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"content": "\u003cp>Rini Kramer-Carter has tried everything to pull herself out of her dark emotional hole: individual therapy, support groups, tai chi and numerous antidepressants.\u003c/p>\n\u003cp>The 73-year-old Los Angeles musician rattles off the list: Prozac, Cymbalta, Lexapro.\u003c/p>\n\u003cp>“I’ve been on a bunch,” she said. “I still cry all the time.”\u003c/p>\n\u003cp>She has what’s known as “treatment-resistant depression.” It’s commonly defined as depression that doesn’t respond to two different medications when taken one after the other, at the right dose and for the right amount of time.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-medium wp-image-224252\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/DepressedMan-800x453.jpg\" alt=\"DepressedMan\" width=\"800\" height=\"453\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-800x453.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-400x227.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-768x435.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-1180x669.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-960x544.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Nearly 16 million adults have major depression, and up to \u003ca href=\"http://www.ajgponline.org/article/S1064-7481%2816%2930126-9/fulltext?rss=yes\">a third\u003c/a> do not respond to treatment. The disease afflicts people of all ages, but experts say that as many as half of older adults don’t get better with standard treatment.\u003c/p>\n\u003cp>Mental health experts expect treatment-resistant depression to become more widespread as baby boomers age. Boomers already have been identified as having \u003ca href=\"http://www.gallup.com/poll/181364/reports-depression-treatment-highest-among-baby-boomers.aspx\">higher rates\u003c/a> of depression than previous generations, and over time their depression may no longer respond to medication.\u003c/p>\n\u003cp>“We are seeing treatment-resistant depression more, and we are recognizing it more,” said Helen Lavretsky, a geriatric psychiatrist at UCLA. “And in older adults, the answer to understanding what it is and what to do about it is more complicated than in younger adults.”\u003c/p>\n\u003cp>The consequences among older adults can be devastating. Persistent depression can raise the risk of early death and suicide, expedite memory decline and lead to a loss of independence.\u003c/p>\n\u003cp>\u003cstrong>Why Antidepressants Aren't Enough\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The phenomenon isn’t well studied, but psychiatrists believe there are several reasons why depression in older adults may not respond to treatment. For one thing, if a person has been depressed and taken different medications for a long time, it can diminish their effectiveness. Patients also may neglect to take their medication as prescribed, because they have memory problems or they believe they no longer need it.\u003c/p>\n\u003cp>“Sometimes people say, ‘I’m better. I don’t need this,’ and stop the medicine,” said Anthony P. Weiner, who directs outpatient geriatric psychiatry at Massachusetts General Hospital. “Then the symptoms recur … and if the person goes back on the medicine, it may not be fully effective.”\u003c/p>\n\u003cp>Seniors are also more likely to have chronic medical illnesses, which raises the risk of depression. Their illnesses may make it more difficult for them to recover from depression. And it can mask whether antidepressants are working, because symptoms of chronic illness can be mistaken for depression — and vice versa.\u003c/p>\n\u003cp>Poverty, isolation, pain, grief over the loss of a spouse, or being a caregiver can also lead to or intensify a senior’s depression. And no matter what medication the patients take, Lavretsky noted, those external factors don’t go away.\u003c/p>\n\u003cp>“Either they change their perspective or they change their circumstances, or the depression just persists,” she said.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-medium wp-image-225685\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/depressedwomanrain-800x473.jpg\" alt=\"depressedwomanrain\" width=\"800\" height=\"473\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-800x473.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-400x236.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-768x454.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-1180x698.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-960x568.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/p>\n\u003cp>Antidepressants can help seniors gain some perspective. But Lavretsky and others agree that even if the medications are effective, they shouldn’t be used in isolation. “It’s an emotional experience,” Weiner said. “The whole answer isn’t just, ‘Oh, here take a pill.’ There is such a central role for psychotherapy.”\u003c/p>\n\u003cp>Kramer-Carter, who speaks slowly and hugs everyone she meets, has felt depressed for as long as she can remember. As a young adult, she worked as a secretary and a proofreader but got fired more than once because she had trouble getting out of bed and making it to work on time. She went to the emergency room many times and in her 30s, she was diagnosed with depression.\u003c/p>\n\u003cp>Now, she spends a few days each week driving her husband, Eugene Carter, to medical appointments. When she feels up to it, she volunteers delivering food to poor families.\u003c/p>\n\u003cp>Kramer-Carter checks all the boxes for being at high-risk of treatment-resistant depression. She is a long-time caregiver, first for her parents and now for her husband, a stroke survivor with short-term memory problems. Her own list of health problems is long: diabetes, high blood pressure, arthritis, fibromyalgia and gout.\u003c/p>\n\u003cp>“Who wants to be aching all the time?” she said.\u003c/p>\n\u003caside class=\"pullquote alignright\">'If I can stay in bed all day, that’s what I do.'\u003ccite>Rini Kramer-Carter\u003c/cite>\u003c/aside>\n\u003cp>Money problems don’t help either. The couple depends financially on Social Security. If she had more money, she said she would go to the theater or see live concerts. She misses both.\u003c/p>\n\u003cp>“We wouldn’t be so stuck,” she said. As it is, they spend everything on food, rent and other bills.\u003c/p>\n\u003cp>“It’s a constant struggle,” she said. “You have to borrow from Peter to pay Paul.”\u003c/p>\n\u003cp>Despite the prevalence of treatment-resistant depression, \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3363299/\" target=\"_blank\">few resources\u003c/a> exist to help psychiatrists make treatment decisions. Clinical trials have been scant, and there are no universally accepted protocols for the condition. The risks and benefits of different medications for older adults are largely unknown.\u003c/p>\n\u003cp>Given a shortage of geriatric psychiatrists, decisions on treatment are often left to primary care providers, who may not have relevant training or might be reluctant to take on such complicated care.\u003c/p>\n\u003cp>Doctors with patients who don’t respond to traditional therapies frequently make ad hoc decisions about whether to change the dosage, add a medication or switch to a new one.\u003c/p>\n\u003cp>“The clinicians use their best experience and trial and error,” said Evelyn Whitlock, chief science officer at the Patient-Centered Outcomes Research Institute. “They try something, and if it doesn’t work, they try something else.”\u003c/p>\n\u003cp>Trial and error is not ideal, she said. Many of these people have been living with depression for so many years, and providers need to be able to provide them with effective treatment.\u003c/p>\n\u003cp>\u003cstrong>New Approaches\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>In an effort to produce better medical outcomes for people with treatment-resistant depression, the Patient-Centered Outcomes Research Institute announced in July that it was funding \u003ca href=\"http://www.pcori.org/news-release/pcori-board-approves-40-million-improving-treatment-options-depression\" target=\"_blank\">three major studies\u003c/a> that will test different approaches to the illness. The goal of the research is to produce tangible evidence that can be used immediately to help patients and their doctors make more informed treatment decisions. [contextly_sidebar id=\"QvUjqDKFRFEtGPmtPTeoqpzPvYGJtv45\"]\u003c/p>\n\u003cp>The Washington, D.C. nonprofit, which finances health research, earmarked $40 million for the five-year studies, which it expects to begin this fall. They will include more than 2,500 patients at sites in California, Ohio, New York, Texas, Pennsylvania and elsewhere.\u003c/p>\n\u003cp>One of the studies will examine electroconvulsive therapy — its impact on quality of life and its potential for relieving the symptoms. Another will compare the effectiveness and safety of three strategies — using magnetic fields to stimulate nerve cells in the brain, adding an antipsychotic medication or switching to a specific antidepressant. The research will assess how these approaches affect the patients’ ability to function at home and work.\u003c/p>\n\u003cp>The third and largest study, with about 1,500 patients, will focus specifically on older adults, testing different drugs and studying how aging affects the risk and benefits of antidepressants. UCLA, where Kramer-Carter is being treated, is part of the third study, which will weigh life circumstances and disabilities in addition to depression.\u003c/p>\n\u003cp>The grants represent an “unprecedented opportunity to look at this population,” Lavretsky said.\u003c/p>\n\u003cp>“It will be a comprehensive look at the condition, why it happens and what are the ways of alleviating suffering,” she said. “Are there some similarities among all people with treatment-resistant depression? I suspect we will find some.”\u003c/p>\n\u003cp>On a recent afternoon, Rini Kramer-Carter visited Lavretsky at UCLA. She said the only time she truly escapes her sadness is when she plays percussion along with other musicians. But she hasn’t been playing lately, and she has been sleeping up to 20 hours a day.\u003c/p>\n\u003cp>\u003cimg class=\"size-medium wp-image-257360\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Prozac-428x600.jpg\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/Prozac-428x600.jpg 428w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Prozac-400x560.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Prozac.jpg 731w\" sizes=\"(max-width: 428px) 100vw, 428px\">\u003c/p>\n\u003cp>“If I can stay in bed all day, that’s what I do,” she said.\u003c/p>\n\u003cp>Sometimes she watches TV comedies to try to dissipate her black moods.\u003c/p>\n\u003cp>Kramer-Carter said she learned about Lavretsky after seeing a newspaper ad for another research study, of a drug typically used to treat early-stage dementia. During their appointment, Lavretsky went over a list of questions included in the study. “On a scale of zero to 10, where do you place yourself in terms of depression?” the doctor asked her. Nine, she responded.\u003c/p>\n\u003cp>She told Lavretsky she sometimes felt restless and anxious, but not suicidal.\u003c/p>\n\u003cp>“Do you feel full of energy?” Lavretsky asked.\u003c/p>\n\u003cp>“Do I look like I am full of energy?” she responded with a sigh.\u003c/p>\n\u003cp>Lavretsky told her that no pill will completely fix her problems, but medication might give her more energy and the ability to cope. Kramer-Carter said she knows a drug won’t produce any miracles. She just wants some relief.\u003c/p>\n\u003cp>“I just want to be able to live my life,” she said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This story was produced by \u003ca href=\"http://khn.org/\">Kaiser Health News\u003c/a>, an editorially independent program of the \u003ca href=\"http://kff.org/\">Kaiser Family Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Rini Kramer-Carter has tried everything to pull herself out of her dark emotional hole: individual therapy, support groups, tai chi and numerous antidepressants.\u003c/p>\n\u003cp>The 73-year-old Los Angeles musician rattles off the list: Prozac, Cymbalta, Lexapro.\u003c/p>\n\u003cp>“I’ve been on a bunch,” she said. “I still cry all the time.”\u003c/p>\n\u003cp>She has what’s known as “treatment-resistant depression.” It’s commonly defined as depression that doesn’t respond to two different medications when taken one after the other, at the right dose and for the right amount of time.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-medium wp-image-224252\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/DepressedMan-800x453.jpg\" alt=\"DepressedMan\" width=\"800\" height=\"453\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-800x453.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-400x227.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-768x435.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-1180x669.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/DepressedMan-960x544.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Nearly 16 million adults have major depression, and up to \u003ca href=\"http://www.ajgponline.org/article/S1064-7481%2816%2930126-9/fulltext?rss=yes\">a third\u003c/a> do not respond to treatment. The disease afflicts people of all ages, but experts say that as many as half of older adults don’t get better with standard treatment.\u003c/p>\n\u003cp>Mental health experts expect treatment-resistant depression to become more widespread as baby boomers age. Boomers already have been identified as having \u003ca href=\"http://www.gallup.com/poll/181364/reports-depression-treatment-highest-among-baby-boomers.aspx\">higher rates\u003c/a> of depression than previous generations, and over time their depression may no longer respond to medication.\u003c/p>\n\u003cp>“We are seeing treatment-resistant depression more, and we are recognizing it more,” said Helen Lavretsky, a geriatric psychiatrist at UCLA. “And in older adults, the answer to understanding what it is and what to do about it is more complicated than in younger adults.”\u003c/p>\n\u003cp>The consequences among older adults can be devastating. Persistent depression can raise the risk of early death and suicide, expedite memory decline and lead to a loss of independence.\u003c/p>\n\u003cp>\u003cstrong>Why Antidepressants Aren't Enough\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The phenomenon isn’t well studied, but psychiatrists believe there are several reasons why depression in older adults may not respond to treatment. For one thing, if a person has been depressed and taken different medications for a long time, it can diminish their effectiveness. Patients also may neglect to take their medication as prescribed, because they have memory problems or they believe they no longer need it.\u003c/p>\n\u003cp>“Sometimes people say, ‘I’m better. I don’t need this,’ and stop the medicine,” said Anthony P. Weiner, who directs outpatient geriatric psychiatry at Massachusetts General Hospital. “Then the symptoms recur … and if the person goes back on the medicine, it may not be fully effective.”\u003c/p>\n\u003cp>Seniors are also more likely to have chronic medical illnesses, which raises the risk of depression. Their illnesses may make it more difficult for them to recover from depression. And it can mask whether antidepressants are working, because symptoms of chronic illness can be mistaken for depression — and vice versa.\u003c/p>\n\u003cp>Poverty, isolation, pain, grief over the loss of a spouse, or being a caregiver can also lead to or intensify a senior’s depression. And no matter what medication the patients take, Lavretsky noted, those external factors don’t go away.\u003c/p>\n\u003cp>“Either they change their perspective or they change their circumstances, or the depression just persists,” she said.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-medium wp-image-225685\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/depressedwomanrain-800x473.jpg\" alt=\"depressedwomanrain\" width=\"800\" height=\"473\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-800x473.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-400x236.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-768x454.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-1180x698.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/depressedwomanrain-960x568.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/p>\n\u003cp>Antidepressants can help seniors gain some perspective. But Lavretsky and others agree that even if the medications are effective, they shouldn’t be used in isolation. “It’s an emotional experience,” Weiner said. “The whole answer isn’t just, ‘Oh, here take a pill.’ There is such a central role for psychotherapy.”\u003c/p>\n\u003cp>Kramer-Carter, who speaks slowly and hugs everyone she meets, has felt depressed for as long as she can remember. As a young adult, she worked as a secretary and a proofreader but got fired more than once because she had trouble getting out of bed and making it to work on time. She went to the emergency room many times and in her 30s, she was diagnosed with depression.\u003c/p>\n\u003cp>Now, she spends a few days each week driving her husband, Eugene Carter, to medical appointments. When she feels up to it, she volunteers delivering food to poor families.\u003c/p>\n\u003cp>Kramer-Carter checks all the boxes for being at high-risk of treatment-resistant depression. She is a long-time caregiver, first for her parents and now for her husband, a stroke survivor with short-term memory problems. Her own list of health problems is long: diabetes, high blood pressure, arthritis, fibromyalgia and gout.\u003c/p>\n\u003cp>“Who wants to be aching all the time?” she said.\u003c/p>\n\u003caside class=\"pullquote alignright\">'If I can stay in bed all day, that’s what I do.'\u003ccite>Rini Kramer-Carter\u003c/cite>\u003c/aside>\n\u003cp>Money problems don’t help either. The couple depends financially on Social Security. If she had more money, she said she would go to the theater or see live concerts. She misses both.\u003c/p>\n\u003cp>“We wouldn’t be so stuck,” she said. As it is, they spend everything on food, rent and other bills.\u003c/p>\n\u003cp>“It’s a constant struggle,” she said. “You have to borrow from Peter to pay Paul.”\u003c/p>\n\u003cp>Despite the prevalence of treatment-resistant depression, \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3363299/\" target=\"_blank\">few resources\u003c/a> exist to help psychiatrists make treatment decisions. Clinical trials have been scant, and there are no universally accepted protocols for the condition. The risks and benefits of different medications for older adults are largely unknown.\u003c/p>\n\u003cp>Given a shortage of geriatric psychiatrists, decisions on treatment are often left to primary care providers, who may not have relevant training or might be reluctant to take on such complicated care.\u003c/p>\n\u003cp>Doctors with patients who don’t respond to traditional therapies frequently make ad hoc decisions about whether to change the dosage, add a medication or switch to a new one.\u003c/p>\n\u003cp>“The clinicians use their best experience and trial and error,” said Evelyn Whitlock, chief science officer at the Patient-Centered Outcomes Research Institute. “They try something, and if it doesn’t work, they try something else.”\u003c/p>\n\u003cp>Trial and error is not ideal, she said. Many of these people have been living with depression for so many years, and providers need to be able to provide them with effective treatment.\u003c/p>\n\u003cp>\u003cstrong>New Approaches\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>In an effort to produce better medical outcomes for people with treatment-resistant depression, the Patient-Centered Outcomes Research Institute announced in July that it was funding \u003ca href=\"http://www.pcori.org/news-release/pcori-board-approves-40-million-improving-treatment-options-depression\" target=\"_blank\">three major studies\u003c/a> that will test different approaches to the illness. The goal of the research is to produce tangible evidence that can be used immediately to help patients and their doctors make more informed treatment decisions. \u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The Washington, D.C. nonprofit, which finances health research, earmarked $40 million for the five-year studies, which it expects to begin this fall. They will include more than 2,500 patients at sites in California, Ohio, New York, Texas, Pennsylvania and elsewhere.\u003c/p>\n\u003cp>One of the studies will examine electroconvulsive therapy — its impact on quality of life and its potential for relieving the symptoms. Another will compare the effectiveness and safety of three strategies — using magnetic fields to stimulate nerve cells in the brain, adding an antipsychotic medication or switching to a specific antidepressant. The research will assess how these approaches affect the patients’ ability to function at home and work.\u003c/p>\n\u003cp>The third and largest study, with about 1,500 patients, will focus specifically on older adults, testing different drugs and studying how aging affects the risk and benefits of antidepressants. UCLA, where Kramer-Carter is being treated, is part of the third study, which will weigh life circumstances and disabilities in addition to depression.\u003c/p>\n\u003cp>The grants represent an “unprecedented opportunity to look at this population,” Lavretsky said.\u003c/p>\n\u003cp>“It will be a comprehensive look at the condition, why it happens and what are the ways of alleviating suffering,” she said. “Are there some similarities among all people with treatment-resistant depression? I suspect we will find some.”\u003c/p>\n\u003cp>On a recent afternoon, Rini Kramer-Carter visited Lavretsky at UCLA. She said the only time she truly escapes her sadness is when she plays percussion along with other musicians. But she hasn’t been playing lately, and she has been sleeping up to 20 hours a day.\u003c/p>\n\u003cp>\u003cimg class=\"size-medium wp-image-257360\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Prozac-428x600.jpg\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/Prozac-428x600.jpg 428w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Prozac-400x560.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Prozac.jpg 731w\" sizes=\"(max-width: 428px) 100vw, 428px\">\u003c/p>\n\u003cp>“If I can stay in bed all day, that’s what I do,” she said.\u003c/p>\n\u003cp>Sometimes she watches TV comedies to try to dissipate her black moods.\u003c/p>\n\u003cp>Kramer-Carter said she learned about Lavretsky after seeing a newspaper ad for another research study, of a drug typically used to treat early-stage dementia. During their appointment, Lavretsky went over a list of questions included in the study. “On a scale of zero to 10, where do you place yourself in terms of depression?” the doctor asked her. Nine, she responded.\u003c/p>\n\u003cp>She told Lavretsky she sometimes felt restless and anxious, but not suicidal.\u003c/p>\n\u003cp>“Do you feel full of energy?” Lavretsky asked.\u003c/p>\n\u003cp>“Do I look like I am full of energy?” she responded with a sigh.\u003c/p>\n\u003cp>Lavretsky told her that no pill will completely fix her problems, but medication might give her more energy and the ability to cope. Kramer-Carter said she knows a drug won’t produce any miracles. She just wants some relief.\u003c/p>\n\u003cp>“I just want to be able to live my life,” she said.\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/\">Kaiser Health News\u003c/a>, an editorially independent program of the \u003ca href=\"http://kff.org/\">Kaiser Family Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "'#SaveJosh' Movement Sparks Push for Experimental Drugs",
