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"disqusTitle": "What Were the Year's Biggest Digital Health Stories? An Interview With CNBC's Christina Farr",
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"content": "\u003cp>We like to check in every once in awhile on the world of digital health, an area full of promise \u003ca href=\"https://www.kqed.org/futureofyou/438782/digital-medicine-may-have-just-hit-the-trough-of-disillusionment\" target=\"_blank\" rel=\"noopener\">but not, thus far, overbrimming with results\u003c/a>.\u003c/p>\n\u003cp>There are \u003ca href=\"https://www.kqed.org/futureofyou/437796/what-are-digital-healths-biggest-successes-and-disappointments-cnbcs-chrissy-farr-weighs-in\" target=\"_blank\" rel=\"noopener\">exceptions\u003c/a>, however, and as we did last year at this time, we're turning to San Francisco-based CNBC journalist\u003cstrong>\u003ca href=\"https://www.cnbc.com/christina-farr/\" target=\"_blank\" rel=\"noopener\"> Christina Farr, \u003c/a>\u003c/strong>who breaks a lot of health tech stories, to clue us in on her beat. This year we asked her what were the really big stories she covered in 2018.\u003c/p>\n\u003cp>\u003cstrong>Here are some highlights from our talk, in Christina's own words. The following has been edited for length and clarity.\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>Big Digital Health: It's a Thing\u003c/strong>\u003c/p>\n\u003cp>It was a really big year in digital health, particularly where large tech companies are concerned: Apple, Amazon, Google, Microsoft, Samsung...\u003c/p>\n\u003caside class=\"pullquote alignright\">'As [big] tech companies attempt to become trillion-dollar or greater businesses, they need something more than just their core competencies. And you can't ignore health care; it's just too big.'\u003c/aside>\n\u003cp>John Doerr, the venture capitalist who is a big health investor, recounted at the Forbes Healthcare Summit how internet companies in the '90s aimed to disrupt the advertising space, which back then was based mostly on television advertising. Those companies thought they could do a better job because there was really no way at that time to measure and track the performance of ads in real time. So they took on this industry, which is now worth about $75 billion in the U.S.\u003c/p>\n\u003cp>By comparison the health care opportunity is $3.5 trillion in America alone. As these tech companies attempt to become trillion-dollar or greater businesses, they need something more than just their core competencies. And you can't ignore health care; it's just too big.\u003c/p>\n\u003cp>\u003cstrong>Here Comes Amazon ...\u003c/strong>\u003c/p>\n\u003cp>Amazon’s \u003ca href=\"https://www.cnbc.com/2018/06/28/amazon-to-acquire-online-pharmacy-pillpack.html\" target=\"_blank\" rel=\"noopener\">acquisition\u003c/a> of online pharmacy PillPack in June was a very big story. The announcement really marked them as a player, and the market response -- billions of dollars were knocked off some of these pharmacy stocks -- showed how much of a threat Amazon could be. It's also a very good deal for PillPack and probably showed the digital health community that those sorts of exits are possible.\u003c/p>\n\u003cfigure id=\"attachment_437838\" class=\"wp-caption alignright\" style=\"max-width: 589px\">\u003cimg class=\"size-full wp-image-437838\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/12/chrissyfarrphoto1.png\" alt=\"\" width=\"589\" height=\"428\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1.png 589w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-160x116.png 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-240x174.png 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-375x272.png 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-520x378.png 520w\" sizes=\"(max-width: 589px) 100vw, 589px\">\u003cfigcaption class=\"wp-caption-text\">CNBC's Chrissy Farr. \u003ccite>(CNBC)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Around the same time, Amazon also \u003ca href=\"https://www.cnbc.com/2018/12/14/amazon-explored-medical-diagnostics-was-in-talks-to-buy-confer-health.html\" target=\"_blank\" rel=\"noopener\">looked at Confer Health\u003c/a>, a company in the at-home medical diagnostic space. That's interesting, because it speaks to a strategy that goes deeper than just drug delivery.\u003c/p>\n\u003cp>Where Amazon could potentially go is this: Imagine you're experiencing symptoms for strep throat, and you \u003ca href=\"https://thenextweb.com/artificial-intelligence/2018/10/15/amazons-new-patent-will-allow-alexa-to-detect-your-illness/\" target=\"_blank\" rel=\"noopener\">talk to your Amazon Alexa device\u003c/a>, and there's an AI system, or a real physician, even, that speaks to you and recommends you get tested. A courier comes to your home with a portable device from which you run a sample and you get a result immediately. Or from there the same physician ships you a prescription. And that could all be done in a couple hours.\u003c/p>\n\u003cp>Or imagine an elderly person who potentially has the flu and might have to go to a physical clinic, and then from there bring a prescription to a Walgreens. That is an annoying user experience but also think about how many people they could infect with the flu on the way to the clinic and pharmacy. So I think there could be some basic things Amazon can do with diagnosing illness in the home. And if they can do that coupled with prescription drug delivery, that's a very \u003ca href=\"https://www.cnbc.com/2018/12/17/amazon-vision-future-health-care.html\" target=\"_blank\" rel=\"noopener\">different experience of health care\u003c/a> than we've seen.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>...and Apple\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The whole Apple health care rollout was big, and I would probably pinpoint the electro-cardiogram\u003ca href=\"https://www.cnbc.com/video/2018/12/05/apple-watch-ecg-sensor-review.html\" target=\"_blank\" rel=\"noopener\"> being introduced on the Apple Watch\u003c/a> as the biggest story from what they've done this year. It got Apple into a more regulated medical device space; I don't know if they are now a medical device company, but they're certainly a consumer tech company that makes medical products.\u003c/p>\n\u003cp>It’s an important story because it sort of changed the game around proactive health monitoring. They were looking specifically for people who didn't even know they have a type of arrhythmia called atrial fibrillation.