body. Unfortunately, that can include the \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024280/\" target=\"_blank\">myelin\u003c/a> coating around nerves.\u003c/p>\n\u003cfigure id=\"attachment_185757\" class=\"wp-caption alignright\" style=\"max-width: 600px\">\u003cimg class=\"size-full wp-image-185757\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/incidence-of-guillain-barre-syndrome_final-97b21384607101d15087546dc230b76cb1ca4bf7.png\" alt=\"Exposure to pathogens can set the stage for Guillain-Barre syndrome. It can leave people paralyzed for weeks.\" width=\"600\" height=\"450\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/incidence-of-guillain-barre-syndrome_final-97b21384607101d15087546dc230b76cb1ca4bf7.png 600w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/incidence-of-guillain-barre-syndrome_final-97b21384607101d15087546dc230b76cb1ca4bf7-400x300.png 400w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">Exposure to pathogens can set the stage for Guillain-Barre syndrome. It can leave people paralyzed for weeks. \u003ccite>(Rae Ellen Bichell and Katie Park/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"The immune system is by mistake attacking the peripheral nerves,\" says Gorson.\u003c/p>\n\u003cp>That is not good, because like the insulation around an electrical wire, if the nerve coating gets damaged, the messages traveling from the central nervous system to the rest of the body can get lost.\u003c/p>\n\u003cp>Tim and Luther were admitted to the hospital and were told to expect a quick decline. Their blood was \u003ca href=\"http://www.cochrane.org/CD001798/NEUROMUSC_plasma-exchange-for-guillain-barre-syndrome\" target=\"_blank\">filtered\u003c/a> to remove the antibodies attacking their own bodies, and they received \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD002063.pub6/full\" target=\"_blank\">injections of antibodies\u003c/a> from donated blood.\u003c/p>\n\u003cp>No matter what the cause, a diagnosis of Guillain-Barre syndrome, or GBS, usually means you're about to go through something really traumatic. You can expect to lose almost everything that makes you \u003cem>you\u003c/em>. That could mean not being able to walk, to talk — even to breathe.\u003c/p>\n\u003cp>But after weeks or months in the intensive care unit, you'll gain it back. Probably.\u003c/p>\n\u003cp>Gorson says about 80 percent of people who come down with Guillain-Barre will recover almost fully. Very few die. And some people recover, but never fully regain their abilities. And no one knows, while in the midst of Guillain-Barre, how much they'll get back.\u003c/p>\n\u003cfigure id=\"attachment_185755\" class=\"wp-caption alignright\" style=\"max-width: 1917px\">\u003cimg class=\"wp-image-185755 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e.jpg\" alt=\"Kelli Glenn holds a photo of her father while he was in the hospital.\" width=\"1917\" height=\"1078\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e.jpg 1917w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther-1_wide-d3b89a3857c0e4669390653ed0120da2500b598e-960x540.jpg 960w\" sizes=\"(max-width: 1917px) 100vw, 1917px\">\u003cfigcaption class=\"wp-caption-text\">Kelli Glenn holds a photo of her father while he was in the hospital. \u003ccite>(Meredith Rizzo/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I was watching TV and I lost use of the right side of my face. All the muscles just sagged,\" says Tim, recalling the first few days in the hospital.\u003c/p>\n\u003cp>Within five days of entering the hospital, the muscle that used to lift Tim's lungs for each breath went lax, so the staff put a breathing tube down his throat, taping it to his mouth. Then he had to go on a ventilator, through a tube that went straight to his windpipe through a hole in his neck.\u003c/p>\n\u003cp>\"You feel like your body is a bellows, and you feel like you're being pumped and fanned again, again, again,\" says Tim.\u003c/p>\n\u003cp>Because Tim's nerves were under attack, every little touch was excruciating — even a soft towel felt like steel wool digging into his skin. And he'd lost control over his mouth and throat muscles, so he couldn't talk anymore. He could blink and nod to some extent, but that was about it.\u003c/p>\n\u003cfigure id=\"attachment_185758\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-185758\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-400x400.jpg\" alt=\"Tim Goliver and his wife, Christine, last year in Washington, D.C. Goliver was 21 when he first developed a stomach bug, and then Guillain-Barre.\" width=\"400\" height=\"400\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-400x400.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-800x800.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-1180x1180.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-960x960.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428-150x150.jpg 150w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/tim_enl-a67774177ef554bffd02c67ec0d62fb13b404428.jpg 1223w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Tim Goliver and his wife, Christine, last year in Washington, D.C. Goliver was 21 when he first developed a stomach bug, and then Guillain-Barre. \u003ccite>(Courtesy: Tim Goliver)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I was just completely unable to move and I just would watch the same episode of \u003cem>Sports Center\u003c/em> again and again on replay and feel like I was in a loop and things were totally out of control,\" says Tim.\u003c/p>\n\u003cp>When friends and family came over, they'd communicate to him with a poster full of letters, slowly dragging their fingers across each letter until Tim nodded or blinked to indicate he wanted to use it to spell something out. It could take 10 minutes to spell out one word.\u003c/p>\n\u003cp>For weeks, he lay paralyzed and silent, fed through a tube. When he did start breathing on his own again, Tim says, each breath was so nerve-racking it felt like he was about to fall off the edge of a cliff.\u003c/p>\n\u003cp>\"But bit by bit, it got to the point where I was able to do that and it felt like I was in control,\" he says. Tim spent two months in the intensive care unit and two months in rehab, and then went home in an electric wheelchair.\u003c/p>\n\u003cp>Luther lost mobility, too, and spent weeks in intensive care. But he was able to breathe and talk the whole time.\u003c/p>\n\u003cp>\"I remember my sister saying, 'GBS took everything else away but didn't take his mouth away,' \" says Luther, laughing.\u003c/p>\n\u003cp>During his years in the military, Luther had routinely aced the physical fitness tests. He trained about 2,000 recruits and sent them off on their military careers. There's an old saying, \"the more you sweat in peace, the less you bleed in war,\" he says.\u003c/p>\n\u003cfigure id=\"attachment_185759\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-185759\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-400x300.jpg\" alt=\"Luther trained recruits in the military.\" width=\"400\" height=\"300\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_24-dc669ba2fa2d07a5bc4857edcd44702e76d13513.jpg 1438w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Luther trained recruits in the military.\u003c/figcaption>\u003c/figure>\n\u003cp>\"The military gave me the idea that I could do just about anything, so when I was in the hospital, I looked at this illness as just another mission that I had to accomplish,\" says Luther.\u003c/p>\n\u003cp>He loved being in shape because it was the one thing he knew he could control, but Guillain-Barre syndrome made him so weak that he couldn't even blink. When he fell asleep, his eyes would just roll back in his head. The nurses had to put gel on his eyes so they wouldn't dry out at night. After six weeks in the hospital, he saw himself in a mirror for the first time.\u003c/p>\n\u003cp>\"And when I looked up, I was shocked. I was floored that that was me — this thin, gaunt guy. That was probably more shocking to me than anything,\" he says.\u003c/p>\n\u003cp>He'd lost about 30 pounds. For his birthday, the nurses pureed a cake for him, because his face and throat muscles were too weak to chew and swallow solid food. \"It was horrible, but I loved them for it,\" he says.\u003c/p>\n\u003cp>For a while, things did not look good — he wasn't making any progress toward moving again. But when a doctor told Luther that most people fully recover, that gave him hope. \"It's on. I got this, Doc,\" he said. \"GBS done messed with the wrong person.\"\u003c/p>\n\u003cp>Every night he'd give himself a pep talk, repeating a line from a song. \" 'Nobody told me the road would be easy, but I don't believe He brought me this far to leave me.' Just say that every night. Every night,\" he says.\u003c/p>\n\u003cp>One day, Luther moved his hand ever so slightly. Then a muscle twitched in his leg. A few days later, he blinked. After months in the hospital, he was transferred to rehab, where he learned how to move around in a wheelchair.\u003c/p>\n\u003cp>Finally he was able to return to the house that had been full of boxes when he left about six months before. He had to live in the basement because he couldn't get up the stairs. His progress at home was excruciatingly slow.\u003c/p>\n\u003cp>\"Days start running into weeks, weeks start running into months,\" he says.\u003c/p>\n\u003cp>Luther was not one of the lucky 80 percent. He's in the \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMra1114525\" target=\"_blank\">20 percent\u003c/a> of GBS patients who don't recover fully. For the most part, he's independent. He lives in his own apartment at National Harbor near Washington, D.C. An aide stops by three times a week to help out with cleaning and cooking. He goes out to movies and dinner with his family in an electric wheelchair. He loves to read on a dock at the harbor. He's even learning Spanish. But he still can't take more than a few steps with a walker, and just moving his face enough to talk can feel like a muscular feat.\u003c/p>\n\u003cfigure id=\"attachment_185760\" class=\"wp-caption aligncenter\" style=\"max-width: 1911px\">\u003cimg class=\"size-full wp-image-185760\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326.jpg\" alt=\"Luther checks out the waterfront near his home in National Harbor, Md.\" width=\"1911\" height=\"1075\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326.jpg 1911w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/luther_national-harbor_wide-116514591654951c5e256eefbfdb7ea1803f4326-960x540.jpg 960w\" sizes=\"(max-width: 1911px) 100vw, 1911px\">\u003cfigcaption class=\"wp-caption-text\">Luther checks out the waterfront near his home in National Harbor, Md. \u003ccite>(Meredith Rizzo/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"One of the things I hate the most is that I lost my ability to smile. It's difficult for me to do. It looks almost like a grimace,\" he says.\u003c/p>\n\u003cp>It's been six years since he first got sick.\u003c/p>\n\u003cp>\"It doesn't dishearten me, but I realize this just might be my plight, so I take a smile with me and let's go. Make the best of it,\" he says.\u003c/p>\n\u003cp>Tim, on the other hand, recovered almost fully. He quickly regained his ability to talk and work. He went back to school and got his degree. He even proposed to his wife at the top of a mountain.\u003c/p>\n\u003cp>\"At the point where I started to walk up mountains again without pain, I felt that I had conquered the actual experience. I look at it now and I don't see anything that it's keeping me from doing,\" says Tim.\u003c/p>\n\u003cp>He has leather braces to stabilize his ankles, some tingling in his feet, and a very small scar on his throat from the ventilator, a mark from when he hit rock bottom. That's about it.\u003c/p>\n\u003cp>Why did Tim recover so much more function than Luther did? And why did the two of them get Guillain-Barre syndrome when so many other people who were exposed to the same bugs didn't?\u003c/p>\n\u003cp>\"Unknown,\" says neurologist Gorson. \"There's clearly an interaction between the infectious agent, the immune response, and then something that's special or unique about the patient's peripheral nerve system,\" he says. Sometimes it has to do with age, medical care, how much nerve damage happened, or even the kind of bacteria or virus that caused the illness in the first place.\u003c/p>\n\u003cp>Predicting how much a patient will recover is one of the things Gorson and other neurologists are trying to \u003ca href=\"https://www.gbsstudies.org/about-igos\" target=\"_blank\">figure out\u003c/a>. They're collecting blood from over 1,000 people around the world, hoping to find out what triggers some people's immune systems to react in such an extreme way. It might lead to better treatments, or maybe even something they can do to stop the progression of the disease before it gets so bad.\u003c/p>\n\u003cp>If the Zika virus does begin spreading through the U.S. as \u003ca href=\"http://www.nature.com/nrmicro/journal/vaop/ncurrent/full/nrmicro.2016.70.html\">predicted\u003c/a>, there may be \u003ca href=\"http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00562-6/abstract\">more cases\u003c/a> of Guillain-Barre syndrome. The condition will still remain rare, but even a slight increase in cases could be horrible — not just for the people who get it, but also due to the \u003ca href=\"http://link.springer.com/article/10.1007%2Fs00134-016-4364-x\">strain\u003c/a> it puts on hospital intensive care units and insurers.\u003c/p>\n\u003cp>\"I cost over a million dollars, and that is something I have never forgotten,\" says Tim.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Tim and Luther did not get Guillain-Barre from Zika. But the result is the same. And if their cases show anything, it's that no matter what the cause, the disease is one wild ride.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Suddenly+Paralyzed%2C+2+Men+Struggle+To+Recover+From+Guillain-Barre&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Supreme Court Sends Back Birth Control Case and Both Sides Claim Victory",
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"content": "\u003cp>When it comes to the issue of religious rights versus no-cost contraception, the only thing the Supreme Court could agree on was not to decide the case.\u003c/p>\n\u003cp>In an \u003ca href=\"http://www.supremecourt.gov/opinions/15pdf/14-1418_8758.pdf\" target=\"_blank\">unsigned opinion\u003c/a> issued Monday, the court sent a series of cases back to a raft of federal appeals courts, with instructions for those courts and the parties in the lawsuits to try harder to work things out. “The Court expresses no view on the merits of the cases,” the opinion said.\u003c/p>\n\u003cp>At issue is the extent to which religiously affiliated employers (such as universities or hospitals) need to participate in the requirement under the Affordable Care Act for most employer health plans to\u003ca href=\"http://khn.org/news/supreme-court-takes-up-birth-control-access-again/\" target=\"_blank\"> provide no-cost contraception for women.\u003c/a>\u003c/p>\n\u003cp>The government made \u003ca href=\"http://www.hhs.gov/about/news/2014/08/22/administration-takes-steps-to-ensure-womens-continued-access-to-contraception-coverage.html\" target=\"_blank\">several changes to the rules\u003c/a> over the past four years in an attempt to accommodate the religious employers’ objections while still ensuring that female employees would get contraceptive coverage. But \u003ca href=\"http://www.becketfund.org/hhsinformationcentral/\" target=\"_blank\">dozens of religious nonprofit employers sued anyway\u003c/a>, claiming that even the act of notifying the government of their objections (which would, in turn, trigger a requirement for the government to arrange coverage) made them “complicit” in providing a service they see as sinful.\u003c/p>\n\u003cp>The court’s opinion, and an \u003ca href=\"http://www.supremecourt.gov/orders/courtorders/051616zor1_g31h.pdf\" target=\"_blank\">accompanying order\u003c/a> on several similar cases that were awaiting a decision on whether the high court would take them up, erased all the lower appeals court rulings, all but one of which had sided with the government. That appeared at first glance to put at risk coverage for contraceptives for tens of thousands of employees of the organizations that filed suit.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>However, the court made clear in its opinion that because the employers who have sued have already in effect notified the government of their objections, the government can rely “on this notice, to the extent it considers it necessary, to facilitate the provision of full contraceptive coverage going forward.”\u003c/p>\n\u003cp>At the same time, however, the opinion said the government “may not impose taxes or penalties on petitioners for failure to provide the relevant notice.”\u003c/p>\n\u003cp>The goal, the justices wrote, is that both sides “should be afforded an opportunity to arrive at an approach going forward that accommodates petitions’ religious exercise while at the same time ensuring that women covered by petitioners’ health plans ‘receive full and equal health coverage, including contraceptive coverage.’ ”\u003c/p>\n\u003cp>Both sides in the dispute claimed at least a partial victory.\u003c/p>\n\u003cp>“From our point of view this is a win for religious liberty,” said Mark Rienzi, a senior counsel for the Becket Fund for Religious Liberty, which is representing the Little Sisters of the Poor, one of the groups that sued the government. “The government can find ways to give out contraception without hassling nuns.”\u003c/p>\n\u003cp>But at the same time, said Louise Melling, deputy legal director of the Americans Civil Liberties Union, “the opinion states clearly the need for women to receive full and equal coverage.”\u003c/p>\n\u003cp>Contraceptive advocates also pointed to a concurring opinion from Justices Sonia Sotomayor and Ruth Bader Ginsburg that stressed that the decision should not be read as approving coverage strategies that make it harder for women to get the benefits.\u003c/p>\n\u003cp>For example, they wrote, “Requiring standalone contraceptive-only coverage would leave in limbo all of the women now guaranteed seamless preventive-care coverage under the Affordable Care Act. And requiring that women affirmatively opt into such coverage would ‘impose precisely the kind of barrier to the delivery of preventive services that Congress sought to eliminate.’ ”\u003c/p>\n\u003cp>It remains unclear exactly what the lower courts might do. In an effort to break what was clearly a 4-4 deadlock, the court in March asked each side for \u003ca href=\"http://khn.org/news/supreme-court-asks-for-more-information-in-birth-control-case/\" target=\"_blank\">supplemental material\u003c/a> outlining any potential compromises. The decision Monday referred to those new briefs as suggesting that providing contraceptive coverage without requiring notice from religious employers “is feasible.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But Sotomayor and Ginsburg, in their concurring opinion, noted that “the Courts of Appeals remain free to reach the same conclusion or a different one on each of the questions presented by these cases.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>When it comes to the issue of religious rights versus no-cost contraception, the only thing the Supreme Court could agree on was not to decide the case.\u003c/p>\n\u003cp>In an \u003ca href=\"http://www.supremecourt.gov/opinions/15pdf/14-1418_8758.pdf\" target=\"_blank\">unsigned opinion\u003c/a> issued Monday, the court sent a series of cases back to a raft of federal appeals courts, with instructions for those courts and the parties in the lawsuits to try harder to work things out. “The Court expresses no view on the merits of the cases,” the opinion said.\u003c/p>\n\u003cp>At issue is the extent to which religiously affiliated employers (such as universities or hospitals) need to participate in the requirement under the Affordable Care Act for most employer health plans to\u003ca href=\"http://khn.org/news/supreme-court-takes-up-birth-control-access-again/\" target=\"_blank\"> provide no-cost contraception for women.\u003c/a>\u003c/p>\n\u003cp>The government made \u003ca href=\"http://www.hhs.gov/about/news/2014/08/22/administration-takes-steps-to-ensure-womens-continued-access-to-contraception-coverage.html\" target=\"_blank\">several changes to the rules\u003c/a> over the past four years in an attempt to accommodate the religious employers’ objections while still ensuring that female employees would get contraceptive coverage. But \u003ca href=\"http://www.becketfund.org/hhsinformationcentral/\" target=\"_blank\">dozens of religious nonprofit employers sued anyway\u003c/a>, claiming that even the act of notifying the government of their objections (which would, in turn, trigger a requirement for the government to arrange coverage) made them “complicit” in providing a service they see as sinful.\u003c/p>\n\u003cp>The court’s opinion, and an \u003ca href=\"http://www.supremecourt.gov/orders/courtorders/051616zor1_g31h.pdf\" target=\"_blank\">accompanying order\u003c/a> on several similar cases that were awaiting a decision on whether the high court would take them up, erased all the lower appeals court rulings, all but one of which had sided with the government. That appeared at first glance to put at risk coverage for contraceptives for tens of thousands of employees of the organizations that filed suit.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>However, the court made clear in its opinion that because the employers who have sued have already in effect notified the government of their objections, the government can rely “on this notice, to the extent it considers it necessary, to facilitate the provision of full contraceptive coverage going forward.”\u003c/p>\n\u003cp>At the same time, however, the opinion said the government “may not impose taxes or penalties on petitioners for failure to provide the relevant notice.”\u003c/p>\n\u003cp>The goal, the justices wrote, is that both sides “should be afforded an opportunity to arrive at an approach going forward that accommodates petitions’ religious exercise while at the same time ensuring that women covered by petitioners’ health plans ‘receive full and equal health coverage, including contraceptive coverage.’ ”\u003c/p>\n\u003cp>Both sides in the dispute claimed at least a partial victory.\u003c/p>\n\u003cp>“From our point of view this is a win for religious liberty,” said Mark Rienzi, a senior counsel for the Becket Fund for Religious Liberty, which is representing the Little Sisters of the Poor, one of the groups that sued the government. “The government can find ways to give out contraception without hassling nuns.”\u003c/p>\n\u003cp>But at the same time, said Louise Melling, deputy legal director of the Americans Civil Liberties Union, “the opinion states clearly the need for women to receive full and equal coverage.”\u003c/p>\n\u003cp>Contraceptive advocates also pointed to a concurring opinion from Justices Sonia Sotomayor and Ruth Bader Ginsburg that stressed that the decision should not be read as approving coverage strategies that make it harder for women to get the benefits.\u003c/p>\n\u003cp>For example, they wrote, “Requiring standalone contraceptive-only coverage would leave in limbo all of the women now guaranteed seamless preventive-care coverage under the Affordable Care Act. And requiring that women affirmatively opt into such coverage would ‘impose precisely the kind of barrier to the delivery of preventive services that Congress sought to eliminate.’ ”\u003c/p>\n\u003cp>It remains unclear exactly what the lower courts might do. In an effort to break what was clearly a 4-4 deadlock, the court in March asked each side for \u003ca href=\"http://khn.org/news/supreme-court-asks-for-more-information-in-birth-control-case/\" target=\"_blank\">supplemental material\u003c/a> outlining any potential compromises. The decision Monday referred to those new briefs as suggesting that providing contraceptive coverage without requiring notice from religious employers “is feasible.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But Sotomayor and Ginsburg, in their concurring opinion, noted that “the Courts of Appeals remain free to reach the same conclusion or a different one on each of the questions presented by these cases.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "'Highly Uncertain' If Prescription Drug Ballot Initiative Will Save California Money",
"title": "'Highly Uncertain' If Prescription Drug Ballot Initiative Will Save California Money",
"headTitle": "State of Health | KQED News",
"content": "\u003cp>It is “highly uncertain” how much money the state of California would save if a ballot measure to cap drug prices passes in November — and it might not save money at all. That’s the key finding in a preliminary report by the Legislative Analyst’s Office.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I guarantee you won’t get the VA price, because the VA price will cease to exist. Drug companies are not going to take that kind of loss.'\u003ccite>Jeffrey McCombs, USC health economist\u003c/cite>\u003c/aside>\n\u003cp>The ballot initiative, known as the\u003ca href=\"https://oag.ca.gov/system/files/initiatives/pdfs/15-0009%20(Prescription%20Drug%20Costs).pdf\" target=\"_blank\"> Drug Price Relief Act\u003c/a>, would prohibit the state from paying more for a prescription drug than the lowest price paid by the U.S. Department of Veterans Affairs. The VA is thought by proponents of the measure to get the best bargains from drug companies.\u003c/p>\n\u003cp>But the financial impact on the state is unclear, the analyst’s office said, for two reasons.\u003c/p>\n\u003cp>One, the lowest prices paid by the VA are not known and there’s no guarantee they will be revealed to the public — or to state officials.\u003c/p>\n\u003cp>Two, it’s unclear how drug companies would react if the measure became law: The companies might, for example, raise prices on the VA, nullifying the intended effect.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The VA does publish drug prices, but has not confirmed those prices are the lowest it pays, the analyst’s report noted. Without that information, the Department of Health Care Services could not know whether the prices paid by state agencies equaled what the VA was paying. Under the measure, it would be the department’s job to calculate the net cost of drugs — including rebates and discounts — for state health programs.\u003c/p>\n\u003cp>The analyst’s office has tried to verify the lowest prices, but the VA wouldn’t provide the information, Ben Johnson, a fiscal and policy analyst at analyst’s office, told state lawmakers in an informational hearing on the ballot initiative Tuesday. Drug manufacturers often require confidentiality clauses in price negotiations.\u003c/p>\n\u003cp>The report echoes one of the main arguments made by opponents of the measure, who say it would be difficult or impossible to implement if the state doesn’t know the lowest prices paid by the VA.\u003c/p>\n\u003cp>In the most recent fiscal year, state health programs spent about $4.2 billion on prescription drugs. However, the figure excludes drug spending by Medi-Cal managed care plans, which account for 77 percent of total Medi-Cal enrollment.\u003c/p>\n\u003cp>[contextly_sidebar id=\"uYjl4qMwAU9X6AOqiY3sNQtOX192cv1y\"]The ballot initiative is intended to benefit nearly 5 million Californians, mostly Medi-Cal fee for service enrollees, public employees and retirees. It would not apply to the 10.3 million state residents enrolled in Medi-Cal managed care.\u003c/p>\n\u003cp>Even if the VA’s lowest prices could be identified and the measure enforced, according to the report, drug manufacturers would be free to respond in various ways.\u003c/p>\n\u003cp>They could refuse to offer VA-level prices to the state. They could offer the state the same reduced prices they charge the VA and then raise the prices on other drugs purchased by the state but not by the VA. Or, they could raise VA prices.\u003c/p>\n\u003cp>The last has been tried before, with success. Prof. Jeffrey McCombs, a health economist at the University of Southern California Schaeffer Center for Health Policy and Economics, said that in the early 1990s, Congress passed a law requiring pharmaceutical companies to give Medicaid the same discounts they gave the VA.\u003c/p>\n\u003cp>In response, drug companies raised prices, and the discounts evaporated. Congress then eliminated the link between VA and Medicaid pricing.\u003c/p>\n\u003cp>“I guarantee you won’t get the VA price because the VA price will cease to exist,” McCombs said. “Drug companies are not going to take that kind of loss.”\u003c/p>\n\u003cp>[contextly_sidebar id=\"1f5eym6MAgB6NPX4rRq4eOwJhhkhtPvN\"]The Drug Price Relief Act is sponsored by the Los Angeles-based AIDS Healthcare Foundation.\u003c/p>\n\u003cp>At Tuesday’s State House hearing, Assemblyman David Chiu, D-San Francisco, said the measure was important because the legislature has failed to address soaring drug prices and now voters will get a say.\u003c/p>\n\u003cp>“Regardless of what happens in November, it is my hope that we are able to move this conversation forward,” Chiu said after pressing opponents of the initiative for alternative solutions.\u003c/p>\n\u003cp>Garry South, lead strategist for supporters of the measure, said the AIDS Healthcare Foundation pushed it because the high cost of prescription medications often means patients who need them can’t get them.\u003c/p>\n\u003cp>“What good is it to have a life-saving drug if people can’t afford to take it?” South said.\u003c/p>\n\u003cp>The California Nurses Association also endorses the measure. Zenei Cortez, the union’s co-president, said it offers the best chance to stop the drug industry’s “excessive greed.”\u003c/p>\n\u003cp>But some veterans and patient advocacy groups say the initiative could do more harm than good.\u003c/p>\n\u003cp>“This measure is misleading and unworkable,” Hollaine Hopkins, executive director of the Lupus Foundation of Southern California, said in a prepared statement. “It will lead to increased red tape and bureaucracy, and could actually increase costs for the state’s taxpayers.”\u003c/p>\n\u003cp>Kathy Fairbanks, spokeswoman for Californians Against the Misleading Rx Measure, the lead group opposing the initiative, said it could actually increase drug prices and lead to higher insurance premiums. The group is mostly financed by pharmaceutical companies.\u003c/p>\n\u003cp>Fairbanks said the measure could invalidate existing rebate agreements between drug companies and the state, jacking up prescription costs by tens of millions of dollars.\u003c/p>\n\u003cp>In reply, South said that only the pharmaceutical companies have the power to hike drug prices. “These are not predictions; these are threats,” he said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Opponents of the measure had raised \u003ca href=\"http://www.fppc.ca.gov/transparency/top-contributors/nov-16-gen-v2.html\" target=\"_blank\">more than $58 million as of May 4\u003c/a>, according to the California Fair Political Practices Commission. The AIDS Healthcare Foundation has raised a little more than $4 million in support of the initiative.\u003c/p>\n\n",
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"excerpt": "A Nov. ballot measure caps state-paid drug prices to the lowest paid by the Veteran's Association. Problem: The VA won’t say what those prices are.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>It is “highly uncertain” how much money the state of California would save if a ballot measure to cap drug prices passes in November — and it might not save money at all. That’s the key finding in a preliminary report by the Legislative Analyst’s Office.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I guarantee you won’t get the VA price, because the VA price will cease to exist. Drug companies are not going to take that kind of loss.'\u003ccite>Jeffrey McCombs, USC health economist\u003c/cite>\u003c/aside>\n\u003cp>The ballot initiative, known as the\u003ca href=\"https://oag.ca.gov/system/files/initiatives/pdfs/15-0009%20(Prescription%20Drug%20Costs).pdf\" target=\"_blank\"> Drug Price Relief Act\u003c/a>, would prohibit the state from paying more for a prescription drug than the lowest price paid by the U.S. Department of Veterans Affairs. The VA is thought by proponents of the measure to get the best bargains from drug companies.\u003c/p>\n\u003cp>But the financial impact on the state is unclear, the analyst’s office said, for two reasons.\u003c/p>\n\u003cp>One, the lowest prices paid by the VA are not known and there’s no guarantee they will be revealed to the public — or to state officials.\u003c/p>\n\u003cp>Two, it’s unclear how drug companies would react if the measure became law: The companies might, for example, raise prices on the VA, nullifying the intended effect.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The VA does publish drug prices, but has not confirmed those prices are the lowest it pays, the analyst’s report noted. Without that information, the Department of Health Care Services could not know whether the prices paid by state agencies equaled what the VA was paying. Under the measure, it would be the department’s job to calculate the net cost of drugs — including rebates and discounts — for state health programs.\u003c/p>\n\u003cp>The analyst’s office has tried to verify the lowest prices, but the VA wouldn’t provide the information, Ben Johnson, a fiscal and policy analyst at analyst’s office, told state lawmakers in an informational hearing on the ballot initiative Tuesday. Drug manufacturers often require confidentiality clauses in price negotiations.\u003c/p>\n\u003cp>The report echoes one of the main arguments made by opponents of the measure, who say it would be difficult or impossible to implement if the state doesn’t know the lowest prices paid by the VA.\u003c/p>\n\u003cp>In the most recent fiscal year, state health programs spent about $4.2 billion on prescription drugs. However, the figure excludes drug spending by Medi-Cal managed care plans, which account for 77 percent of total Medi-Cal enrollment.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>The ballot initiative is intended to benefit nearly 5 million Californians, mostly Medi-Cal fee for service enrollees, public employees and retirees. It would not apply to the 10.3 million state residents enrolled in Medi-Cal managed care.\u003c/p>\n\u003cp>Even if the VA’s lowest prices could be identified and the measure enforced, according to the report, drug manufacturers would be free to respond in various ways.\u003c/p>\n\u003cp>They could refuse to offer VA-level prices to the state. They could offer the state the same reduced prices they charge the VA and then raise the prices on other drugs purchased by the state but not by the VA. Or, they could raise VA prices.\u003c/p>\n\u003cp>The last has been tried before, with success. Prof. Jeffrey McCombs, a health economist at the University of Southern California Schaeffer Center for Health Policy and Economics, said that in the early 1990s, Congress passed a law requiring pharmaceutical companies to give Medicaid the same discounts they gave the VA.\u003c/p>\n\u003cp>In response, drug companies raised prices, and the discounts evaporated. Congress then eliminated the link between VA and Medicaid pricing.\u003c/p>\n\u003cp>“I guarantee you won’t get the VA price because the VA price will cease to exist,” McCombs said. “Drug companies are not going to take that kind of loss.”\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>The Drug Price Relief Act is sponsored by the Los Angeles-based AIDS Healthcare Foundation.\u003c/p>\n\u003cp>At Tuesday’s State House hearing, Assemblyman David Chiu, D-San Francisco, said the measure was important because the legislature has failed to address soaring drug prices and now voters will get a say.\u003c/p>\n\u003cp>“Regardless of what happens in November, it is my hope that we are able to move this conversation forward,” Chiu said after pressing opponents of the initiative for alternative solutions.\u003c/p>\n\u003cp>Garry South, lead strategist for supporters of the measure, said the AIDS Healthcare Foundation pushed it because the high cost of prescription medications often means patients who need them can’t get them.\u003c/p>\n\u003cp>“What good is it to have a life-saving drug if people can’t afford to take it?” South said.\u003c/p>\n\u003cp>The California Nurses Association also endorses the measure. Zenei Cortez, the union’s co-president, said it offers the best chance to stop the drug industry’s “excessive greed.”\u003c/p>\n\u003cp>But some veterans and patient advocacy groups say the initiative could do more harm than good.\u003c/p>\n\u003cp>“This measure is misleading and unworkable,” Hollaine Hopkins, executive director of the Lupus Foundation of Southern California, said in a prepared statement. “It will lead to increased red tape and bureaucracy, and could actually increase costs for the state’s taxpayers.”\u003c/p>\n\u003cp>Kathy Fairbanks, spokeswoman for Californians Against the Misleading Rx Measure, the lead group opposing the initiative, said it could actually increase drug prices and lead to higher insurance premiums. The group is mostly financed by pharmaceutical companies.\u003c/p>\n\u003cp>Fairbanks said the measure could invalidate existing rebate agreements between drug companies and the state, jacking up prescription costs by tens of millions of dollars.\u003c/p>\n\u003cp>In reply, South said that only the pharmaceutical companies have the power to hike drug prices. “These are not predictions; these are threats,” he said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Opponents of the measure had raised \u003ca href=\"http://www.fppc.ca.gov/transparency/top-contributors/nov-16-gen-v2.html\" target=\"_blank\">more than $58 million as of May 4\u003c/a>, according to the California Fair Political Practices Commission. The AIDS Healthcare Foundation has raised a little more than $4 million in support of the initiative.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Must California's Special Ed Students Be Vaccinated? State Won't Say",