"title": "'#SaveJosh' Movement Sparks Push for Experimental Drugs",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>At age 7, Josh Hardy became the poster child for a movement to help desperately ill or dying patients access experimental therapies which, they hope, will save their lives.\u003c/p>\n\u003cp>People around the world rallied 2½ years ago when a small biotech company refused to provide the Fredericksburg, Va., boy, who had battled cancer since infancy, with an experimental drug that doctors believed could save Josh from a life-threatening infection. Within days, a social media campaign called #SaveJosh, sparked by his mother’s anguished Facebook post and propelled by well-connected supporters, spurred thousands of people to contact the company, Chimerix Inc. of North Carolina, prompting it to release the drug.\u003c/p>\n\u003cp>For a time, Josh recovered. But his body remained weakened by disease, and Josh died last month at age 10.\u003c/p>\n\u003cp>Yet the #SaveJosh campaign has had an enduring impact on efforts to expand “compassionate use” of experimental therapies.\u003c/p>\n\u003cp>Josh’s story — and the plight of thousands of others facing life-threatening diseases with no government-approved therapies — has inspired multiple, sometimes conflicting efforts by government, industry and activists to make experimental medications more widely available.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The Food and Drug Administration, whose staff initiated the clinical trial that provided Josh his medication, has reduced the time that doctors spend requesting an unapproved drug to just 45 minutes. The agency says it approves 99 percent of such applications, granting most requests in four days and emergency requests within hours. The agency is even considering hiring “navigators” to walk doctors through the process.\u003c/p>\n\u003cp>Nonetheless, some patient advocates are leading a drive to provide access to experimental drugs without the FDA’s help.\u003c/p>\n\u003cp>Thirty-two states have passed laws designed to give patients the “right to try” an unapproved medication, by protecting doctors who provide such therapies from losing their state medical licenses. Republicans have included the right to try unapproved drugs in their national presidential platform.\u003c/p>\n\u003cfigure id=\"attachment_257510\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003cimg class=\"size-full wp-image-257510\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770.jpg\" alt=\"From left, Laura McLinn, of Indianapolis, her son Jordan, 7, and Sen. Ron Johnson, R-Wis., pose for a picture. \" width=\"770\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770-400x266.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770-768x512.jpg 768w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003cfigcaption class=\"wp-caption-text\">From left, Laura McLinn, of Indianapolis, her son Jordan, 7, and Sen. Ron Johnson, R-Wis., pose for a picture. \u003ccite>(Tom Williams/CQ Roll Call)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>California became the 32\u003csup>nd\u003c/sup> state to pass such a law last week when Gov. Jerry Brown signed a bill sponsored by Assemblyman Ian Calderon. Brown vetoed a similar bill last year.\u003c/p>\n\u003cp>The law, \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160AB1668\" target=\"_blank\">Assembly Bill 1668,\u003c/a> allows terminally ill patients who have exhausted their options to access medications that have not yet been approved by the FDA. The “right to try” law also protects physicians from discipline if they treat a terminally patient with a drug that is still in trials.\u003c/p>\n\u003cp>Lina Clark and her husband, David Huntley, started advocating for right-to-try legislation in 2015 because they grew frustrated with the inability to access drugs still in the FDA approval pipeline. Huntley, who testified before legislators in Sacramento as part of their effort to change the law, died of Lou Gehrig’s disease last year.\u003c/p>\n\u003cp>“It is a very swift moving disease,” said Clark, who lives in San Diego. “That is why the right to try laws are so important. If there is a treatment that is showing great promise, you can save lives or extend lives, or at the minimum alleviate suffering.”\u003c/p>\n\u003cp>Clark said she was grateful that California and so many other states have passed the laws. “I think it’s sending a message to the FDA as well as our Congress that this is the will of the people,” she said.\u003c/p>\n\u003cp>Christina Sandefur, executive vice president at the libertarian Goldwater Institute, which has coordinated right-to-try efforts, said terminally ill patients shouldn’t have to ask for a “permission slip” from the FDA. “If you are dying and you’ve exhausted all other options and this medication has passed basic safety testing, you should be able to work directly with the drug companies and your doctor without having to go through the FDA.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'If there is a treatment that is showing great promise, you can save lives or extend lives, or at the minimum alleviate suffering.'\u003ccite>Lina Clark\u003c/cite>\u003c/aside>\n\u003cp>Yet even some supporters of the right to try acknowledge the state laws have helped relatively few patients.\u003c/p>\n\u003cp>Sen. Ron Johnson (R-Wis.) chairman of the Homeland Security and Governmental Affairs Committee, introduced a federal right-to-try bill in May as a way to bolster the state initiatives. At a hearing in September, Johnson said his bill “simply says patients, who have no alternative and are facing death, should have the right to try to save their own lives — and the right to hope.”\u003c/p>\n\u003cp>\u003cstrong>Drug developers get the message\u003c/strong>\u003c/p>\n\u003cp>The renewed interest in compassionate use — which first emerged as a national issue during the AIDS crisis of the 1980s — also has spurred pharmaceutical companies to ramp up “expanded access” programs.\u003c/p>\n\u003cp>Some are concerned that social media campaigns give unfair advantages to families who are well-connected and media-savvy. Minorities, immigrants and people who aren’t fluent in English could be less able to mount effective campaigns, said Alison Bateman-House, a bioethicist at New York University Langone Medical Center. She’s been working with Johnson & Johnson to help ensure its compassionate use system allocates drugs fairly.\u003c/p>\n\u003cp>Marathon Pharmaceuticals, which is developing a steroid to treat a fatal disease called Duchenne muscular dystrophy, has been working with patient advocacy groups to enroll patients in its compassionate use program. The Illinois company anticipates enrolling 800 patients by February in its expanded access program for the steroid, called deflazacort.[contextly_sidebar id=\"iuK8vS5MXWGFCwnvt55mBoVFH47qvbl1\"]\u003c/p>\n\u003cp>While some drug developers were moved by Josh’s plight, others were motivated by a fear of negative publicity, Bateman-House said. Almost overnight, Chimerix became a symbol of corporate indifference. Critics posted the home address of Chimerix executives online, and some received death threats. The company replaced its CEO within a month of the controversy.\u003c/p>\n\u003cp>“The majority of the pharmaceutical industry suddenly got terrified that they were going to be the next Chimerix,” Bateman-House said.\u003c/p>\n\u003cp>And while drug companies tend to look like the bad guys when they deny drug access, Bateman-House said there are legitimate reasons for caution. Experimental medications haven’t been fully tested for safety and could make people with terminal illnesses die faster and in more pain.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Patients who have no alternative and are facing death, should have the right to try to save their own lives — and the right to hope.'\u003ccite>Sen. Ron Johnson (R-Wis.)\u003c/cite>\u003c/aside>\n\u003cp>“Companies worry about the risk,” said Richard Klein, director of the FDA’s patient liaison program. His story was “really public and really in the limelight. If he had not done well, what would have happened to that tiny little company? They would have been at a tremendous disadvantage.”\u003c/p>\n\u003cp>\u003cstrong>Patient advocates disagree on strategy\u003c/strong>\u003c/p>\n\u003cp>Advocates for people with life-threatening illnesses disagree about the best way to expand access to experimental therapies.\u003c/p>\n\u003cp>Laura McLinn, an Indianapolis mother whose 7-year-old suffers from Duchenne muscular dystrophy, supports right-to-try laws. She championed Indiana’s right-to-try legislation, and her son, Jordan, stood next to Gov. Mike Pence when he signed the bill into law.\u003c/p>\n\u003cp>Although Jordan looks perpetually cheerful, dressed for public photographs in a firefighter costume and helmet, he’s already beginning to decline. Jordan gets tired faster than he used to. He cries at night when his body hurts. He falls and can’t keep up with his friends. “He can’t do the things they are dong at recess and he doesn’t understand why,” McLinn told a Senate committee in February.\u003c/p>\n\u003cp>In spite of the McLinn family’s support for the right-to-try movement, Indiana’s law hasn’t helped Jordan access any experimental therapies.\u003c/p>\n\u003cp>Although Jordan is taking an unapproved steroid, McLinn hasn’t accessed it through right-to-try laws. She orders the medication through the mail from an overseas manufacturer. The FDA permits these orders under certain circumstances, such as when patients with serious disease have no alternatives.\u003c/p>\n\u003cp>McLinn said Jordan’s best hope for a medical breakthrough will come from a traditional clinical trial, overseen by the FDA and run by a Massachusetts pharmaceutical company, Sarepta Therapeutics, which \u003ca href=\"http://khn.org/news/fda-approves-first-drug-to-treat-rare-form-of-muscular-dystrophy/\">won approval in September\u003c/a> for another muscular dystrophy drug. McLinn said she hopes her son will begin the trial within months.\u003c/p>\n\u003cp>Some say right-to-try laws have accomplished little in the past two years.\u003c/p>\n\u003cfigure id=\"attachment_257511\" class=\"wp-caption aligncenter\" style=\"max-width: 760px\">\u003cimg class=\"size-full wp-image-257511\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Josh-Hardy.jpg\" alt=\"Josh Hardy takes aim at his brother Jude while playing at home. He died in September 2016.\" width=\"760\" height=\"487\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/Josh-Hardy.jpg 760w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Josh-Hardy-400x256.jpg 400w\" sizes=\"(max-width: 760px) 100vw, 760px\">\u003cfigcaption class=\"wp-caption-text\">Josh Hardy takes aim at his brother Jude while playing at home. He died in September 2016. \u003ccite>(Peter Cihelka/The Free Lance–Star)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“The right-to-try laws are something that a lot of families and patients are interested in, but they don’t really have any teeth in them,” said Dr. Valerie Cwik, executive vice president and chief medical and scientific officer at the Muscular Dystrophy Association.\u003c/p>\n\u003cp>Right-to-try laws wouldn’t have helped Josh Hardy, because the laws don’t require drug developers to actually make their medications available, Bateman-House said. The laws also don’t require that insurance companies pay for the treatments. The movement’s main intent is to undermine the FDA, Bateman-House said.\u003c/p>\n\u003cp>“The cruel reality with the right-to-try legislation is that it will not grant patients the immediate access to treatments they desperately need,” said Andrew McFadyen, executive director of the Isaac Foundation, a nonprofit based in Ontario, Canada, that funds research to fight MPS, the fatal genetic disease that afflicts his 12-year-old son.\u003c/p>\n\u003cp>The first doctor to openly acknowledge using a state right-to-try law, Houston cancer specialist Ebrahim Delpassand, came forward in September at Johnson’s hearing, where he testified via video. Delpassand said that he has given an unapproved drug, LU-177, to 78 patients with advanced neuroendocrine cancers under Texas’s right-to-try law.\u003c/p>\n\u003cp>Those numbers are dwarfed by the number granted expanded access by the FDA, which last year approved 1,262 requests for all drugs. The actual number of patients included in these FDA requests is much larger, because some requests were made on behalf of trials that include hundreds or even thousands of patients.\u003c/p>\n\u003cp>For example, about 35,000 patients received the lung cancer drug Iressa through expanded access before that drug was approved, said Klein.\u003c/p>\n\u003cp>At the Senate hearing, Johnson acknowledged that state right-to-try laws haven’t produced as many big wins as supporters had hoped.\u003c/p>\n\u003cp>Although state right-to-try laws protect doctors from losing their licenses if they prescribe unapproved drugs, physicians may be reluctant to use the laws, for fear of violating federal regulations, Johnson said.\u003c/p>\n\u003cp>Even in a right-to-try state, doctors such as Delpassand “are taking a huge risk” in providing unapproved treatments, Johnson said. “We need the federal law for the state laws to kick in. Until the federal government acts, the state laws are not effective.”\u003c/p>\n\u003cp>\u003cem>Anna Gorman contributed reporting. \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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"excerpt": "How a young boy with terminal cancer inspired dying patients and their families to fight for access to experimental therapies they hope will save their lives.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>At age 7, Josh Hardy became the poster child for a movement to help desperately ill or dying patients access experimental therapies which, they hope, will save their lives.\u003c/p>\n\u003cp>People around the world rallied 2½ years ago when a small biotech company refused to provide the Fredericksburg, Va., boy, who had battled cancer since infancy, with an experimental drug that doctors believed could save Josh from a life-threatening infection. Within days, a social media campaign called #SaveJosh, sparked by his mother’s anguished Facebook post and propelled by well-connected supporters, spurred thousands of people to contact the company, Chimerix Inc. of North Carolina, prompting it to release the drug.\u003c/p>\n\u003cp>For a time, Josh recovered. But his body remained weakened by disease, and Josh died last month at age 10.\u003c/p>\n\u003cp>Yet the #SaveJosh campaign has had an enduring impact on efforts to expand “compassionate use” of experimental therapies.\u003c/p>\n\u003cp>Josh’s story — and the plight of thousands of others facing life-threatening diseases with no government-approved therapies — has inspired multiple, sometimes conflicting efforts by government, industry and activists to make experimental medications more widely available.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The Food and Drug Administration, whose staff initiated the clinical trial that provided Josh his medication, has reduced the time that doctors spend requesting an unapproved drug to just 45 minutes. The agency says it approves 99 percent of such applications, granting most requests in four days and emergency requests within hours. The agency is even considering hiring “navigators” to walk doctors through the process.\u003c/p>\n\u003cp>Nonetheless, some patient advocates are leading a drive to provide access to experimental drugs without the FDA’s help.\u003c/p>\n\u003cp>Thirty-two states have passed laws designed to give patients the “right to try” an unapproved medication, by protecting doctors who provide such therapies from losing their state medical licenses. Republicans have included the right to try unapproved drugs in their national presidential platform.\u003c/p>\n\u003cfigure id=\"attachment_257510\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003cimg class=\"size-full wp-image-257510\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770.jpg\" alt=\"From left, Laura McLinn, of Indianapolis, her son Jordan, 7, and Sen. Ron Johnson, R-Wis., pose for a picture. \" width=\"770\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770-400x266.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/jordanmclinn_righttotry_getty_770-768x512.jpg 768w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003cfigcaption class=\"wp-caption-text\">From left, Laura McLinn, of Indianapolis, her son Jordan, 7, and Sen. Ron Johnson, R-Wis., pose for a picture. \u003ccite>(Tom Williams/CQ Roll Call)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>California became the 32\u003csup>nd\u003c/sup> state to pass such a law last week when Gov. Jerry Brown signed a bill sponsored by Assemblyman Ian Calderon. Brown vetoed a similar bill last year.\u003c/p>\n\u003cp>The law, \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160AB1668\" target=\"_blank\">Assembly Bill 1668,\u003c/a> allows terminally ill patients who have exhausted their options to access medications that have not yet been approved by the FDA. The “right to try” law also protects physicians from discipline if they treat a terminally patient with a drug that is still in trials.\u003c/p>\n\u003cp>Lina Clark and her husband, David Huntley, started advocating for right-to-try legislation in 2015 because they grew frustrated with the inability to access drugs still in the FDA approval pipeline. Huntley, who testified before legislators in Sacramento as part of their effort to change the law, died of Lou Gehrig’s disease last year.\u003c/p>\n\u003cp>“It is a very swift moving disease,” said Clark, who lives in San Diego. “That is why the right to try laws are so important. If there is a treatment that is showing great promise, you can save lives or extend lives, or at the minimum alleviate suffering.”\u003c/p>\n\u003cp>Clark said she was grateful that California and so many other states have passed the laws. “I think it’s sending a message to the FDA as well as our Congress that this is the will of the people,” she said.\u003c/p>\n\u003cp>Christina Sandefur, executive vice president at the libertarian Goldwater Institute, which has coordinated right-to-try efforts, said terminally ill patients shouldn’t have to ask for a “permission slip” from the FDA. “If you are dying and you’ve exhausted all other options and this medication has passed basic safety testing, you should be able to work directly with the drug companies and your doctor without having to go through the FDA.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'If there is a treatment that is showing great promise, you can save lives or extend lives, or at the minimum alleviate suffering.'\u003ccite>Lina Clark\u003c/cite>\u003c/aside>\n\u003cp>Yet even some supporters of the right to try acknowledge the state laws have helped relatively few patients.\u003c/p>\n\u003cp>Sen. Ron Johnson (R-Wis.) chairman of the Homeland Security and Governmental Affairs Committee, introduced a federal right-to-try bill in May as a way to bolster the state initiatives. At a hearing in September, Johnson said his bill “simply says patients, who have no alternative and are facing death, should have the right to try to save their own lives — and the right to hope.”\u003c/p>\n\u003cp>\u003cstrong>Drug developers get the message\u003c/strong>\u003c/p>\n\u003cp>The renewed interest in compassionate use — which first emerged as a national issue during the AIDS crisis of the 1980s — also has spurred pharmaceutical companies to ramp up “expanded access” programs.\u003c/p>\n\u003cp>Some are concerned that social media campaigns give unfair advantages to families who are well-connected and media-savvy. Minorities, immigrants and people who aren’t fluent in English could be less able to mount effective campaigns, said Alison Bateman-House, a bioethicist at New York University Langone Medical Center. She’s been working with Johnson & Johnson to help ensure its compassionate use system allocates drugs fairly.\u003c/p>\n\u003cp>Marathon Pharmaceuticals, which is developing a steroid to treat a fatal disease called Duchenne muscular dystrophy, has been working with patient advocacy groups to enroll patients in its compassionate use program. The Illinois company anticipates enrolling 800 patients by February in its expanded access program for the steroid, called deflazacort.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>While some drug developers were moved by Josh’s plight, others were motivated by a fear of negative publicity, Bateman-House said. Almost overnight, Chimerix became a symbol of corporate indifference. Critics posted the home address of Chimerix executives online, and some received death threats. The company replaced its CEO within a month of the controversy.\u003c/p>\n\u003cp>“The majority of the pharmaceutical industry suddenly got terrified that they were going to be the next Chimerix,” Bateman-House said.\u003c/p>\n\u003cp>And while drug companies tend to look like the bad guys when they deny drug access, Bateman-House said there are legitimate reasons for caution. Experimental medications haven’t been fully tested for safety and could make people with terminal illnesses die faster and in more pain.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Patients who have no alternative and are facing death, should have the right to try to save their own lives — and the right to hope.'\u003ccite>Sen. Ron Johnson (R-Wis.)\u003c/cite>\u003c/aside>\n\u003cp>“Companies worry about the risk,” said Richard Klein, director of the FDA’s patient liaison program. His story was “really public and really in the limelight. If he had not done well, what would have happened to that tiny little company? They would have been at a tremendous disadvantage.”\u003c/p>\n\u003cp>\u003cstrong>Patient advocates disagree on strategy\u003c/strong>\u003c/p>\n\u003cp>Advocates for people with life-threatening illnesses disagree about the best way to expand access to experimental therapies.\u003c/p>\n\u003cp>Laura McLinn, an Indianapolis mother whose 7-year-old suffers from Duchenne muscular dystrophy, supports right-to-try laws. She championed Indiana’s right-to-try legislation, and her son, Jordan, stood next to Gov. Mike Pence when he signed the bill into law.\u003c/p>\n\u003cp>Although Jordan looks perpetually cheerful, dressed for public photographs in a firefighter costume and helmet, he’s already beginning to decline. Jordan gets tired faster than he used to. He cries at night when his body hurts. He falls and can’t keep up with his friends. “He can’t do the things they are dong at recess and he doesn’t understand why,” McLinn told a Senate committee in February.\u003c/p>\n\u003cp>In spite of the McLinn family’s support for the right-to-try movement, Indiana’s law hasn’t helped Jordan access any experimental therapies.\u003c/p>\n\u003cp>Although Jordan is taking an unapproved steroid, McLinn hasn’t accessed it through right-to-try laws. She orders the medication through the mail from an overseas manufacturer. The FDA permits these orders under certain circumstances, such as when patients with serious disease have no alternatives.\u003c/p>\n\u003cp>McLinn said Jordan’s best hope for a medical breakthrough will come from a traditional clinical trial, overseen by the FDA and run by a Massachusetts pharmaceutical company, Sarepta Therapeutics, which \u003ca href=\"http://khn.org/news/fda-approves-first-drug-to-treat-rare-form-of-muscular-dystrophy/\">won approval in September\u003c/a> for another muscular dystrophy drug. McLinn said she hopes her son will begin the trial within months.\u003c/p>\n\u003cp>Some say right-to-try laws have accomplished little in the past two years.\u003c/p>\n\u003cfigure id=\"attachment_257511\" class=\"wp-caption aligncenter\" style=\"max-width: 760px\">\u003cimg class=\"size-full wp-image-257511\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Josh-Hardy.jpg\" alt=\"Josh Hardy takes aim at his brother Jude while playing at home. He died in September 2016.\" width=\"760\" height=\"487\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/Josh-Hardy.jpg 760w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Josh-Hardy-400x256.jpg 400w\" sizes=\"(max-width: 760px) 100vw, 760px\">\u003cfigcaption class=\"wp-caption-text\">Josh Hardy takes aim at his brother Jude while playing at home. He died in September 2016. \u003ccite>(Peter Cihelka/The Free Lance–Star)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“The right-to-try laws are something that a lot of families and patients are interested in, but they don’t really have any teeth in them,” said Dr. Valerie Cwik, executive vice president and chief medical and scientific officer at the Muscular Dystrophy Association.\u003c/p>\n\u003cp>Right-to-try laws wouldn’t have helped Josh Hardy, because the laws don’t require drug developers to actually make their medications available, Bateman-House said. The laws also don’t require that insurance companies pay for the treatments. The movement’s main intent is to undermine the FDA, Bateman-House said.\u003c/p>\n\u003cp>“The cruel reality with the right-to-try legislation is that it will not grant patients the immediate access to treatments they desperately need,” said Andrew McFadyen, executive director of the Isaac Foundation, a nonprofit based in Ontario, Canada, that funds research to fight MPS, the fatal genetic disease that afflicts his 12-year-old son.\u003c/p>\n\u003cp>The first doctor to openly acknowledge using a state right-to-try law, Houston cancer specialist Ebrahim Delpassand, came forward in September at Johnson’s hearing, where he testified via video. Delpassand said that he has given an unapproved drug, LU-177, to 78 patients with advanced neuroendocrine cancers under Texas’s right-to-try law.\u003c/p>\n\u003cp>Those numbers are dwarfed by the number granted expanded access by the FDA, which last year approved 1,262 requests for all drugs. The actual number of patients included in these FDA requests is much larger, because some requests were made on behalf of trials that include hundreds or even thousands of patients.\u003c/p>\n\u003cp>For example, about 35,000 patients received the lung cancer drug Iressa through expanded access before that drug was approved, said Klein.\u003c/p>\n\u003cp>At the Senate hearing, Johnson acknowledged that state right-to-try laws haven’t produced as many big wins as supporters had hoped.\u003c/p>\n\u003cp>Although state right-to-try laws protect doctors from losing their licenses if they prescribe unapproved drugs, physicians may be reluctant to use the laws, for fear of violating federal regulations, Johnson said.\u003c/p>\n\u003cp>Even in a right-to-try state, doctors such as Delpassand “are taking a huge risk” in providing unapproved treatments, Johnson said. “We need the federal law for the state laws to kick in. Until the federal government acts, the state laws are not effective.”\u003c/p>\n\u003cp>\u003cem>Anna Gorman contributed reporting. \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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"content": "\u003cp>No news is good news when it comes to the fortunes of blood-testing company Theranos.\u003c/p>\n\u003cp>And yesterday, there was news.\u003c/p>\n\u003cp>Company CEO Elizabeth Holmes posted an \u003ca href=\"https://news.theranos.com/2016/10/05/an-open-letter-elizabeth-holmes/\" target=\"_blank\">open letter\u003c/a> Wednesday announcing that Theranos will shut down its two clinical labs and its handful of remaining blood-testing centers. That will result in layoffs for about 340 employees -- approximately 40 percent of the company's workforce -- in Arizona, California and Pennsylvania.\u003c/p>\n\u003cp>Holmes said in her letter, addressed to \"stakeholders,\" that the company will now focus on the development of a portable blood-testing device, which Holmes unveiled at a scientific conference in August.\u003c/p>\n\u003cp>Theranos calls that product a miniLab, and at least some lab experts who we and other media outlets spoke to \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/07/29/theranos-elizabeth-holmes-will-face-1000-scientists-monday-can-she-say-anything-to-gain-their-trust/\" target=\"_blank\">did not think\u003c/a> it represented a significant advance in the field.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Holmes' announcement yesterday comes in the midst of the company's appeal of severe sanctions imposed by the Centers for Medicare & Medicaid Services, which among other penalties banned Holmes from owning or running any clinical laboratory for two years. The sanctions stem from deficiencies at Theranos' Newark, California lab, including problems with a blood-clotting test that CMS judged to be life-threatening. That lab has been closed since July, when regulators revoked the company's license to operate it.\u003c/p>\n\u003cp>Theranos has another lab in Scottsdale, Arizona, so now that will be shuttered as well. But because the government's sanctions preclude Holmes from owning or operating any lab, it's unclear how Holmes could have stayed with the company should Theranos have wished to keep its Arizona lab open. And Holmes, apparently, isn't going anywhere. At least, that seemed to be the case in mid-July, when Theranos issued a sort of \u003ca href=\"https://news.theranos.com/2016/07/19/theranos-statement-on-cms-findings/\" target=\"_blank\">FAQ\u003c/a> about what the government's sanctions meant for its operations.