\u003c/p>\n\u003cp>That's controversial, as there are doctors who think this is bad news, because it's going to lead to a lot of anxious people thinking there's something wrong when there isn't. I've been hearing from physicians who already have patients with normal results reach out and ask, ‘Hey, does this look right?’ Doctors are already overloaded and don't want to be managing an influx of healthy people. So Apple's got to really make sure the false positive rate isn't too high, and they need to be transparent about what this ECG means.\u003c/p>\n\u003cp>But I think this is probably the beginning of what Apple's overall strategy is when it comes to bringing health monitoring to the watch.\u003c/p>\n\u003cp>\u003cstrong>... and, uh, Facebook? \u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">This year even Facebook was trying to get into digital health. At one point it hired some people in the medical community to \u003c/span>\u003ca href=\"https://www.cnbc.com/2018/04/05/facebook-building-8-explored-data-sharing-agreement-with-hospitals.html\">\u003cspan style=\"font-weight: 400\">approach top hospitals\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> about a patient data-sharing agreement. Facebook wanted to see if it could match up the health system's user data with its own data to see if patients might need special care\u003c/span>\u003cspan style=\"font-weight: 400\">. That seemed to be have fallen apart out of general fears of data privacy surrounding the company.\u003c/span>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe src=\"https://player.cnbc.com/p/gZWlPC/cnbc_global?playertype=synd&byGuid=7000011603&size=530_298\" width=\"530\" height=\"298\" scrolling=\"yes\" class=\"iframe-class\" frameborder=\"0\">\u003c/iframe>\u003c/p>\n\u003cp>\u003cstrong>'Real Money' for Digital Health Startup \u003c/strong>\u003c/p>\n\u003cp>Pharmaceutical giant \u003ca href=\"https://www.cnbc.com/2018/02/15/roche-buying-flatiron-health-backed-by-alphabet.html\" target=\"_blank\" rel=\"noopener\">Roche bought Flatiron Health\u003c/a> in February for just over $2 billion. I think that was a big deal because it was a pharmaceutical company spending real money on a digital health startup. I think it shows that there can be real successes in the space. It's also a thumbs-up for precision medicine; Flatiron was basically creating a medical record system that was popular with oncologists, and then using data to figure out better treatments for those patients.\u003c/p>\n\u003cp>\u003cstrong>Watson Stumbles, or: \u003ca href=\"https://www.youtube.com/watch?v=P18EdAKuC1U\" target=\"_blank\" rel=\"noopener\">Health Care Ain't 'Jeopardy'\u003c/a>\u003c/strong>\u003c/p>\n\u003cp>In talking with folks familiar with the IBM Watson strategy, I think where they may have gone wrong is in building this AI system that was \u003ca href=\"https://www.statnews.com/2017/09/05/watson-ibm-cancer/\" target=\"_blank\" rel=\"noopener\">trained using top U.S. oncologists\u003c/a>, and then they tried to sell it to other big cancer centers. So if you're an oncologist at one of these other places, why wouldn't you just say, \"Well, I'm as good as these physicians at Memorial Sloan Kettering?\"\u003c/p>\n\u003cp>So I think they tried to sell into the wrong market because they thought they could get these really big contracts, and what they probably should have done is figured out a much cheaper system that they could have sold to smaller health systems; you can see why some of these local offices and physicians who don't have the same resources as Sloan Kettering would find it beneficial to get information on what Sloan Kettering would do in any given situation.\u003c/p>\n\u003cp>\u003cstrong>It's the Outcomes, Stupid\u003c/strong>\u003c/p>\n\u003cp>For a long time you didn't really see digital health companies invest in outcomes, because I think they wanted to be viewed more as technology companies. But there were a few -- Livongo, Omada Health, Propeller Health -- that were always sort of forward-leaning and did do that investment from the outset, and I think those companies are the ones that are doing better now.\u003c/p>\n\u003cp>Propeller Health was \u003ca href=\"https://www.jsonline.com/story/money/business/health-care/2018/12/03/propeller-health-madison-acquired-225-million/2192097002/\" target=\"_blank\" rel=\"noopener\">sold\u003c/a> this year to ResMed, for instance. I think it was because it had that focus on outcomes.\u003c/p>\n\u003cp>That model is especially important for the influx of companies trying to sell into the employer space, because in order to tell the difference between them, there has been a lot of questioning around: \"Is this actually making my population healthier? Is it really going to save me money?\"\u003c/p>\n\u003cp>In general I think the companies that are coming up this year have kind of learned from the mistakes of some of their predecessors and are positioning themselves with a bit more humility, and in many cases doing the right thing. They don't describe themselves, when pitching potential customers, as startups. They take themselves more seriously now, and they want to be viewed as new health care companies and businesses.\u003c/p>\n\u003cp>It just speaks to a general sort of growing-up.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>We like to check in every once in awhile on the world of digital health, an area full of promise \u003ca href=\"https://www.kqed.org/futureofyou/438782/digital-medicine-may-have-just-hit-the-trough-of-disillusionment\" target=\"_blank\" rel=\"noopener\">but not, thus far, overbrimming with results\u003c/a>.\u003c/p>\n\u003cp>There are \u003ca href=\"https://www.kqed.org/futureofyou/437796/what-are-digital-healths-biggest-successes-and-disappointments-cnbcs-chrissy-farr-weighs-in\" target=\"_blank\" rel=\"noopener\">exceptions\u003c/a>, however, and as we did last year at this time, we're turning to San Francisco-based CNBC journalist\u003cstrong>\u003ca href=\"https://www.cnbc.com/christina-farr/\" target=\"_blank\" rel=\"noopener\"> Christina Farr, \u003c/a>\u003c/strong>who breaks a lot of health tech stories, to clue us in on her beat. This year we asked her what were the really big stories she covered in 2018.\u003c/p>\n\u003cp>\u003cstrong>Here are some highlights from our talk, in Christina's own words. The following has been edited for length and clarity.\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>Big Digital Health: It's a Thing\u003c/strong>\u003c/p>\n\u003cp>It was a really big year in digital health, particularly where large tech companies are concerned: Apple, Amazon, Google, Microsoft, Samsung...