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"content": "\u003cp>Let the courts decide.\u003c/p>\n\u003cp>That appears to be the stance of the California Department of Education as state regulators have so far declined to answer pleas from school districts to clarify what California’s new vaccination law means for the 700,000 students who receive special education services.\u003c/p>\n\u003caside class=\"pullquote alignright\">Tension between state law mandating vaccines for virtually all students and federal law requiring services for special ed students \u003c/aside>\n\u003cp>Known as \u003ca class=\"external\" href=\"http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160SB277\" target=\"_blank\">Senate Bill 277\u003c/a>, the state law makes California one of \u003ca class=\"external\" href=\"http://www.ncsl.org/research/health/school-immunization-exemption-state-laws.aspx\" target=\"_blank\">three\u003c/a> states to permit exemptions to school vaccinations only for medical reasons.\u003c/p>\n\u003cp>Gone are exemptions based on religious or personal beliefs. The law says all public and private school students must be vaccinated against 10 communicable diseases unless they have a medical exemption, they are home-schooled or they are enrolled in independent study with no classroom instruction.\u003c/p>\n\u003cp>With school districts beginning to enforce the law on July 1, legal experts say a conflict is likely to arise between the state mandate and the federal Individuals with Disabilities Education Act, which says students who qualify for special education services, such as intensive reading interventions that are provided in general classrooms, must receive those services. A conflict also has the potential to unite two impassioned groups of parents — those who oppose vaccinations and those who insist on the right of students to receive special education services in mainstream classrooms, attorneys said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[contextly_sidebar id=\"RzCoOu28F4oCnl3RdfxSSMmp01KRQ7iw\"]But what if the special education student is unvaccinated? Would that student be allowed to attend school? Or would an unvaccinated special education student have to receive services at home? Lawyers have lined up on both sides of the issue, offering conflicting opinions on how the state law intends school districts to carry out its mandate. It’s an argument that lawyers on both sides say is likely to end up in court.\u003c/p>\n\u003cp>The California Department of Education has said it will not be providing guidance on interpreting the new law, although it typically does so with new legislation, said Greg Rhoten, chairman of the Special Education Local Plan Area Administrators of California, which represents special education programs in the state. Rhoten said he asked two experts -- Fred Balcom, the director of the special education division of the California Department of Education who retired last year, and Chris Drouin, now the interim director of special education -- for guidance from the department and was told by both that none would be forthcoming.\u003c/p>\n\u003cp>He said he was told to follow guidance from the California Department of Public Health. “That wasn’t helpful to us,” Rhoten said, noting that public health department officials are not likely to be well-versed in special education law.\u003c/p>\n\u003cp>“I assume the state is trying to be careful about assuming risk for interpretation of the law,” which could make the department a party to a lawsuit, Rhoten said. “In the end, it’s the implementers,” he said, referring to the school districts. “They’re the ones who have to make the calls and do their best.”\u003c/p>\n\u003cp>In lieu of state guidance, districts have hired lawyers or turned to their general counsel for advice on how to proceed. Los Angeles Unified School District, which serves more than 640,000 K-12 students, said that on the advice of legal counsel, the district \u003ca href=\"http://edsource.org/2016/some-districts-exempt-students-in-special-ed-from-vaccination-law/92868\">will not require\u003c/a> students in special education to comply with required immunizations if that requirement would prevent them from getting services, including instruction in general education classrooms, to which they are legally entitled.\u003c/p>\n\u003cp>The California Department of Education referred media inquiries about the vaccination law to the California Department of Public Health, which in turn, referred questioners to its \u003ca class=\"external\" href=\"http://www.shotsforschool.org/laws/sb277faq/\" target=\"_blank\">Senate Bill 277 Frequently Asked Questions\u003c/a> web page. Last month, the department quietly posted \u003ca class=\"external\" href=\"http://www.shotsforschool.org/laws/sb277faq/#Q3A\" target=\"_blank\">an update\u003c/a> that had been long anticipated by districts, but the information fell short of providing helpful guidance, some lawyers said.\u003c/p>\n\u003cp>[contextly_sidebar id=\"8uBPZ6s0m8Np0oB5t2hQs51ACsD2QKrY\"]In describing students who have individualized education programs through special education, the update explained in words underlined for emphasis that “parents or guardians must continue to provide immunization records for these students to their schools, and schools must continue to maintain and report records of immunizations that have been received for these students.”\u003c/p>\n\u003cp>But does “continue to provide immunization records” mean that students in special education must be vaccinated? Ronald Wenkart, general counsel for the Orange County Office of Education, says it does. “You wouldn’t have a record if you were not immunized,” said Wenkart, who has become a bit of a Kremlinologist in trying to decipher the text of the law and the public health department updates. His office has advised districts that the intention of the law — to improve immunization rates — calls for all students who receive special education services to be vaccinated, unless they have a medical exemption.\u003c/p>\n\u003cp>“This is about the same guidance we got to begin with,” said Paul Lavigne, executive director of the Greater Anaheim Special Education Local Plan Area. “The law is vague on it. It says students need to receive IEP services but it also says they need to be vaccinated. More guidance would be great.”\u003c/p>\n\u003cp>“I would have hoped that if the state were to clarify this, they would provide a little more specific clarification than that,” said Jonathan Read, a partner at the law firm Fagen Friedman & Fulfrost.\u003c/p>\n\u003cp>At the same time, a March 1 revision to the California Department of Education Audit Guide, which instructs auditors how to monitor district compliance with the law, states that auditors who are checking on immunization compliance \u003ca class=\"external\" href=\"https://www.documentcloud.org/documents/2822871-2015-16-Supplemental-Audit-Guide-March-2016-PDF-1.html#document/p44/a292701\" target=\"_blank\">should exclude\u003c/a> students who have individualized education programs and receive special education services.\u003c/p>\n\u003cp>Wenkart said the audit guidance would create further confusion. “That will give people the false impression that these kids don’t have to be vaccinated,” he said.\u003c/p>\n\u003cp>With this much uncertainty, the issue will likely make its way to court, said Rhoten of the statewide special education association. “What happens is that case law gets made,” he said.\u003c/p>\n\u003cp>Rhoten offered this scenario: A district decides that an unvaccinated special education student must be taught at home. The student’s parents file a complaint, arguing that their child is not receiving a “free and appropriate education” in the least restrictive environment. The matter goes before an administrative judge in a due process hearing. The judge considers the student’s right to special education services as well as the school’s obligation to protect the health and safety of other students and staff. One way or another, a ruling is made.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“Then things get decided,” Rhoten said.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Let the courts decide.\u003c/p>\n\u003cp>That appears to be the stance of the California Department of Education as state regulators have so far declined to answer pleas from school districts to clarify what California’s new vaccination law means for the 700,000 students who receive special education services.\u003c/p>\n\u003caside class=\"pullquote alignright\">Tension between state law mandating vaccines for virtually all students and federal law requiring services for special ed students \u003c/aside>\n\u003cp>Known as \u003ca class=\"external\" href=\"http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160SB277\" target=\"_blank\">Senate Bill 277\u003c/a>, the state law makes California one of \u003ca class=\"external\" href=\"http://www.ncsl.org/research/health/school-immunization-exemption-state-laws.aspx\" target=\"_blank\">three\u003c/a> states to permit exemptions to school vaccinations only for medical reasons.\u003c/p>\n\u003cp>Gone are exemptions based on religious or personal beliefs. The law says all public and private school students must be vaccinated against 10 communicable diseases unless they have a medical exemption, they are home-schooled or they are enrolled in independent study with no classroom instruction.\u003c/p>\n\u003cp>With school districts beginning to enforce the law on July 1, legal experts say a conflict is likely to arise between the state mandate and the federal Individuals with Disabilities Education Act, which says students who qualify for special education services, such as intensive reading interventions that are provided in general classrooms, must receive those services. A conflict also has the potential to unite two impassioned groups of parents — those who oppose vaccinations and those who insist on the right of students to receive special education services in mainstream classrooms, attorneys said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>But what if the special education student is unvaccinated? Would that student be allowed to attend school? Or would an unvaccinated special education student have to receive services at home? Lawyers have lined up on both sides of the issue, offering conflicting opinions on how the state law intends school districts to carry out its mandate. It’s an argument that lawyers on both sides say is likely to end up in court.\u003c/p>\n\u003cp>The California Department of Education has said it will not be providing guidance on interpreting the new law, although it typically does so with new legislation, said Greg Rhoten, chairman of the Special Education Local Plan Area Administrators of California, which represents special education programs in the state. Rhoten said he asked two experts -- Fred Balcom, the director of the special education division of the California Department of Education who retired last year, and Chris Drouin, now the interim director of special education -- for guidance from the department and was told by both that none would be forthcoming.\u003c/p>\n\u003cp>He said he was told to follow guidance from the California Department of Public Health. “That wasn’t helpful to us,” Rhoten said, noting that public health department officials are not likely to be well-versed in special education law.\u003c/p>\n\u003cp>“I assume the state is trying to be careful about assuming risk for interpretation of the law,” which could make the department a party to a lawsuit, Rhoten said. “In the end, it’s the implementers,” he said, referring to the school districts. “They’re the ones who have to make the calls and do their best.”\u003c/p>\n\u003cp>In lieu of state guidance, districts have hired lawyers or turned to their general counsel for advice on how to proceed. Los Angeles Unified School District, which serves more than 640,000 K-12 students, said that on the advice of legal counsel, the district \u003ca href=\"http://edsource.org/2016/some-districts-exempt-students-in-special-ed-from-vaccination-law/92868\">will not require\u003c/a> students in special education to comply with required immunizations if that requirement would prevent them from getting services, including instruction in general education classrooms, to which they are legally entitled.\u003c/p>\n\u003cp>The California Department of Education referred media inquiries about the vaccination law to the California Department of Public Health, which in turn, referred questioners to its \u003ca class=\"external\" href=\"http://www.shotsforschool.org/laws/sb277faq/\" target=\"_blank\">Senate Bill 277 Frequently Asked Questions\u003c/a> web page. Last month, the department quietly posted \u003ca class=\"external\" href=\"http://www.shotsforschool.org/laws/sb277faq/#Q3A\" target=\"_blank\">an update\u003c/a> that had been long anticipated by districts, but the information fell short of providing helpful guidance, some lawyers said.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>In describing students who have individualized education programs through special education, the update explained in words underlined for emphasis that “parents or guardians must continue to provide immunization records for these students to their schools, and schools must continue to maintain and report records of immunizations that have been received for these students.”\u003c/p>\n\u003cp>But does “continue to provide immunization records” mean that students in special education must be vaccinated? Ronald Wenkart, general counsel for the Orange County Office of Education, says it does. “You wouldn’t have a record if you were not immunized,” said Wenkart, who has become a bit of a Kremlinologist in trying to decipher the text of the law and the public health department updates. His office has advised districts that the intention of the law — to improve immunization rates — calls for all students who receive special education services to be vaccinated, unless they have a medical exemption.\u003c/p>\n\u003cp>“This is about the same guidance we got to begin with,” said Paul Lavigne, executive director of the Greater Anaheim Special Education Local Plan Area. “The law is vague on it. It says students need to receive IEP services but it also says they need to be vaccinated. More guidance would be great.”\u003c/p>\n\u003cp>“I would have hoped that if the state were to clarify this, they would provide a little more specific clarification than that,” said Jonathan Read, a partner at the law firm Fagen Friedman & Fulfrost.\u003c/p>\n\u003cp>At the same time, a March 1 revision to the California Department of Education Audit Guide, which instructs auditors how to monitor district compliance with the law, states that auditors who are checking on immunization compliance \u003ca class=\"external\" href=\"https://www.documentcloud.org/documents/2822871-2015-16-Supplemental-Audit-Guide-March-2016-PDF-1.html#document/p44/a292701\" target=\"_blank\">should exclude\u003c/a> students who have individualized education programs and receive special education services.\u003c/p>\n\u003cp>Wenkart said the audit guidance would create further confusion. “That will give people the false impression that these kids don’t have to be vaccinated,” he said.\u003c/p>\n\u003cp>With this much uncertainty, the issue will likely make its way to court, said Rhoten of the statewide special education association. “What happens is that case law gets made,” he said.\u003c/p>\n\u003cp>Rhoten offered this scenario: A district decides that an unvaccinated special education student must be taught at home. The student’s parents file a complaint, arguing that their child is not receiving a “free and appropriate education” in the least restrictive environment. The matter goes before an administrative judge in a due process hearing. The judge considers the student’s right to special education services as well as the school’s obligation to protect the health and safety of other students and staff. One way or another, a ruling is made.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>\"A new study shows that drinking a glass of red wine is just as good as spending an hour at the gym.\"\u003c/p>\n\u003cp>If you're thinking, \"HUH?\" then you'll want to watch the latest from \u003ca href=\"https://www.youtube.com/watch?v=0Rnq1NpHdmw\" target=\"_blank\">Last Week Tonight \u003c/a>host John Oliver. His show Sunday night was devoted to science -- and how scientific studies are poorly reported by the mainstream press.\u003c/p>\n\u003cp>You'll recognize plenty of the headlines he cites. Does coffee cure everything or kill you? Numerous studies have either trumpeted its benefits or gravely warns of its risks.\u003c/p>\n\u003cp>\"Coffee today is like God in the Old Testament,\" Oliver says. \"It will either save you or kill you depending in how much you believe in its magical powers.\"\u003c/p>\n\u003cp>Oliver expounds on the dual problems of scientists under pressure to publish something new (\"There is no reward for being the second person to discover something; no Nobel Prize for fact checking\") and news programs/websites' desire to feed the public shareable headlines.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Remember this one: \"Scientists say smelling farts might prevent cancer\"?