\u003c/p>\n\u003cp>\"The clinical lab is just one of Theranos’ many opportunities to provide access to high-integrity, affordable and actionable health care information, and the company will continue to carry out its mission under the leadership of its founder and CEO, Elizabeth Holmes,\" the company said.\u003c/p>\n\u003cp>In her open letter yesterday, Holmes said Theranos had installed a new executive team \"leading our work toward obtaining FDA clearances, building commercial partnerships, and pursuing publications in scientific journals. We are fortunate to have supporters and investors who believe deeply in our mission of affordable, less invasive lab testing, and to have the runway to realize our vision.\"\u003c/p>\n\u003cp>We sent Theranos and Hill+Knowlton Strategies, which Theranos uses for media relations, a query as to how the shuttering of its consumer blood-testing business might affect its appeal of the sanctions. Hill+Knowlton said Theranos would have no comment beyond Holmes' open letter \"at this time.\"\u003c/p>\n\u003cp>CMS has said it routinely negotiates with companies that it penalizes, but the circumstances for which it lifts sanctions did not seem to apply to Theranos. CMS also said at one point that closing down its labs would not be enough to prevent the penalties from being implemented.\u003c/p>\n\u003cp>If Theranos has no further comment right now, here's someone who does: Wall Street Journal reporter John Carreyrou, whose \u003ca href=\"http://www.wsj.com/articles/theranos-has-struggled-with-blood-tests-1444881901\" target=\"_blank\">investigative reporting\u003c/a> heralded the beginning of the end for Theranos' status as a golden child of Silicon Valley \"disruption.\" Carreyrou yesterday indulged in a victory tweet:\u003c/p>\n\u003cp>https://twitter.com/JohnCarreyrou/status/783844650213715968\u003c/p>\n\u003cp>\u003cstrong>Litany of Woes\u003c/strong>\u003c/p>\n\u003cp>We won't go into the specifics of the many developments that have led to Theranos in just a year's time becoming -- it's probably fair to say -- a corporate pariah. (See our \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/07/14/the-rise-and-fall-of-theranos-a-cartoon-history/\" target=\"_blank\">cartoon history of the company here\u003c/a> for more.) Theranos made its name by touting what it said was a revolutionary diagnostic technology, which allowed for dozens of blood tests from just a few drops of blood, and for extremely low prices.\u003c/p>\n\u003cp>A high-profile partnership with Walgreens, opening dozens of Theranos blood-testing centers within the pharmacy chain’s stores, gave its technology the imprimatur of a major health care provider.\u003c/p>\n\u003cp>Investors piled on, bestowing the company with a $9 billion valuation, according to Forbes, $4.5 billion of which would accrue to Holmes.\u003c/p>\n\u003cp>But it all came tumbling down -- rapidly. The lab testing community had already been grumbling that Theranos had never published in a a single word of proof in a peer-reviewed journal that its methods worked. Then came \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/01/26/for-theranos-the-bad-news-keeps-coming/\">Wall Street Journal articles alleging\u003c/a>, among other improprieties, that Theranos failed to report tests showing its vaunted tech may not be accurate. CMS soon threatened its sanctions, which were based on an unrelated lab inspection. Scientific studies emerged that showed Theranos' test results deviated from norms; \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/06/12/walgreens-shutting-down-theranos-centers-immediately-as-it-ends-partnership/\">Walgreens bailed\u003c/a>; the company invalidated tens of thousands of patient blood tests; lawsuits proliferated; the SEC and U.S. Attorney's Office for Northern California opened investigations; and an attempted comeback at the annual meeting of the American Association for Clinical Chemistry was a bust: attendees had fully expected, at long last, some hard validating data, but instead got what some characterized as a marketing presentation for a not overly exciting new product.\u003c/p>\n\u003cp>Plus there's the whole \u003ca href=\"http://www.vanityfair.com/hollywood/2016/06/jennifer-lawrence-theranos-elizabeth-holmes\" target=\"_blank\">Jennifer Lawrence thing\u003c/a>. ...\u003c/p>\n\u003cp>More to come, we're sure.\u003c/p>\n\u003cp>Here's yesterday's full \u003ca href=\"https://news.theranos.com/2016/10/05/an-open-letter-elizabeth-holmes/\" target=\"_blank\">open letter \u003c/a>from Holmes on Theranos' website:\u003c/p>\n\u003cblockquote>\u003cp>For our stakeholders,\u003c/p>\n\u003cp>After many months spent assessing our strengths and addressing our weaknesses, we have moved to structure our company around the model best aligned with our core values and mission.\u003c/p>\n\u003cp>We have decided to close our clinical labs and Theranos Wellness Centers, which will impact approximately 340 employees in Arizona, California, and Pennsylvania. We are profoundly grateful to these team members, many of whom have devoted years to Theranos and our mission, for their commitment to our company and our guests.\u003c/p>\n\u003cp>We will return our undivided attention to our miniLab platform. Our ultimate goal is to commercialize miniaturized, automated laboratories capable of small-volume sample testing, with an emphasis on vulnerable patient populations, including oncology, pediatrics, and intensive care.\u003c/p>\n\u003cp>We have a new executive team leading our work toward obtaining FDA clearances, building commercial partnerships, and pursuing publications in scientific journals.\u003c/p>\n\u003cp>We are fortunate to have supporters and investors who believe deeply in our mission of affordable, less invasive lab testing, and to have the runway to realize our vision.\u003c/p>\n\u003cp>I look forward to sharing more with you as we progress along the way.\u003c/p>\n\u003cp>Sincerely,\u003c/p>\n\u003cp>Elizabeth Holmes\u003c/p>\u003c/blockquote>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This posted has been edited. It originally said that Theranos does not have an in-house spokesperson, which it does. \u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>No news is good news when it comes to the fortunes of blood-testing company Theranos.\u003c/p>\n\u003cp>And yesterday, there was news.\u003c/p>\n\u003cp>Company CEO Elizabeth Holmes posted an \u003ca href=\"https://news.theranos.com/2016/10/05/an-open-letter-elizabeth-holmes/\" target=\"_blank\">open letter\u003c/a> Wednesday announcing that Theranos will shut down its two clinical labs and its handful of remaining blood-testing centers. That will result in layoffs for about 340 employees -- approximately 40 percent of the company's workforce -- in Arizona, California and Pennsylvania.\u003c/p>\n\u003cp>Holmes said in her letter, addressed to \"stakeholders,\" that the company will now focus on the development of a portable blood-testing device, which Holmes unveiled at a scientific conference in August.\u003c/p>\n\u003cp>Theranos calls that product a miniLab, and at least some lab experts who we and other media outlets spoke to \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/07/29/theranos-elizabeth-holmes-will-face-1000-scientists-monday-can-she-say-anything-to-gain-their-trust/\" target=\"_blank\">did not think\u003c/a> it represented a significant advance in the field.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Holmes' announcement yesterday comes in the midst of the company's appeal of severe sanctions imposed by the Centers for Medicare & Medicaid Services, which among other penalties banned Holmes from owning or running any clinical laboratory for two years. The sanctions stem from deficiencies at Theranos' Newark, California lab, including problems with a blood-clotting test that CMS judged to be life-threatening. That lab has been closed since July, when regulators revoked the company's license to operate it.\u003c/p>\n\u003cp>Theranos has another lab in Scottsdale, Arizona, so now that will be shuttered as well. But because the government's sanctions preclude Holmes from owning or operating any lab, it's unclear how Holmes could have stayed with the company should Theranos have wished to keep its Arizona lab open. And Holmes, apparently, isn't going anywhere. At least, that seemed to be the case in mid-July, when Theranos issued a sort of \u003ca href=\"https://news.theranos.com/2016/07/19/theranos-statement-on-cms-findings/\" target=\"_blank\">FAQ\u003c/a> about what the government's sanctions meant for its operations.\u003c/p>\n\u003cp>\"The clinical lab is just one of Theranos’ many opportunities to provide access to high-integrity, affordable and actionable health care information, and the company will continue to carry out its mission under the leadership of its founder and CEO, Elizabeth Holmes,\" the company said.\u003c/p>\n\u003cp>In her open letter yesterday, Holmes said Theranos had installed a new executive team \"leading our work toward obtaining FDA clearances, building commercial partnerships, and pursuing publications in scientific journals. We are fortunate to have supporters and investors who believe deeply in our mission of affordable, less invasive lab testing, and to have the runway to realize our vision.\"\u003c/p>\n\u003cp>We sent Theranos and Hill+Knowlton Strategies, which Theranos uses for media relations, a query as to how the shuttering of its consumer blood-testing business might affect its appeal of the sanctions. Hill+Knowlton said Theranos would have no comment beyond Holmes' open letter \"at this time.\"\u003c/p>\n\u003cp>CMS has said it routinely negotiates with companies that it penalizes, but the circumstances for which it lifts sanctions did not seem to apply to Theranos. CMS also said at one point that closing down its labs would not be enough to prevent the penalties from being implemented.\u003c/p>\n\u003cp>If Theranos has no further comment right now, here's someone who does: Wall Street Journal reporter John Carreyrou, whose \u003ca href=\"http://www.wsj.com/articles/theranos-has-struggled-with-blood-tests-1444881901\" target=\"_blank\">investigative reporting\u003c/a> heralded the beginning of the end for Theranos' status as a golden child of Silicon Valley \"disruption.\" Carreyrou yesterday indulged in a victory tweet:\u003c/p>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\n\u003cp>\u003cstrong>Litany of Woes\u003c/strong>\u003c/p>\n\u003cp>We won't go into the specifics of the many developments that have led to Theranos in just a year's time becoming -- it's probably fair to say -- a corporate pariah. (See our \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/07/14/the-rise-and-fall-of-theranos-a-cartoon-history/\" target=\"_blank\">cartoon history of the company here\u003c/a> for more.) Theranos made its name by touting what it said was a revolutionary diagnostic technology, which allowed for dozens of blood tests from just a few drops of blood, and for extremely low prices.\u003c/p>\n\u003cp>A high-profile partnership with Walgreens, opening dozens of Theranos blood-testing centers within the pharmacy chain’s stores, gave its technology the imprimatur of a major health care provider.\u003c/p>\n\u003cp>Investors piled on, bestowing the company with a $9 billion valuation, according to Forbes, $4.5 billion of which would accrue to Holmes.\u003c/p>\n\u003cp>But it all came tumbling down -- rapidly. The lab testing community had already been grumbling that Theranos had never published in a a single word of proof in a peer-reviewed journal that its methods worked. Then came \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/01/26/for-theranos-the-bad-news-keeps-coming/\">Wall Street Journal articles alleging\u003c/a>, among other improprieties, that Theranos failed to report tests showing its vaunted tech may not be accurate. CMS soon threatened its sanctions, which were based on an unrelated lab inspection. Scientific studies emerged that showed Theranos' test results deviated from norms; \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/06/12/walgreens-shutting-down-theranos-centers-immediately-as-it-ends-partnership/\">Walgreens bailed\u003c/a>; the company invalidated tens of thousands of patient blood tests; lawsuits proliferated; the SEC and U.S. Attorney's Office for Northern California opened investigations; and an attempted comeback at the annual meeting of the American Association for Clinical Chemistry was a bust: attendees had fully expected, at long last, some hard validating data, but instead got what some characterized as a marketing presentation for a not overly exciting new product.\u003c/p>\n\u003cp>Plus there's the whole \u003ca href=\"http://www.vanityfair.com/hollywood/2016/06/jennifer-lawrence-theranos-elizabeth-holmes\" target=\"_blank\">Jennifer Lawrence thing\u003c/a>. ...\u003c/p>\n\u003cp>More to come, we're sure.\u003c/p>\n\u003cp>Here's yesterday's full \u003ca href=\"https://news.theranos.com/2016/10/05/an-open-letter-elizabeth-holmes/\" target=\"_blank\">open letter \u003c/a>from Holmes on Theranos' website:\u003c/p>\n\u003cblockquote>\u003cp>For our stakeholders,\u003c/p>\n\u003cp>After many months spent assessing our strengths and addressing our weaknesses, we have moved to structure our company around the model best aligned with our core values and mission.\u003c/p>\n\u003cp>We have decided to close our clinical labs and Theranos Wellness Centers, which will impact approximately 340 employees in Arizona, California, and Pennsylvania. We are profoundly grateful to these team members, many of whom have devoted years to Theranos and our mission, for their commitment to our company and our guests.\u003c/p>\n\u003cp>We will return our undivided attention to our miniLab platform. Our ultimate goal is to commercialize miniaturized, automated laboratories capable of small-volume sample testing, with an emphasis on vulnerable patient populations, including oncology, pediatrics, and intensive care.\u003c/p>\n\u003cp>We have a new executive team leading our work toward obtaining FDA clearances, building commercial partnerships, and pursuing publications in scientific journals.\u003c/p>\n\u003cp>We are fortunate to have supporters and investors who believe deeply in our mission of affordable, less invasive lab testing, and to have the runway to realize our vision.\u003c/p>\n\u003cp>I look forward to sharing more with you as we progress along the way.\u003c/p>\n\u003cp>Sincerely,\u003c/p>\n\u003cp>Elizabeth Holmes\u003c/p>\u003c/blockquote>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This posted has been edited. It originally said that Theranos does not have an in-house spokesperson, which it does. \u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Controversial Doll Therapy Catches On For Treating People With Dementia",
"title": "Controversial Doll Therapy Catches On For Treating People With Dementia",
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"content": "\u003cp>Sitting beside a neatly made crib, 88-year-old Vivian Guzofsky holds up a baby doll dressed in puppy dog pajamas.\u003c/p>\n\u003cp>\"Hello gorgeous,\" she says, laughing. \"You're so cute.\"\u003c/p>\n\u003caside class=\"pullquote alignright\">Supporters of doll therapy for dementia patients say it can lessen distress, improve communication and reduce the need for psychotropic medication. Critics say the dolls are demeaning and infantilize seniors.\u003c/aside>\n\u003cp>Guzofsky, who has Alzheimer's disease, lives on a secure memory floor at a home for seniors in Beverly Hills, Calif. She visits the dolls in the home's pretend nursery nearly every day. Sometimes Guzofsky changes their clothes or lays them down for a nap. One morning in August, she sings to them: \"You are my sunshine, my only sunshine. You make me happy when skies are gray.\"\u003c/p>\n\u003cp>No one knows whether she believes she is holding a doll or a real baby. What the staff at Sunrise Senior Living do know is that Guzofsky, who can get agitated and aggressive, is always calm when caring for the dolls.\u003c/p>\n\u003cp>Doll therapy is catching on at nursing homes and other senior facilities across the country. It's used to help ease anxiety among residents with \u003ca href=\"http://www.ninds.nih.gov/disorders/dementias/dementia.htm\">dementia,\u003c/a> who can experience personality changes, agitation and aggression. But the therapy is controversial.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Supporters say the dolls can lessen distress, improve communication and reduce the need for psychotropic medication. Critics say the dolls are demeaning and infantilize seniors.\u003c/p>\n\u003cp>Typically, caregivers will give residents the option of holding, changing or dressing the dolls, without saying whether the dolls are babies or toys. Caregivers may also use the dolls to start conversations about the residents' own children or grandchildren.\u003c/p>\n\u003cp>Care providers who use the technique say the dolls help engage elderly people who are no longer able to participate in many activities.\u003c/p>\n\u003cp>\"A lot of people with Alzheimer's are bored and may become depressed or agitated or unhappy because they aren't engaged,\" says Ruth Drew, director of family & information services at the \u003ca href=\"http://www.alz.org/\">Alzheimer's Association\u003c/a>.\u003c/p>\n\u003cp>Caregivers aren't trying to make their charges believe the dolls are real infants, Drew says. They are just \"trying to meet them where they are and communicate with them in a way that makes sense to them,\" she says.\u003c/p>\n\u003cp>But some care providers do not like the technique.\u003c/p>\n\u003cp>\"They are adults and we want to treat them like adults,\" says Stephanie Zeverino, who works in community relations at a Belmont Village center in Los Angeles. \"These are very well-educated residents.\"\u003c/p>\n\u003cp>Staff members there work with residents to play brain games that promote critical thinking, she says. And they use other types of therapy including art and music.\u003c/p>\n\u003cp>\"We want to provide a sense of dignity,\" Zeverino says.\u003c/p>\n\u003cfigure id=\"attachment_256787\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/dolls2.jpg\">\u003cimg class=\"size-full wp-image-256787\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/dolls2.jpg\" alt=\"Marilou Roos, 87, rarely speaks and sleeps much of the day. But caregiver Jessica Butler says Roos brightens up when caring for dolls.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/dolls2.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/dolls2-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/dolls2-768x576.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Marilou Roos, 87, rarely speaks and sleeps much of the day. But caregiver Jessica Butler says Roos brightens up when caring for dolls. \u003ccite>(eidi de Marco/Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003ca href=\"http://journal.frontiersin.org/article/10.3389/fpsyg.2014.00342/full\">Studies\u003c/a> on doll therapy are limited, but some \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/25160532\">research\u003c/a> has shown it can reduce the need for medications and lessen agitation, aggression and wandering.\u003c/p>\n\u003cp>\"Having the doll ... offers them an anchor or a sense of attachment in a time of uncertainty,\" says Gary Mitchell, a nurse specialist at Four Seasons Health Care facilities in Northern Ireland, and author of a new book: \u003cem>Doll Therapy in Dementia Care: Evidence and Practice.\u003c/em>\u003c/p>\n\u003cp>\"A lot of people associate the doll with their younger days and having people to care for,\" Mitchell says.\u003c/p>\n\u003cp>However, he acknowledges that doll therapy can perpetuate the stigma associated with dementia that caregivers are trying to get away from.\u003c/p>\n\u003cp>Some families worry about their relatives being laughed at when they engage in doll therapy, Mitchell says. He had the same concerns when he worked at a senior residential center. But when one resident requested that he allow her to continue caring for a doll, he saw the positive impact of the therapy. Mitchell says doll therapy should be used cautiously and more studies are needed.\u003c/p>\n\u003cp>At Sunrise Beverly Hills, the nursery is set up like a baby's room. A stuffed bear rests inside the wooden crib. On a shelf above are framed photos of Guzofsky and a few other women who regularly interact with the dolls. A few bottles, a Dr. Seuss book and diapers sit on a nearby changing table.\u003c/p>\n\u003cp>The nursery is just one of several areas designed to engage residents, says Rita Altman, senior vice president of memory care for Sunrise, which has facilities in the U.S., Canada and the United Kingdom. There are also art centers, offices, gardens and kitchens where residents may find familiar objects from their past.\u003c/p>\n\u003cp>Altman says the nurseries tend to attract residents who have an instinct to care for babies. Some people may not be able to talk anymore, but still find a sense of security with a doll, she says. \"You can read it in their body language when they pick up the doll.\"\u003c/p>\n\u003cp>Sunrise caregivers also use the dolls to spark conversations by asking questions: How many children do you have? Was your first baby a boy or a girl? What are the best things about being a mom?\u003c/p>\n\u003cp>The executive director of the Beverly Hills facility, \u003ca href=\"http://www.sunriseseniorliving.com/blog/october-2015/sunrises-jason-malone-wins-calas-outstanding-executive-director-award.aspx\">Jason Malone\u003c/a>, says he was skeptical about the use of dolls when he first heard about them.\u003c/p>\n\u003cp>\"I almost felt like we were being deceitful,\" he says. \"It didn't feel like it was real.\"\u003c/p>\n\u003cp>But he quickly changed his mind when he realized that staff could use the dolls respectfully.\u003c/p>\n\u003cp>\"We don't want to confuse treating our seniors as children,\" Malone says. \"That's not what this activity is truly about.\"\u003c/p>\n\u003cp>Guzofsky began caring for the dolls soon after moving into the facility. When asked what she likes about them, she says, \"I love babies. I have some very nice ones back where I live now.\"\u003c/p>\n\u003cp>Guzofsky's daughter, Carol Mizel, says her mom raised three children and volunteered extensively in Colorado and Mexico before being diagnosed with Alzheimer's about five years ago. Mizel doesn't see any downside to her mother caring for the dolls.\u003c/p>\n\u003cp>It is a \"creative way of dealing with her where she is now,\" she says.\u003c/p>\n\u003cp>For some residents, including 87-year-old Marilou Roos, holding the dolls is one of the only times they interact with the staff. Roos uses a wheelchair and rarely speaks. She sleeps much of the day.\u003c/p>\n\u003cp>\"There is not much [Marilou] can participate in,\" says Vladimir Kaplun, former coordinator of the secure memory floor. \"When she spends some time with the babies, she wakes up and she brightens up.\"\u003c/p>\n\u003cp>On a recent day, caregiver Jessica Butler sits next to Roos, who holds a doll against her chest and pats her on the back. She kisses the doll twice.\u003c/p>\n\u003cp>\"The baby's beautiful like you,\" Butler says.\u003c/p>\n\u003cp>\"It's a boy,\" Roos says. \"Five months.\"\u003c/p>\n\u003cp>Caring for the dolls is second nature to Roos, who made a career of being a mom to five children, according to her daughter, Ellen Swarts.\u003c/p>\n\u003cp>It's been difficult for Swarts to watch the decline of her mother, who hasn't called her by name in over a year. Watching her with the dolls helps, Swarts says.\u003c/p>\n\u003cp>\"To see the light in her eyes when she has a baby in her arms, I don't care if it's real or if it's pretending,\" she said. \"If that gives her comfort, I am a-OK with it.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003ca href=\"http://www.kaiserhealthnews.org/\">\u003cem>Kaiser Health News\u003c/em>\u003c/a>\u003cem> is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 Kaiser Health News. To see more, visit \u003ca href=\"http://www.kaiserhealthnews.org/\">Kaiser Health News\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Doll+Therapy+May+Help+Calm+People+With+Dementia%2C+But+It+Has+Critics&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"excerpt": "Hugging a doll can soothe an upset toddler, and some say it can do the same for people with dementia. But critics say this form of therapy infantilizes adults.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Sitting beside a neatly made crib, 88-year-old Vivian Guzofsky holds up a baby doll dressed in puppy dog pajamas.\u003c/p>\n\u003cp>\"Hello gorgeous,\" she says, laughing. \"You're so cute.\"\u003c/p>\n\u003caside class=\"pullquote alignright\">Supporters of doll therapy for dementia patients say it can lessen distress, improve communication and reduce the need for psychotropic medication. Critics say the dolls are demeaning and infantilize seniors.\u003c/aside>\n\u003cp>Guzofsky, who has Alzheimer's disease, lives on a secure memory floor at a home for seniors in Beverly Hills, Calif. She visits the dolls in the home's pretend nursery nearly every day. Sometimes Guzofsky changes their clothes or lays them down for a nap. One morning in August, she sings to them: \"You are my sunshine, my only sunshine. You make me happy when skies are gray.\"\u003c/p>\n\u003cp>No one knows whether she believes she is holding a doll or a real baby. What the staff at Sunrise Senior Living do know is that Guzofsky, who can get agitated and aggressive, is always calm when caring for the dolls.\u003c/p>\n\u003cp>Doll therapy is catching on at nursing homes and other senior facilities across the country. It's used to help ease anxiety among residents with \u003ca href=\"http://www.ninds.nih.gov/disorders/dementias/dementia.htm\">dementia,\u003c/a> who can experience personality changes, agitation and aggression. But the therapy is controversial.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Supporters say the dolls can lessen distress, improve communication and reduce the need for psychotropic medication. Critics say the dolls are demeaning and infantilize seniors.