\u003c/p>\n\u003caside class=\"pullquote alignright\">'As [big] tech companies attempt to become trillion-dollar or greater businesses, they need something more than just their core competencies. And you can't ignore health care; it's just too big.'\u003c/aside>\n\u003cp>John Doerr, the venture capitalist who is a big health investor, recounted at the Forbes Healthcare Summit how internet companies in the '90s aimed to disrupt the advertising space, which back then was based mostly on television advertising. Those companies thought they could do a better job because there was really no way at that time to measure and track the performance of ads in real time. So they took on this industry, which is now worth about $75 billion in the U.S.\u003c/p>\n\u003cp>By comparison the health care opportunity is $3.5 trillion in America alone. As these tech companies attempt to become trillion-dollar or greater businesses, they need something more than just their core competencies. And you can't ignore health care; it's just too big.\u003c/p>\n\u003cp>\u003cstrong>Here Comes Amazon ...\u003c/strong>\u003c/p>\n\u003cp>Amazon’s \u003ca href=\"https://www.cnbc.com/2018/06/28/amazon-to-acquire-online-pharmacy-pillpack.html\" target=\"_blank\" rel=\"noopener\">acquisition\u003c/a> of online pharmacy PillPack in June was a very big story. The announcement really marked them as a player, and the market response -- billions of dollars were knocked off some of these pharmacy stocks -- showed how much of a threat Amazon could be. It's also a very good deal for PillPack and probably showed the digital health community that those sorts of exits are possible.\u003c/p>\n\u003cfigure id=\"attachment_437838\" class=\"wp-caption alignright\" style=\"max-width: 589px\">\u003cimg class=\"size-full wp-image-437838\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/12/chrissyfarrphoto1.png\" alt=\"\" width=\"589\" height=\"428\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1.png 589w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-160x116.png 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-240x174.png 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-375x272.png 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/12/chrissyfarrphoto1-520x378.png 520w\" sizes=\"(max-width: 589px) 100vw, 589px\">\u003cfigcaption class=\"wp-caption-text\">CNBC's Chrissy Farr. \u003ccite>(CNBC)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Around the same time, Amazon also \u003ca href=\"https://www.cnbc.com/2018/12/14/amazon-explored-medical-diagnostics-was-in-talks-to-buy-confer-health.html\" target=\"_blank\" rel=\"noopener\">looked at Confer Health\u003c/a>, a company in the at-home medical diagnostic space. That's interesting, because it speaks to a strategy that goes deeper than just drug delivery.\u003c/p>\n\u003cp>Where Amazon could potentially go is this: Imagine you're experiencing symptoms for strep throat, and you \u003ca href=\"https://thenextweb.com/artificial-intelligence/2018/10/15/amazons-new-patent-will-allow-alexa-to-detect-your-illness/\" target=\"_blank\" rel=\"noopener\">talk to your Amazon Alexa device\u003c/a>, and there's an AI system, or a real physician, even, that speaks to you and recommends you get tested. A courier comes to your home with a portable device from which you run a sample and you get a result immediately. Or from there the same physician ships you a prescription. And that could all be done in a couple hours.\u003c/p>\n\u003cp>Or imagine an elderly person who potentially has the flu and might have to go to a physical clinic, and then from there bring a prescription to a Walgreens. That is an annoying user experience but also think about how many people they could infect with the flu on the way to the clinic and pharmacy. So I think there could be some basic things Amazon can do with diagnosing illness in the home. And if they can do that coupled with prescription drug delivery, that's a very \u003ca href=\"https://www.cnbc.com/2018/12/17/amazon-vision-future-health-care.html\" target=\"_blank\" rel=\"noopener\">different experience of health care\u003c/a> than we've seen.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>...and Apple\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The whole Apple health care rollout was big, and I would probably pinpoint the electro-cardiogram\u003ca href=\"https://www.cnbc.com/video/2018/12/05/apple-watch-ecg-sensor-review.html\" target=\"_blank\" rel=\"noopener\"> being introduced on the Apple Watch\u003c/a> as the biggest story from what they've done this year. It got Apple into a more regulated medical device space; I don't know if they are now a medical device company, but they're certainly a consumer tech company that makes medical products.\u003c/p>\n\u003cp>It’s an important story because it sort of changed the game around proactive health monitoring. They were looking specifically for people who didn't even know they have a type of arrhythmia called atrial fibrillation.\u003c/p>\n\u003cp>That's controversial, as there are doctors who think this is bad news, because it's going to lead to a lot of anxious people thinking there's something wrong when there isn't. I've been hearing from physicians who already have patients with normal results reach out and ask, ‘Hey, does this look right?’ Doctors are already overloaded and don't want to be managing an influx of healthy people. So Apple's got to really make sure the false positive rate isn't too high, and they need to be transparent about what this ECG means.\u003c/p>\n\u003cp>But I think this is probably the beginning of what Apple's overall strategy is when it comes to bringing health monitoring to the watch.\u003c/p>\n\u003cp>\u003cstrong>... and, uh, Facebook? \u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">This year even Facebook was trying to get into digital health. At one point it hired some people in the medical community to \u003c/span>\u003ca href=\"https://www.cnbc.com/2018/04/05/facebook-building-8-explored-data-sharing-agreement-with-hospitals.html\">\u003cspan style=\"font-weight: 400\">approach top hospitals\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> about a patient data-sharing agreement. Facebook wanted to see if it could match up the health system's user data with its own data to see if patients might need special care\u003c/span>\u003cspan style=\"font-weight: 400\">. That seemed to be have fallen apart out of general fears of data privacy surrounding the company.