\u003c/p>\n\u003cp>It was based on a group of papers, \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/24755204\" target=\"_blank\">one of which was titled this way\u003c/a>:\u003c/p>\n\u003cblockquote>\u003cp>AP39, a novel mitochondria-targeted hydrogen sulfide donor, stimulates cellular bioenergetics, exerts cytoprotective effects and protects against the loss of mitochondrial DNA integrity in oxidatively stressed endothelial cells in vitro.\u003c/p>\u003c/blockquote>\n\u003cp>Hmmmm, that's not so eye-catching any more.\u003c/p>\n\u003cp>Gary Schwitzer publishes the nonprofit \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/24755204\" target=\"_blank\">HealthNewsReview,\u003c/a> which is exactly what it sounds like -- a site where knowledgeable people analyze claims both about health care interventions and the accuracy and completeness of health news stories. (Like many of my health/science reporter colleagues, I worry about stories I write showing up on the site.)\u003c/p>\n\u003cp>The massive attention these \"smelling farts\" studies received appear to have been sparked by a university press release, Schwitzer says, \"which used the word flatulence (five) words in.\"\u003c/p>\n\u003cp>Not so surprisingly, the word \"flatulence\" caught reporters' eyes. The day after the study was published, Schwitzer did a Google search and got 330,000 returns. That's a lot of coverage.\u003c/p>\n\u003cp>The press release ultimately \"increased click rates,\" Schwitzer said, \"and that's the coin of the realm.\"\u003c/p>\n\u003cp>It's worth noting that the scientists have added a disclaimer at the end of the \"flatulence\" \u003ca href=\"http://www.exeter.ac.uk/news/research/title_393168_en.html\" target=\"_blank\">press release\u003c/a> saying that the studies do not \"make any reference at all to cancer or to any health benefits from inhaling (sniffing) hydrogen sulfide.\" It was simply an early stage drug development project, they said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Oliver clearly explains that science is \"hugely important,\" but needs to be accurately reported, not \"twisted out of proportion and turned into morning show gossip.\"\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\"A new study shows that drinking a glass of red wine is just as good as spending an hour at the gym.\"\u003c/p>\n\u003cp>If you're thinking, \"HUH?\" then you'll want to watch the latest from \u003ca href=\"https://www.youtube.com/watch?v=0Rnq1NpHdmw\" target=\"_blank\">Last Week Tonight \u003c/a>host John Oliver. His show Sunday night was devoted to science -- and how scientific studies are poorly reported by the mainstream press.\u003c/p>\n\u003cp>You'll recognize plenty of the headlines he cites. Does coffee cure everything or kill you? Numerous studies have either trumpeted its benefits or gravely warns of its risks.\u003c/p>\n\u003cp>\"Coffee today is like God in the Old Testament,\" Oliver says. \"It will either save you or kill you depending in how much you believe in its magical powers.\"\u003c/p>\n\u003cp>Oliver expounds on the dual problems of scientists under pressure to publish something new (\"There is no reward for being the second person to discover something; no Nobel Prize for fact checking\") and news programs/websites' desire to feed the public shareable headlines.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Remember this one: \"Scientists say smelling farts might prevent cancer\"?\u003c/p>\n\u003cp>It was based on a group of papers, \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/24755204\" target=\"_blank\">one of which was titled this way\u003c/a>:\u003c/p>\n\u003cblockquote>\u003cp>AP39, a novel mitochondria-targeted hydrogen sulfide donor, stimulates cellular bioenergetics, exerts cytoprotective effects and protects against the loss of mitochondrial DNA integrity in oxidatively stressed endothelial cells in vitro.\u003c/p>\u003c/blockquote>\n\u003cp>Hmmmm, that's not so eye-catching any more.\u003c/p>\n\u003cp>Gary Schwitzer publishes the nonprofit \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/24755204\" target=\"_blank\">HealthNewsReview,\u003c/a> which is exactly what it sounds like -- a site where knowledgeable people analyze claims both about health care interventions and the accuracy and completeness of health news stories. (Like many of my health/science reporter colleagues, I worry about stories I write showing up on the site.)\u003c/p>\n\u003cp>The massive attention these \"smelling farts\" studies received appear to have been sparked by a university press release, Schwitzer says, \"which used the word flatulence (five) words in.\"\u003c/p>\n\u003cp>Not so surprisingly, the word \"flatulence\" caught reporters' eyes. The day after the study was published, Schwitzer did a Google search and got 330,000 returns. That's a lot of coverage.\u003c/p>\n\u003cp>The press release ultimately \"increased click rates,\" Schwitzer said, \"and that's the coin of the realm.\"\u003c/p>\n\u003cp>It's worth noting that the scientists have added a disclaimer at the end of the \"flatulence\" \u003ca href=\"http://www.exeter.ac.uk/news/research/title_393168_en.html\" target=\"_blank\">press release\u003c/a> saying that the studies do not \"make any reference at all to cancer or to any health benefits from inhaling (sniffing) hydrogen sulfide.\" It was simply an early stage drug development project, they said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Oliver clearly explains that science is \"hugely important,\" but needs to be accurately reported, not \"twisted out of proportion and turned into morning show gossip.\"\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Hospital Discharge Is One of the Most Dangerous Times for Patients",
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"content": "\u003cp>Within two weeks of Joyce Oyler’s discharge from the hospital, sores developed in her mouth and throat, and blood began seeping from her nose and bowels.\u003c/p>\n\u003cp>Her daughter traced the source to the medicine bottles in Oyler’s home in St. Joseph, Missouri. One drug that keeps heart patients like Oyler from retaining fluids was missing. In its place was a toxic drug with a similar name but different purpose, primarily to treat cancer and severe arthritis. The label said to take it daily.\u003c/p>\n\u003cp>“I gathered all her medicine, and as soon as I saw that bottle, I knew she couldn’t come back from this,” said the daughter, Kristin Sigg, an oncology nurse. “There were many layers and mistakes made after she left the hospital. It should have been caught about five different ways.”\u003c/p>\n\u003cp>Oyler’s death occurred at one of the most dangerous junctures in medical care: when patients leave the hospital. Bad coordination often plagues patients’ transitions to the care of home health agencies, as well as to nursing homes and other professionals charged with helping them recuperate, studies show.\u003c/p>\n\u003cp>“Poor transitional care is a huge, huge issue for everybody, but especially for older people with complex needs,” said Alicia Arbaje, an assistant professor at the Johns Hopkins School of Medicine in Baltimore. “The most risky transition is from hospital to home with the additional need for home care services, and that’s the one we know the least about.”\u003c/p>\n\u003cfigure id=\"attachment_179754\" class=\"wp-caption aligncenter\" style=\"max-width: 1600px\">\u003cimg class=\"size-full wp-image-179754\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/042216-Health-Meds-3.jpg\" alt='Joyce Oyler, left, died because of medication mistakes by a Missouri pharmacy and home health agency. Her daughter, holding the photo of her mother and aunt, says the error \"should have been caught about five different ways.\" ' width=\"1600\" height=\"1068\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3.jpg 1600w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-1440x961.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-1180x788.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-960x641.jpg 960w\" sizes=\"(max-width: 1600px) 100vw, 1600px\">\u003cfigcaption class=\"wp-caption-text\">Joyce Oyler, left, died because of medication mistakes by a Missouri pharmacy and home health agency. Her daughter, holding the photo of her mother and aunt, says the error \"should have been caught about five different ways.\" \u003ccite>(Travis Young/Austin Walsh Studio/2016 for KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Medication mistakes like the one in Oyler’s case — which, according to court records, slipped past both her pharmacist and home health nurses — are in fact one of the \u003ca href=\"https://psnet.ahrq.gov/primers/primer/11\" target=\"_blank\">most common complications\u003c/a> for discharged patients. The \u003ca href=\"http://health.gov/hcq/ade-action-plan.asp\" target=\"_blank\">federal government views\u003c/a> them as “a major patient safety and public health issue,” and a Kaiser Health News analysis of inspection records shows such errors are frequently missed by home health agencies.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Between January 2010 and July 2015, the analysis found, inspectors identified 3,016 home health agencies — nearly a quarter of all those examined by Medicare — that had inadequately reviewed or tracked medications for new patients. In some cases, nurses failed to realize that patients were taking potentially dangerous combinations of drugs, risking abnormal heart rhythms, bleeding, kidney damage and seizures.\u003c/p>\n\u003cp>The variety of providers that patients may use after a hospitalization — including pharmacies, urgent care clinics and a range of specialists — creates fertile ground for error, said Don Goldmann, chief medical and scientific officer at the nonprofit Institute for Healthcare Improvement. “This episodic care at different places at different times is not designed to keep the overall safety of the patient in mind,” Goldmann said.\u003c/p>\n\u003cp>One factor is the lack of organization and communication among these other parts of the medical system. Of the $30 billion that Congress appropriated to help shift the system to electronic medical records — to ensure better coordination of care and reduce errors across the board — none went to nursing homes, rehabilitation facilities or providers working with individuals in their homes.\u003c/p>\n\u003cfigure id=\"attachment_179755\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-179755\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/042216-Health-Meds-4-400x599.jpg\" alt=\"Sigg says many people don’t know that lapses in communication sharing among doctors can lead to danger for patients.\" width=\"400\" height=\"599\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-400x599.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-800x1199.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-768x1151.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-960x1438.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4.jpg 1068w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Sigg says many people don’t know that lapses in communication sharing among doctors can lead to danger for patients. \u003ccite>(Travis Young/Austin Walsh Studio/2016 for KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"In retrospect, that might have been a mistake,” said Robert Wachter, a professor at the University of California, San Francisco who studies patient safety. “The systems are not adequately connected.”\u003c/p>\n\u003cp>At any point, problems can occur:\u003c/p>\n\u003cp>— At hospitals, where federal data show that fewer than half of patients say they confidently understood the instructions of how to care for themselves after discharge.\u003c/p>\n\u003cp>— In nursing homes, where case management frequently comes up short. A \u003ca href=\"http://oig.hhs.gov/oei/reports/oei-02-09-00201.pdf\" target=\"_blank\">2013 government report\u003c/a> found more than a third of facilities did not properly assess patients’ needs, devise a plan for their care and then follow it through.\u003c/p>\n\u003cp>— At pharmacies, where counseling and reviewing drugs with patients is often pro forma, and better exertions do not always help. A \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/22751755\" target=\"_blank\">2012 study\u003c/a> in the journal Annals of Internal Medicine found that half of patients had a clinically significant medication error within a month of discharge from two highly regarded academic medical centers. The study found that these errors persisted even when pharmacists took a more active role in counseling the patient and reviewing the prescription.\u003c/p>\n\u003cp>— And at home health agencies, where failures to create and execute a care plan are the most common issues government inspectors identify, followed by deficient medication review, according to KHN’s analysis. Over the first half of this decade, 1,591 agencies — one in eight — had a defect inspectors considered so substantial that it warranted the agencies’ removal from the Medicare program unless the lapses were remedied.\u003c/p>\n\u003cp>\u003cstrong>‘Devastating’ Cancer Drug\u003c/strong>\u003c/p>\n\u003cp>Oyler’s death in October 2013 shows how a fatal mistake can slip by multiple checkpoints. The 66-year-old retired safety manager left Heartland Regional Medical Center in St. Joseph after being treated for \u003ca href=\"https://www.nlm.nih.gov/medlineplus/heartfailure.html\" target=\"_blank\">congestive heart failure\u003c/a>, in which the heart fails to pump effectively, causing fluid build-up in the lungs, shortness of breath and swelling in the feet. She returned home as a hospital nurse telephoned the local Hy-Vee Pharmacy with eight new prescriptions. One was for the diuretic metolazone.\u003c/p>\n\u003cp>But the medications a pharmacy technician wrote down did not include metolazone. Instead it listed \u003ca href=\"https://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html\" target=\"_blank\">methotrexate\u003c/a>, which can damage blood cell counts, organs and the lining of the mouth, stomach and intestines. The drug is so potent that the Institute for Safe Medication Practices includes it among\u003ca href=\"https://www.ismp.org/communityRx/tools/ambulatoryhighalert.asp\" target=\"_blank\"> eight “high-alert” medications\u003c/a> with consequences so “devastating” that they warrant \u003ca href=\"https://www.ismp.org/hazardalerts/ha.pdf\" target=\"_blank\">special safeguards\u003c/a> against incorrect dispensing.\u003c/p>\n\u003cp>Oyler’s prescription included daily dosage instructions for the diuretic. Methotrexate is never supposed to be taken more than once or twice a week for patients not being treated for cancer, and almost always at a much lower dose.\u003c/p>\n\u003cfigure id=\"attachment_179781\" class=\"wp-caption alignleft\" style=\"max-width: 357px\">\u003cimg class=\"size-full wp-image-179781\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/Screen-Shot-2016-05-03-at-11.17.23-AM.png\" alt=\"Joyce Oyler’s prescription was written for a toxic drug instead of a common diuretic.\" width=\"357\" height=\"255\">\u003cfigcaption class=\"wp-caption-text\">Joyce Oyler’s prescription was written for a toxic drug instead of a common diuretic.\u003c/figcaption>\u003c/figure>\n\u003cp>“Here’s a drug that every patient, even if it’s on the refill, should get counseled on, why they’re taking methotrexate and how they’re taking it because of the mistakes of errors we’ve seen with the daily dosing rather than the weekly dosing,” said Allen Vaida, a pharmacist and executive vice president at the Institute for Safe Medication Practices.\u003c/p>\n\u003cp>In a court deposition taken as part of the lawsuit the family brought, Hy-Vee’s pharmacist blamed himself for not catching the error. “For whatever reason, on that certain day, that didn’t trigger with me,” he said. Hy-Vee argued that its safeguards were as strong as at other pharmacies, although the pharmacy manager admitted in a deposition that “quite honestly, there was a breakdown in the system.”\u003c/p>\n\u003cp>The family’s attorney, Leland Dempsey, said court evidence suggested the drug mix-up was made by the pharmacy technician who transcribed the prescription orders. “The pharmacy tech made numerous spelling errors on the drugs,” he said. “She had a dosage off on another drug.”\u003c/p>\n\u003cp>In February, a jury awarded Oyler’s family $2 million in damages from the pharmacy. The judge lowered the award to $125,000 because of Missouri’s cap for non-economic damages in medical malpractice cases. Hy-Vee declined to comment.\u003c/p>\n\u003cp>\u003cstrong>Nurses Overlook Prescription Mistake\u003c/strong>\u003c/p>\n\u003cp>Yet the error could have been caught right away as Oyler began getting care from Heartland’s home health care agency. Medicare requires home health agencies to examine details of a patient’s medications to ensure all the drugs match the prescriptions ordered, are being taken in the right dose and frequency, and don’t have negative interactions.\u003c/p>\n\u003cp>Less than a year before, Missouri state \u003ca href=\"http://health.mo.gov/cgi-bin/hcrs2.pl?facid=MO267064\" target=\"_blank\">inspectors had cited the agency\u003c/a> for inadequately reviewing medications for three patients, and the agency had pledged to make improvements, records show. Still, neither of two agency nurses who visited Oyler at home stopped her from taking the wrong drug.\u003c/p>\n\u003cp>“Why they didn’t catch it was beyond me,” her husband, Carl, said recently. “They had a printout from the hospital,” with every medication correctly listed. “It was all there,” he said.\u003c/p>\n\u003cfigure id=\"attachment_179753\" class=\"wp-caption aligncenter\" style=\"max-width: 1600px\">\u003cimg class=\"size-full wp-image-179753\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/042216-Health-Meds-2.jpg\" alt=\"Kristin Sigg looks at wedding photos that include her mother. \" width=\"1600\" height=\"1068\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2.jpg 1600w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-1440x961.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-1180x788.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-960x641.jpg 960w\" sizes=\"(max-width: 1600px) 100vw, 1600px\">\u003cfigcaption class=\"wp-caption-text\">Kristin Sigg looks at wedding photos that include her mother. \u003ccite>(Travis Young/Austin Walsh Studio/2016 for KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>After 18 days, her family took her to North Kansas City Hospital, where doctors determined that the methotrexate had irreparably damaged her bone marrow’s ability to create blood cells. She died three days later of multiple organ failure.