\u003c/p>\n\u003cp>Typically, caregivers will give residents the option of holding, changing or dressing the dolls, without saying whether the dolls are babies or toys. Caregivers may also use the dolls to start conversations about the residents' own children or grandchildren.\u003c/p>\n\u003cp>Care providers who use the technique say the dolls help engage elderly people who are no longer able to participate in many activities.\u003c/p>\n\u003cp>\"A lot of people with Alzheimer's are bored and may become depressed or agitated or unhappy because they aren't engaged,\" says Ruth Drew, director of family & information services at the \u003ca href=\"http://www.alz.org/\">Alzheimer's Association\u003c/a>.\u003c/p>\n\u003cp>Caregivers aren't trying to make their charges believe the dolls are real infants, Drew says. They are just \"trying to meet them where they are and communicate with them in a way that makes sense to them,\" she says.\u003c/p>\n\u003cp>But some care providers do not like the technique.\u003c/p>\n\u003cp>\"They are adults and we want to treat them like adults,\" says Stephanie Zeverino, who works in community relations at a Belmont Village center in Los Angeles. \"These are very well-educated residents.\"\u003c/p>\n\u003cp>Staff members there work with residents to play brain games that promote critical thinking, she says. And they use other types of therapy including art and music.\u003c/p>\n\u003cp>\"We want to provide a sense of dignity,\" Zeverino says.\u003c/p>\n\u003cfigure id=\"attachment_256787\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/dolls2.jpg\">\u003cimg class=\"size-full wp-image-256787\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/dolls2.jpg\" alt=\"Marilou Roos, 87, rarely speaks and sleeps much of the day. But caregiver Jessica Butler says Roos brightens up when caring for dolls.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/dolls2.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/dolls2-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/dolls2-768x576.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Marilou Roos, 87, rarely speaks and sleeps much of the day. But caregiver Jessica Butler says Roos brightens up when caring for dolls. \u003ccite>(eidi de Marco/Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003ca href=\"http://journal.frontiersin.org/article/10.3389/fpsyg.2014.00342/full\">Studies\u003c/a> on doll therapy are limited, but some \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/25160532\">research\u003c/a> has shown it can reduce the need for medications and lessen agitation, aggression and wandering.\u003c/p>\n\u003cp>\"Having the doll ... offers them an anchor or a sense of attachment in a time of uncertainty,\" says Gary Mitchell, a nurse specialist at Four Seasons Health Care facilities in Northern Ireland, and author of a new book: \u003cem>Doll Therapy in Dementia Care: Evidence and Practice.\u003c/em>\u003c/p>\n\u003cp>\"A lot of people associate the doll with their younger days and having people to care for,\" Mitchell says.\u003c/p>\n\u003cp>However, he acknowledges that doll therapy can perpetuate the stigma associated with dementia that caregivers are trying to get away from.\u003c/p>\n\u003cp>Some families worry about their relatives being laughed at when they engage in doll therapy, Mitchell says. He had the same concerns when he worked at a senior residential center. But when one resident requested that he allow her to continue caring for a doll, he saw the positive impact of the therapy. Mitchell says doll therapy should be used cautiously and more studies are needed.\u003c/p>\n\u003cp>At Sunrise Beverly Hills, the nursery is set up like a baby's room. A stuffed bear rests inside the wooden crib. On a shelf above are framed photos of Guzofsky and a few other women who regularly interact with the dolls. A few bottles, a Dr. Seuss book and diapers sit on a nearby changing table.\u003c/p>\n\u003cp>The nursery is just one of several areas designed to engage residents, says Rita Altman, senior vice president of memory care for Sunrise, which has facilities in the U.S., Canada and the United Kingdom. There are also art centers, offices, gardens and kitchens where residents may find familiar objects from their past.\u003c/p>\n\u003cp>Altman says the nurseries tend to attract residents who have an instinct to care for babies. Some people may not be able to talk anymore, but still find a sense of security with a doll, she says. \"You can read it in their body language when they pick up the doll.\"\u003c/p>\n\u003cp>Sunrise caregivers also use the dolls to spark conversations by asking questions: How many children do you have? Was your first baby a boy or a girl? What are the best things about being a mom?\u003c/p>\n\u003cp>The executive director of the Beverly Hills facility, \u003ca href=\"http://www.sunriseseniorliving.com/blog/october-2015/sunrises-jason-malone-wins-calas-outstanding-executive-director-award.aspx\">Jason Malone\u003c/a>, says he was skeptical about the use of dolls when he first heard about them.\u003c/p>\n\u003cp>\"I almost felt like we were being deceitful,\" he says. \"It didn't feel like it was real.\"\u003c/p>\n\u003cp>But he quickly changed his mind when he realized that staff could use the dolls respectfully.\u003c/p>\n\u003cp>\"We don't want to confuse treating our seniors as children,\" Malone says. \"That's not what this activity is truly about.\"\u003c/p>\n\u003cp>Guzofsky began caring for the dolls soon after moving into the facility. When asked what she likes about them, she says, \"I love babies. I have some very nice ones back where I live now.\"\u003c/p>\n\u003cp>Guzofsky's daughter, Carol Mizel, says her mom raised three children and volunteered extensively in Colorado and Mexico before being diagnosed with Alzheimer's about five years ago. Mizel doesn't see any downside to her mother caring for the dolls.\u003c/p>\n\u003cp>It is a \"creative way of dealing with her where she is now,\" she says.\u003c/p>\n\u003cp>For some residents, including 87-year-old Marilou Roos, holding the dolls is one of the only times they interact with the staff. Roos uses a wheelchair and rarely speaks. She sleeps much of the day.\u003c/p>\n\u003cp>\"There is not much [Marilou] can participate in,\" says Vladimir Kaplun, former coordinator of the secure memory floor. \"When she spends some time with the babies, she wakes up and she brightens up.\"\u003c/p>\n\u003cp>On a recent day, caregiver Jessica Butler sits next to Roos, who holds a doll against her chest and pats her on the back. She kisses the doll twice.\u003c/p>\n\u003cp>\"The baby's beautiful like you,\" Butler says.\u003c/p>\n\u003cp>\"It's a boy,\" Roos says. \"Five months.\"\u003c/p>\n\u003cp>Caring for the dolls is second nature to Roos, who made a career of being a mom to five children, according to her daughter, Ellen Swarts.\u003c/p>\n\u003cp>It's been difficult for Swarts to watch the decline of her mother, who hasn't called her by name in over a year. Watching her with the dolls helps, Swarts says.\u003c/p>\n\u003cp>\"To see the light in her eyes when she has a baby in her arms, I don't care if it's real or if it's pretending,\" she said. \"If that gives her comfort, I am a-OK with it.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"http://www.kaiserhealthnews.org/\">\u003cem>Kaiser Health News\u003c/em>\u003c/a>\u003cem> is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 Kaiser Health News. To see more, visit \u003ca href=\"http://www.kaiserhealthnews.org/\">Kaiser Health News\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Doll+Therapy+May+Help+Calm+People+With+Dementia%2C+But+It+Has+Critics&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Researchers Hunt for a Link Between Microbiome and Autism",
"title": "Researchers Hunt for a Link Between Microbiome and Autism",
"headTitle": "Future of You | KQED Future of You | KQED Science",
"content": "\u003cp>Maude Magali David and Christine Tataru work in a neat and clean office. Sitting on bright pink exercise balls, the research duo analyzes data, occasionally standing to write on a whiteboard.\u003c/p>\n\u003cp>The tidy setting belies the nature of the less-than-sanitary subject of their work.\u003c/p>\n\u003caside class=\"pullquote alignright\">For now, research into a link between the microbiome and autism is 'at a stage where more questions than answers are being generated.'\u003c/aside>\n\u003cp>David and Tataru are interested in poop. Specifically, they’re interested in the microbial life living in the poop of children. If they learn enough about those microbes, they hope, they will find similarities and differences between the gut-life of kids who have autism and those who don’t. And that could change therapeutic approaches to treating autism spectrum disorder.\u003c/p>\n\u003cp>David runs the \u003ca href=\"https://microbiome.stanford.edu/\" target=\"_blank\">Autism Microbiome \u003c/a>project at the Stanford University School of Medicine's \u003ca href=\"http://wall-lab.stanford.edu/\" target=\"_blank\">Wall Lab\u003c/a>, along with the lab's principal investigator, Dennis Wall. In the past several years, interest in the microbiome—bacteria, fungi and \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500141/\" target=\"_blank\"> other single-celled organisms \u003c/a>living on and within our bodies—has surged. These microbes were once considered either benign or dangerous\u003cstrong>, \u003c/strong>causing illness and disease\u003cstrong>. \u003c/strong>But we now know they also play a huge role in maintaining our health.\u003c/p>\n\u003cp>\u003cstrong>Gut Bugs Are Hot\u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_256705\" class=\"wp-caption alignright\" style=\"max-width: 450px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/kids.jpg\">\u003cimg class=\"size-medium wp-image-256705\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/kids-450x600.jpg\" alt=\"Kim and her son Jake, who has autism spectrum disorder, in a family photo. The family is participating in a study searching for links between microbiomes and autism spectrum disorder.\" width=\"450\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-450x600.jpg 450w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-400x533.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-768x1024.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-885x1180.jpg 885w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids.jpg 960w\" sizes=\"(max-width: 450px) 100vw, 450px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Kim and her son Jake, who has autism spectrum disorder, in a family photo. The family is participating in a study searching for links between microbiomes and autism spectrum disorder.\u003c/figcaption>\u003c/figure>\n\u003cp>The shift in perspective has been dramatic. Gut bugs are now \u003ca href=\"http://learn.genetics.utah.edu/content/microbiome/friends/\" target=\"_blank\">credited as being instrumental\u003c/a> in a host of critical processes: extracting food nutrients, developing organ systems, producing vitamins and training the immune system to behave properly. They have even been found to help regulate blood pressure.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>This spring the White House announced a \u003ca href=\"https://www.whitehouse.gov/blog/2016/05/13/announcing-national-microbiome-initiative\" target=\"_blank\">major new initiative \u003c/a>to coordinate the study of these all-important bugs, including \u003ca href=\"https://www.whitehouse.gov/the-press-office/2016/05/12/fact-sheet-announcing-national-microbiome-initiative\" target=\"_blank\">funding \u003c/a>of about a half-billion dollars from the federal government and scores of universities, nonprofits and business.\u003c/p>\n\u003cp>\"The microbiome is the hot thing to study now,\" says Kevin Becker, a researcher at the National Institutes of Health. \"But I think that's exciting; the research is very robust.\"\u003c/p>\n\u003cp>\u003cstrong>Link to Autism\u003c/strong>\u003c/p>\n\u003cp>In 2007, Becker was the first researcher to suggest that the microbiome \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2048743/\" target=\"_blank\">might be connected \u003c/a>to symptoms of autism spectrum disorder. In the decade since, researchers have \u003ca href=\"http://pediatrics.aappublications.org/content/133/5/872.short\" target=\"_blank\">accumulated more evidence\u003c/a> that the gastrointestinal tracts of children with ASD are \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564498/\" target=\"_blank\">often different\u003c/a>. Depending on the survey, 60 to 90 percent have irritable bowel syndrome or have complained of diarrhea, stomachaches or gluten intolerance, which inflames the gut. For example, a \u003ca href=\"http://journals.lww.com/jrnldbp/Abstract/2006/04002/Frequency_of_Gastrointestinal_Symptoms_in_Children.11.aspx\" target=\"_blank\"> study of 150 children\u003c/a> published in 2006 found that 70 percent of kids with ASD suffered from gastrointestinal woes, compared to 42 percent of developmentally disabled children and 28 percent of children with no developmental disorder.\u003c/p>\n\u003cp>A \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897394/\" target=\"_blank\">study published in \u003c/a>\u003cem>Cell \u003c/em>in 2013 studied lab mice with ASD-like symptoms, such as avoiding social interaction and compulsive and repetitive behavior\u003cstrong>.\u003c/strong> Remarkably, after subjecting the mice to the human \u003cem>Bacteroides fragilis, \u003c/em>the researchers noted the mice became less anxious and more social. The findings, wrote the authors, \"support a gut-microbiome-brain connection in ASD and identify a potential probiotic therapy for GI and behavioral symptoms of autism.\"\u003c/p>\n\u003cp>\"I read that and thought, 'OK there is something going on here!'\" says David. \"We just need a study with sufficient power to figure out what's going on in humans.\"\u003c/p>\n\u003cp>A few months later she began working with Wall, an autism and bioinformatics expert, on a project that would answer a key question: What is the connection between bacteria in the gut and autism in children?\u003c/p>\n\u003cp>The researchers reached out through social media for families with at least two children under eight who eat the same things but who differ in that at least one is free of ASD. The families—280 have signed up thus far—send in a two- to three-minute video of their kids, saliva and stool samples, and answers to a questionnaire about behavior and diet. In return, the families will receive the results (which the team cautions should not be used for diagnosis).\u003c/p>\n\u003cp>By sampling kids from the same families, the researchers are able to control for some of the factors that contribute to differences in children's gut flora\u003cstrong>, \u003c/strong>such as diet and home environment. Because the study allows for participation by subjects who never have to leave their homes, it has attracted more participants than is typical of such studies.\u003c/p>\n\u003cp>\u003cstrong>At Home With Autism\u003c/strong>\u003c/p>\n\u003cp>One family in the study lives in Pittsburgh. Kim is a busy mother whose days pass in a whirl. She has three five-year-olds: triplets Allie, Hunter and Jake. The kids love playing hide-and-seek. Allie likes dolls and princesses. If anything happens to upset her brothers, she becomes protective. Hunter likes superheroes, and Jake is into cars and trains.\u003c/p>\n\u003cp>\"Jake is the wild man,\" says Kim. \"He just wants to run and see what trouble he can get into.\"\u003c/p>\n\u003cp>Jake is the only one of the siblings with autism. And practically since birth, his mom says, he's had more stomachaches and gastrointestinal problems.\u003c/p>\n\u003cp>Even before participating in the autism study, Kim took steps to improve Jake's diet and gut health, which she believes have helped his symptoms. With fewer intestinal woes, Jake became calmer, less aggressive and more cheerful, she says.\u003c/p>\n\u003cp>When she came across a notice for the \u003ca href=\"https://microbiome.stanford.edu/\" target=\"_blank\">Autism Microbiome \u003c/a>project on Facebook, she was immediately intrigued. She appreciated the change in focus from most of the research on the disorder.\u003c/p>\n\u003cp>\"I think it's really ahead of the times,\" she says. \"A lot of people look at autism and think of it as a psychological disease, and I think of it as more medical. So anything that supports the medical community looking at autism research in a different way, I want to be part of.\"\u003c/p>\n\u003cp>After she signed up, filled out the questionnaire and sent in the requested videos, a sampling kit arrived at her door a few weeks later.\u003c/p>\n\u003cp>\"My hope is that this is going to be a way to help children in the future,\" she says.\u003c/p>\n\u003cp>\u003cstrong>'A Bit More Complex'\u003c/strong>\u003c/p>\n\u003cp>Now that enough samples have been returned from families like Kim's, researchers at the Wall lab have started looking at the early results.\u003c/p>\n\u003cp>In the first phase of their work, David, Tataru, Wall and a fourth member of the team, clinical coordinator Jena Daniels, are analyzing sequences from the stool samples and looking for similarities and differences in what bacteria are present, how abundant they are and what the community of gut bacteria look like.\u003c/p>\n\u003cp>\"We were hoping to find something clear and simple, such as \u003cem>this\u003c/em> bacteria signals autism\" says Tataru. \"Turns out, it's a bit more complex than we were expecting.\"\u003c/p>\n\u003cp>There are no immediately clear distinctions by type or number between the microbiomes of children with autism and those without. The researchers are, however, detecting some subtle differences. Kids within families are the most similar to each other. But kids with ASD in different families have microbiomes that are more alike than the microbiomes of non-autistic children in different families.\u003c/p>\n\u003cp>It's an interesting finding, even if the researchers are not sure what to make of it yet. As a 2014 review of the emerging data on the subject said, “The field is at a stage where more questions than answers are being generated.” And even some leading scientists involved in microbiome research have \u003ca href=\"http://www.nytimes.com/2015/06/28/magazine/can-the-bacteria-in-your-gut-explain-your-mood.html\" target=\"_blank\">cautioned\u003c/a> patients and their families not to get ahead of the research in looking for easy answers.\u003c/p>\n\u003cp>But for scientists like Kevin Becker at the NIH, who is not involved in the project, the turn toward the microbiome in researching ASD is a positive development. \"Genetics has been the focus for a long time and it often dominates the discussion,\" he says. \"Most autistic cases have no known genetic cause. Looking into these other paths is a welcome change.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>The Autism Microbiome project plans to submit its first research paper for publication next month.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Maude Magali David and Christine Tataru work in a neat and clean office. Sitting on bright pink exercise balls, the research duo analyzes data, occasionally standing to write on a whiteboard.\u003c/p>\n\u003cp>The tidy setting belies the nature of the less-than-sanitary subject of their work.\u003c/p>\n\u003caside class=\"pullquote alignright\">For now, research into a link between the microbiome and autism is 'at a stage where more questions than answers are being generated.'\u003c/aside>\n\u003cp>David and Tataru are interested in poop. Specifically, they’re interested in the microbial life living in the poop of children. If they learn enough about those microbes, they hope, they will find similarities and differences between the gut-life of kids who have autism and those who don’t. And that could change therapeutic approaches to treating autism spectrum disorder.\u003c/p>\n\u003cp>David runs the \u003ca href=\"https://microbiome.stanford.edu/\" target=\"_blank\">Autism Microbiome \u003c/a>project at the Stanford University School of Medicine's \u003ca href=\"http://wall-lab.stanford.edu/\" target=\"_blank\">Wall Lab\u003c/a>, along with the lab's principal investigator, Dennis Wall. In the past several years, interest in the microbiome—bacteria, fungi and \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500141/\" target=\"_blank\"> other single-celled organisms \u003c/a>living on and within our bodies—has surged. These microbes were once considered either benign or dangerous\u003cstrong>, \u003c/strong>causing illness and disease\u003cstrong>. \u003c/strong>But we now know they also play a huge role in maintaining our health.\u003c/p>\n\u003cp>\u003cstrong>Gut Bugs Are Hot\u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_256705\" class=\"wp-caption alignright\" style=\"max-width: 450px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/kids.jpg\">\u003cimg class=\"size-medium wp-image-256705\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/kids-450x600.jpg\" alt=\"Kim and her son Jake, who has autism spectrum disorder, in a family photo. The family is participating in a study searching for links between microbiomes and autism spectrum disorder.\" width=\"450\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-450x600.jpg 450w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-400x533.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-768x1024.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids-885x1180.jpg 885w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/kids.jpg 960w\" sizes=\"(max-width: 450px) 100vw, 450px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Kim and her son Jake, who has autism spectrum disorder, in a family photo. The family is participating in a study searching for links between microbiomes and autism spectrum disorder.\u003c/figcaption>\u003c/figure>\n\u003cp>The shift in perspective has been dramatic. Gut bugs are now \u003ca href=\"http://learn.genetics.utah.edu/content/microbiome/friends/\" target=\"_blank\">credited as being instrumental\u003c/a> in a host of critical processes: extracting food nutrients, developing organ systems, producing vitamins and training the immune system to behave properly. They have even been found to help regulate blood pressure.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>This spring the White House announced a \u003ca href=\"https://www.whitehouse.gov/blog/2016/05/13/announcing-national-microbiome-initiative\" target=\"_blank\">major new initiative \u003c/a>to coordinate the study of these all-important bugs, including \u003ca href=\"https://www.whitehouse.gov/the-press-office/2016/05/12/fact-sheet-announcing-national-microbiome-initiative\" target=\"_blank\">funding \u003c/a>of about a half-billion dollars from the federal government and scores of universities, nonprofits and business.\u003c/p>\n\u003cp>\"The microbiome is the hot thing to study now,\" says Kevin Becker, a researcher at the National Institutes of Health. \"But I think that's exciting; the research is very robust.\"\u003c/p>\n\u003cp>\u003cstrong>Link to Autism\u003c/strong>\u003c/p>\n\u003cp>In 2007, Becker was the first researcher to suggest that the microbiome \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2048743/\" target=\"_blank\">might be connected \u003c/a>to symptoms of autism spectrum disorder. In the decade since, researchers have \u003ca href=\"http://pediatrics.aappublications.org/content/133/5/872.short\" target=\"_blank\">accumulated more evidence\u003c/a> that the gastrointestinal tracts of children with ASD are \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564498/\" target=\"_blank\">often different\u003c/a>. Depending on the survey, 60 to 90 percent have irritable bowel syndrome or have complained of diarrhea, stomachaches or gluten intolerance, which inflames the gut. For example, a \u003ca href=\"http://journals.lww.com/jrnldbp/Abstract/2006/04002/Frequency_of_Gastrointestinal_Symptoms_in_Children.11.aspx\" target=\"_blank\"> study of 150 children\u003c/a> published in 2006 found that 70 percent of kids with ASD suffered from gastrointestinal woes, compared to 42 percent of developmentally disabled children and 28 percent of children with no developmental disorder.\u003c/p>\n\u003cp>A \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897394/\" target=\"_blank\">study published in \u003c/a>\u003cem>Cell \u003c/em>in 2013 studied lab mice with ASD-like symptoms, such as avoiding social interaction and compulsive and repetitive behavior\u003cstrong>.\u003c/strong> Remarkably, after subjecting the mice to the human \u003cem>Bacteroides fragilis, \u003c/em>the researchers noted the mice became less anxious and more social. The findings, wrote the authors, \"support a gut-microbiome-brain connection in ASD and identify a potential probiotic therapy for GI and behavioral symptoms of autism.\"\u003c/p>\n\u003cp>\"I read that and thought, 'OK there is something going on here!'\" says David. \"We just need a study with sufficient power to figure out what's going on in humans.\"\u003c/p>\n\u003cp>A few months later she began working with Wall, an autism and bioinformatics expert, on a project that would answer a key question: What is the connection between bacteria in the gut and autism in children?\u003c/p>\n\u003cp>The researchers reached out through social media for families with at least two children under eight who eat the same things but who differ in that at least one is free of ASD. The families—280 have signed up thus far—send in a two- to three-minute video of their kids, saliva and stool samples, and answers to a questionnaire about behavior and diet. In return, the families will receive the results (which the team cautions should not be used for diagnosis).\u003c/p>\n\u003cp>By sampling kids from the same families, the researchers are able to control for some of the factors that contribute to differences in children's gut flora\u003cstrong>, \u003c/strong>such as diet and home environment. Because the study allows for participation by subjects who never have to leave their homes, it has attracted more participants than is typical of such studies.\u003c/p>\n\u003cp>\u003cstrong>At Home With Autism\u003c/strong>\u003c/p>\n\u003cp>One family in the study lives in Pittsburgh. Kim is a busy mother whose days pass in a whirl. She has three five-year-olds: triplets Allie, Hunter and Jake. The kids love playing hide-and-seek. Allie likes dolls and princesses. If anything happens to upset her brothers, she becomes protective. Hunter likes superheroes, and Jake is into cars and trains.\u003c/p>\n\u003cp>\"Jake is the wild man,\" says Kim. \"He just wants to run and see what trouble he can get into.\"\u003c/p>\n\u003cp>Jake is the only one of the siblings with autism. And practically since birth, his mom says, he's had more stomachaches and gastrointestinal problems.\u003c/p>\n\u003cp>Even before participating in the autism study, Kim took steps to improve Jake's diet and gut health, which she believes have helped his symptoms. With fewer intestinal woes, Jake became calmer, less aggressive and more cheerful, she says.\u003c/p>\n\u003cp>When she came across a notice for the \u003ca href=\"https://microbiome.stanford.edu/\" target=\"_blank\">Autism Microbiome \u003c/a>project on Facebook, she was immediately intrigued. She appreciated the change in focus from most of the research on the disorder.\u003c/p>\n\u003cp>\"I think it's really ahead of the times,\" she says. \"A lot of people look at autism and think of it as a psychological disease, and I think of it as more medical. So anything that supports the medical community looking at autism research in a different way, I want to be part of.\"\u003c/p>\n\u003cp>After she signed up, filled out the questionnaire and sent in the requested videos, a sampling kit arrived at her door a few weeks later.\u003c/p>\n\u003cp>\"My hope is that this is going to be a way to help children in the future,\" she says.\u003c/p>\n\u003cp>\u003cstrong>'A Bit More Complex'\u003c/strong>\u003c/p>\n\u003cp>Now that enough samples have been returned from families like Kim's, researchers at the Wall lab have started looking at the early results.\u003c/p>\n\u003cp>In the first phase of their work, David, Tataru, Wall and a fourth member of the team, clinical coordinator Jena Daniels, are analyzing sequences from the stool samples and looking for similarities and differences in what bacteria are present, how abundant they are and what the community of gut bacteria look like.\u003c/p>\n\u003cp>\"We were hoping to find something clear and simple, such as \u003cem>this\u003c/em> bacteria signals autism\" says Tataru. \"Turns out, it's a bit more complex than we were expecting.\"\u003c/p>\n\u003cp>There are no immediately clear distinctions by type or number between the microbiomes of children with autism and those without. The researchers are, however, detecting some subtle differences. Kids within families are the most similar to each other. But kids with ASD in different families have microbiomes that are more alike than the microbiomes of non-autistic children in different families.\u003c/p>\n\u003cp>It's an interesting finding, even if the researchers are not sure what to make of it yet. As a 2014 review of the emerging data on the subject said, “The field is at a stage where more questions than answers are being generated.” And even some leading scientists involved in microbiome research have \u003ca href=\"http://www.nytimes.com/2015/06/28/magazine/can-the-bacteria-in-your-gut-explain-your-mood.html\" target=\"_blank\">cautioned\u003c/a> patients and their families not to get ahead of the research in looking for easy answers.\u003c/p>\n\u003cp>But for scientists like Kevin Becker at the NIH, who is not involved in the project, the turn toward the microbiome in researching ASD is a positive development. \"Genetics has been the focus for a long time and it often dominates the discussion,\" he says. \"Most autistic cases have no known genetic cause. Looking into these other paths is a welcome change.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The Autism Microbiome project plans to submit its first research paper for publication next month.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "USC Looks to Make East L.A. a Hub for Biotech",