\u003c/span>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe src=\"https://player.cnbc.com/p/gZWlPC/cnbc_global?playertype=synd&byGuid=7000011603&size=530_298\" width=\"530\" height=\"298\" scrolling=\"yes\" class=\"iframe-class\" frameborder=\"0\">\u003c/iframe>\u003c/p>\n\u003cp>\u003cstrong>'Real Money' for Digital Health Startup \u003c/strong>\u003c/p>\n\u003cp>Pharmaceutical giant \u003ca href=\"https://www.cnbc.com/2018/02/15/roche-buying-flatiron-health-backed-by-alphabet.html\" target=\"_blank\" rel=\"noopener\">Roche bought Flatiron Health\u003c/a> in February for just over $2 billion. I think that was a big deal because it was a pharmaceutical company spending real money on a digital health startup. I think it shows that there can be real successes in the space. It's also a thumbs-up for precision medicine; Flatiron was basically creating a medical record system that was popular with oncologists, and then using data to figure out better treatments for those patients.\u003c/p>\n\u003cp>\u003cstrong>Watson Stumbles, or: \u003ca href=\"https://www.youtube.com/watch?v=P18EdAKuC1U\" target=\"_blank\" rel=\"noopener\">Health Care Ain't 'Jeopardy'\u003c/a>\u003c/strong>\u003c/p>\n\u003cp>In talking with folks familiar with the IBM Watson strategy, I think where they may have gone wrong is in building this AI system that was \u003ca href=\"https://www.statnews.com/2017/09/05/watson-ibm-cancer/\" target=\"_blank\" rel=\"noopener\">trained using top U.S. oncologists\u003c/a>, and then they tried to sell it to other big cancer centers. So if you're an oncologist at one of these other places, why wouldn't you just say, \"Well, I'm as good as these physicians at Memorial Sloan Kettering?\"\u003c/p>\n\u003cp>So I think they tried to sell into the wrong market because they thought they could get these really big contracts, and what they probably should have done is figured out a much cheaper system that they could have sold to smaller health systems; you can see why some of these local offices and physicians who don't have the same resources as Sloan Kettering would find it beneficial to get information on what Sloan Kettering would do in any given situation.\u003c/p>\n\u003cp>\u003cstrong>It's the Outcomes, Stupid\u003c/strong>\u003c/p>\n\u003cp>For a long time you didn't really see digital health companies invest in outcomes, because I think they wanted to be viewed more as technology companies. But there were a few -- Livongo, Omada Health, Propeller Health -- that were always sort of forward-leaning and did do that investment from the outset, and I think those companies are the ones that are doing better now.\u003c/p>\n\u003cp>Propeller Health was \u003ca href=\"https://www.jsonline.com/story/money/business/health-care/2018/12/03/propeller-health-madison-acquired-225-million/2192097002/\" target=\"_blank\" rel=\"noopener\">sold\u003c/a> this year to ResMed, for instance. I think it was because it had that focus on outcomes.\u003c/p>\n\u003cp>That model is especially important for the influx of companies trying to sell into the employer space, because in order to tell the difference between them, there has been a lot of questioning around: \"Is this actually making my population healthier? Is it really going to save me money?\"\u003c/p>\n\u003cp>In general I think the companies that are coming up this year have kind of learned from the mistakes of some of their predecessors and are positioning themselves with a bit more humility, and in many cases doing the right thing. They don't describe themselves, when pitching potential customers, as startups. They take themselves more seriously now, and they want to be viewed as new health care companies and businesses.\u003c/p>\n\u003cp>It just speaks to a general sort of growing-up.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"disqusTitle": "No Cash, No Organ Transplant: Patients Must Prove They Can Pay Enormous Bills",
"title": "No Cash, No Organ Transplant: Patients Must Prove They Can Pay Enormous Bills",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>When Patrick Mannion heard about the Michigan woman denied a heart transplant because she couldn’t afford the anti-rejection drugs, he knew what she was up against.\u003c/p>\n\u003cfigure id=\"attachment_445781\" class=\"wp-caption alignright\" style=\"max-width: 270px\">\u003cimg class=\"wp-image-445781 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/12/transplant_costs1.jpg\" alt=\"\" width=\"270\" height=\"405\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/12/transplant_costs1.jpg 270w, https://ww2.kqed.org/app/uploads/sites/13/2018/12/transplant_costs1-160x240.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/12/transplant_costs1-240x360.jpg 240w\" sizes=\"(max-width: 270px) 100vw, 270px\">\u003cfigcaption class=\"wp-caption-text\">Patrick Mannion received a double-lung transplant in May 2017 after being diagnosed with idiopathic pulmonary fibrosis, a progressive, life-threatening lung disease. Through a transplant fundraising organization, HelpHopeLive, he has raised nearly $115,000, twice the original goal to help pay expenses that insurance didn’t cover, including copays for costly anti-rejection drugs. \u003ccite>(Courtesy of Patrick Mannion)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>On social media posts of a letter that \u003ca href=\"https://twitter.com/Ocasio2018/status/1066351594843844608\">went viral\u003c/a> last month, Hedda Martin, 60, of Grand Rapids, was informed that she was not a candidate for a heart transplant because of her finances. It recommended “a fundraising effort of $10,000.”\u003c/p>\n\u003cp>Patrick Mannion received a double-lung transplant in May 2017 after being diagnosed with idiopathic pulmonary fibrosis, a progressive, life-threatening lung disease. Through a transplant fundraising organization, HelpHopeLive, he has raised nearly $115,000, twice the original goal to help pay expenses that insurance didn’t cover, including copays for costly anti-rejection drugs.\u003c/p>\n\u003cp>Two years ago, Mannion, of Oxford, Conn., learned he needed a double-lung transplant after contracting idiopathic pulmonary fibrosis, a progressive, fatal disease. From the start, hospital officials told him to set aside $30,000 in a separate bank account to cover the costs.\u003c/p>\n\u003cp>Mannion, 59, who received his new lungs in May 2017, reflected: “Here you are, you need a heart — that’s a tough road for any person,” he said. “And then for that person to have to be a fundraiser?”