\u003c/p>\n\u003cp>“By the time we got her into the emergency room, essentially she had no blood cell count,” her husband recounted. “It was irreversible. It was a gruesome, slow, painful way to die.”\u003c/p>\n\u003cp>Heartland Regional Medical Center paid Oyler’s family $225,000 in a settlement, court records show. Mosaic Life Care, the name by which Heartland now operates, said in a statement that it is “consistently improving processes and adopting new technologies to further reduce risks of errors and to improve communication.”\u003c/p>\n\u003cp>Nonetheless, last November inspectors again cited Heartland for failing to properly review medications for two patients.\u003c/p>\n\u003cp>“Most people don’t know this is a problem,” Sigg said. “They assume doctors are talking to each other, until they experience it, and it’s not the case.”\u003c/p>\n\u003cp>\u003cem>If you’d like to share your reaction to this article and your experience with a home health agency, you can contact Kaiser Health News. Send an email to patients@kff.org.\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This story was produced by \u003ca href=\"http://khn.org/\" target=\"_blank\">Kaiser Health News\u003c/a>, an editorially independent program of the \u003ca href=\"http://kff.org/\" target=\"\">Kaiser Family Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Within two weeks of Joyce Oyler’s discharge from the hospital, sores developed in her mouth and throat, and blood began seeping from her nose and bowels.\u003c/p>\n\u003cp>Her daughter traced the source to the medicine bottles in Oyler’s home in St. Joseph, Missouri. One drug that keeps heart patients like Oyler from retaining fluids was missing. In its place was a toxic drug with a similar name but different purpose, primarily to treat cancer and severe arthritis. The label said to take it daily.\u003c/p>\n\u003cp>“I gathered all her medicine, and as soon as I saw that bottle, I knew she couldn’t come back from this,” said the daughter, Kristin Sigg, an oncology nurse. “There were many layers and mistakes made after she left the hospital. It should have been caught about five different ways.”\u003c/p>\n\u003cp>Oyler’s death occurred at one of the most dangerous junctures in medical care: when patients leave the hospital. Bad coordination often plagues patients’ transitions to the care of home health agencies, as well as to nursing homes and other professionals charged with helping them recuperate, studies show.\u003c/p>\n\u003cp>“Poor transitional care is a huge, huge issue for everybody, but especially for older people with complex needs,” said Alicia Arbaje, an assistant professor at the Johns Hopkins School of Medicine in Baltimore. “The most risky transition is from hospital to home with the additional need for home care services, and that’s the one we know the least about.”\u003c/p>\n\u003cfigure id=\"attachment_179754\" class=\"wp-caption aligncenter\" style=\"max-width: 1600px\">\u003cimg class=\"size-full wp-image-179754\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/042216-Health-Meds-3.jpg\" alt='Joyce Oyler, left, died because of medication mistakes by a Missouri pharmacy and home health agency. Her daughter, holding the photo of her mother and aunt, says the error \"should have been caught about five different ways.\" ' width=\"1600\" height=\"1068\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3.jpg 1600w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-1440x961.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-1180x788.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-3-960x641.jpg 960w\" sizes=\"(max-width: 1600px) 100vw, 1600px\">\u003cfigcaption class=\"wp-caption-text\">Joyce Oyler, left, died because of medication mistakes by a Missouri pharmacy and home health agency. Her daughter, holding the photo of her mother and aunt, says the error \"should have been caught about five different ways.\" \u003ccite>(Travis Young/Austin Walsh Studio/2016 for KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Medication mistakes like the one in Oyler’s case — which, according to court records, slipped past both her pharmacist and home health nurses — are in fact one of the \u003ca href=\"https://psnet.ahrq.gov/primers/primer/11\" target=\"_blank\">most common complications\u003c/a> for discharged patients. The \u003ca href=\"http://health.gov/hcq/ade-action-plan.asp\" target=\"_blank\">federal government views\u003c/a> them as “a major patient safety and public health issue,” and a Kaiser Health News analysis of inspection records shows such errors are frequently missed by home health agencies.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Between January 2010 and July 2015, the analysis found, inspectors identified 3,016 home health agencies — nearly a quarter of all those examined by Medicare — that had inadequately reviewed or tracked medications for new patients. In some cases, nurses failed to realize that patients were taking potentially dangerous combinations of drugs, risking abnormal heart rhythms, bleeding, kidney damage and seizures.\u003c/p>\n\u003cp>The variety of providers that patients may use after a hospitalization — including pharmacies, urgent care clinics and a range of specialists — creates fertile ground for error, said Don Goldmann, chief medical and scientific officer at the nonprofit Institute for Healthcare Improvement. “This episodic care at different places at different times is not designed to keep the overall safety of the patient in mind,” Goldmann said.\u003c/p>\n\u003cp>One factor is the lack of organization and communication among these other parts of the medical system. Of the $30 billion that Congress appropriated to help shift the system to electronic medical records — to ensure better coordination of care and reduce errors across the board — none went to nursing homes, rehabilitation facilities or providers working with individuals in their homes.\u003c/p>\n\u003cfigure id=\"attachment_179755\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"size-thumbnail wp-image-179755\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/042216-Health-Meds-4-400x599.jpg\" alt=\"Sigg says many people don’t know that lapses in communication sharing among doctors can lead to danger for patients.\" width=\"400\" height=\"599\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-400x599.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-800x1199.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-768x1151.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4-960x1438.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-4.jpg 1068w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Sigg says many people don’t know that lapses in communication sharing among doctors can lead to danger for patients. \u003ccite>(Travis Young/Austin Walsh Studio/2016 for KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"In retrospect, that might have been a mistake,” said Robert Wachter, a professor at the University of California, San Francisco who studies patient safety. “The systems are not adequately connected.”\u003c/p>\n\u003cp>At any point, problems can occur:\u003c/p>\n\u003cp>— At hospitals, where federal data show that fewer than half of patients say they confidently understood the instructions of how to care for themselves after discharge.\u003c/p>\n\u003cp>— In nursing homes, where case management frequently comes up short. A \u003ca href=\"http://oig.hhs.gov/oei/reports/oei-02-09-00201.pdf\" target=\"_blank\">2013 government report\u003c/a> found more than a third of facilities did not properly assess patients’ needs, devise a plan for their care and then follow it through.\u003c/p>\n\u003cp>— At pharmacies, where counseling and reviewing drugs with patients is often pro forma, and better exertions do not always help. A \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/22751755\" target=\"_blank\">2012 study\u003c/a> in the journal Annals of Internal Medicine found that half of patients had a clinically significant medication error within a month of discharge from two highly regarded academic medical centers. The study found that these errors persisted even when pharmacists took a more active role in counseling the patient and reviewing the prescription.\u003c/p>\n\u003cp>— And at home health agencies, where failures to create and execute a care plan are the most common issues government inspectors identify, followed by deficient medication review, according to KHN’s analysis. Over the first half of this decade, 1,591 agencies — one in eight — had a defect inspectors considered so substantial that it warranted the agencies’ removal from the Medicare program unless the lapses were remedied.\u003c/p>\n\u003cp>\u003cstrong>‘Devastating’ Cancer Drug\u003c/strong>\u003c/p>\n\u003cp>Oyler’s death in October 2013 shows how a fatal mistake can slip by multiple checkpoints. The 66-year-old retired safety manager left Heartland Regional Medical Center in St. Joseph after being treated for \u003ca href=\"https://www.nlm.nih.gov/medlineplus/heartfailure.html\" target=\"_blank\">congestive heart failure\u003c/a>, in which the heart fails to pump effectively, causing fluid build-up in the lungs, shortness of breath and swelling in the feet. She returned home as a hospital nurse telephoned the local Hy-Vee Pharmacy with eight new prescriptions. One was for the diuretic metolazone.\u003c/p>\n\u003cp>But the medications a pharmacy technician wrote down did not include metolazone. Instead it listed \u003ca href=\"https://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html\" target=\"_blank\">methotrexate\u003c/a>, which can damage blood cell counts, organs and the lining of the mouth, stomach and intestines. The drug is so potent that the Institute for Safe Medication Practices includes it among\u003ca href=\"https://www.ismp.org/communityRx/tools/ambulatoryhighalert.asp\" target=\"_blank\"> eight “high-alert” medications\u003c/a> with consequences so “devastating” that they warrant \u003ca href=\"https://www.ismp.org/hazardalerts/ha.pdf\" target=\"_blank\">special safeguards\u003c/a> against incorrect dispensing.\u003c/p>\n\u003cp>Oyler’s prescription included daily dosage instructions for the diuretic. Methotrexate is never supposed to be taken more than once or twice a week for patients not being treated for cancer, and almost always at a much lower dose.\u003c/p>\n\u003cfigure id=\"attachment_179781\" class=\"wp-caption alignleft\" style=\"max-width: 357px\">\u003cimg class=\"size-full wp-image-179781\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/Screen-Shot-2016-05-03-at-11.17.23-AM.png\" alt=\"Joyce Oyler’s prescription was written for a toxic drug instead of a common diuretic.\" width=\"357\" height=\"255\">\u003cfigcaption class=\"wp-caption-text\">Joyce Oyler’s prescription was written for a toxic drug instead of a common diuretic.\u003c/figcaption>\u003c/figure>\n\u003cp>“Here’s a drug that every patient, even if it’s on the refill, should get counseled on, why they’re taking methotrexate and how they’re taking it because of the mistakes of errors we’ve seen with the daily dosing rather than the weekly dosing,” said Allen Vaida, a pharmacist and executive vice president at the Institute for Safe Medication Practices.\u003c/p>\n\u003cp>In a court deposition taken as part of the lawsuit the family brought, Hy-Vee’s pharmacist blamed himself for not catching the error. “For whatever reason, on that certain day, that didn’t trigger with me,” he said. Hy-Vee argued that its safeguards were as strong as at other pharmacies, although the pharmacy manager admitted in a deposition that “quite honestly, there was a breakdown in the system.”\u003c/p>\n\u003cp>The family’s attorney, Leland Dempsey, said court evidence suggested the drug mix-up was made by the pharmacy technician who transcribed the prescription orders. “The pharmacy tech made numerous spelling errors on the drugs,” he said. “She had a dosage off on another drug.”\u003c/p>\n\u003cp>In February, a jury awarded Oyler’s family $2 million in damages from the pharmacy. The judge lowered the award to $125,000 because of Missouri’s cap for non-economic damages in medical malpractice cases. Hy-Vee declined to comment.\u003c/p>\n\u003cp>\u003cstrong>Nurses Overlook Prescription Mistake\u003c/strong>\u003c/p>\n\u003cp>Yet the error could have been caught right away as Oyler began getting care from Heartland’s home health care agency. Medicare requires home health agencies to examine details of a patient’s medications to ensure all the drugs match the prescriptions ordered, are being taken in the right dose and frequency, and don’t have negative interactions.\u003c/p>\n\u003cp>Less than a year before, Missouri state \u003ca href=\"http://health.mo.gov/cgi-bin/hcrs2.pl?facid=MO267064\" target=\"_blank\">inspectors had cited the agency\u003c/a> for inadequately reviewing medications for three patients, and the agency had pledged to make improvements, records show. Still, neither of two agency nurses who visited Oyler at home stopped her from taking the wrong drug.\u003c/p>\n\u003cp>“Why they didn’t catch it was beyond me,” her husband, Carl, said recently. “They had a printout from the hospital,” with every medication correctly listed. “It was all there,” he said.\u003c/p>\n\u003cfigure id=\"attachment_179753\" class=\"wp-caption aligncenter\" style=\"max-width: 1600px\">\u003cimg class=\"size-full wp-image-179753\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/05/042216-Health-Meds-2.jpg\" alt=\"Kristin Sigg looks at wedding photos that include her mother. \" width=\"1600\" height=\"1068\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2.jpg 1600w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-1440x961.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-1180x788.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/05/042216-Health-Meds-2-960x641.jpg 960w\" sizes=\"(max-width: 1600px) 100vw, 1600px\">\u003cfigcaption class=\"wp-caption-text\">Kristin Sigg looks at wedding photos that include her mother. \u003ccite>(Travis Young/Austin Walsh Studio/2016 for KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>After 18 days, her family took her to North Kansas City Hospital, where doctors determined that the methotrexate had irreparably damaged her bone marrow’s ability to create blood cells. She died three days later of multiple organ failure.\u003c/p>\n\u003cp>“By the time we got her into the emergency room, essentially she had no blood cell count,” her husband recounted. “It was irreversible. It was a gruesome, slow, painful way to die.”\u003c/p>\n\u003cp>Heartland Regional Medical Center paid Oyler’s family $225,000 in a settlement, court records show. Mosaic Life Care, the name by which Heartland now operates, said in a statement that it is “consistently improving processes and adopting new technologies to further reduce risks of errors and to improve communication.”\u003c/p>\n\u003cp>Nonetheless, last November inspectors again cited Heartland for failing to properly review medications for two patients.\u003c/p>\n\u003cp>“Most people don’t know this is a problem,” Sigg said. “They assume doctors are talking to each other, until they experience it, and it’s not the case.”\u003c/p>\n\u003cp>\u003cem>If you’d like to share your reaction to this article and your experience with a home health agency, you can contact Kaiser Health News. Send an email to patients@kff.org.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This story was produced by \u003ca href=\"http://khn.org/\" target=\"_blank\">Kaiser Health News\u003c/a>, an editorially independent program of the \u003ca href=\"http://kff.org/\" target=\"\">Kaiser Family Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Does Addiction Treatment Require A Higher Power?",
"title": "Does Addiction Treatment Require A Higher Power?",
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"content": "\u003cp>In the field of addiction treatment, already brimming with intensely personal and emotional debates, there may be nothing more controversial than the role of 12-step programs, which are based on Alcoholics Anonymous.\u003c/p>\n\u003cp>At least \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851049/\" target=\"_blank\">80 percent \u003c/a> of current American addiction treatment— for both alcohol and other drugs — is based on teaching patients the ideology of the steps and persuading them to become members and attend meetings for the rest of their lives.\u003c/p>\n\u003cp>Without question, many people believe strongly that AA and similar programs have saved their lives. But AA's reliance on a higher power, confession, prayer and proselytizing is so unlike treatment for other medical or psychological disorders that its predominance seems to call into question whether addiction is a disease at all.\u003c/p>\n\u003cp>I believe that addiction is a medical problem. I view addiction as a \u003ca href=\"http://www.theguardian.com/commentisfree/2016/apr/05/drug-addiction-treatment-learning-disorders\" target=\"_blank\">developmental disorder\u003c/a>, which is a position \u003ca href=\"https://www.minnpost.com/mental-health-addiction/2016/04/dr-joseph-lee-focusing-teen-opioid-use-helps-limit-adult-addiction\" target=\"_blank\">supported\u003c/a> by \u003ca href=\"https://www.drugabuse.gov/publications/drugfacts/understanding-drug-abuse-addiction\" target=\"_blank\">research\u003c/a>.\u003c/p>\n\u003cp>And while I don't have any objection to 12-step programs as self-help, I do think it's impossible to destigmatize addiction while also rendering it the only diagnosis in medicine for which the treatment is explicitly moral.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In fact, I would argue, the 12-step approach would be dismissed outright were it proposed as treatment for disorders such as depression, heart disease or schizophrenia. Until we recognize the discrepancy, I'm skeptical that we'll make substantial progress in treating addiction.\u003c/p>\n\u003cp>To understand why I believe this change in thinking is important, it's helpful to look at how the 12 steps came to dominate American addiction care, what the steps themselves really are and how they produced a system of care that, in my view and that of courts that have debated the issue, violates the First Amendment rights of some without having been proved more effective than less problematic alternatives.\u003c/p>\n\u003cp>AA was founded in \u003ca href=\"http://www.aa.org/pages/en_US/historical-data-the-birth-of-aa-and-its-growth-in-the-uscanada\" target=\"_blank\">1935\u003c/a>. At the time, many doctors had thrown up their hands and given up on treating people with addictions. When reports of AA's success became public, health professionals, not surprisingly, took note.