"title": "USC Looks to Make East L.A. a Hub for Biotech",
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"content": "\u003cp>The University of Southern California is working to make East Los Angeles a hub for biotech research.\u003c/p>\n\u003cp>“(W)e’re hoping to develop our biotech industry in order to basically keep our students and stop the brain drain,\" says Martha Escutia, USC’s vice president of government relations.\u003c/p>\n\u003cp>The effort picked up steam in 2012, when the Los Angeles County Board of Supervisors commissioned a \u003ca href=\"http://file.lacounty.gov/SDSInter/bos/bc/217012_REPORTONCONSULTANTEVALUATIONFORAPOTENTIALCOUNTYWIDEBIOTECHNOLOGY.pdf\" target=\"_blank\">master plan\u003c/a> for developing a \u003ca href=\"http://www.latimes.com/opinion/op-ed/la-oe-0226-nikias-los-angeles-biotech-corridor-20150226-story.html\" target=\"_blank\">local biotech industry\u003c/a> that could make L.A. competitive with similar initiatives in San Francisco and San Diego.\u003c/p>\n\u003cp>The quest to develop a biotech center stems in part from the unavailability of local jobs in the field. In 2010, higher education institutions in Los Angeles County graduated more than 5,000 students with bioscience-related degrees. Many, however, have had to leave the region to find work. It took L.A. county nearly a decade, from 2001 to 2010, to add just 4,500 bioscience jobs, according to the master plan. Among the regional impediments for biotech firms is a lack of laboratory and office space close to research universities.\u003c/p>\n\u003cp>[soundcloud url=\"https://api.soundcloud.com/tracks/285881433\" 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>A biotech hub would expand USC’s existing medical campus in East L.A. and is a high priority for USC president C.L. Max Nikias, who says dozens of biotech startups with roots in USC research have left the region to set up shop.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"We are at the dawn of this new technological revolution, which is biotech,\" Nikias says. \"I don't want us to be marginalized or fall behind in this new industrial revolution.\"\u003c/p>\n\u003caside class=\"pullquote alignright\">'Why wouldn’t the local community want to receive benefits in terms of jobs, research opportunities for their students; why wouldn’t people want that?'\u003c/aside>\n\u003cp>To that end, he says, USC has recruited dozens of professors in bioscience fields over the past several years. Research institutes on brain science, Alzheimer's treatment and diabetes and obesity are located at the university.\u003c/p>\n\u003cp>USC's proposal for a biotech hub is a partnership with the California Institute of Technology, whose scientists would potentially be able to locate their startups in the area; and the Los Angeles Unified School District. Nikias envisions establishing a training center in the area for high school and community college graduates who want biotech jobs.\u003c/p>\n\u003cp>Officials at USC say the hub could create 3,000 construction and 4,000 permanent jobs that would provide employment opportunities in the largely Latino, low-income neighborhood.\u003c/p>\n\u003caside class=\"pullquote alignright\">'It is going to change the complexion of the neighborhood, literally.'\u003c/aside>\n\u003cp>\"Now why wouldn’t we want to have that in L.A.?\" Escutia says. \"And why wouldn’t the local community want to receive benefits in terms of jobs, research opportunities for their students; why wouldn’t people want that?”\u003c/p>\n\u003cp>But county officials have told USC that to move forward with the proposal, the university must first address the concerns of the area's existing community.\u003c/p>\n\u003cp>“It is going to change the complexion of the neighborhood, literally,” says Abel Salas, a poet who lives and works out of a warehouse space a few blocks north of the USC expansion site. He and others worry it could displace residents and won’t live up to the promise of job training for young people.\u003c/p>\n\u003cp>“It doesn’t seem realistic to expect people who are among the poorest and least likely to graduate from high school … to suddenly be trained or retrained to have a biotech job, and what’s going to happen to them?”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The university held its first community information meeting on Saturday. If the plan moves forward, it also requires a land deal between USC and L.A. County, which is still being hammered out.\u003c/p>\n\n",
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"excerpt": "'(W)e’re hoping to develop our biotech industry in order to basically keep our students and stop the brain drain,' says USC official.",
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"nprByline": "\u003cstrong>\u003ca href=\"https://ww2.kqed.org/news/author/scuevas/\">Steven Cuevas\u003c/a>\u003c/strong> and \u003cstrong>\u003ca href=\"https://ww2.kqed.org/news/author/katsnow/\">Kat Snow\u003c/a>\u003c/strong>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>The University of Southern California is working to make East Los Angeles a hub for biotech research.\u003c/p>\n\u003cp>“(W)e’re hoping to develop our biotech industry in order to basically keep our students and stop the brain drain,\" says Martha Escutia, USC’s vice president of government relations.\u003c/p>\n\u003cp>The effort picked up steam in 2012, when the Los Angeles County Board of Supervisors commissioned a \u003ca href=\"http://file.lacounty.gov/SDSInter/bos/bc/217012_REPORTONCONSULTANTEVALUATIONFORAPOTENTIALCOUNTYWIDEBIOTECHNOLOGY.pdf\" target=\"_blank\">master plan\u003c/a> for developing a \u003ca href=\"http://www.latimes.com/opinion/op-ed/la-oe-0226-nikias-los-angeles-biotech-corridor-20150226-story.html\" target=\"_blank\">local biotech industry\u003c/a> that could make L.A. competitive with similar initiatives in San Francisco and San Diego.\u003c/p>\n\u003cp>The quest to develop a biotech center stems in part from the unavailability of local jobs in the field. In 2010, higher education institutions in Los Angeles County graduated more than 5,000 students with bioscience-related degrees. Many, however, have had to leave the region to find work. It took L.A. county nearly a decade, from 2001 to 2010, to add just 4,500 bioscience jobs, according to the master plan. Among the regional impediments for biotech firms is a lack of laboratory and office space close to research universities.\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/285881433&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/285881433'>\n \u003c/iframe>\n \u003c/div>\u003c/p>\u003cp>\u003c/p>\n\u003cp>A biotech hub would expand USC’s existing medical campus in East L.A. and is a high priority for USC president C.L. Max Nikias, who says dozens of biotech startups with roots in USC research have left the region to set up shop.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"We are at the dawn of this new technological revolution, which is biotech,\" Nikias says. \"I don't want us to be marginalized or fall behind in this new industrial revolution.\"\u003c/p>\n\u003caside class=\"pullquote alignright\">'Why wouldn’t the local community want to receive benefits in terms of jobs, research opportunities for their students; why wouldn’t people want that?'\u003c/aside>\n\u003cp>To that end, he says, USC has recruited dozens of professors in bioscience fields over the past several years. Research institutes on brain science, Alzheimer's treatment and diabetes and obesity are located at the university.\u003c/p>\n\u003cp>USC's proposal for a biotech hub is a partnership with the California Institute of Technology, whose scientists would potentially be able to locate their startups in the area; and the Los Angeles Unified School District. Nikias envisions establishing a training center in the area for high school and community college graduates who want biotech jobs.\u003c/p>\n\u003cp>Officials at USC say the hub could create 3,000 construction and 4,000 permanent jobs that would provide employment opportunities in the largely Latino, low-income neighborhood.\u003c/p>\n\u003caside class=\"pullquote alignright\">'It is going to change the complexion of the neighborhood, literally.'\u003c/aside>\n\u003cp>\"Now why wouldn’t we want to have that in L.A.?\" Escutia says. \"And why wouldn’t the local community want to receive benefits in terms of jobs, research opportunities for their students; why wouldn’t people want that?”\u003c/p>\n\u003cp>But county officials have told USC that to move forward with the proposal, the university must first address the concerns of the area's existing community.\u003c/p>\n\u003cp>“It is going to change the complexion of the neighborhood, literally,” says Abel Salas, a poet who lives and works out of a warehouse space a few blocks north of the USC expansion site. He and others worry it could displace residents and won’t live up to the promise of job training for young people.\u003c/p>\n\u003cp>“It doesn’t seem realistic to expect people who are among the poorest and least likely to graduate from high school … to suddenly be trained or retrained to have a biotech job, and what’s going to happen to them?”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The university held its first community information meeting on Saturday. If the plan moves forward, it also requires a land deal between USC and L.A. County, which is still being hammered out.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Little Evidence for Effectiveness of 'Brain Training' Programs: Study",
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"content": "\u003cp>Want to be smarter? More focused? Free of memory problems as you age?\u003c/p>\n\u003cp>If so, don't count on brain games to help you.\u003c/p>\n\u003cp>That's the conclusion of an exhaustive evaluation of the scientific literature on brain training games and programs. It was \u003ca href=\"http://psi.sagepub.com/content/current\">published\u003c/a> Monday in the journal \u003cem>Psychological Science in the Public Interest.\u003c/em>\u003c/p>\n\u003cp>\"It's disappointing that the evidence isn't stronger,\" says \u003ca href=\"http://www.psychology.illinois.edu/people/dsimons\">Daniel Simons\u003c/a>, an author of the article and a psychology professor at the University of Illinois at Urbana-Champaign.\u003c/p>\n\u003cp>\"It would be really nice if you could play some games and have it radically change your cognitive abilities,\" Simons says. \"But the studies don't show that on objectively measured real-world outcomes.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The evaluation, done by a team of seven scientists, is a response to a very public disagreement about the effectiveness of brain games, Simons says.\u003c/p>\n\u003cp>In October 2014, more than 70 scientists published an \u003ca href=\"http://longevity3.stanford.edu/blog/2014/10/15/the-consensus-on-the-brain-training-industry-from-the-scientific-community-2/\">open letter\u003c/a> objecting to marketing claims made by brain training companies. Pretty soon, another group, with more than 100 scientists, published a \u003ca href=\"http://www.cognitivetrainingdata.org/the-controversy-does-brain-training-work/response-letter/\">rebuttal\u003c/a> saying brain training has a solid scientific base.\u003c/p>\n\u003cp>\"So you had two consensus statements, each signed by many, many people, that came to essentially opposite conclusions,\" Simons says.\u003c/p>\n\u003cp>In an effort to clarify the issue, Simons and six other scientists reviewed more than 130 studies of brain games and other forms of cognitive training. The evaluation included studies of products from industry giant \u003ca href=\"https://www.lumosity.com/\">Lumosity\u003c/a>, which has been a prominent sponsor of NPR and other public radio programming.\u003c/p>\n\u003cp>\"We went through each paper and tried to look at the kind of evidence it provided,\" Simons says.\u003c/p>\n\u003cp>That meant asking questions like: How big was the study? Did it have an appropriate control group? Do the results support the marketing claims made by companies?\u003c/p>\n\u003cp>The scientists found that \"many of the studies did not really adhere to what we think of as the best practices,\" Simons says.\u003c/p>\n\u003cp>Some of the studies included only a few participants. Others lacked adequate control groups or failed to account for the placebo effect, which causes people to improve on a test simply because they are trying harder or are more confident.\u003c/p>\n\u003cp>There were some good studies, Simons says. And they showed that brain games do help people get better at a specific task.\u003c/p>\n\u003cp>\"You can practice, for example, scanning baggage at an airport and looking for a knife,\" he says. \"And you get really, really good at spotting that knife.\"\u003c/p>\n\u003cp>But there was less evidence that people got better at related tasks, like spotting other suspicious items, Simons says. And there was no strong evidence that practicing a narrow skill led to overall improvements in memory or thinking.\u003c/p>\n\u003cp>That's disappointing, Simons says, because \"what you want to do is be better able to function at work or at school.\"\u003c/p>\n\u003cp>The evaluation got a warm reception from at least some of the scientists who had signed the 2014 letter defending the science behind brain training.\u003c/p>\n\u003cp>\"The evaluation was very even-handed and raised many excellent points,\" says \u003ca href=\"http://www.hopkinsmedicine.org/profiles/results/directory/profile/9783561/george-rebok\">George Rebok\u003c/a>, a psychologist at Johns Hopkins University who has been involved in brain training research for the past 20 years. \"It really helped raise the bar in terms of the level of science that we must aspire to.\"\u003c/p>\n\u003cp>Rebok, who says he has no ties to brain training companies, remains optimistic that the right program of brain exercises can improve mental functioning and delay the effects of aging.\u003c/p>\n\u003cp>One reason brain games haven't shown a clear benefit so far, he says, may be that they don't work the brain hard enough or over a long enough time period.\u003c/p>\n\u003cp>\"It takes mental effort and practice to be able to see results,\" Rebok says. \"If we can implement that long range, I think that there will be a big dividend eventually.\"\u003c/p>\n\u003cp>In the meantime, the brain training industry is facing scrutiny from the Federal Trade Commission.\u003c/p>\n\u003cp>In January, the company behind Lumosity agreed to \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2016/01/lumosity-pay-2-million-settle-ftc-deceptive-advertising-charges\">pay a $2 million fine\u003c/a> to settle \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/160105lumoslabsstip.pdf\">FTC charges\u003c/a> that it made unfounded claims about its brain training program.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>And in May, a smaller brain training company called LearningRx agreed to pay a $200,000 fine to settle \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2016/05/marketers-one-one-brain-training-programs-settle-ftc-charges\">similar charges\u003c/a>. Even so, the \u003ca href=\"http://www.learningrx.com/\">Learning Rx website\u003c/a> still promises \"A better brain at any age.\"\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=Brain+Game+Claims+Fail+A+Big+Scientific+Test&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Want to be smarter? More focused? Free of memory problems as you age?\u003c/p>\n\u003cp>If so, don't count on brain games to help you.\u003c/p>\n\u003cp>That's the conclusion of an exhaustive evaluation of the scientific literature on brain training games and programs. It was \u003ca href=\"http://psi.sagepub.com/content/current\">published\u003c/a> Monday in the journal \u003cem>Psychological Science in the Public Interest.\u003c/em>\u003c/p>\n\u003cp>\"It's disappointing that the evidence isn't stronger,\" says \u003ca href=\"http://www.psychology.illinois.edu/people/dsimons\">Daniel Simons\u003c/a>, an author of the article and a psychology professor at the University of Illinois at Urbana-Champaign.\u003c/p>\n\u003cp>\"It would be really nice if you could play some games and have it radically change your cognitive abilities,\" Simons says. \"But the studies don't show that on objectively measured real-world outcomes.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The evaluation, done by a team of seven scientists, is a response to a very public disagreement about the effectiveness of brain games, Simons says.\u003c/p>\n\u003cp>In October 2014, more than 70 scientists published an \u003ca href=\"http://longevity3.stanford.edu/blog/2014/10/15/the-consensus-on-the-brain-training-industry-from-the-scientific-community-2/\">open letter\u003c/a> objecting to marketing claims made by brain training companies. Pretty soon, another group, with more than 100 scientists, published a \u003ca href=\"http://www.cognitivetrainingdata.org/the-controversy-does-brain-training-work/response-letter/\">rebuttal\u003c/a> saying brain training has a solid scientific base.\u003c/p>\n\u003cp>\"So you had two consensus statements, each signed by many, many people, that came to essentially opposite conclusions,\" Simons says.\u003c/p>\n\u003cp>In an effort to clarify the issue, Simons and six other scientists reviewed more than 130 studies of brain games and other forms of cognitive training. The evaluation included studies of products from industry giant \u003ca href=\"https://www.lumosity.com/\">Lumosity\u003c/a>, which has been a prominent sponsor of NPR and other public radio programming.\u003c/p>\n\u003cp>\"We went through each paper and tried to look at the kind of evidence it provided,\" Simons says.\u003c/p>\n\u003cp>That meant asking questions like: How big was the study? Did it have an appropriate control group? Do the results support the marketing claims made by companies?\u003c/p>\n\u003cp>The scientists found that \"many of the studies did not really adhere to what we think of as the best practices,\" Simons says.\u003c/p>\n\u003cp>Some of the studies included only a few participants. Others lacked adequate control groups or failed to account for the placebo effect, which causes people to improve on a test simply because they are trying harder or are more confident.\u003c/p>\n\u003cp>There were some good studies, Simons says. And they showed that brain games do help people get better at a specific task.\u003c/p>\n\u003cp>\"You can practice, for example, scanning baggage at an airport and looking for a knife,\" he says. \"And you get really, really good at spotting that knife.\"\u003c/p>\n\u003cp>But there was less evidence that people got better at related tasks, like spotting other suspicious items, Simons says. And there was no strong evidence that practicing a narrow skill led to overall improvements in memory or thinking.\u003c/p>\n\u003cp>That's disappointing, Simons says, because \"what you want to do is be better able to function at work or at school.\"\u003c/p>\n\u003cp>The evaluation got a warm reception from at least some of the scientists who had signed the 2014 letter defending the science behind brain training.\u003c/p>\n\u003cp>\"The evaluation was very even-handed and raised many excellent points,\" says \u003ca href=\"http://www.hopkinsmedicine.org/profiles/results/directory/profile/9783561/george-rebok\">George Rebok\u003c/a>, a psychologist at Johns Hopkins University who has been involved in brain training research for the past 20 years. \"It really helped raise the bar in terms of the level of science that we must aspire to.\"\u003c/p>\n\u003cp>Rebok, who says he has no ties to brain training companies, remains optimistic that the right program of brain exercises can improve mental functioning and delay the effects of aging.\u003c/p>\n\u003cp>One reason brain games haven't shown a clear benefit so far, he says, may be that they don't work the brain hard enough or over a long enough time period.\u003c/p>\n\u003cp>\"It takes mental effort and practice to be able to see results,\" Rebok says. \"If we can implement that long range, I think that there will be a big dividend eventually.\"\u003c/p>\n\u003cp>In the meantime, the brain training industry is facing scrutiny from the Federal Trade Commission.\u003c/p>\n\u003cp>In January, the company behind Lumosity agreed to \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2016/01/lumosity-pay-2-million-settle-ftc-deceptive-advertising-charges\">pay a $2 million fine\u003c/a> to settle \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/160105lumoslabsstip.pdf\">FTC charges\u003c/a> that it made unfounded claims about its brain training program.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>And in May, a smaller brain training company called LearningRx agreed to pay a $200,000 fine to settle \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2016/05/marketers-one-one-brain-training-programs-settle-ftc-charges\">similar charges\u003c/a>. Even so, the \u003ca href=\"http://www.learningrx.com/\">Learning Rx website\u003c/a> still promises \"A better brain at any age.\"\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=Brain+Game+Claims+Fail+A+Big+Scientific+Test&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "First Automated Insulin System Approved For Type 1 Diabetes",
"title": "First Automated Insulin System Approved For Type 1 Diabetes",