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Martin’s case sparked outrage over a transplant system that links access to a lifesaving treatment to finances. But requiring proof of payment for organ transplants and post-operative care is common, transplant experts say.\u003c/p>\n\u003cp>“It happens every day,” said Arthur Caplan, a bioethicist at the New York University Langone Medical Center. “You get what I call a ‘wallet biopsy.’”\u003c/p>\n\u003cp>Virtually all of the nation’s more than 250 transplant centers, which refer patients to a \u003ca href=\"https://unos.org/\">single national registry\u003c/a>, require patients to verify how they will cover bills that \u003ca href=\"http://www.milliman.com/uploadedFiles/insight/2017/2017-Transplant-Report.pdf\">can total\u003c/a> $400,000 for a kidney transplant or $1.3 million for a heart, plus monthly costs that \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520417/\">average $2,500\u003c/a> for anti-rejection drugs that must be taken for life, Caplan said. Coverage for the drugs is more scattershot than for the operation itself, even though transplanted organs will not last without the medicine.\u003c/p>\n\u003cp>For Martin, the social media attention helped. Within days, she had raised more than $30,000 through a GoFundMe account, and officials at Spectrum Health confirmed she was added to the transplant waiting list.\u003c/p>\n\u003cp>\u003ca href=\"https://newsroom.spectrumhealth.org/fyi/\">In a statement\u003c/a>, officials there defended their position, saying that financial resources, along with physical health and social well-being, are among crucial factors to consider.\u003c/p>\n\u003cp>“The ability to pay for post-transplant care and life-long immunosuppression medications is essential to increase the likelihood of a successful transplant and longevity of the transplant recipient,” officials wrote.\u003c/p>\n\u003cp>In the most pragmatic light, that makes sense. More than 114,000 people are waiting for organs in the U.S. and \u003ca href=\"https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/\">fewer than 35,000\u003c/a> organs were transplanted last year, according to the United Network for Organ Sharing, or UNOS. Transplant centers want to make sure donated organs aren’t wasted.\u003c/p>\n\u003cp>“If you’re receiving a lifesaving organ, you have to be able to afford it,” said Kelly Green, executive director of HelpHopeLive, the Pennsylvania organization that has helped Mannion.\u003c/p>\n\u003cp>His friends and family have rallied, flocking to fundraisers that ranged from hair salon cut-a-thons to golf tournaments, raising nearly $115,000 so far for transplant-related care.\u003c/p>\n\u003cp>Allowing financial factors to determine who gets a spot on the waiting list strikes many as unfair, Caplan said.\u003c/p>\n\u003cp>“It may be a source of anger, because when we’re looking for organs, we don’t like to think that they go to the rich,” he said. “In reality, it’s largely true.”\u003c/p>\n\u003cp>Nearly half of the patients waiting for organs in the U.S. have private health insurance, UNOS data show. The rest are largely covered by the government, including Medicaid, the federal program for the disabled and poor, and Medicare.\u003c/p>\n\u003cp>Medicare also \u003ca href=\"https://www.medicareinteractive.org/get-answers/medicare-health-coverage-options/medicare-and-end-stage-renal-disease-esrd/esrd-medicare-basics\">covers\u003c/a> kidney transplants for all patients with end-stage renal disease. But, there’s a catch. While the cost of a kidney transplant is covered for people younger than 65, the program halts payment for anti-rejection drugs after 36 months. That leaves many patients facing sudden bills, said Tonya Saffer, vice president of health policy for the National Kidney Foundation.\u003c/p>\n\u003cp>Legislation that would extend Medicare coverage for those drugs has been stalled for years.\u003c/p>\n\u003cp>For Alex Reed, 28, of Pittsburgh, who received a kidney transplant three years ago, coverage for the dozen medications he takes ended Nov. 30. His mother, Bobbie Reed, 62, has been scrambling for a solution.\u003c/p>\n\u003cp>“We can’t pick up those costs,” said Reed, whose family runs an independent insurance firm. “It would be at least $3,000 or $4,000 a month.”\u003c/p>\n\u003cp>Prices for the drugs, which include powerful medications that prevent the body from rejecting the organs, have been falling in recent years as more generic versions have come to market, Saffer said.\u003c/p>\n\u003cp>But “the cost can still be hard on the budget,” she added.\u003c/p>\n\u003cp>It’s been a struggle for decades to get transplants and associated expenses covered by insurance, said Dr. Maryl Johnson, a heart failure and transplant cardiologist at the University of Wisconsin School of Medicine and Public Health.\u003c/p>\n\u003cp>“It’s unusual that there’s 100 percent coverage for everything,” said Johnson, a leader in the field for 30 years.\u003c/p>\n\u003cp>GoFundMe efforts have become a popular way for sick people to raise money. About a third of the campaigns on the site target medical needs, the company said.\u003c/p>\n\u003cp>But when patients need to raise money, they should use fundraising organizations specifically aimed at those costs, transplant experts say, including \u003ca href=\"https://helphopelive.org/\">HelpHopeLive\u003c/a>, the \u003ca href=\"https://transplants.org/\">National Foundation for Transplants\u003c/a> and the \u003ca href=\"https://www.americantransplantfoundation.org/programs/pap/\">American Transplant Foundation.\u003c/a>\u003c/p>\n\u003cp>There’s no guarantee funds generated through such general sites such as GoFundMe will be used for the intended purpose. In addition, the money likely will be regarded as taxable income that could jeopardize other resources, said Michelle Gilchrist, president and chief executive for the National Foundation for Transplants.\u003c/p>\n\u003cp>Her group, which helps about 4,000 patients a year, has raised $82 million for transplant costs since 1983, she said. Such efforts usually involve a huge public-relations push. Still, 20 percent of the patients who turn to NFT each year fail to raise the needed funds, Gilchrist said.\u003c/p>\n\u003cp>In those cases, the patients don’t get the organs they need. “My concern is that health care should be accessible for everyone,” she said, adding: “Ten thousand dollars is a lot to someone who doesn’t have it.”