\u003c/p>\n\u003cp>AA members who wanted to help others — which is part of the 12th step— also looked to the medical system as a way to be of service and to help the organization grow.\u003c/p>\n\u003cp>From the start, this approach wasn't without controversy. Indeed, AA itself recognized early on that people might try to profit from it. As a result, the organization's \u003ca href=\"http://www.aa.org/assets/en_US/en_tradition_longform.pdf\" target=\"_blank\">Eighth Tradition\u003c/a> states: \"Alcoholics Anonymous should remain forever nonprofessional. We define professionalism as the occupation of counseling alcoholics for fees or hire.\"\u003c/p>\n\u003cp>Despite the dictum, variations on the approach became the basis for an entire treatment model. In 1949, \u003ca href=\"https://www.hazelden.org/web/public/hazelden_history.page\" target=\"_blank\">Hazelden\u003c/a> was founded in Minnesota and became the grandfather of the 28-day residential rehab program. It was designed to provide intensive exposure to 12-step ideas through meetings, therapy groups and lectures. To this day, most American addiction treatment is based on what became known as the \"Minnesota Model,\" which also involves medical and psychiatric evaluation as well as family therapy.\u003c/p>\n\u003cp>But if you take a look at the \u003ca href=\"http://www.aa.org/assets/en_US/smf-121_en.pdf\">12 steps\u003c/a> themselves, it's easy to see why this form of therapy is unlike any other. The first step requires an admission of \"powerlessness\" over the addiction, the second a belief in a \"Higher Power\" that can restore you to \"sanity,\" the third a surrender to \"God as we understood Him.\"\u003c/p>\n\u003cp>Steps 4 through 10 involve taking a moral inventory and publicly confessing it to someone, asking God to remove your \"defects of character,\" then making amends for harm done.\u003c/p>\n\u003cp>If such steps were demanded of people in treatment for any other condition, they would likely argue that they were being treated as sinners rather than patients. Would you choose a psychiatrist who wanted to focus on your moral failings rather than your medical condition?\u003c/p>\n\u003cp>For addiction, however, being told by treatment providers that the only alternative to these steps, as an AA slogan has it, is \"jails, institutions or death,\" is mainstream medicine. And this remains the case, even though \u003ca href=\"http://www.smartrecovery.org/courts/court-mandated-attendance.htm\" target=\"_blank\">courts\u003c/a> that have entertained the question of whether mandating 12-step participation via the legal system violates the First Amendment separation of church and state have determined that it does.\u003c/p>\n\u003cp>Of course, some argue, so long as the 12-step approach works, who cares? One problem is that 12-step groups only seem to help a minority of people who find them amenable. According to a \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851049/\" target=\"_blank\">researcher\u003c/a> who has studied the groups for years, 70 percent of people who start drop out within six months. And, when compared \u003ca href=\"https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-5-75\" target=\"_blank\">head-to-head\u003c/a> with cognitive behavioral therapy and motivational enhancement therapy, 12-step approaches do no better.\u003c/p>\n\u003cp>Also, I would argue that elements of the 12-step ideology can be harmful to some people. For starters, the idea that there's no other way to recover can produce hopelessness in those who don't find the approach helpful. Second, the more you believe in the idea that addiction is a disease that you have no power over, the greater your risk of relapse, \u003ca href=\"http://onlinelibrary.wiley.com/store/10.1046/j.1360-0443.91.12s1.7.x/asset/j.1360-0443.91.12s1.7.x.pdf?v=1&t=inbvox18&s=a4429abd5e81009d63d97b3d099c0d5a4150bd9c\" target=\"_blank\">research\u003c/a> has found. Third, 12-step programs for people addicted to opioids typically discourage the use of medication. That restriction can be deadly since indefinite use of methadone or buprenorphine is the only approach known to reduce mortality by \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/add.13193/full?tid=a_inl\" target=\"_blank\">50 percent\u003c/a> or \u003ca href=\"http://www.nytimes.com/2015/07/20/opinion/every-drug-court-should-allow-methadone-treatment.html?login=email&tid=a_inl&_r=5\" target=\"_blank\">more\u003c/a>.\u003c/p>\n\u003cp>In my view, AA and treatment need to get amicably divorced. The social support provided by 12-step groups and the way they offer a sense of meaning and purpose can help some people with addictions. So, I believe, it makes sense for treatment providers to tell people about the programs and even encourage them to try a meeting or two, with the caveats that this is not the only way to get better and that membership doesn't qualify people to give medical advice\u003c/p>\n\u003cp>Let's let treatment be treatment and AA be AA. Think about it in the same way we view cancer care: Your support group isn't your oncologist. Each can play an important role in your wellbeing and survival, but cancer patients aren't experts in oncology just because they've had the disease.\u003c/p>\n\u003cp>Moreover, to truly get people to see addiction as a medical problem, addiction has to be treated by health professionals whose education needs to go far beyond their own experiences with recovery.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Maia Szalavitz's latest book,\u003c/em> Unbroken Brain,\u003cem> combines her personal story of addiction and recovery with a look at 25 years of science and research on addiction and treatment. She writes for TIME.com, \u003c/em>VICE, The New York Times, Scientific American Mind, Elle, Psychology Today and Marie Claire\u003cem> among others.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Does+Addiction+Treatment+Require+A+Higher+Power%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"excerpt": "Addiction is the only diagnosis in medicine where the treatment is explicitly moral, argues author Maia Szalavitz. This approach makes it impossible to destigmatize addiction.",
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"description": "Addiction is the only diagnosis in medicine where the treatment is explicitly moral, argues author Maia Szalavitz. This approach makes it impossible to destigmatize addiction.",
"title": "Does Addiction Treatment Require A Higher Power? | KQED",
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"headline": "Does Addiction Treatment Require A Higher Power?",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>In the field of addiction treatment, already brimming with intensely personal and emotional debates, there may be nothing more controversial than the role of 12-step programs, which are based on Alcoholics Anonymous.\u003c/p>\n\u003cp>At least \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851049/\" target=\"_blank\">80 percent \u003c/a> of current American addiction treatment— for both alcohol and other drugs — is based on teaching patients the ideology of the steps and persuading them to become members and attend meetings for the rest of their lives.\u003c/p>\n\u003cp>Without question, many people believe strongly that AA and similar programs have saved their lives. But AA's reliance on a higher power, confession, prayer and proselytizing is so unlike treatment for other medical or psychological disorders that its predominance seems to call into question whether addiction is a disease at all.\u003c/p>\n\u003cp>I believe that addiction is a medical problem. I view addiction as a \u003ca href=\"http://www.theguardian.com/commentisfree/2016/apr/05/drug-addiction-treatment-learning-disorders\" target=\"_blank\">developmental disorder\u003c/a>, which is a position \u003ca href=\"https://www.minnpost.com/mental-health-addiction/2016/04/dr-joseph-lee-focusing-teen-opioid-use-helps-limit-adult-addiction\" target=\"_blank\">supported\u003c/a> by \u003ca href=\"https://www.drugabuse.gov/publications/drugfacts/understanding-drug-abuse-addiction\" target=\"_blank\">research\u003c/a>.\u003c/p>\n\u003cp>And while I don't have any objection to 12-step programs as self-help, I do think it's impossible to destigmatize addiction while also rendering it the only diagnosis in medicine for which the treatment is explicitly moral.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In fact, I would argue, the 12-step approach would be dismissed outright were it proposed as treatment for disorders such as depression, heart disease or schizophrenia. Until we recognize the discrepancy, I'm skeptical that we'll make substantial progress in treating addiction.\u003c/p>\n\u003cp>To understand why I believe this change in thinking is important, it's helpful to look at how the 12 steps came to dominate American addiction care, what the steps themselves really are and how they produced a system of care that, in my view and that of courts that have debated the issue, violates the First Amendment rights of some without having been proved more effective than less problematic alternatives.\u003c/p>\n\u003cp>AA was founded in \u003ca href=\"http://www.aa.org/pages/en_US/historical-data-the-birth-of-aa-and-its-growth-in-the-uscanada\" target=\"_blank\">1935\u003c/a>. At the time, many doctors had thrown up their hands and given up on treating people with addictions. When reports of AA's success became public, health professionals, not surprisingly, took note.\u003c/p>\n\u003cp>AA members who wanted to help others — which is part of the 12th step— also looked to the medical system as a way to be of service and to help the organization grow.\u003c/p>\n\u003cp>From the start, this approach wasn't without controversy. Indeed, AA itself recognized early on that people might try to profit from it. As a result, the organization's \u003ca href=\"http://www.aa.org/assets/en_US/en_tradition_longform.pdf\" target=\"_blank\">Eighth Tradition\u003c/a> states: \"Alcoholics Anonymous should remain forever nonprofessional. We define professionalism as the occupation of counseling alcoholics for fees or hire.\"\u003c/p>\n\u003cp>Despite the dictum, variations on the approach became the basis for an entire treatment model. In 1949, \u003ca href=\"https://www.hazelden.org/web/public/hazelden_history.page\" target=\"_blank\">Hazelden\u003c/a> was founded in Minnesota and became the grandfather of the 28-day residential rehab program. It was designed to provide intensive exposure to 12-step ideas through meetings, therapy groups and lectures. To this day, most American addiction treatment is based on what became known as the \"Minnesota Model,\" which also involves medical and psychiatric evaluation as well as family therapy.\u003c/p>\n\u003cp>But if you take a look at the \u003ca href=\"http://www.aa.org/assets/en_US/smf-121_en.pdf\">12 steps\u003c/a> themselves, it's easy to see why this form of therapy is unlike any other. The first step requires an admission of \"powerlessness\" over the addiction, the second a belief in a \"Higher Power\" that can restore you to \"sanity,\" the third a surrender to \"God as we understood Him.\"\u003c/p>\n\u003cp>Steps 4 through 10 involve taking a moral inventory and publicly confessing it to someone, asking God to remove your \"defects of character,\" then making amends for harm done.\u003c/p>\n\u003cp>If such steps were demanded of people in treatment for any other condition, they would likely argue that they were being treated as sinners rather than patients. Would you choose a psychiatrist who wanted to focus on your moral failings rather than your medical condition?\u003c/p>\n\u003cp>For addiction, however, being told by treatment providers that the only alternative to these steps, as an AA slogan has it, is \"jails, institutions or death,\" is mainstream medicine. And this remains the case, even though \u003ca href=\"http://www.smartrecovery.org/courts/court-mandated-attendance.htm\" target=\"_blank\">courts\u003c/a> that have entertained the question of whether mandating 12-step participation via the legal system violates the First Amendment separation of church and state have determined that it does.\u003c/p>\n\u003cp>Of course, some argue, so long as the 12-step approach works, who cares? One problem is that 12-step groups only seem to help a minority of people who find them amenable. According to a \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851049/\" target=\"_blank\">researcher\u003c/a> who has studied the groups for years, 70 percent of people who start drop out within six months. And, when compared \u003ca href=\"https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-5-75\" target=\"_blank\">head-to-head\u003c/a> with cognitive behavioral therapy and motivational enhancement therapy, 12-step approaches do no better.\u003c/p>\n\u003cp>Also, I would argue that elements of the 12-step ideology can be harmful to some people. For starters, the idea that there's no other way to recover can produce hopelessness in those who don't find the approach helpful. Second, the more you believe in the idea that addiction is a disease that you have no power over, the greater your risk of relapse, \u003ca href=\"http://onlinelibrary.wiley.com/store/10.1046/j.1360-0443.91.12s1.7.x/asset/j.1360-0443.91.12s1.7.x.pdf?v=1&t=inbvox18&s=a4429abd5e81009d63d97b3d099c0d5a4150bd9c\" target=\"_blank\">research\u003c/a> has found. Third, 12-step programs for people addicted to opioids typically discourage the use of medication. That restriction can be deadly since indefinite use of methadone or buprenorphine is the only approach known to reduce mortality by \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/add.13193/full?tid=a_inl\" target=\"_blank\">50 percent\u003c/a> or \u003ca href=\"http://www.nytimes.com/2015/07/20/opinion/every-drug-court-should-allow-methadone-treatment.html?login=email&tid=a_inl&_r=5\" target=\"_blank\">more\u003c/a>.\u003c/p>\n\u003cp>In my view, AA and treatment need to get amicably divorced. The social support provided by 12-step groups and the way they offer a sense of meaning and purpose can help some people with addictions. So, I believe, it makes sense for treatment providers to tell people about the programs and even encourage them to try a meeting or two, with the caveats that this is not the only way to get better and that membership doesn't qualify people to give medical advice\u003c/p>\n\u003cp>Let's let treatment be treatment and AA be AA. Think about it in the same way we view cancer care: Your support group isn't your oncologist. Each can play an important role in your wellbeing and survival, but cancer patients aren't experts in oncology just because they've had the disease.\u003c/p>\n\u003cp>Moreover, to truly get people to see addiction as a medical problem, addiction has to be treated by health professionals whose education needs to go far beyond their own experiences with recovery.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Maia Szalavitz's latest book,\u003c/em> Unbroken Brain,\u003cem> combines her personal story of addiction and recovery with a look at 25 years of science and research on addiction and treatment. She writes for TIME.com, \u003c/em>VICE, The New York Times, Scientific American Mind, Elle, Psychology Today and Marie Claire\u003cem> among others.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Does+Addiction+Treatment+Require+A+Higher+Power%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "How A Birth at Stanford 50 Years Ago Launched Search for Down Syndrome Test",
"title": "How A Birth at Stanford 50 Years Ago Launched Search for Down Syndrome Test",
"headTitle": "State of Health | KQED News",
"content": "\u003cp>\u003cem>This story comes to us via\u003c/em> Only Human, \u003cem>a new podcast from WNYC Studios. Hosted by Mary Harris, \u003c/em>\u003ca href=\"http://www.wnyc.org/shows/onlyhuman/\" target=\"_blank\">Only Human\u003c/a>\u003cem> tells stories we all can relate to. Because every body has a story. Subscribe to \u003c/em>Only Human\u003cem> on iTunes or wherever you like to get your podcasts. \u003c/em>\u003c/p>\n\u003chr>\n\u003cp>When Lee Herzenberg remembers the day her son Michael was born, she laughs and calls it a \"cool birth.\" Her obstetrician was a friend, and she describes it almost like a party — \"a little bit painful, but that you forget very quickly.\" Lee even got a kick out of the fact that a resident learned to do an episiotomy on her.\u003c/p>\n\u003cp>It was November 1961, and she was at the newly christened Palo Alto-Stanford Hospital Center; her husband, Len, was a biology professor on campus. Like most fathers at the time, he didn't attend the birth, which meant he wasn't there when Michael started turning blue.\u003c/p>\n\u003cp>The nurses whisked the newborn off to the nursery without telling Lee anything was wrong.\u003c/p>\n\u003cp>It was then that a doctor noticed the characteristic features of Down syndrome: floppy muscles, eyes that slanted upward. They got Michael breathing again, but doctors thought his prognosis was grim. They gave Michael just a few months to live. A daisy chain of physicians was called, and Lee says it was a pediatrics professor who told her husband what had happened. Then Len was dispatched to tell Lee.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>She remembers the moment with uncharacteristic emotion. \"We hugged each other, and it was a terrible conversation to realize that you'd lost the baby, but the baby was lost,\" Lee says now. \"We knew immediately what we'd do. We had already made the decision that it was not a good thing to take the baby home, and so we didn't.\"\u003c/p>\n\u003cp>In the 1960s — an era before neurodiversity movements and early intervention programs — many people still called people with Down syndrome \"mongoloids.\" Playwright Arthur Miller institutionalized his son, Daniel, in 1966. A few years later, \u003ca href=\"https://repository.library.georgetown.edu/handle/10822/1031271\" target=\"_blank\">an article\u003c/a> in \u003cem>The Atlantic Monthly\u003c/em> argued that \"a Down's is not a person.\"\u003c/p>\n\u003cp>Lee and Len Herzenberg had seen friends struggle with the birth of a child with Down syndrome and had even gone with a colleague to an institution, where he dropped off his own infant daughter.\u003c/p>\n\u003cp>So, they decided Michael would never come home.\u003c/p>\n\u003cp>But Michael wasn't absolutely lost to them. Michael's birth sparked their search for a blood test that has revolutionized prenatal care in this country.\u003c/p>\n\u003cp>I made the mistake of telling one scientist I was reporting about \"Len Herzenberg's lab.