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"content": "\u003cp>The Food and Drug Administration's approval of a new insulin delivery system for people with Type 1 diabetes is a big deal.\u003c/p>\n\u003cp>With Type 1 diabetes, the pancreas makes little or no insulin so people have to replace it with either multiple daily injections or a pump. In either case, that process involves constant error-prone adjustments, particularly around food and exercise. Over the long term, high blood sugar levels can lead to organ damage, but over-correcting by giving more insulin can cause dangerous low blood sugars that can lead to unconsciousness.\u003c/p>\n\u003cp>The device, Medtronic's MiniMed 670G hybrid closed loop system, is made up of an insulin pump and continuous glucose monitor (CGM), both of which are already on the market separately. The new part involves the communication between the two devices.\u003c/p>\n\u003cp>Medtronic's \u003ca href=\"http://www.npr.org/sections/health-shots/2015/01/30/382172052/diabetes-technology-inches-closer-to-an-artificial-pancreas\">previous system \u003c/a>already had a feature that would shut down the insulin pump if the wearer's blood sugar dropped too low. But the 670G predicts when a person's blood sugar is dropping and prevents the low in the first place, and also corrects high blood sugars.\u003c/p>\n\u003cp>This is the first such machine in the world with that level of automation, and thus it is informally being called the first \"artificial pancreas\" system.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>However, it's called a hybrid rather than a fully closed-loop system because users will still need to signal that they're about to eat and estimate the carbohydrate count of the food so the device can calculate the additional amount of insulin needed. That means there's still the possibility of mistakes. But now if that count is off, the 670G will correct the error automatically.\u003c/p>\n\u003cp>For people with Type 1 diabetes, the new capabilities mean they can both sleep through the night without worrying about their blood sugars dropping too low and can go through their day without having to think about their diabetes all the time, according to Aaron Kowalski, chief mission officer for the JDRF, the organization that funds much of the \"artificial pancreas\" research.\u003c/p>\n\u003cp>\"You get almost normalized overnight blood glucose. For people with Type 1 diabetes, that's massively important,\" he said, adding that the overall 24/7 burden reduction means better quality of life. \"The diabetes isn't gone, but [wearers] can think about it less ...This is a historic milestone.\"\u003c/p>\n\u003cp>And more systems like this are coming.\u003c/p>\n\u003cp>Medtronic, via the Minimed division that it acquired in 2001, was the first to market because it's still the only company that manufactures both the insulin pump and CGM technology. But at least five other partnerships between other manufacturers are now developing closed-loop systems, some using already-available pumps and CGMs, others creating new devices. The systems will likely differ from one another in form, user interface, and in the algorithmic approaches embedded in the communication software, \"so people with diabetes will have more choices,\" Kowalski says, noting that JDRF is \"celebrating Medtronic because it's the first commercial system, but we're supporting the entire field.\"\u003c/p>\n\u003cp>Of course, the field still faces challenges. One of the major technological problems is that insulin deposited just under the skin takes too long to begin working; that's why people still need to signal ahead that they're about to eat. The JDRF is currently funding several initiatives working on making faster-acting insulins.\u003c/p>\n\u003cp>\"The faster the insulin works, the more closed the loop will be,\" Kowalski notes. \"It's not easy, but there's a lot of work going on.\"\u003c/p>\n\u003cp>Wearability is another issue. Some people simply don't want to be strapped to devices, even if it means better diabetes control. So, the JDRF has recently announced new funding for miniaturization of the devices.\u003c/p>\n\u003cp>And of course, there's the problem of access. While insurance coverage for insulin pumps is widely established, this is not the case for the CGM component. Medicare doesn't cover CGM technology, meaning that people now must give up those devices or pay out of pocket when they reach age 65. The JDRF is one of several organizations lobbying to change that, as well as to make sure that all payers recognize both the health and economic advantages of new diabetes technologies.\u003c/p>\n\u003cp>\"This is a priority for us,\" Kowalski says. \"We need to make sure people have access. Not just rich people, but anybody who will benefit.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>For now, the 670G, which the FDA gave the nod on Wednesday, is only \u003ca href=\"http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/UCM522974.htm\">approved\u003c/a> for people aged 14 years and older. But Medtronic is studying it in children ages 7-13 with the aim of making it available for them, too.\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=FDA+Approves+The+First+Automated+Insulin+System+For+Type+1+Diabetes&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>The Food and Drug Administration's approval of a new insulin delivery system for people with Type 1 diabetes is a big deal.\u003c/p>\n\u003cp>With Type 1 diabetes, the pancreas makes little or no insulin so people have to replace it with either multiple daily injections or a pump. In either case, that process involves constant error-prone adjustments, particularly around food and exercise. Over the long term, high blood sugar levels can lead to organ damage, but over-correcting by giving more insulin can cause dangerous low blood sugars that can lead to unconsciousness.\u003c/p>\n\u003cp>The device, Medtronic's MiniMed 670G hybrid closed loop system, is made up of an insulin pump and continuous glucose monitor (CGM), both of which are already on the market separately. The new part involves the communication between the two devices.\u003c/p>\n\u003cp>Medtronic's \u003ca href=\"http://www.npr.org/sections/health-shots/2015/01/30/382172052/diabetes-technology-inches-closer-to-an-artificial-pancreas\">previous system \u003c/a>already had a feature that would shut down the insulin pump if the wearer's blood sugar dropped too low. But the 670G predicts when a person's blood sugar is dropping and prevents the low in the first place, and also corrects high blood sugars.\u003c/p>\n\u003cp>This is the first such machine in the world with that level of automation, and thus it is informally being called the first \"artificial pancreas\" system.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>However, it's called a hybrid rather than a fully closed-loop system because users will still need to signal that they're about to eat and estimate the carbohydrate count of the food so the device can calculate the additional amount of insulin needed. That means there's still the possibility of mistakes. But now if that count is off, the 670G will correct the error automatically.\u003c/p>\n\u003cp>For people with Type 1 diabetes, the new capabilities mean they can both sleep through the night without worrying about their blood sugars dropping too low and can go through their day without having to think about their diabetes all the time, according to Aaron Kowalski, chief mission officer for the JDRF, the organization that funds much of the \"artificial pancreas\" research.\u003c/p>\n\u003cp>\"You get almost normalized overnight blood glucose. For people with Type 1 diabetes, that's massively important,\" he said, adding that the overall 24/7 burden reduction means better quality of life. \"The diabetes isn't gone, but [wearers] can think about it less ...This is a historic milestone.\"\u003c/p>\n\u003cp>And more systems like this are coming.\u003c/p>\n\u003cp>Medtronic, via the Minimed division that it acquired in 2001, was the first to market because it's still the only company that manufactures both the insulin pump and CGM technology. But at least five other partnerships between other manufacturers are now developing closed-loop systems, some using already-available pumps and CGMs, others creating new devices. The systems will likely differ from one another in form, user interface, and in the algorithmic approaches embedded in the communication software, \"so people with diabetes will have more choices,\" Kowalski says, noting that JDRF is \"celebrating Medtronic because it's the first commercial system, but we're supporting the entire field.\"\u003c/p>\n\u003cp>Of course, the field still faces challenges. One of the major technological problems is that insulin deposited just under the skin takes too long to begin working; that's why people still need to signal ahead that they're about to eat. The JDRF is currently funding several initiatives working on making faster-acting insulins.\u003c/p>\n\u003cp>\"The faster the insulin works, the more closed the loop will be,\" Kowalski notes. \"It's not easy, but there's a lot of work going on.\"\u003c/p>\n\u003cp>Wearability is another issue. Some people simply don't want to be strapped to devices, even if it means better diabetes control. So, the JDRF has recently announced new funding for miniaturization of the devices.\u003c/p>\n\u003cp>And of course, there's the problem of access. While insurance coverage for insulin pumps is widely established, this is not the case for the CGM component. Medicare doesn't cover CGM technology, meaning that people now must give up those devices or pay out of pocket when they reach age 65. The JDRF is one of several organizations lobbying to change that, as well as to make sure that all payers recognize both the health and economic advantages of new diabetes technologies.\u003c/p>\n\u003cp>\"This is a priority for us,\" Kowalski says. \"We need to make sure people have access. Not just rich people, but anybody who will benefit.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>For now, the 670G, which the FDA gave the nod on Wednesday, is only \u003ca href=\"http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/UCM522974.htm\">approved\u003c/a> for people aged 14 years and older. But Medtronic is studying it in children ages 7-13 with the aim of making it available for them, too.\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=FDA+Approves+The+First+Automated+Insulin+System+For+Type+1+Diabetes&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Digital health is booming. The market that includes health apps and wearables will increase around \u003cem>1,200 percent\u003c/em> over the next eight years, according to one \u003ca href=\"http://www.digitaljournal.com/pr/3084642\" target=\"_blank\">forecast\u003c/a>.\u003c/p>\n\u003cp>So what's propelling this surge in demand? \"A growing proliferation of chronic diseases, namely diabetes, cancer and heart ailments ... \" the report says.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We don’t need an app that counts steps, because that really just tells you that your day doesn’t naturally incorporate the time and space to walk.'\u003c/aside>\n\u003cp>Not only is this trend alarming, said the Robert Wood Johnson Foundation's Stephen Downs at the recent Stanford Medicine X conference, but many of the solutions offered by digital health companies are \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/09/20/weight-loss-study-finds-fitness-tracker-is-no-help/\" target=\"_blank\">not going to help\u003c/a>.\u003c/p>\n\u003cp>In this age of the Fitbit, Downs said, digital health companies are focused on monitoring the consequences of our \u003ca href=\"http://stateofobesity.org/physical-inactivity/\" target=\"_blank\">notoriously sedentary lifestyles. \u003c/a>But what is really called for from innovators is to stop treating symptoms and start remedying the roots of the problem.\u003c/p>\n\u003cp>“The system needs to be re-engineered!” said Downs, chief technology and strategy officer of RWJF, a philanthropic organization focused on health. \"We don’t need an app that counts steps, because that really just tells you that your day doesn’t naturally incorporate the time and space to walk.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>Progress = Inactivity\u003c/strong>\u003c/p>\n\u003cp>Downs is of the opinion that some of our most cherished and widely used inventions have resulted in a kind of apocalypse of inactivity: Automobiles helped create pedestrian-unfriendly suburbs; washing machines provided leisure time -- to watch more TV. And the appearance of the remote control meant we no longer even had to get up to change the channel.\u003c/p>\n\u003cp>Even our thumb muscles have been given the day off since digital assistants like Siri gained the ability to write our text messages, he noted.\u003c/p>\n\u003cp>All these things, combined with an automobile-driven, fast food culture, said Downs, have contributed to a national \u003ca href=\"http://www.diabetes.org/diabetes-basics/statistics/\">diabetes epidemic\u003c/a> and a stunning rise in \u003ca href=\"http://stateofobesity.org/obesity-rates-trends-overview/\" target=\"_blank\">obesity rates\u003c/a>.\u003c/p>\n\u003cp>\u003cb>We Need Stuff Like This \u003c/b>\u003c/p>\n\u003cp>So how to remedy the roots of the unhealthy environments we've created? Downs says engineers and designers in \u003cem>all\u003c/em> industries should be thinking about their products' effects on our health.\u003c/p>\n\u003cp>He cited the \u003ca href=\"http://cp.media.mit.edu/\" target=\"_blank\">Changing Places\u003c/a> group at the Massachusetts Institute of Technology media lab as a project that's attempting to create core solutions that fundamentally change human behavior. One of the lab's initiatives: designing ways to feed people healthier diets through \u003ca href=\"http://web.mit.edu/jiw/www/MITCityFarm/\" target=\"_blank\">urban farms\u003c/a> that make use of city spaces. (Imagine crops growing on the sides of buildings, for instance.)\u003c/p>\n\u003cfigure id=\"attachment_253672\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/bldgs.jpg\">\u003cimg class=\"wp-image-253672 size-medium\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/bldgs-800x581.jpg\" alt=\"Crops grown on the side of a building could help foster urban farming.\" width=\"800\" height=\"581\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-800x581.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-400x290.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-768x558.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-960x697.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs.jpg 1000w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Crops grown on the side of a building could help foster urban farming. \u003ccite>(MIT CityFARM)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The MIT researchers claim their techniques could not only completely eliminate the massive amounts of water used by agriculture, but also render\u003cb> \u003c/b>unnecessary fertilizers and pesticides.\u003c/p>\n\u003cp>Downs also pointed to a food delivery service called \u003ca href=\"https://www.blueapron.com/?cvosrc=search-paid.google.brand30&gclid=CNS2zru1sM8CFQuqaQodXTIFng&utm_campaign=brand30&utm_medium=search-paid&utm_source=google\" target=\"_blank\">Blue Apron\u003c/a> as the kind of upstream innovation that can have a positive effect on health. The company sends a box of fresh food to your doorstep, with all the ingredients and spices to cook a meal at home. Not exactly fast food -- but \u003cem>faster\u003c/em> food with better nutrition.\u003c/p>\n\u003cp>\"This is about finding solutions for people that are more compelling than the patterns that we have established,\" he said.\u003c/p>\n\u003cp>A furniture company like the San Francisco-based \u003ca href=\"http://store.steelcase.com/\" target=\"_blank\">Steelcase\u003c/a> can have an impact, too, Downs said. The company designs chairs, lamps and tables that are intended to inspire movement, remove stress and improve focus.\u003c/p>\n\u003cp>Even ride services such as Uber and Lyft, Downs said, might lead to healthier lifestyles if they influence urban dwellers to ditch their cars altogether -- someone who no longer has a car sitting in their garage may be more inclined to walk or bike.\u003c/p>\n\u003cp>One caveat: Downs said the problem with many of these solutions is they're prohibitively expensive for most people.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"People who are innovating like this really need to think about price points that are available for the masses, not just the well-off folks in Silicon Valley.\"\u003c/p>\n\n",
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"excerpt": "Digital health companies offer a lot of monitoring devices, but they don't address core societal problems that hinder health, says the Robert Woods Johnson Foundation's chief technology officer.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Digital health is booming. The market that includes health apps and wearables will increase around \u003cem>1,200 percent\u003c/em> over the next eight years, according to one \u003ca href=\"http://www.digitaljournal.com/pr/3084642\" target=\"_blank\">forecast\u003c/a>.\u003c/p>\n\u003cp>So what's propelling this surge in demand? \"A growing proliferation of chronic diseases, namely diabetes, cancer and heart ailments ... \" the report says.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We don’t need an app that counts steps, because that really just tells you that your day doesn’t naturally incorporate the time and space to walk.'\u003c/aside>\n\u003cp>Not only is this trend alarming, said the Robert Wood Johnson Foundation's Stephen Downs at the recent Stanford Medicine X conference, but many of the solutions offered by digital health companies are \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/09/20/weight-loss-study-finds-fitness-tracker-is-no-help/\" target=\"_blank\">not going to help\u003c/a>.\u003c/p>\n\u003cp>In this age of the Fitbit, Downs said, digital health companies are focused on monitoring the consequences of our \u003ca href=\"http://stateofobesity.org/physical-inactivity/\" target=\"_blank\">notoriously sedentary lifestyles. \u003c/a>But what is really called for from innovators is to stop treating symptoms and start remedying the roots of the problem.\u003c/p>\n\u003cp>“The system needs to be re-engineered!” said Downs, chief technology and strategy officer of RWJF, a philanthropic organization focused on health. \"We don’t need an app that counts steps, because that really just tells you that your day doesn’t naturally incorporate the time and space to walk.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Progress = Inactivity\u003c/strong>\u003c/p>\n\u003cp>Downs is of the opinion that some of our most cherished and widely used inventions have resulted in a kind of apocalypse of inactivity: Automobiles helped create pedestrian-unfriendly suburbs; washing machines provided leisure time -- to watch more TV. And the appearance of the remote control meant we no longer even had to get up to change the channel.\u003c/p>\n\u003cp>Even our thumb muscles have been given the day off since digital assistants like Siri gained the ability to write our text messages, he noted.\u003c/p>\n\u003cp>All these things, combined with an automobile-driven, fast food culture, said Downs, have contributed to a national \u003ca href=\"http://www.diabetes.org/diabetes-basics/statistics/\">diabetes epidemic\u003c/a> and a stunning rise in \u003ca href=\"http://stateofobesity.org/obesity-rates-trends-overview/\" target=\"_blank\">obesity rates\u003c/a>.\u003c/p>\n\u003cp>\u003cb>We Need Stuff Like This \u003c/b>\u003c/p>\n\u003cp>So how to remedy the roots of the unhealthy environments we've created? Downs says engineers and designers in \u003cem>all\u003c/em> industries should be thinking about their products' effects on our health.\u003c/p>\n\u003cp>He cited the \u003ca href=\"http://cp.media.mit.edu/\" target=\"_blank\">Changing Places\u003c/a> group at the Massachusetts Institute of Technology media lab as a project that's attempting to create core solutions that fundamentally change human behavior. One of the lab's initiatives: designing ways to feed people healthier diets through \u003ca href=\"http://web.mit.edu/jiw/www/MITCityFarm/\" target=\"_blank\">urban farms\u003c/a> that make use of city spaces. (Imagine crops growing on the sides of buildings, for instance.)\u003c/p>\n\u003cfigure id=\"attachment_253672\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/bldgs.jpg\">\u003cimg class=\"wp-image-253672 size-medium\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/bldgs-800x581.jpg\" alt=\"Crops grown on the side of a building could help foster urban farming.\" width=\"800\" height=\"581\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-800x581.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-400x290.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-768x558.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs-960x697.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/bldgs.jpg 1000w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Crops grown on the side of a building could help foster urban farming. \u003ccite>(MIT CityFARM)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The MIT researchers claim their techniques could not only completely eliminate the massive amounts of water used by agriculture, but also render\u003cb> \u003c/b>unnecessary fertilizers and pesticides.\u003c/p>\n\u003cp>Downs also pointed to a food delivery service called \u003ca href=\"https://www.blueapron.com/?cvosrc=search-paid.google.brand30&gclid=CNS2zru1sM8CFQuqaQodXTIFng&utm_campaign=brand30&utm_medium=search-paid&utm_source=google\" target=\"_blank\">Blue Apron\u003c/a> as the kind of upstream innovation that can have a positive effect on health. The company sends a box of fresh food to your doorstep, with all the ingredients and spices to cook a meal at home. Not exactly fast food -- but \u003cem>faster\u003c/em> food with better nutrition.\u003c/p>\n\u003cp>\"This is about finding solutions for people that are more compelling than the patterns that we have established,\" he said.\u003c/p>\n\u003cp>A furniture company like the San Francisco-based \u003ca href=\"http://store.steelcase.com/\" target=\"_blank\">Steelcase\u003c/a> can have an impact, too, Downs said. The company designs chairs, lamps and tables that are intended to inspire movement, remove stress and improve focus.\u003c/p>\n\u003cp>Even ride services such as Uber and Lyft, Downs said, might lead to healthier lifestyles if they influence urban dwellers to ditch their cars altogether -- someone who no longer has a car sitting in their garage may be more inclined to walk or bike.\u003c/p>\n\u003cp>One caveat: Downs said the problem with many of these solutions is they're prohibitively expensive for most people.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"People who are innovating like this really need to think about price points that are available for the masses, not just the well-off folks in Silicon Valley.\"\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Lipedema: The Fat Disorder That Millions Have But No One Has Heard Of",
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"content": "\u003cp>In college Judy Maggiore remembers looking in the mirror, perplexed by her body’s disproportion.\u003c/p>\n\u003cp>\"I was skinny. I was a stick. The upper part of my body was really, really thin. You could see my ribs!\" exclaims Maggiore. \"But from the waist down, it was like there were two of me or something.\"\u003c/p>\n\u003cp>Tree trunk-like legs and a slim upper body are the signature characteristic of a lipedema patient. You can starve yourself and exercise for hours a day and the fat will not regress. But Maggiore didn’t know that at the time. She swore off bathing suits and hit the gym fanatically.\u003c/p>\n\u003cp>Even though she was mystified by her body, she didn't consider going to the doctor. \"Clearly, there was something wrong with me. I wasn’t eating the right things. I wasn’t exercising correctly.\"\u003c/p>\n\u003cfigure id=\"attachment_244616\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-244616 size-medium\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/IMG_0761-800x600.jpg\" alt=\"Judy Maggiore eats a salad everyday for lunch. \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-960x720.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Judy Maggiore eats a salad every day for lunch. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Yet she tried every diet imaginable, from Atkins to Weight Watchers to Jenny Craig. Nothing worked.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Finally, last year -- when she was 68 years old -- a lymphatic specialist shocked her with a diagnosis of lipedema.\u003c/p>\n\u003cp>\"I was like, 'Whoa!'\" exclaims Maggiore. \"I’ve never heard that before. They have a name for it and it’s not my fault!\"\u003c/p>\n\u003cp>\u003cstrong>Tricky Diagnosis\u003c/strong>\u003c/p>\n\u003cp>Lipedema is a lymphatic disease that is thought to affect 10 to 17 million people in America, mostly women. Exact patient estimates are not available because it’s hard to diagnose. In fact, many lipedema patients don’t even know they have it. Neither do their physicians, who often assume their patients are obese. Plus, doctors often confuse lipedema with lymphedema -- a prevalent lymphatic disease that presents similar symptoms. Maggiore says every doctor she saw throughout her life told her she needed to lose weight.\u003c/p>\n\u003cp>There isn’t a standard exam like a blood or urine test for lipedema. Instead, doctors use physical clues, like the unusual texture of the skin. It starts to feel like sand, then pebbles, and then small stones. The fat cells keep enlarging and increasing.\u003c/p>\n\u003cp>\"It’s like being wrapped in bubble wrap,\" says Maggiore.\u003cb>\u003cbr>\n\u003c/b>\u003c/p>\n\u003cp>The causes are mysterious too, although early \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/20358611\" target=\"_blank\">studies\u003c/a> suggest lipedema is a genetic condition in women. It seems the disease is hormonally triggered, as the onset is usually around puberty, and symptoms worsen during childbirth and menopause.\u003c/p>\n\u003cp>\"We just have the earliest clues about where to look and what to think about,\" says \u003ca href=\"https://med.stanford.edu/profiles/stanley-rockson\" target=\"_blank\">Dr. Stanley Rockson\u003c/a>, a professor and researcher at Stanford University.\u003c/p>\n\u003cp>Usually fat cells increase when you overeat, and then decrease when you diet -- but something goes awry in lipedema patients. Rockson uses the metaphor of a bank to illustrate how cells in lipedema patients work.\u003c/p>\n\u003cp>\"They’re a very unusual bank, because they accept deposits but no withdrawals,\" says Rockson. \"So once they accumulate material, it never comes out again.\"\u003c/p>\n\u003cp>Rockson is one of only a handful of lipedema specialists in the world trying to understand the disease's pathology. In a current study, he’s analyzing tissue samples from the legs and abdomen to better understand why subcutaneous fat accumulates primarily in the lower body. He’s also testing anti-inflammatory drugs that have worked on other lymphatic diseases to reduce pain. And he's one of the founders of an \u003ca href=\"http://lymphaticnetwork.org/\" target=\"_blank\">international registry\u003c/a> collecting the medical records of patients who suffer from lymphatic diseases. He hopes the research will eventually lead to treatments for the disease. As of now, doctors have few options for patients.\u003c/p>\n\u003cp>\u003cstrong>Liposuction Offers Some Hope\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The only long-term treatment is liposuction, and Judy Maggiore is terrified of surgery. But some women don’t have a choice.