\u003c/p>\n\u003cp>Every transplant center in the U.S. has a team of social workers and financial coordinators who help patients negotiate the gaps in their care. Lara Tushla, a licensed clinical social worker with the Rush University transplant program in Chicago, monitors about 2,000 transplant patients. She urges potential patients to think realistically about the costs they’ll face.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“The pharmacy will not hand over a bag full of pills without a bag full of money,” she said. “They will not bill you. They want the copays before they give you the medication.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>When Patrick Mannion heard about the Michigan woman denied a heart transplant because she couldn’t afford the anti-rejection drugs, he knew what she was up against.\u003c/p>\n\u003cfigure id=\"attachment_445781\" class=\"wp-caption alignright\" style=\"max-width: 270px\">\u003cimg class=\"wp-image-445781 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/12/transplant_costs1.jpg\" alt=\"\" width=\"270\" height=\"405\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/12/transplant_costs1.jpg 270w, https://ww2.kqed.org/app/uploads/sites/13/2018/12/transplant_costs1-160x240.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/12/transplant_costs1-240x360.jpg 240w\" sizes=\"(max-width: 270px) 100vw, 270px\">\u003cfigcaption class=\"wp-caption-text\">Patrick Mannion received a double-lung transplant in May 2017 after being diagnosed with idiopathic pulmonary fibrosis, a progressive, life-threatening lung disease. Through a transplant fundraising organization, HelpHopeLive, he has raised nearly $115,000, twice the original goal to help pay expenses that insurance didn’t cover, including copays for costly anti-rejection drugs. \u003ccite>(Courtesy of Patrick Mannion)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>On social media posts of a letter that \u003ca href=\"https://twitter.com/Ocasio2018/status/1066351594843844608\">went viral\u003c/a> last month, Hedda Martin, 60, of Grand Rapids, was informed that she was not a candidate for a heart transplant because of her finances. It recommended “a fundraising effort of $10,000.”\u003c/p>\n\u003cp>Patrick Mannion received a double-lung transplant in May 2017 after being diagnosed with idiopathic pulmonary fibrosis, a progressive, life-threatening lung disease. Through a transplant fundraising organization, HelpHopeLive, he has raised nearly $115,000, twice the original goal to help pay expenses that insurance didn’t cover, including copays for costly anti-rejection drugs.\u003c/p>\n\u003cp>Two years ago, Mannion, of Oxford, Conn., learned he needed a double-lung transplant after contracting idiopathic pulmonary fibrosis, a progressive, fatal disease. From the start, hospital officials told him to set aside $30,000 in a separate bank account to cover the costs.\u003c/p>\n\u003cp>Mannion, 59, who received his new lungs in May 2017, reflected: “Here you are, you need a heart — that’s a tough road for any person,” he said. “And then for that person to have to be a fundraiser?”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Martin’s case sparked outrage over a transplant system that links access to a lifesaving treatment to finances. But requiring proof of payment for organ transplants and post-operative care is common, transplant experts say.\u003c/p>\n\u003cp>“It happens every day,” said Arthur Caplan, a bioethicist at the New York University Langone Medical Center. “You get what I call a ‘wallet biopsy.’”\u003c/p>\n\u003cp>Virtually all of the nation’s more than 250 transplant centers, which refer patients to a \u003ca href=\"https://unos.org/\">single national registry\u003c/a>, require patients to verify how they will cover bills that \u003ca href=\"http://www.milliman.com/uploadedFiles/insight/2017/2017-Transplant-Report.pdf\">can total\u003c/a> $400,000 for a kidney transplant or $1.3 million for a heart, plus monthly costs that \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520417/\">average $2,500\u003c/a> for anti-rejection drugs that must be taken for life, Caplan said. Coverage for the drugs is more scattershot than for the operation itself, even though transplanted organs will not last without the medicine.\u003c/p>\n\u003cp>For Martin, the social media attention helped. Within days, she had raised more than $30,000 through a GoFundMe account, and officials at Spectrum Health confirmed she was added to the transplant waiting list.\u003c/p>\n\u003cp>\u003ca href=\"https://newsroom.spectrumhealth.org/fyi/\">In a statement\u003c/a>, officials there defended their position, saying that financial resources, along with physical health and social well-being, are among crucial factors to consider.\u003c/p>\n\u003cp>“The ability to pay for post-transplant care and life-long immunosuppression medications is essential to increase the likelihood of a successful transplant and longevity of the transplant recipient,” officials wrote.\u003c/p>\n\u003cp>In the most pragmatic light, that makes sense. More than 114,000 people are waiting for organs in the U.S. and \u003ca href=\"https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/\">fewer than 35,000\u003c/a> organs were transplanted last year, according to the United Network for Organ Sharing, or UNOS. Transplant centers want to make sure donated organs aren’t wasted.\u003c/p>\n\u003cp>“If you’re receiving a lifesaving organ, you have to be able to afford it,” said Kelly Green, executive director of HelpHopeLive, the Pennsylvania organization that has helped Mannion.\u003c/p>\n\u003cp>His friends and family have rallied, flocking to fundraisers that ranged from hair salon cut-a-thons to golf tournaments, raising nearly $115,000 so far for transplant-related care.\u003c/p>\n\u003cp>Allowing financial factors to determine who gets a spot on the waiting list strikes many as unfair, Caplan said.\u003c/p>\n\u003cp>“It may be a source of anger, because when we’re looking for organs, we don’t like to think that they go to the rich,” he said. “In reality, it’s largely true.”\u003c/p>\n\u003cp>Nearly half of the patients waiting for organs in the U.S. have private health insurance, UNOS data show. The rest are largely covered by the government, including Medicaid, the federal program for the disabled and poor, and Medicare.