\" He corrected me instantly: \"Len \u003cem>and Lee's\u003c/em> lab.\" Because Lee Herzenberg was \"leaning in\" decades before Sheryl Sandberg coined the phrase. At 81, Lee, a professor of genetics, is still running the lab she and her husband founded more than 50 years ago. Len died in 2013.\u003c/p>\n\u003cp>The lab is a quirky place, even by Stanford standards. Lee rarely sits on chairs, preferring cushions on the floor. She's often accompanied by her bichon frise, Gigi. Researchers can often be found working in this basement office well into the night.\u003c/p>\n\u003cp>But Lee Herzenberg isn't just quirky. She is one of the few professors at Stanford — possibly the only one — never to have officially graduated from college. Instead, she trained by her husband's side, auditing courses while he got his Ph.D. at Caltech (women weren't allowed to attend at the time) and working at his labs at the Pasteur Institute in Paris and the National Institutes of Health.\u003c/p>\n\u003cp>And the science that's been done here has changed the course of medicine.\u003c/p>\n\u003cp>The Herzenbergs are best known as the creators of the modern-day \u003ca href=\"http://www.bio.umass.edu/micro/immunology/facs542/facswhat.htm\" target=\"_blank\">fluorescence-activated flow cytometer\u003c/a>, or FACS. It was a machine born out of frustration: Len couldn't stand squinting down a microscope looking at cells.\u003c/p>\n\u003cp>Before the FACS, a biologist peering at slides could feel like he was playing a really intense round of \"Where's Waldo,\" staring at crowds of all kinds of cells, trying to pinpoint the exact ones he was looking for. Not only was it annoying — Len Herzenberg worried it wasn't particularly scientific. He wanted a way to find and describe cells that didn't rely on his worn-out eyes.\u003c/p>\n\u003cp>The FACS allows you to pour cells in, program the machine to find whatever it is you're looking for, and then it will spit out a little tube of just those cells alone. And the FACS gives you all kinds of information, too: how big the cells are and how much DNA they have inside.\u003c/p>\n\u003cp>The FACS was used to diagnose AIDS because the technology can quickly and easily sort out T cells. The FACS was used to find the first stem cells. When Len Herzenberg died, one colleague \u003ca href=\"http://www.nytimes.com/2013/11/11/us/leonard-herzenberg-immunologist-who-revolutionized-research-dies-at-81.html?_r=0\" target=\"_blank\">told\u003c/a> \u003cem>T\u003c/em>\u003cem>he New York Times\u003c/em> that \"without Len, tens of thousands of people now alive would not be.\"\u003c/p>\n\u003cp>But in the 1970s, the Herzenbergs were still proving the value of this machine. That's when they started thinking about using it to create a blood test for Down syndrome.\u003c/p>\n\u003cfigure id=\"attachment_177037\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-full wp-image-177037\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85.jpg\" alt=\"One of Michael's albums, with a photo of his birth parents, Lee and Len Herzenberg. \" width=\"800\" height=\"599\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85-768x575.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">One of Michael's albums, with a photo of his birth parents, Lee and Len Herzenberg. \u003ccite>(Mary Harris/WNYC)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Len had seen research from Finland claiming it was possible to see a fetus's cells in a mother's blood. It was hard to believe. But he figured that FACS, with its nearly magical sorting capabilities, could figure it out. So he took on a medical student named Diana Bianchi as a research associate and made sorting out these cells her project.\u003c/p>\n\u003cp>If they could isolate these cells, he could learn a lot about the developing fetus, including whether the fetus had chromosomal abnormalities.\u003c/p>\n\u003cp>\"They had a very personal reason for doing this, because of their son Michael,\" Bianchi says now. \"They wanted to have a test that could be offered to any pregnant woman — that would be noninvasive and would allow them to know if a child had Down syndrome. The first step, however, was to show that you could pull out fetal cells.\"\u003c/p>\n\u003cp>Scientists now estimate that for every 200 billion cells in a mother's bloodstream, about 10 of those are fetal cells. Bianchi was one of the first people to see them.\u003c/p>\n\u003cp>\u003cem>The New York Times\u003c/em> quoted Len saying the work was a \"first step\" toward a blood test for Down syndrome for all pregnant women. But it would take 30 years for a practical test to become a reality.\u003c/p>\n\u003cp>As it turned out, Len's FACS wasn't the right tool for prenatal diagnosis. There weren't very many fetal cells to be sorted, and if a pregnant woman already had children, scientists couldn't be sure if the cells in her blood came from the current fetus or one of her older kids.\u003c/p>\n\u003cp>But in 2008, Len helped ensure the right tool was found.\u003c/p>\n\u003cp>A researcher named Stephen Quake had discovered a way to sequence chunks of fetal DNA floating in expectant mothers' blood. As a member of the National Academy of Sciences, Len made sure the \u003ca href=\"http://www.pnas.org/content/early/2008/10/03/0808319105\" target=\"_blank\">paper was published\u003c/a> in the academy's journal. Another researcher, Dennis Lo, confirmed Quake's findings. Three years later, the tests were on the market.\u003c/p>\n\u003cp>Now, at just 10 weeks into a pregnancy, a whole range of things can be revealed with this test. Not just Down syndrome, but a host of other chromosomal abnormalities as well as the sex of the child to be.\u003c/p>\n\u003cp>Until this test, doctors had to rely on amniocentesis, an invasive procedure that involves inserting a needle in the womb to sample amniotic fluid, or biopsying the placenta, to tell them with any reliability whether a fetus had a chromosomal abnormality. These tests aren't just uncomfortable; they come with a risk of miscarriage. By some estimates, in the past five years the number of these procedures performed in this country \u003ca href=\"http://www.npr.org/sections/health-shots/2015/01/26/368449371/dna-blood-test-gives-women-a-new-option-for-prenatal-screening\" target=\"_blank\">has plummeted\u003c/a> by more than 50 percent.\u003c/p>\n\u003cp>To some parents, this knowledge can be alarming. Advocates in Ohio are trying to pass a law preventing abortions if Down syndrome is the reason (North Dakota and \u003ca href=\"http://www.npr.org/sections/thetwo-way/2016/03/25/471842196/indiana-governor-signs-new-abortion-restrictions-into-law\" target=\"_blank\">Indiana\u003c/a> have already passed similar laws).\u003c/p>\n\u003cp>Lee Herzenberg is honest about what she would have done if she'd known early on in her pregnancy that Michael had Down syndrome.\u003c/p>\n\u003cp>\"I'd say if I had the choice of not pushing Michael into this life — if I at that time would know I was carrying a Down syndrome child — I would have aborted the child,\" she says. \"I see no reason Michael has to live the life he leads. The fact that we've made it very happy for him or that he's made it very happy for us — all of that is adapting to a situation, but I don't think it's fair or proper.\"\u003c/p>\n\u003cp>But Lee is alarmed that these tests are now being used to determine the sex of unborn babies. She worries about parents choosing to abort girls.\u003c/p>\n\u003cp>Diana Bianchi, that medical student from the Herzenberg lab, is now a professor at Tufts, where she founded the \u003ca href=\"https://www.tuftsmedicalcenter.org/Research-Clinical-Trials/Institutes-Centers-Labs/Mother-Infant-Research-Institute/Laboratories/Bianchi-Laboratory.aspx\" target=\"_blank\">Mother Infant Research Institute\u003c/a>. She's still working in prenatal testing. In fact, perfecting these tests has become her life's work.\u003c/p>\n\u003cp>But her focus has shifted. Now that she can detect Down syndrome so early, she wants to treat it early, too — in the womb. Because finding this chromosomal abnormality at 10 weeks means there's a window of opportunity: The brain changes associated with Down syndrome don't occur until a month or so later. Theoretically, you could treat a fetus before some brain changes occur at all.\u003c/p>\n\u003cp>Bianchi's work is still early. She's experimenting with mice, giving them existing drugs in utero to see if she can forestall brain damage.\u003c/p>\n\u003cp>There's an often-quoted statistic, that 90 percent of parents who find out that their fetus has Down syndrome will abort. But that statistic is from a study done in the United Kingdom. In the U.S., far fewer women terminate.\u003c/p>\n\u003cp>\"We have to unpack this connection between prenatal testing and abortion,\" she says. \"We have good data to suggest that approximately 40 plus percent of women who know their fetus has Down syndrome continue their pregnancy. There are many women who speak very highly of the fact that this allows them to prepare.\"\u003c/p>\n\u003cp>The Down syndrome baby who kicked off the search for this blood test is now a 54-year-old man. He lives in a squat house in Redwood City, Calif., just a 30-minute drive from his birth mother's home.\u003c/p>\n\u003cp>For years, Michael lived with a local woman named Barbara Jennings, who raised a number of children with developmental challenges. The Herzenbergs' pediatrician helped them find her when Michael was a newborn. The Herzenbergs would visit Michael every month or so, but they never felt they should bring him home. When Barbara died, Michael moved to this group home.\u003c/p>\n\u003cp>It's hard to know how much Michael understands when I speak to him, though he has learned to read and use a cellphone. And he's stubborn. A lot like his mother, actually. \"Michael has the hardest head in the whole world,\" says Janet Thomas, the caretaker who runs this house. \"He does whatever he wants to do. He does not care whatever you say. He's going to do whatever it is he wants to do — that's Michael.\"\u003c/p>\n\u003cp>I asked Lee if she ever regretted not raising Michael, and she said no. \"It was a decision that was selfish, if you like, because we had things we wanted to do. In retrospect, a lot of things would never have gotten done. There would be no FACS had we decided to do this. Because it would have been a very intensive kind of upbringing.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>As for Michael, he clearly loves his mother, no matter what she decided. In Michael's room, there are photos on almost every surface, with snapshots of his biological and adopted families. In the corner is a huge poster of his father, celebrating when \u003ca href=\"//www.the-scientist.com/?articles.view/articleNo/24076/title/Herzenberg-wins-Kyoto-Prize/\" target=\"_blank\">he won the Kyoto Prize\u003c/a> for his contributions to biotechnology. And deep in one album, there's a picture of Len and Lee together. The caption reads: \"Michael's Other Mom + Dad.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 WNYC Radio. To see more, visit \u003ca href=\"http://www.wnyc.org/\" target=\"_blank\">WNYC Radio\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Only+Human%3A+A+Birth+That+Launched+The+Search+For+A+Down+Syndrome+Test&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"excerpt": "After Stanford scientist Lee Herzenberg gave birth to a son with Down syndrome, she and her husband worked to find a noninvasive prenatal test.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>This story comes to us via\u003c/em> Only Human, \u003cem>a new podcast from WNYC Studios. Hosted by Mary Harris, \u003c/em>\u003ca href=\"http://www.wnyc.org/shows/onlyhuman/\" target=\"_blank\">Only Human\u003c/a>\u003cem> tells stories we all can relate to. Because every body has a story. Subscribe to \u003c/em>Only Human\u003cem> on iTunes or wherever you like to get your podcasts. \u003c/em>\u003c/p>\n\u003chr>\n\u003cp>When Lee Herzenberg remembers the day her son Michael was born, she laughs and calls it a \"cool birth.\" Her obstetrician was a friend, and she describes it almost like a party — \"a little bit painful, but that you forget very quickly.\" Lee even got a kick out of the fact that a resident learned to do an episiotomy on her.\u003c/p>\n\u003cp>It was November 1961, and she was at the newly christened Palo Alto-Stanford Hospital Center; her husband, Len, was a biology professor on campus. Like most fathers at the time, he didn't attend the birth, which meant he wasn't there when Michael started turning blue.\u003c/p>\n\u003cp>The nurses whisked the newborn off to the nursery without telling Lee anything was wrong.\u003c/p>\n\u003cp>It was then that a doctor noticed the characteristic features of Down syndrome: floppy muscles, eyes that slanted upward. They got Michael breathing again, but doctors thought his prognosis was grim. They gave Michael just a few months to live. A daisy chain of physicians was called, and Lee says it was a pediatrics professor who told her husband what had happened. Then Len was dispatched to tell Lee.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>She remembers the moment with uncharacteristic emotion. \"We hugged each other, and it was a terrible conversation to realize that you'd lost the baby, but the baby was lost,\" Lee says now. \"We knew immediately what we'd do. We had already made the decision that it was not a good thing to take the baby home, and so we didn't.\"\u003c/p>\n\u003cp>In the 1960s — an era before neurodiversity movements and early intervention programs — many people still called people with Down syndrome \"mongoloids.\" Playwright Arthur Miller institutionalized his son, Daniel, in 1966. A few years later, \u003ca href=\"https://repository.library.georgetown.edu/handle/10822/1031271\" target=\"_blank\">an article\u003c/a> in \u003cem>The Atlantic Monthly\u003c/em> argued that \"a Down's is not a person.\"\u003c/p>\n\u003cp>Lee and Len Herzenberg had seen friends struggle with the birth of a child with Down syndrome and had even gone with a colleague to an institution, where he dropped off his own infant daughter.\u003c/p>\n\u003cp>So, they decided Michael would never come home.\u003c/p>\n\u003cp>But Michael wasn't absolutely lost to them. Michael's birth sparked their search for a blood test that has revolutionized prenatal care in this country.\u003c/p>\n\u003cp>I made the mistake of telling one scientist I was reporting about \"Len Herzenberg's lab.\" He corrected me instantly: \"Len \u003cem>and Lee's\u003c/em> lab.\" Because Lee Herzenberg was \"leaning in\" decades before Sheryl Sandberg coined the phrase. At 81, Lee, a professor of genetics, is still running the lab she and her husband founded more than 50 years ago. Len died in 2013.\u003c/p>\n\u003cp>The lab is a quirky place, even by Stanford standards. Lee rarely sits on chairs, preferring cushions on the floor. She's often accompanied by her bichon frise, Gigi. Researchers can often be found working in this basement office well into the night.\u003c/p>\n\u003cp>But Lee Herzenberg isn't just quirky. She is one of the few professors at Stanford — possibly the only one — never to have officially graduated from college. Instead, she trained by her husband's side, auditing courses while he got his Ph.D. at Caltech (women weren't allowed to attend at the time) and working at his labs at the Pasteur Institute in Paris and the National Institutes of Health.\u003c/p>\n\u003cp>And the science that's been done here has changed the course of medicine.\u003c/p>\n\u003cp>The Herzenbergs are best known as the creators of the modern-day \u003ca href=\"http://www.bio.umass.edu/micro/immunology/facs542/facswhat.htm\" target=\"_blank\">fluorescence-activated flow cytometer\u003c/a>, or FACS. It was a machine born out of frustration: Len couldn't stand squinting down a microscope looking at cells.\u003c/p>\n\u003cp>Before the FACS, a biologist peering at slides could feel like he was playing a really intense round of \"Where's Waldo,\" staring at crowds of all kinds of cells, trying to pinpoint the exact ones he was looking for. Not only was it annoying — Len Herzenberg worried it wasn't particularly scientific. He wanted a way to find and describe cells that didn't rely on his worn-out eyes.\u003c/p>\n\u003cp>The FACS allows you to pour cells in, program the machine to find whatever it is you're looking for, and then it will spit out a little tube of just those cells alone. And the FACS gives you all kinds of information, too: how big the cells are and how much DNA they have inside.\u003c/p>\n\u003cp>The FACS was used to diagnose AIDS because the technology can quickly and easily sort out T cells. The FACS was used to find the first stem cells. When Len Herzenberg died, one colleague \u003ca href=\"http://www.nytimes.com/2013/11/11/us/leonard-herzenberg-immunologist-who-revolutionized-research-dies-at-81.html?_r=0\" target=\"_blank\">told\u003c/a> \u003cem>T\u003c/em>\u003cem>he New York Times\u003c/em> that \"without Len, tens of thousands of people now alive would not be.\"\u003c/p>\n\u003cp>But in the 1970s, the Herzenbergs were still proving the value of this machine. That's when they started thinking about using it to create a blood test for Down syndrome.\u003c/p>\n\u003cfigure id=\"attachment_177037\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-full wp-image-177037\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85.jpg\" alt=\"One of Michael's albums, with a photo of his birth parents, Lee and Len Herzenberg. \" width=\"800\" height=\"599\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/04/herzenberg-2-8b2c93f342bef3820866b27fb8d5fb69f300d149-s800-c85-768x575.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">One of Michael's albums, with a photo of his birth parents, Lee and Len Herzenberg. \u003ccite>(Mary Harris/WNYC)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Len had seen research from Finland claiming it was possible to see a fetus's cells in a mother's blood. It was hard to believe. But he figured that FACS, with its nearly magical sorting capabilities, could figure it out. So he took on a medical student named Diana Bianchi as a research associate and made sorting out these cells her project.\u003c/p>\n\u003cp>If they could isolate these cells, he could learn a lot about the developing fetus, including whether the fetus had chromosomal abnormalities.\u003c/p>\n\u003cp>\"They had a very personal reason for doing this, because of their son Michael,\" Bianchi says now. \"They wanted to have a test that could be offered to any pregnant woman — that would be noninvasive and would allow them to know if a child had Down syndrome. The first step, however, was to show that you could pull out fetal cells.