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/WPwhWfFhlYc?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003cbr>\n\u003csmall>\u003cem>VIDEO: Marlene Simpson's liposuction surgery to treat lipedema, conducted by Dr. David Amron.\u003c/em>\u003c/small>\u003c/p>\n\u003cp>When Marlene Simpson’s scale topped three hundred pounds, she was desperate for thinner legs. She wasn't sleeping, which lead to exhaustion and made functioning at work nearly impossible.\u003c/p>\n\u003cp>But her initial appointment with a plastic surgeon was devastating. The physician denied her self-diagnosis. \"He told me that I shouldn’t believe what I see on the Internet,\" says Simpson.\u003c/p>\n\u003cp>But she didn't give up. More Internet research led her to \u003ca href=\"http://www.amronmd.com/about/meet-dr-amron/\" target=\"_blank\">Dr. David Amron\u003c/a>, a Beverly Hills surgeon. She booked a flight as soon as possible. After two surgeries, Simpson’s legs were 24 pounds lighter.\u003c/p>\n\u003cfigure id=\"attachment_244610\" class=\"wp-caption aligncenter\" style=\"max-width: 634px\">\u003cimg class=\"size-medium wp-image-244610\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg\" alt=\"Marlene Simpson's legs before and after liposuction surgery to treat her lipedema. \" width=\"634\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg 634w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-400x378.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-768x726.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs.jpg 774w\" sizes=\"(max-width: 634px) 100vw, 634px\">\u003cfigcaption class=\"wp-caption-text\">Marlene Simpson's legs before and after liposuction surgery to treat her lipedema.\u003c/figcaption>\u003c/figure>\n\u003cp>When she returned home to Sacramento, she felt like a new person.\u003c/p>\n\u003cp>\"It wasn’t ‘til I had surgery that I just realized that I was in a lot of pain,\" says Simpson.\u003c/p>\n\u003cp>Simpson's pain is caused by all the extra weight pressing on her nerves and lymph vessels. Over time, lipedema can be debilitating because blood clots, skin ulcers and recurrent infections can develop.\u003c/p>\n\u003cp>\u003cstrong>A Medical Unknown\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>But the relief put Simpson back $21,000 because her insurance denied the procedure. The company claims that liposuction is a cosmetic procedure, and it is not a recognized treatment for lipedema.\u003c/p>\n\u003cp>But Amron says liposuction \u003ci>does\u003c/i> work. If patients continue to diet and exercise, he swears the fat should not come back.\u003c/p>\n\u003cfigure id=\"attachment_244641\" class=\"wp-caption aligncenter\" style=\"max-width: 600px\">\u003cimg class=\"size-medium wp-image-244641\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg\" alt=\"The fat that was removed from Marlene Simpson's legs during liposuction surgery. \" width=\"600\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg 600w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-400x400.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1180x1180.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1920x1920.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-960x960.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-150x150.jpg 150w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat.jpg 2048w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">The fat removed from Marlene Simpson's legs during liposuction surgery.\u003c/figcaption>\u003c/figure>\n\u003cp>Ninety percent of Dr. Amron’s clientele have lipedema. They come to him for liposuction.\u003c/p>\n\u003cp>\"They found their way to me about ten years ago when I started doing lipedema patients, and I’d never even heard of the condition,\" says Amron\u003cstrong>.\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>Ignored by the Medical Community\u003c/strong>\u003c/p>\n\u003cp>In fact, most doctors haven’t heard of lipedema. A 2004 Stanford University \u003ca href=\"http://www.journaloflymphoedema.com/media/journals/_/1108/files/jol6-1-44-9.pdf\" target=\"_blank\">study\u003c/a> showed that most U.S. medical schools spend less than 30 minutes teaching the entire lymphatic system.\u003c/p>\n\u003cp>\"So, not surprisingly, doctors don’t know a lot about these diseases or the underlying conditions,\" says Rockson. \"If you poll 100 physicians off the street, you might find one that knows the term lipedema, and that one might not have much to say about it other than a recognition of the name.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>One of his patients, Judy Maggiore, hopes to someday benefit from his research. In the meantime, her daily lunch is a bowl filled with vegetables, and even though she usually skips dinner, the flab on her legs continues to thicken, causing chronic pain. She savors each bite slowly, in hopes of keeping fat cells at bay.\u003c/p>\n\n",
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"excerpt": "Millions of women are suffering from a disease that poses as obesity. Most patients don’t know they have it, and doctors haven’t heard of it. Plus, dieting doesn’t work because the patients have abnormal fat cells that never go away. ",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>In college Judy Maggiore remembers looking in the mirror, perplexed by her body’s disproportion.\u003c/p>\n\u003cp>\"I was skinny. I was a stick. The upper part of my body was really, really thin. You could see my ribs!\" exclaims Maggiore. \"But from the waist down, it was like there were two of me or something.\"\u003c/p>\n\u003cp>Tree trunk-like legs and a slim upper body are the signature characteristic of a lipedema patient. You can starve yourself and exercise for hours a day and the fat will not regress. But Maggiore didn’t know that at the time. She swore off bathing suits and hit the gym fanatically.\u003c/p>\n\u003cp>Even though she was mystified by her body, she didn't consider going to the doctor. \"Clearly, there was something wrong with me. I wasn’t eating the right things. I wasn’t exercising correctly.\"\u003c/p>\n\u003cfigure id=\"attachment_244616\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-244616 size-medium\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/IMG_0761-800x600.jpg\" alt=\"Judy Maggiore eats a salad everyday for lunch. \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/IMG_0761-960x720.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Judy Maggiore eats a salad every day for lunch. \u003ccite>(Lesley McClurg/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Yet she tried every diet imaginable, from Atkins to Weight Watchers to Jenny Craig. Nothing worked.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Finally, last year -- when she was 68 years old -- a lymphatic specialist shocked her with a diagnosis of lipedema.\u003c/p>\n\u003cp>\"I was like, 'Whoa!'\" exclaims Maggiore. \"I’ve never heard that before. They have a name for it and it’s not my fault!\"\u003c/p>\n\u003cp>\u003cstrong>Tricky Diagnosis\u003c/strong>\u003c/p>\n\u003cp>Lipedema is a lymphatic disease that is thought to affect 10 to 17 million people in America, mostly women. Exact patient estimates are not available because it’s hard to diagnose. In fact, many lipedema patients don’t even know they have it. Neither do their physicians, who often assume their patients are obese. Plus, doctors often confuse lipedema with lymphedema -- a prevalent lymphatic disease that presents similar symptoms. Maggiore says every doctor she saw throughout her life told her she needed to lose weight.\u003c/p>\n\u003cp>There isn’t a standard exam like a blood or urine test for lipedema. Instead, doctors use physical clues, like the unusual texture of the skin. It starts to feel like sand, then pebbles, and then small stones. The fat cells keep enlarging and increasing.\u003c/p>\n\u003cp>\"It’s like being wrapped in bubble wrap,\" says Maggiore.\u003cb>\u003cbr>\n\u003c/b>\u003c/p>\n\u003cp>The causes are mysterious too, although early \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/20358611\" target=\"_blank\">studies\u003c/a> suggest lipedema is a genetic condition in women. It seems the disease is hormonally triggered, as the onset is usually around puberty, and symptoms worsen during childbirth and menopause.\u003c/p>\n\u003cp>\"We just have the earliest clues about where to look and what to think about,\" says \u003ca href=\"https://med.stanford.edu/profiles/stanley-rockson\" target=\"_blank\">Dr. Stanley Rockson\u003c/a>, a professor and researcher at Stanford University.\u003c/p>\n\u003cp>Usually fat cells increase when you overeat, and then decrease when you diet -- but something goes awry in lipedema patients. Rockson uses the metaphor of a bank to illustrate how cells in lipedema patients work.\u003c/p>\n\u003cp>\"They’re a very unusual bank, because they accept deposits but no withdrawals,\" says Rockson. \"So once they accumulate material, it never comes out again.\"\u003c/p>\n\u003cp>Rockson is one of only a handful of lipedema specialists in the world trying to understand the disease's pathology. In a current study, he’s analyzing tissue samples from the legs and abdomen to better understand why subcutaneous fat accumulates primarily in the lower body. He’s also testing anti-inflammatory drugs that have worked on other lymphatic diseases to reduce pain. And he's one of the founders of an \u003ca href=\"http://lymphaticnetwork.org/\" target=\"_blank\">international registry\u003c/a> collecting the medical records of patients who suffer from lymphatic diseases. He hopes the research will eventually lead to treatments for the disease. As of now, doctors have few options for patients.\u003c/p>\n\u003cp>\u003cstrong>Liposuction Offers Some Hope\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The only long-term treatment is liposuction, and Judy Maggiore is terrified of surgery. But some women don’t have a choice.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/WPwhWfFhlYc?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003cbr>\n\u003csmall>\u003cem>VIDEO: Marlene Simpson's liposuction surgery to treat lipedema, conducted by Dr. David Amron.\u003c/em>\u003c/small>\u003c/p>\n\u003cp>When Marlene Simpson’s scale topped three hundred pounds, she was desperate for thinner legs. She wasn't sleeping, which lead to exhaustion and made functioning at work nearly impossible.\u003c/p>\n\u003cp>But her initial appointment with a plastic surgeon was devastating. The physician denied her self-diagnosis. \"He told me that I shouldn’t believe what I see on the Internet,\" says Simpson.\u003c/p>\n\u003cp>But she didn't give up. More Internet research led her to \u003ca href=\"http://www.amronmd.com/about/meet-dr-amron/\" target=\"_blank\">Dr. David Amron\u003c/a>, a Beverly Hills surgeon. She booked a flight as soon as possible. After two surgeries, Simpson’s legs were 24 pounds lighter.\u003c/p>\n\u003cfigure id=\"attachment_244610\" class=\"wp-caption aligncenter\" style=\"max-width: 634px\">\u003cimg class=\"size-medium wp-image-244610\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg\" alt=\"Marlene Simpson's legs before and after liposuction surgery to treat her lipedema. \" width=\"634\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-634x600.jpg 634w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-400x378.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs-768x726.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlene-Simpson-Legs.jpg 774w\" sizes=\"(max-width: 634px) 100vw, 634px\">\u003cfigcaption class=\"wp-caption-text\">Marlene Simpson's legs before and after liposuction surgery to treat her lipedema.\u003c/figcaption>\u003c/figure>\n\u003cp>When she returned home to Sacramento, she felt like a new person.\u003c/p>\n\u003cp>\"It wasn’t ‘til I had surgery that I just realized that I was in a lot of pain,\" says Simpson.\u003c/p>\n\u003cp>Simpson's pain is caused by all the extra weight pressing on her nerves and lymph vessels. Over time, lipedema can be debilitating because blood clots, skin ulcers and recurrent infections can develop.\u003c/p>\n\u003cp>\u003cstrong>A Medical Unknown\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>But the relief put Simpson back $21,000 because her insurance denied the procedure. The company claims that liposuction is a cosmetic procedure, and it is not a recognized treatment for lipedema.\u003c/p>\n\u003cp>But Amron says liposuction \u003ci>does\u003c/i> work. If patients continue to diet and exercise, he swears the fat should not come back.\u003c/p>\n\u003cfigure id=\"attachment_244641\" class=\"wp-caption aligncenter\" style=\"max-width: 600px\">\u003cimg class=\"size-medium wp-image-244641\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg\" alt=\"The fat that was removed from Marlene Simpson's legs during liposuction surgery. \" width=\"600\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-600x600.jpg 600w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-400x400.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1180x1180.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-1920x1920.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-960x960.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat-150x150.jpg 150w, https://ww2.kqed.org/app/uploads/sites/13/2016/09/Marlenes-fat.jpg 2048w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">The fat removed from Marlene Simpson's legs during liposuction surgery.\u003c/figcaption>\u003c/figure>\n\u003cp>Ninety percent of Dr. Amron’s clientele have lipedema. They come to him for liposuction.\u003c/p>\n\u003cp>\"They found their way to me about ten years ago when I started doing lipedema patients, and I’d never even heard of the condition,\" says Amron\u003cstrong>.\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>Ignored by the Medical Community\u003c/strong>\u003c/p>\n\u003cp>In fact, most doctors haven’t heard of lipedema. A 2004 Stanford University \u003ca href=\"http://www.journaloflymphoedema.com/media/journals/_/1108/files/jol6-1-44-9.pdf\" target=\"_blank\">study\u003c/a> showed that most U.S. medical schools spend less than 30 minutes teaching the entire lymphatic system.\u003c/p>\n\u003cp>\"So, not surprisingly, doctors don’t know a lot about these diseases or the underlying conditions,\" says Rockson. \"If you poll 100 physicians off the street, you might find one that knows the term lipedema, and that one might not have much to say about it other than a recognition of the name.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>One of his patients, Judy Maggiore, hopes to someday benefit from his research. In the meantime, her daily lunch is a bowl filled with vegetables, and even though she usually skips dinner, the flab on her legs continues to thicken, causing chronic pain. She savors each bite slowly, in hopes of keeping fat cells at bay.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Dr. Lorraine Page, believe it or not, makes house calls.\u003c/p>\n\u003cp>One place she visits is the home of Ann Caponio, a one-bedroom apartment in Half Moon Bay, California. You can tell a knitter lives there: baskets of wool and hanks of yarn adorn the room, and in the corner sits a wooden spinning wheel.\u003c/p>\n\u003caside class=\"pullquote alignright\">A new model gains in popularity: no insurance but unlimited doctor visits are provided for a monthly fee.\u003c/aside>\n\u003cp>But arthritis has put an end to that hobby. And for a while, Caponio, 69, wasn't even getting out.\u003c/p>\n\u003cp>\"I kind of stopped going downtown,\" she says, in her Midland, Texas twang, a holdover from childhood. \"Omigod those stairs.\"\u003c/p>\n\u003cp>She's talking about a steep, 17-step staircase leading to her front door. Three hip replacements left negotiating them a dangerous proposition.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"I tend to fall. And I fell on those damned stairs once.\"\u003c/p>\n\u003cp>And that's where Lorraine Page enters the picture.\u003c/p>\n\u003cp>Besides the house calls, Page provides a little more than Caponio might expect from a primary care doc available through Medicare. Page, for instance, has aided her patient with a number of safety issues, including helping her find someone to rig up a chairlift on those stairs. Now, she can sit on a seat at the top and glide to the bottom.\u003c/p>\n\u003cp>\"It opens up a whole new world for me,\" Caponio says.\u003c/p>\n\u003cp>\u003cstrong>A Different Model\u003c/strong>\u003c/p>\n\u003cp>A whole new world is what Dr. Page herself has been experiencing, ever since she left the traditional clinic setting to try something different. She does have a small office, but prefers to visit most of her patients in their homes.\u003c/p>\n\u003caside class=\"pullquote alignright\">When they learn they can get off the production line, 'Doctors will be in mass exodus.'\u003ccite>Dr. Pamela Wible\u003c/cite>\u003c/aside>\n\u003cp>She's one of a growing number of doctors who have cut loose from what she calls the \"assembly-line, volume approach\" that most of her colleagues have experienced. These breakaway docs are now using a health care delivery model called direct primary care. Page has cut back on the number of patients she sees, and spends more time with the ones she does. She doesn't take insurance and deals mostly in cash. Page charges each time she sees a patient, but most direct primary care doctors bill a monthly fee for unlimited visits.\u003c/p>\n\u003cp>In her previous practice, Page says, the pressure to see more patients in less time wore her down, as did the need for an army of support staff to process the copious paperwork required by insurance companies.\u003c/p>\n\u003cp>\"At our office, we had six full-time doctors. And we had seven full-time insurance people. So [that's] more than one full-time person trying to get reimbursement for patients I was seeing.\"\u003c/p>\n\u003cp>The benefits of leaving that bureaucratic load behind includes more time with patients but shorter days as her total load has been reduced. And she's doing the kind of family-care medicine for which she was trained.\u003c/p>\n\u003cp>\"And I enjoy it a lot more,\" Page says. \"Let's not minimize that.\"\u003c/p>\n\u003cp>[contextly_sidebar id=\"vPRJXQNXVX11c9sC2BeSG7GGPJpZybhw\"]\u003c/p>\n\u003cp>\u003cstrong>What Doctors Want\u003c/strong>\u003c/p>\n\u003cp>A 2012 \u003ca href=\"http://www.medscape.com/features/slideshow/compensation/2012/public\" target=\"_blank\">Medscape study\u003c/a> found that 46 percent of primary care physicians showed such dissatisfaction with their careers, they wouldn't pursue medicine if they could choose again. Another\u003ca href=\"http://www.physiciansfoundation.org/healthcare-research/a-survey-of-americas-physicians-practice-patterns-and-perspectives\" target=\"_blank\"> study\u003c/a>, from the Physicians Foundation, found 60 percent of primary care doctors would not recommend a career in medicine. Just six percent described the morale of their colleagues as positive.\u003c/p>\n\u003cp>Overall, says Wanda Filer, president of the American Academy of Family Physicians, primary care doctors feel overworked and ineffective. \"Most patients are just rushed out the door,\" she says. \"That's not what doctors want to do. This new model of care gets the physician and the patient out of that hamster-wheel model.\"\u003c/p>\n\u003cp>Filer says about three percent of the organization's 69,000 primary care doctors have made the move to direct primary care in the past couple of years, and that number is increasing rapidly as other physicians see it succeed.\u003c/p>\n\u003cp>In fact, Filer says, her organization has taken the unusual step of convening informational seminars for the large number of family doctors who have expressed interest in getting off the grid and starting a kinder, gentler practice.\u003c/p>\n\u003cp>\u003cb>Cash and Care\u003c/b>\u003c/p>\n\u003cfigure id=\"attachment_220077\" class=\"wp-caption alignright\" style=\"max-width: 357px\">\u003cimg class=\"wp-image-220077\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/emiliescott1-885x1180.jpg\" alt=\"Dr. Emilie Scott of Irvine, Calif.\" width=\"357\" height=\"476\">\u003cfigcaption class=\"wp-caption-text\">Dr. Emilie Scott of Irvine, Calif., says the direct primary care model has put 'the heart back in medicine' for her. (David Gorn/KQED) \u003ccite>(David Gorn/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>While direct primary care has some similarities to \u003ca href=\"http://www.healthline.com/health-news/the-future-of-healthcare-could-be-in-concierge-medicine-063015\" target=\"_blank\">concierge medicine\u003c/a>, it differs in that direct primary care rejects insurance. And, because concierge medicine sprang from wealthy patients’ desire for greater access to their doctors, patients can \u003ca href=\"http://www.wsj.com/articles/SB10001424052702303471004579165470633112630\" target=\"_blank\">pay up to thousands of dollars a month\u003c/a> for same-day appointments, round-the-clock phone access, house calls and other services.\u003c/p>\n\u003cp>In contrast, direct primary care doctors charge a relatively small monthly fee. While that can be an extra cost for those who also need insurance to cover more serious medical problems, many patients have high-deductible plans, making the monthly expense of direct primary care a good deal, especially for those who go to the doctor a lot.\u003c/p>\n\u003cp>For doctors, the main idea behind direct primary care is to simplify -- scale down, deal mostly in cash and focus on taking better care of fewer patients. This includes a good deal of listening and analysis of how a patient's current environment or life situation may be affecting their health.\u003c/p>\n\u003cp>This type of service \u003ca href=\"http://www.kevinmd.com/blog/2011/07/direct-primary-care-reduces-primary-care-costs.html\" target=\"_blank\">took off as a movement\u003c/a> in 2011, and the model was first evaluated in a 2013 \u003ca href=\"http://www.chcf.org/publications/2013/04/retainer-direct-primary-care\" target=\"_blank\">study\u003c/a> by the California Health Care Foundation. It's gaining significant traction, says Laurence Baker, the chair of Stanford University's Department of Health Research and Policy.\u003c/p>\n\u003cp>\"Absolutely it's a growing segment of primary care,\" he says. \"The model we have is challenged in a lot of ways, the longer a patient waits to see a doctor, the shorter time spent with the doctor. So we have to think about what else we can do to change that.\u003c/p>\n\u003cp>\"I would be surprised if it took over the world,\" Baker added, \"But I certainly wouldn't be surprised if it grew substantially more in the next few years.\"\u003c/p>\n\u003cp>\u003cstrong>'Doctors Will Be in Mass Exodus'\u003c/strong>\u003c/p>\n\u003cp>The reason doctors need to see so many patients in rapid succession is because of huge overhead, says Pamela Wible, a physician in Eugene, Ore., who helps doctors set up their ideal practice using the direct primary care model. In fact, she says, most doctors see just a small fraction of gross earnings.\u003c/p>\n\u003cp>But the kind of streamlined operation found in direct primary care allows doctors to keep a greater share of the money coming in, she says, even if they make less overall than in a traditional practice.\u003c/p>\n\u003cp>\"My expenses are so low, they're now about 10 percent of my practice,\" Wible says. \"And it used to be 74 percent.\"\u003c/p>\n\u003cp>Wible says the direct primary care model has at its heart the relationship between doctor and patient. She says doctors \"will be in mass exodus\" once they learn they can run their practice differently and \"get off the production line.\"\u003c/p>\n\u003cp>Dr. Emilie Scott did just that, in March. She had worked in an academic medical setting for many years, then in a large group practice for another five before venturing out on her own.\u003c/p>\n\u003cp>There are no waiting room magazines in her tiny Irvine medical office, because there is no waiting room. And that's because there is no waiting.\u003c/p>\n\u003cp>She charges her patients $59 per month. Just five months in, she says, her practice is already breaking even.\u003c/p>\n\u003cp>\"For me, it puts the heart back in medicine,\" Scott says, grinning. In the past, \"I had to see patients in a rapid style, trying to get patients out the door. It wears on you.\"\u003c/p>\n\u003cp>She understands the fear some doctors have of taking the leap, in part because of the massive debt they've incurred from medical school. But, she says, \"The point here isn't to become a millionaire. You make a good living, and you can practice in line with your values.\"\u003c/p>\n\u003cp>Scott said some of her patients are surprised at how little her service costs.\u003c/p>\n\u003cp>\"I had one woman who said she couldn't afford it but said she'd listen, and then I explained it, and she was like, 'Are we on Candid Camera or something? What's the catch?'\"\u003c/p>\n\u003cp>\u003cstrong>Shrinking the Physician Pool?\u003c/strong>\u003c/p>\n\u003cp>Janet Coffman, a health policy professor at the University of California, San Francisco, says she doesn't expect direct primary care to explode on the medical scene. Rather, she believes it will make slow and steady inroads. She doesn't think insurance companies will fight the model, even though it cuts them out of the medical care delivery system.\u003c/p>\n\u003cp>But one major effect direct primary care could have, she said, is to further shrink the already inadequate pool of primary care physicians.\u003c/p>\n\u003cp>\"If I were an insurance company, I think I'd be more concerned about recruiting and keeping PCPs because of this,\" Coffman says.\u003c/p>\n\u003cp>Betsy Imholz, director of special projects for Consumers Union, agrees that could be a concern if direct primary care catches on.\u003c/p>\n\u003cp>“Primary care is one of the least lucrative areas for doctors to go into,” Imholz says, “and therefore sometimes difficult for insurers to get sufficient numbers of.”\u003c/p>\n\u003cp>Imholz sees some other potential problems with the model. While she understands why both doctors and patients are attracted to direct primary care — “the old \u003ca href=\"https://www.youtube.com/watch?v=Y10VEkyKd3w\" target=\"_blank\">Marcus Welby\u003c/a> model,” as she puts it — she thinks it’s a move in the opposite direction of the current push for an integrated health care system. Ideally, doctors would have access to patients’ electronic health records, and \u003ca href=\"http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2014/rwjf409988\" target=\"_blank\">all-payer claims databases\u003c/a>, at least \u003ca href=\"http://www.commondreams.org/newswire/2016/08/03/all-six-states-keep-consumers-dark-cost-medical-procedures\" target=\"_blank\">theoretically\u003c/a>, would allow purchasers of insurance to compare costs.