\u003c/p>\n\u003cp>Medicare also \u003ca href=\"https://www.medicareinteractive.org/get-answers/medicare-health-coverage-options/medicare-and-end-stage-renal-disease-esrd/esrd-medicare-basics\">covers\u003c/a> kidney transplants for all patients with end-stage renal disease. But, there’s a catch. While the cost of a kidney transplant is covered for people younger than 65, the program halts payment for anti-rejection drugs after 36 months. That leaves many patients facing sudden bills, said Tonya Saffer, vice president of health policy for the National Kidney Foundation.\u003c/p>\n\u003cp>Legislation that would extend Medicare coverage for those drugs has been stalled for years.\u003c/p>\n\u003cp>For Alex Reed, 28, of Pittsburgh, who received a kidney transplant three years ago, coverage for the dozen medications he takes ended Nov. 30. His mother, Bobbie Reed, 62, has been scrambling for a solution.\u003c/p>\n\u003cp>“We can’t pick up those costs,” said Reed, whose family runs an independent insurance firm. “It would be at least $3,000 or $4,000 a month.”\u003c/p>\n\u003cp>Prices for the drugs, which include powerful medications that prevent the body from rejecting the organs, have been falling in recent years as more generic versions have come to market, Saffer said.\u003c/p>\n\u003cp>But “the cost can still be hard on the budget,” she added.\u003c/p>\n\u003cp>It’s been a struggle for decades to get transplants and associated expenses covered by insurance, said Dr. Maryl Johnson, a heart failure and transplant cardiologist at the University of Wisconsin School of Medicine and Public Health.\u003c/p>\n\u003cp>“It’s unusual that there’s 100 percent coverage for everything,” said Johnson, a leader in the field for 30 years.\u003c/p>\n\u003cp>GoFundMe efforts have become a popular way for sick people to raise money. About a third of the campaigns on the site target medical needs, the company said.\u003c/p>\n\u003cp>But when patients need to raise money, they should use fundraising organizations specifically aimed at those costs, transplant experts say, including \u003ca href=\"https://helphopelive.org/\">HelpHopeLive\u003c/a>, the \u003ca href=\"https://transplants.org/\">National Foundation for Transplants\u003c/a> and the \u003ca href=\"https://www.americantransplantfoundation.org/programs/pap/\">American Transplant Foundation.\u003c/a>\u003c/p>\n\u003cp>There’s no guarantee funds generated through such general sites such as GoFundMe will be used for the intended purpose. In addition, the money likely will be regarded as taxable income that could jeopardize other resources, said Michelle Gilchrist, president and chief executive for the National Foundation for Transplants.\u003c/p>\n\u003cp>Her group, which helps about 4,000 patients a year, has raised $82 million for transplant costs since 1983, she said. Such efforts usually involve a huge public-relations push. Still, 20 percent of the patients who turn to NFT each year fail to raise the needed funds, Gilchrist said.\u003c/p>\n\u003cp>In those cases, the patients don’t get the organs they need. “My concern is that health care should be accessible for everyone,” she said, adding: “Ten thousand dollars is a lot to someone who doesn’t have it.”\u003c/p>\n\u003cp>Every transplant center in the U.S. has a team of social workers and financial coordinators who help patients negotiate the gaps in their care. Lara Tushla, a licensed clinical social worker with the Rush University transplant program in Chicago, monitors about 2,000 transplant patients. She urges potential patients to think realistically about the costs they’ll face.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"disqusTitle": "If You're Anxious, Play Tetris, Study Says",
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"content": "\u003cp>If you've ever played Tetris — whether it was at an old-school Gameboy, or just on your iPhone — then you know: It's 8-bit enchantment.\u003c/p>\n\u003cp>\"Years of my life were lost disappearing into a game of Tetris on my Nintendo system,\" says \u003ca href=\"http://www.psychology.ucr.edu/faculty/sweeny/index.html\">Kate Sweeny\u003c/a>, a psychologist at the University of California, Riverside.\u003c/p>\n\u003cp>But maybe the hours she spent lining those little blocks (\"tetriminos\") into perfect rows of 10 weren't a total waste. Her latest research suggests that Tetris can ease us through periods of anxiety by getting us to a blissfully engrossed mental state that\u003ca href=\"https://www.npr.org/2015/04/17/399806632/what-makes-a-life-worth-living\"> psychologists call \"flow.\"\u003c/a>\u003c/p>\n\u003cp>\"The state of flow is one where you're completely absorbed or engaged in some kind of activity,\" Sweeny explains. \"You lose your self-awareness, and time is just flying by.\"\u003c/p>\n\u003cp>So say, you're waiting for a date to text you back, or for your LSAT scores, or — as much of the country will be doing on Tuesday — waiting for the election results. You may be tempted to think obsessively about the possibilities. Instead, Sweeny's research suggests, you may want to turn off Twitter alerts, and try distracting yourself with a brain game.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The \u003ca href=\"http://psycnet.apa.org/doiLanding?doi=10.1037%2Femo0000479\">study\u003c/a>, published recently in the journal \u003cem>Emotion\u003c/em>, focused on people who were waiting for uncertain, potentially life-altering news, and it found that a flow-inducing game of Tetris could help them cope.\u003c/p>\n\u003cp>Sweeny and her collaborators gathered a group of more than 300 college students and told them their peers would be evaluating how attractive they were. \"I know, it's kind of cruel, but we found it's a really effective way to get people stressed out,\" Sweeny says. While the participants awaited their attractiveness scores, the researchers had them play Tetris.\u003c/p>\n\u003cp>Some played a painfully slow, easy version of the game — which bored them. Some played an extremely challenging, fast version — which frustrated them. And everyone else played the classic version, which adapts to each player's individual skill level and gets them into that state of flow.\u003c/p>\n\u003cp>In the end, everyone experienced a degree of worry. But the third group reported slightly higher levels of positive emotions (on average, about a quarter of a point higher on a five-point scale) and slightly lower levels of negative emotions (half a point lower on a five-point scale).\u003c/p>\n\u003cp>\"It wasn't a huge difference, but we think it's noticeable,\" Sweeny says. \"And over time, it can add up.