\"\u003c/p>\n\u003cp>Scientists now estimate that for every 200 billion cells in a mother's bloodstream, about 10 of those are fetal cells. Bianchi was one of the first people to see them.\u003c/p>\n\u003cp>\u003cem>The New York Times\u003c/em> quoted Len saying the work was a \"first step\" toward a blood test for Down syndrome for all pregnant women. But it would take 30 years for a practical test to become a reality.\u003c/p>\n\u003cp>As it turned out, Len's FACS wasn't the right tool for prenatal diagnosis. There weren't very many fetal cells to be sorted, and if a pregnant woman already had children, scientists couldn't be sure if the cells in her blood came from the current fetus or one of her older kids.\u003c/p>\n\u003cp>But in 2008, Len helped ensure the right tool was found.\u003c/p>\n\u003cp>A researcher named Stephen Quake had discovered a way to sequence chunks of fetal DNA floating in expectant mothers' blood. As a member of the National Academy of Sciences, Len made sure the \u003ca href=\"http://www.pnas.org/content/early/2008/10/03/0808319105\" target=\"_blank\">paper was published\u003c/a> in the academy's journal. Another researcher, Dennis Lo, confirmed Quake's findings. Three years later, the tests were on the market.\u003c/p>\n\u003cp>Now, at just 10 weeks into a pregnancy, a whole range of things can be revealed with this test. Not just Down syndrome, but a host of other chromosomal abnormalities as well as the sex of the child to be.\u003c/p>\n\u003cp>Until this test, doctors had to rely on amniocentesis, an invasive procedure that involves inserting a needle in the womb to sample amniotic fluid, or biopsying the placenta, to tell them with any reliability whether a fetus had a chromosomal abnormality. These tests aren't just uncomfortable; they come with a risk of miscarriage. By some estimates, in the past five years the number of these procedures performed in this country \u003ca href=\"http://www.npr.org/sections/health-shots/2015/01/26/368449371/dna-blood-test-gives-women-a-new-option-for-prenatal-screening\" target=\"_blank\">has plummeted\u003c/a> by more than 50 percent.\u003c/p>\n\u003cp>To some parents, this knowledge can be alarming. Advocates in Ohio are trying to pass a law preventing abortions if Down syndrome is the reason (North Dakota and \u003ca href=\"http://www.npr.org/sections/thetwo-way/2016/03/25/471842196/indiana-governor-signs-new-abortion-restrictions-into-law\" target=\"_blank\">Indiana\u003c/a> have already passed similar laws).\u003c/p>\n\u003cp>Lee Herzenberg is honest about what she would have done if she'd known early on in her pregnancy that Michael had Down syndrome.\u003c/p>\n\u003cp>\"I'd say if I had the choice of not pushing Michael into this life — if I at that time would know I was carrying a Down syndrome child — I would have aborted the child,\" she says. \"I see no reason Michael has to live the life he leads. The fact that we've made it very happy for him or that he's made it very happy for us — all of that is adapting to a situation, but I don't think it's fair or proper.\"\u003c/p>\n\u003cp>But Lee is alarmed that these tests are now being used to determine the sex of unborn babies. She worries about parents choosing to abort girls.\u003c/p>\n\u003cp>Diana Bianchi, that medical student from the Herzenberg lab, is now a professor at Tufts, where she founded the \u003ca href=\"https://www.tuftsmedicalcenter.org/Research-Clinical-Trials/Institutes-Centers-Labs/Mother-Infant-Research-Institute/Laboratories/Bianchi-Laboratory.aspx\" target=\"_blank\">Mother Infant Research Institute\u003c/a>. She's still working in prenatal testing. In fact, perfecting these tests has become her life's work.\u003c/p>\n\u003cp>But her focus has shifted. Now that she can detect Down syndrome so early, she wants to treat it early, too — in the womb. Because finding this chromosomal abnormality at 10 weeks means there's a window of opportunity: The brain changes associated with Down syndrome don't occur until a month or so later. Theoretically, you could treat a fetus before some brain changes occur at all.\u003c/p>\n\u003cp>Bianchi's work is still early. She's experimenting with mice, giving them existing drugs in utero to see if she can forestall brain damage.\u003c/p>\n\u003cp>There's an often-quoted statistic, that 90 percent of parents who find out that their fetus has Down syndrome will abort. But that statistic is from a study done in the United Kingdom. In the U.S., far fewer women terminate.\u003c/p>\n\u003cp>\"We have to unpack this connection between prenatal testing and abortion,\" she says. \"We have good data to suggest that approximately 40 plus percent of women who know their fetus has Down syndrome continue their pregnancy. There are many women who speak very highly of the fact that this allows them to prepare.\"\u003c/p>\n\u003cp>The Down syndrome baby who kicked off the search for this blood test is now a 54-year-old man. He lives in a squat house in Redwood City, Calif., just a 30-minute drive from his birth mother's home.\u003c/p>\n\u003cp>For years, Michael lived with a local woman named Barbara Jennings, who raised a number of children with developmental challenges. The Herzenbergs' pediatrician helped them find her when Michael was a newborn. The Herzenbergs would visit Michael every month or so, but they never felt they should bring him home. When Barbara died, Michael moved to this group home.\u003c/p>\n\u003cp>It's hard to know how much Michael understands when I speak to him, though he has learned to read and use a cellphone. And he's stubborn. A lot like his mother, actually. \"Michael has the hardest head in the whole world,\" says Janet Thomas, the caretaker who runs this house. \"He does whatever he wants to do. He does not care whatever you say. He's going to do whatever it is he wants to do — that's Michael.\"\u003c/p>\n\u003cp>I asked Lee if she ever regretted not raising Michael, and she said no. \"It was a decision that was selfish, if you like, because we had things we wanted to do. In retrospect, a lot of things would never have gotten done. There would be no FACS had we decided to do this. Because it would have been a very intensive kind of upbringing.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>As for Michael, he clearly loves his mother, no matter what she decided. In Michael's room, there are photos on almost every surface, with snapshots of his biological and adopted families. In the corner is a huge poster of his father, celebrating when \u003ca href=\"//www.the-scientist.com/?articles.view/articleNo/24076/title/Herzenberg-wins-Kyoto-Prize/\" target=\"_blank\">he won the Kyoto Prize\u003c/a> for his contributions to biotechnology. And deep in one album, there's a picture of Len and Lee together. The caption reads: \"Michael's Other Mom + Dad.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 WNYC Radio. To see more, visit \u003ca href=\"http://www.wnyc.org/\" target=\"_blank\">WNYC Radio\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Only+Human%3A+A+Birth+That+Launched+The+Search+For+A+Down+Syndrome+Test&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"airtime": "SUN 1pm-2pm, TUE 10pm, WED 1am",
"meta": {
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"source": "City Arts & Lectures"
},
"link": "https://www.cityarts.net",
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},
"closealltabs": {
"id": "closealltabs",
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"order": 1
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"title": "Code Switch / Life Kit",
"info": "\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />",
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"id": "commonwealth-club",
"title": "Commonwealth Club of California Podcast",
"info": "The Commonwealth Club of California is the nation's oldest and largest public affairs forum. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. This podcast feed is usually updated twice a week and is always un-edited.",
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"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Commonwealth-Club-Podcast-Tile-360x360-1.jpg",
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"source": "Commonwealth Club of California"
},
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"google": "https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw",
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"id": "forum",
"title": "Forum",
"tagline": "The conversation starts here",
"info": "KQED’s live call-in program discussing local, state, national and international issues, as well as in-depth interviews.",
"airtime": "MON-FRI 9am-11am, 10pm-11pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Forum-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED Forum with Mina Kim and Alexis Madrigal",
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"order": 9
},
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"id": "freakonomics-radio",
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"airtime": "SUN 1am-2am, SAT 3pm-4pm",
"meta": {
"site": "radio",
"source": "WNYC"
},
"link": "/radio/program/freakonomics-radio",
"subscribe": {
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"apple": "https://itunes.apple.com/us/podcast/freakonomics-radio/id354668519",
"tuneIn": "https://tunein.com/podcasts/WNYC-Podcasts/Freakonomics-Radio-p272293/",
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},
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"id": "fresh-air",
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"apple": "https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=214089682&at=11l79Y&ct=nprdirectory",
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"info": "A live production of NPR and WBUR Boston, in collaboration with stations across the country, Here & Now reflects the fluid world of news as it's happening in the middle of the day, with timely, in-depth news, interviews and conversation. Hosted by Robin Young, Jeremy Hobson and Tonya Mosley.",
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"hidden-brain": {
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"info": "Shankar Vedantam uses science and storytelling to reveal the unconscious patterns that drive human behavior, shape our choices and direct our relationships.",
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"airtime": "SUN 7pm-8pm",
"meta": {
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"source": "NPR"
},
"link": "/radio/program/hidden-brain",
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"how-i-built-this": {
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"title": "How I Built This with Guy Raz",
"info": "Guy Raz dives into the stories behind some of the world's best known companies. How I Built This weaves a narrative journey about innovators, entrepreneurs and idealists—and the movements they built.",
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"airtime": "SUN 7:30pm-8pm",
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"link": "/radio/program/how-i-built-this",
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"apple": "https://itunes.apple.com/us/podcast/how-i-built-this-with-guy-raz/id1150510297?mt=2",
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"hyphenacion": {
"id": "hyphenacion",
"title": "Hyphenación",
"tagline": "Where conversation and cultura meet",
"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2025/03/Hyphenacion_FinalAssets_PodcastTile.png",
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"officialWebsiteLink": "/podcasts/hyphenacion",
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"order": 15
},
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},
"jerrybrown": {
"id": "jerrybrown",
"title": "The Political Mind of Jerry Brown",
"tagline": "Lessons from a lifetime in politics",
"info": "The Political Mind of Jerry Brown brings listeners the wisdom of the former Governor, Mayor, and presidential candidate. Scott Shafer interviewed Brown for more than 40 hours, covering the former governor's life and half-century in the political game – and Brown has some lessons he'd like to share. ",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-Political-Mind-of-Jerry-Brown-Podcast-Tile-703x703-1.jpg",
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"officialWebsiteLink": "/podcasts/jerrybrown",
"meta": {
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"order": 18
},
"link": "/podcasts/jerrybrown",
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},
"latino-usa": {
"id": "latino-usa",
"title": "Latino USA",
"airtime": "MON 1am-2am, SUN 6pm-7pm",
"info": "Latino USA, the radio journal of news and culture, is the only national, English-language radio program produced from a Latino perspective.",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/latinoUsa.jpg",
"officialWebsiteLink": "http://latinousa.org/",
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},
"link": "/radio/program/latino-usa",
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"apple": "https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=79681317&at=11l79Y&ct=nprdirectory",
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"rss": "https://feeds.npr.org/510016/podcast.xml"
}
},
"marketplace": {
"id": "marketplace",
"title": "Marketplace",
"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
"airtime": "MON-FRI 4pm-4:30pm, MON-WED 6:30pm-7pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Marketplace-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.marketplace.org/",
"meta": {
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"source": "American Public Media"
},
"link": "/radio/program/marketplace",
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},
"masters-of-scale": {
"id": "masters-of-scale",
"title": "Masters of Scale",
"info": "Masters of Scale is an original podcast in which LinkedIn co-founder and Greylock Partner Reid Hoffman sets out to describe and prove theories that explain how great entrepreneurs take their companies from zero to a gazillion in ingenious fashion.",
"airtime": "Every other Wednesday June 12 through October 16 at 8pm (repeats Thursdays at 2am)",
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"officialWebsiteLink": "https://mastersofscale.com/",
"meta": {
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"source": "WaitWhat"
},
"link": "/radio/program/masters-of-scale",
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"rss": "https://rss.art19.com/masters-of-scale"
}
},
"mindshift": {
"id": "mindshift",
"title": "MindShift",
"tagline": "A podcast about the future of learning and how we raise our kids",
"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED MindShift: How We Will Learn",
"officialWebsiteLink": "/mindshift/",
"meta": {
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"source": "kqed",
"order": 12
},
"link": "/podcasts/mindshift",
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5",
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}
},
"morning-edition": {
"id": "morning-edition",
"title": "Morning Edition",
"info": "\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. Hosts Steve Inskeep, David Greene and Rachel Martin bring you the latest breaking news and features to prepare you for the day.",
"airtime": "MON-FRI 3am-9am",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Morning-Edition-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.npr.org/programs/morning-edition/",
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"link": "/radio/program/morning-edition"
},
"onourwatch": {
"id": "onourwatch",
"title": "On Our Watch",
"tagline": "Deeply-reported investigative journalism",
"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/On-Our-Watch-Podcast-Tile-703x703-1.jpg",
"imageAlt": "On Our Watch from NPR and KQED",
"officialWebsiteLink": "/podcasts/onourwatch",
"meta": {
"site": "news",
"source": "kqed",
"order": 11
},
"link": "/podcasts/onourwatch",
"subscribe": {
"apple": "https://podcasts.apple.com/podcast/id1567098962",
"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM2MC9wb2RjYXN0LnhtbD9zYz1nb29nbGVwb2RjYXN0cw",
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},
"on-the-media": {
"id": "on-the-media",
"title": "On The Media",
"info": "Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us",
"airtime": "SUN 2pm-3pm, MON 12am-1am",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/onTheMedia.png",
"officialWebsiteLink": "https://www.wnycstudios.org/shows/otm",
"meta": {
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"source": "wnyc"
},
"link": "/radio/program/on-the-media",
"subscribe": {
"apple": "https://itunes.apple.com/us/podcast/on-the-media/id73330715?mt=2",
"tuneIn": "https://tunein.com/radio/On-the-Media-p69/",
"rss": "http://feeds.wnyc.org/onthemedia"
}
},
"pbs-newshour": {
"id": "pbs-newshour",
"title": "PBS NewsHour",
"info": "Analysis, background reports and updates from the PBS NewsHour putting today's news in context.",
"airtime": "MON-FRI 3pm-4pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/PBS-News-Hour-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.pbs.org/newshour/",
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},
"link": "/radio/program/pbs-newshour",
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"apple": "https://itunes.apple.com/us/podcast/pbs-newshour-full-show/id394432287?mt=2",
"tuneIn": "https://tunein.com/radio/PBS-NewsHour---Full-Show-p425698/",
"rss": "https://www.pbs.org/newshour/feeds/rss/podcasts/show"
}
},
"perspectives": {
"id": "perspectives",
"title": "Perspectives",
"tagline": "KQED's series of daily listener commentaries since 1991",
"info": "KQED's series of daily listener commentaries since 1991.",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2025/01/Perspectives_Tile_Final.jpg",
"imageAlt": "KQED Perspectives",
"officialWebsiteLink": "/perspectives/",
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"source": "kqed",
"order": 14
},
"link": "/perspectives",
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"npr": "https://www.npr.org/podcasts/432309616/perspectives",
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},
"planet-money": {
"id": "planet-money",
"title": "Planet Money",
"info": "The economy explained. Imagine you could call up a friend and say, Meet me at the bar and tell me what's going on with the economy. Now imagine that's actually a fun evening.",
"airtime": "SUN 3pm-4pm",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/planetmoney.jpg",
"officialWebsiteLink": "https://www.npr.org/sections/money/",
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