\u003c/p>\n\u003cp>“It goes against this coordinated care model that the Affordable Care Act and the U.S. is coming to,” she says, “having things not fragmented but coordinated [in a way that] enables us to check, make quality assessments.”\u003c/p>\n\u003cp>Imholz is also concerned this type of practice could attract healthier people, who might see direct primary care as a substitute for insurance rather than an extra. And that could deprive the ACA \u003ca href=\"https://www.washingtonpost.com/news/to-your-health/wp/2016/03/30/theyre-sicker-plus-aca-enrollees-cost-more-in-care-major-insurer-finds/\" target=\"_blank\">risk pool \u003c/a>of the very type of patients \u003ca href=\"http://www.newsweek.com/obamacare-premiums-rise-10-percent-2017-490268\" target=\"_blank\">needed to keep cost increases manageable\u003c/a>.\u003c/p>\n\u003cp>Consumers in California, Imholz said, should also keep in mind a little-known benefit of the plans offered on the state’s health care exchange, Covered California: those plans are required to offer three visits outside of the deductible, costing only a co-pay.\u003c/p>\n\u003cp>Ultimately, she says, if patients do want to go the route of direct primary care, they should create their own \u003ca href=\"https://www.healthit.gov/providers-professionals/faqs/what-personal-health-record\" target=\"_blank\">personal health record\u003c/a> for each visit, in case at some point they need to visit a specialist for a serious health problem.\u003c/p>\n\u003cp>As to whether direct primary care will positively impact patients' health, Laurence Baker says it's not clear whether or not the longer office and home visits end up providing better care.\u003c/p>\n\u003cp>\"I'm not sure we know if this makes you healthier at the end of the day,\" Baker says. \"It will make you happier, definitely, but the jury is still out about whether it improves outcomes.\"\u003c/p>\n\u003cp>\u003cstrong>'It's Lovely'\u003c/strong>\u003c/p>\n\u003cp>Back in Half Moon Bay, physician Lorraine Page says she doesn't need data. She tries to find the words for the improvement she has seen in her life and the lives of her patients.\u003c/p>\n\u003cp>\"It's … lovely,\" she says with a laugh. \"It's just lovely. The patients do better, I get to see the whole person, the whole family. It's true family practice. And it's very straightforward. I see the person, I get paid. It's simple.\"\u003c/p>\n\u003cp>This type of practice, she says, is what many young doctors-to-be have in mind when they first think about entering medicine.\u003c/p>\n\u003cp>It's an odd twist that Page's current work is considered the cutting- edge of primary care medicine, when it so closely resembles a kind of 1950s Norman Rockwell painting of what a general practitioner is.\u003c/p>\n\u003cp>Most doctors don't even think about what they want anymore, Page says. They get caught up in the system and don't realize there's another choice.\u003c/p>\n\u003cp>But leaving was surprisingly easy.\u003c/p>\n\u003cp>\"Look, your skills are in your mind,\" Page says. \"You can do that anywhere.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Jon Brooks contributed to this report.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Dr. Lorraine Page, believe it or not, makes house calls.\u003c/p>\n\u003cp>One place she visits is the home of Ann Caponio, a one-bedroom apartment in Half Moon Bay, California. You can tell a knitter lives there: baskets of wool and hanks of yarn adorn the room, and in the corner sits a wooden spinning wheel.\u003c/p>\n\u003caside class=\"pullquote alignright\">A new model gains in popularity: no insurance but unlimited doctor visits are provided for a monthly fee.\u003c/aside>\n\u003cp>But arthritis has put an end to that hobby. And for a while, Caponio, 69, wasn't even getting out.\u003c/p>\n\u003cp>\"I kind of stopped going downtown,\" she says, in her Midland, Texas twang, a holdover from childhood. \"Omigod those stairs.\"\u003c/p>\n\u003cp>She's talking about a steep, 17-step staircase leading to her front door. Three hip replacements left negotiating them a dangerous proposition.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"I tend to fall. And I fell on those damned stairs once.\"\u003c/p>\n\u003cp>And that's where Lorraine Page enters the picture.\u003c/p>\n\u003cp>Besides the house calls, Page provides a little more than Caponio might expect from a primary care doc available through Medicare. Page, for instance, has aided her patient with a number of safety issues, including helping her find someone to rig up a chairlift on those stairs. Now, she can sit on a seat at the top and glide to the bottom.\u003c/p>\n\u003cp>\"It opens up a whole new world for me,\" Caponio says.\u003c/p>\n\u003cp>\u003cstrong>A Different Model\u003c/strong>\u003c/p>\n\u003cp>A whole new world is what Dr. Page herself has been experiencing, ever since she left the traditional clinic setting to try something different. She does have a small office, but prefers to visit most of her patients in their homes.\u003c/p>\n\u003caside class=\"pullquote alignright\">When they learn they can get off the production line, 'Doctors will be in mass exodus.'\u003ccite>Dr. Pamela Wible\u003c/cite>\u003c/aside>\n\u003cp>She's one of a growing number of doctors who have cut loose from what she calls the \"assembly-line, volume approach\" that most of her colleagues have experienced. These breakaway docs are now using a health care delivery model called direct primary care. Page has cut back on the number of patients she sees, and spends more time with the ones she does. She doesn't take insurance and deals mostly in cash. Page charges each time she sees a patient, but most direct primary care doctors bill a monthly fee for unlimited visits.\u003c/p>\n\u003cp>In her previous practice, Page says, the pressure to see more patients in less time wore her down, as did the need for an army of support staff to process the copious paperwork required by insurance companies.\u003c/p>\n\u003cp>\"At our office, we had six full-time doctors. And we had seven full-time insurance people. So [that's] more than one full-time person trying to get reimbursement for patients I was seeing.\"\u003c/p>\n\u003cp>The benefits of leaving that bureaucratic load behind includes more time with patients but shorter days as her total load has been reduced. And she's doing the kind of family-care medicine for which she was trained.\u003c/p>\n\u003cp>\"And I enjoy it a lot more,\" Page says. \"Let's not minimize that.\"\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003cstrong>What Doctors Want\u003c/strong>\u003c/p>\n\u003cp>A 2012 \u003ca href=\"http://www.medscape.com/features/slideshow/compensation/2012/public\" target=\"_blank\">Medscape study\u003c/a> found that 46 percent of primary care physicians showed such dissatisfaction with their careers, they wouldn't pursue medicine if they could choose again. Another\u003ca href=\"http://www.physiciansfoundation.org/healthcare-research/a-survey-of-americas-physicians-practice-patterns-and-perspectives\" target=\"_blank\"> study\u003c/a>, from the Physicians Foundation, found 60 percent of primary care doctors would not recommend a career in medicine. Just six percent described the morale of their colleagues as positive.\u003c/p>\n\u003cp>Overall, says Wanda Filer, president of the American Academy of Family Physicians, primary care doctors feel overworked and ineffective. \"Most patients are just rushed out the door,\" she says. \"That's not what doctors want to do. This new model of care gets the physician and the patient out of that hamster-wheel model.\"\u003c/p>\n\u003cp>Filer says about three percent of the organization's 69,000 primary care doctors have made the move to direct primary care in the past couple of years, and that number is increasing rapidly as other physicians see it succeed.\u003c/p>\n\u003cp>In fact, Filer says, her organization has taken the unusual step of convening informational seminars for the large number of family doctors who have expressed interest in getting off the grid and starting a kinder, gentler practice.\u003c/p>\n\u003cp>\u003cb>Cash and Care\u003c/b>\u003c/p>\n\u003cfigure id=\"attachment_220077\" class=\"wp-caption alignright\" style=\"max-width: 357px\">\u003cimg class=\"wp-image-220077\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/emiliescott1-885x1180.jpg\" alt=\"Dr. Emilie Scott of Irvine, Calif.\" width=\"357\" height=\"476\">\u003cfigcaption class=\"wp-caption-text\">Dr. Emilie Scott of Irvine, Calif., says the direct primary care model has put 'the heart back in medicine' for her. (David Gorn/KQED) \u003ccite>(David Gorn/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>While direct primary care has some similarities to \u003ca href=\"http://www.healthline.com/health-news/the-future-of-healthcare-could-be-in-concierge-medicine-063015\" target=\"_blank\">concierge medicine\u003c/a>, it differs in that direct primary care rejects insurance. And, because concierge medicine sprang from wealthy patients’ desire for greater access to their doctors, patients can \u003ca href=\"http://www.wsj.com/articles/SB10001424052702303471004579165470633112630\" target=\"_blank\">pay up to thousands of dollars a month\u003c/a> for same-day appointments, round-the-clock phone access, house calls and other services.\u003c/p>\n\u003cp>In contrast, direct primary care doctors charge a relatively small monthly fee. While that can be an extra cost for those who also need insurance to cover more serious medical problems, many patients have high-deductible plans, making the monthly expense of direct primary care a good deal, especially for those who go to the doctor a lot.\u003c/p>\n\u003cp>For doctors, the main idea behind direct primary care is to simplify -- scale down, deal mostly in cash and focus on taking better care of fewer patients. This includes a good deal of listening and analysis of how a patient's current environment or life situation may be affecting their health.\u003c/p>\n\u003cp>This type of service \u003ca href=\"http://www.kevinmd.com/blog/2011/07/direct-primary-care-reduces-primary-care-costs.html\" target=\"_blank\">took off as a movement\u003c/a> in 2011, and the model was first evaluated in a 2013 \u003ca href=\"http://www.chcf.org/publications/2013/04/retainer-direct-primary-care\" target=\"_blank\">study\u003c/a> by the California Health Care Foundation. It's gaining significant traction, says Laurence Baker, the chair of Stanford University's Department of Health Research and Policy.\u003c/p>\n\u003cp>\"Absolutely it's a growing segment of primary care,\" he says. \"The model we have is challenged in a lot of ways, the longer a patient waits to see a doctor, the shorter time spent with the doctor. So we have to think about what else we can do to change that.\u003c/p>\n\u003cp>\"I would be surprised if it took over the world,\" Baker added, \"But I certainly wouldn't be surprised if it grew substantially more in the next few years.\"\u003c/p>\n\u003cp>\u003cstrong>'Doctors Will Be in Mass Exodus'\u003c/strong>\u003c/p>\n\u003cp>The reason doctors need to see so many patients in rapid succession is because of huge overhead, says Pamela Wible, a physician in Eugene, Ore., who helps doctors set up their ideal practice using the direct primary care model. In fact, she says, most doctors see just a small fraction of gross earnings.\u003c/p>\n\u003cp>But the kind of streamlined operation found in direct primary care allows doctors to keep a greater share of the money coming in, she says, even if they make less overall than in a traditional practice.\u003c/p>\n\u003cp>\"My expenses are so low, they're now about 10 percent of my practice,\" Wible says. \"And it used to be 74 percent.\"\u003c/p>\n\u003cp>Wible says the direct primary care model has at its heart the relationship between doctor and patient. She says doctors \"will be in mass exodus\" once they learn they can run their practice differently and \"get off the production line.\"\u003c/p>\n\u003cp>Dr. Emilie Scott did just that, in March. She had worked in an academic medical setting for many years, then in a large group practice for another five before venturing out on her own.\u003c/p>\n\u003cp>There are no waiting room magazines in her tiny Irvine medical office, because there is no waiting room. And that's because there is no waiting.\u003c/p>\n\u003cp>She charges her patients $59 per month. Just five months in, she says, her practice is already breaking even.\u003c/p>\n\u003cp>\"For me, it puts the heart back in medicine,\" Scott says, grinning. In the past, \"I had to see patients in a rapid style, trying to get patients out the door. It wears on you.\"\u003c/p>\n\u003cp>She understands the fear some doctors have of taking the leap, in part because of the massive debt they've incurred from medical school. But, she says, \"The point here isn't to become a millionaire. You make a good living, and you can practice in line with your values.\"\u003c/p>\n\u003cp>Scott said some of her patients are surprised at how little her service costs.\u003c/p>\n\u003cp>\"I had one woman who said she couldn't afford it but said she'd listen, and then I explained it, and she was like, 'Are we on Candid Camera or something? What's the catch?'\"\u003c/p>\n\u003cp>\u003cstrong>Shrinking the Physician Pool?\u003c/strong>\u003c/p>\n\u003cp>Janet Coffman, a health policy professor at the University of California, San Francisco, says she doesn't expect direct primary care to explode on the medical scene. Rather, she believes it will make slow and steady inroads. She doesn't think insurance companies will fight the model, even though it cuts them out of the medical care delivery system.\u003c/p>\n\u003cp>But one major effect direct primary care could have, she said, is to further shrink the already inadequate pool of primary care physicians.\u003c/p>\n\u003cp>\"If I were an insurance company, I think I'd be more concerned about recruiting and keeping PCPs because of this,\" Coffman says.\u003c/p>\n\u003cp>Betsy Imholz, director of special projects for Consumers Union, agrees that could be a concern if direct primary care catches on.\u003c/p>\n\u003cp>“Primary care is one of the least lucrative areas for doctors to go into,” Imholz says, “and therefore sometimes difficult for insurers to get sufficient numbers of.”\u003c/p>\n\u003cp>Imholz sees some other potential problems with the model. While she understands why both doctors and patients are attracted to direct primary care — “the old \u003ca href=\"https://www.youtube.com/watch?v=Y10VEkyKd3w\" target=\"_blank\">Marcus Welby\u003c/a> model,” as she puts it — she thinks it’s a move in the opposite direction of the current push for an integrated health care system. Ideally, doctors would have access to patients’ electronic health records, and \u003ca href=\"http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2014/rwjf409988\" target=\"_blank\">all-payer claims databases\u003c/a>, at least \u003ca href=\"http://www.commondreams.org/newswire/2016/08/03/all-six-states-keep-consumers-dark-cost-medical-procedures\" target=\"_blank\">theoretically\u003c/a>, would allow purchasers of insurance to compare costs.\u003c/p>\n\u003cp>“It goes against this coordinated care model that the Affordable Care Act and the U.S. is coming to,” she says, “having things not fragmented but coordinated [in a way that] enables us to check, make quality assessments.”\u003c/p>\n\u003cp>Imholz is also concerned this type of practice could attract healthier people, who might see direct primary care as a substitute for insurance rather than an extra. And that could deprive the ACA \u003ca href=\"https://www.washingtonpost.com/news/to-your-health/wp/2016/03/30/theyre-sicker-plus-aca-enrollees-cost-more-in-care-major-insurer-finds/\" target=\"_blank\">risk pool \u003c/a>of the very type of patients \u003ca href=\"http://www.newsweek.com/obamacare-premiums-rise-10-percent-2017-490268\" target=\"_blank\">needed to keep cost increases manageable\u003c/a>.\u003c/p>\n\u003cp>Consumers in California, Imholz said, should also keep in mind a little-known benefit of the plans offered on the state’s health care exchange, Covered California: those plans are required to offer three visits outside of the deductible, costing only a co-pay.\u003c/p>\n\u003cp>Ultimately, she says, if patients do want to go the route of direct primary care, they should create their own \u003ca href=\"https://www.healthit.gov/providers-professionals/faqs/what-personal-health-record\" target=\"_blank\">personal health record\u003c/a> for each visit, in case at some point they need to visit a specialist for a serious health problem.\u003c/p>\n\u003cp>As to whether direct primary care will positively impact patients' health, Laurence Baker says it's not clear whether or not the longer office and home visits end up providing better care.\u003c/p>\n\u003cp>\"I'm not sure we know if this makes you healthier at the end of the day,\" Baker says. \"It will make you happier, definitely, but the jury is still out about whether it improves outcomes.\"\u003c/p>\n\u003cp>\u003cstrong>'It's Lovely'\u003c/strong>\u003c/p>\n\u003cp>Back in Half Moon Bay, physician Lorraine Page says she doesn't need data. She tries to find the words for the improvement she has seen in her life and the lives of her patients.\u003c/p>\n\u003cp>\"It's … lovely,\" she says with a laugh. \"It's just lovely. The patients do better, I get to see the whole person, the whole family. It's true family practice. And it's very straightforward. I see the person, I get paid. It's simple.\"\u003c/p>\n\u003cp>This type of practice, she says, is what many young doctors-to-be have in mind when they first think about entering medicine.\u003c/p>\n\u003cp>It's an odd twist that Page's current work is considered the cutting- edge of primary care medicine, when it so closely resembles a kind of 1950s Norman Rockwell painting of what a general practitioner is.\u003c/p>\n\u003cp>Most doctors don't even think about what they want anymore, Page says. They get caught up in the system and don't realize there's another choice.\u003c/p>\n\u003cp>But leaving was surprisingly easy.\u003c/p>\n\u003cp>\"Look, your skills are in your mind,\" Page says. \"You can do that anywhere.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>Apple introduced a new generation of smartwatches that will include GPS tracking and enough water resistance to swim with, part of its effort to boost sales in its newest product line. The announcement was made at an Apple media event in San Francisco.\u003c/p>\n\u003cp>Although the first version of the Apple Watch can tap the GPS function on a companion iPhone, that requires carrying another device with you. GPS isn't common in smartwatches, though the upcoming Samsung Gear S3 will also get GPS.\u003c/p>\n\u003cp>As for swims, the previous Apple Watch model is resistant to splashes, but not extensive use in water.\u003c/p>\n\u003cp>Apple says one of the engineering challenges has been sealing the speaker port, which needs air to work. The company says it has designed the speaker to eject water after workouts.\u003c/p>\n\u003cp>Fitbit has one swim-proof model and Garmin has a few, but the capability isn't common.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The watch update was announced 17 months after the first model came out. The \"Series 2\" watch will also get a faster processor and a brighter display for outdoor use. Apple didn't make any mention of the new model's battery life. The original model ran down its battery quickly.\u003c/p>\n\u003cp>New styles include a case made of ceramic and a run-centric design made in collaboration with Nike.\u003c/p>\n\u003cp>The original model is getting a price cut, to $269, and will get a faster processor. Series 2 will start at $369. The updates are coming Sept. 16. Existing watches can get new software on Sept. 13.\u003c/p>\n\u003cp>The Apple Watch has been the only major new product released since CEO Tim Cook succeeded company founder Steve Jobs as CEO five years ago, and sales of the device so far have been lukewarm. The company hasn't disclosed sales figures for the Internet-connected watch, but research firm IDC estimates that Apple shipped 1.6 million watches in the April-June quarter, less half the 3.6 million a year earlier.\u003c/p>\n\u003cp>Watch sales are expected to increase this fall as the holiday gift season gets underway. Analyst Jan Dawson of Jackdaw Research says consumers are finding the watch is useful for health and fitness tracking, but that other apps have not caught on.\u003c/p>\n\u003cp>The Apple Watch will get a popular new app later this year tough. Niantic Labs, the maker of the cultural sensation Pokemon Go, announced Tuesday that the game will be released for the watch, building upon the apps that it already has built for the iPhone and devices running on Google's popular Android software.\u003c/p>\n\u003cp>A few more details on the health aspects of Apple Watch:\u003c/p>\n\u003cp>https://twitter.com/Sydell/status/773576853336371202\u003c/p>\n\u003cp>https://twitter.com/Sydell/status/773575795725918208\u003c/p>\n\u003cp>https://twitter.com/chrissyfarr/status/773573920880328704\u003c/p>\n\u003cp>https://twitter.com/chrissyfarr/status/773573648716136448\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The watch update was announced 17 months after the first model came out. The \"Series 2\" watch will also get a faster processor and a brighter display for outdoor use. Apple didn't make any mention of the new model's battery life. The original model ran down its battery quickly.\u003c/p>\n\u003cp>New styles include a case made of ceramic and a run-centric design made in collaboration with Nike.\u003c/p>\n\u003cp>The original model is getting a price cut, to $269, and will get a faster processor. Series 2 will start at $369. The updates are coming Sept. 16. Existing watches can get new software on Sept. 13.\u003c/p>\n\u003cp>The Apple Watch has been the only major new product released since CEO Tim Cook succeeded company founder Steve Jobs as CEO five years ago, and sales of the device so far have been lukewarm. The company hasn't disclosed sales figures for the Internet-connected watch, but research firm IDC estimates that Apple shipped 1.6 million watches in the April-June quarter, less half the 3.6 million a year earlier.\u003c/p>\n\u003cp>Watch sales are expected to increase this fall as the holiday gift season gets underway. Analyst Jan Dawson of Jackdaw Research says consumers are finding the watch is useful for health and fitness tracking, but that other apps have not caught on.\u003c/p>\n\u003cp>The Apple Watch will get a popular new app later this year tough. Niantic Labs, the maker of the cultural sensation Pokemon Go, announced Tuesday that the game will be released for the watch, building upon the apps that it already has built for the iPhone and devices running on Google's popular Android software.\u003c/p>\n\u003cp>A few more details on the health aspects of Apple Watch:\u003c/p>\u003c/p>\u003c/div>",
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"tagline": "The flip side of gentrification, told through one town",
"info": "Gentrification is changing cities across America, forcing people from neighborhoods they have long called home. Call them the displaced. Now those priced out of the Bay Area are looking for a better life in an unlikely place. American Suburb follows this migration to one California town along the Delta, 45 miles from San Francisco. But is this once sleepy suburb ready for them?",
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},
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"tagline": "Exploring the Bay Area, one question at a time",
"info": "KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.",
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},
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"info": "KQED’s statewide radio news program providing daily coverage of issues, trends and public policy decisions.",
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"order": 8
},
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},
"link": "https://www.cityarts.net",
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"order": 1
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"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.",
"airtime": "THU 10pm, FRI 1am",
"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"
},
"link": "/radio/program/commonwealth-club",
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}
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"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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"source": "kqed",
"order": 9
},
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"id": "fresh-air",
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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",
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"source": "NPR"
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"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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"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. ",
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"jerrybrown": {
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"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. ",
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"order": 18
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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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"rss": "https://feeds.npr.org/510016/podcast.xml"
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},
"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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"rss": "https://feeds.publicradio.org/public_feeds/marketplace-pm/rss/rss"
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},
"masters-of-scale": {
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"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",
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"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>",
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