\"\u003c/p>\n\u003cp>The results line up with a growing body of research showing that regular doses of flow can boost our mood and help us manage stress. And although playing Tetris is a reliable way to achieve flow, other absorbing video games would work too. And if you'd rather put down your digital device, no worries. Games are by no means the only way.\u003c/p>\n\u003cp>\"Think of the activity that grabs your attention and doesn't let it go,\" says \u003ca href=\"https://dunn.psych.ubc.ca/\">Elizabeth Dunn\u003c/a>, a psychologist at the University of British Columbia who studies happiness. \"For me, it's mountain biking.\" For you, it could be chess or ballet.\u003c/p>\n\u003cp>\"I can't say I found this study particularly surprising at all,\" says Dunn, who wasn't involved in the research. \"Mostly because, based on previous research, it's hard to find a situation where the experience of flow isn't a good thing.\"\u003c/p>\n\u003cp>What the new research does suggest, she says, \"is that even in tough moments, we should push ourselves to do something challenging to get us out of the moment.\"\u003c/p>\n\u003cp>\"Go mountain biking, or rock climbing or have games night with your friends where you play really challenging games,\" she says.\u003c/p>\n\u003cp>And if all else fails, you can always try Tetris.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Maanvi Singh is a freelance writer and a regular contributor to NPR. You can find her on Twitter: \u003c/em>\u003ca href=\"https://twitter.com/maanvisings\">@maanvisings. \u003c/a>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Can%27t+Stop+Worrying%3F+Try+Tetris+To+Ease+Your+Mind&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>If you've ever played Tetris — whether it was at an old-school Gameboy, or just on your iPhone — then you know: It's 8-bit enchantment.\u003c/p>\n\u003cp>\"Years of my life were lost disappearing into a game of Tetris on my Nintendo system,\" says \u003ca href=\"http://www.psychology.ucr.edu/faculty/sweeny/index.html\">Kate Sweeny\u003c/a>, a psychologist at the University of California, Riverside.\u003c/p>\n\u003cp>But maybe the hours she spent lining those little blocks (\"tetriminos\") into perfect rows of 10 weren't a total waste. Her latest research suggests that Tetris can ease us through periods of anxiety by getting us to a blissfully engrossed mental state that\u003ca href=\"https://www.npr.org/2015/04/17/399806632/what-makes-a-life-worth-living\"> psychologists call \"flow.\"\u003c/a>\u003c/p>\n\u003cp>\"The state of flow is one where you're completely absorbed or engaged in some kind of activity,\" Sweeny explains. \"You lose your self-awareness, and time is just flying by.\"\u003c/p>\n\u003cp>So say, you're waiting for a date to text you back, or for your LSAT scores, or — as much of the country will be doing on Tuesday — waiting for the election results. You may be tempted to think obsessively about the possibilities. Instead, Sweeny's research suggests, you may want to turn off Twitter alerts, and try distracting yourself with a brain game.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The \u003ca href=\"http://psycnet.apa.org/doiLanding?doi=10.1037%2Femo0000479\">study\u003c/a>, published recently in the journal \u003cem>Emotion\u003c/em>, focused on people who were waiting for uncertain, potentially life-altering news, and it found that a flow-inducing game of Tetris could help them cope.\u003c/p>\n\u003cp>Sweeny and her collaborators gathered a group of more than 300 college students and told them their peers would be evaluating how attractive they were. \"I know, it's kind of cruel, but we found it's a really effective way to get people stressed out,\" Sweeny says. While the participants awaited their attractiveness scores, the researchers had them play Tetris.\u003c/p>\n\u003cp>Some played a painfully slow, easy version of the game — which bored them. Some played an extremely challenging, fast version — which frustrated them. And everyone else played the classic version, which adapts to each player's individual skill level and gets them into that state of flow.\u003c/p>\n\u003cp>In the end, everyone experienced a degree of worry. But the third group reported slightly higher levels of positive emotions (on average, about a quarter of a point higher on a five-point scale) and slightly lower levels of negative emotions (half a point lower on a five-point scale).\u003c/p>\n\u003cp>\"It wasn't a huge difference, but we think it's noticeable,\" Sweeny says. \"And over time, it can add up.\"\u003c/p>\n\u003cp>The results line up with a growing body of research showing that regular doses of flow can boost our mood and help us manage stress. And although playing Tetris is a reliable way to achieve flow, other absorbing video games would work too. And if you'd rather put down your digital device, no worries. Games are by no means the only way.\u003c/p>\n\u003cp>\"Think of the activity that grabs your attention and doesn't let it go,\" says \u003ca href=\"https://dunn.psych.ubc.ca/\">Elizabeth Dunn\u003c/a>, a psychologist at the University of British Columbia who studies happiness. \"For me, it's mountain biking.\" For you, it could be chess or ballet.\u003c/p>\n\u003cp>\"I can't say I found this study particularly surprising at all,\" says Dunn, who wasn't involved in the research. \"Mostly because, based on previous research, it's hard to find a situation where the experience of flow isn't a good thing.\"\u003c/p>\n\u003cp>What the new research does suggest, she says, \"is that even in tough moments, we should push ourselves to do something challenging to get us out of the moment.\"\u003c/p>\n\u003cp>\"Go mountain biking, or rock climbing or have games night with your friends where you play really challenging games,\" she says.\u003c/p>\n\u003cp>And if all else fails, you can always try Tetris.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Maanvi Singh is a freelance writer and a regular contributor to NPR. You can find her on Twitter: \u003c/em>\u003ca href=\"https://twitter.com/maanvisings\">@maanvisings. \u003c/a>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Can%27t+Stop+Worrying%3F+Try+Tetris+To+Ease+Your+Mind&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Doctors Test Bacterial Smear After C-sections To Bolster Babies' Health",
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"content": "\u003cp>Danielle Vukadinovich is sitting up in a hospital bed at the Inova Women's Hospital in Falls Church, Va., waiting to give birth.\u003c/p>\n\u003cp>\"I feel good, I'm excited!\" says Vukadinovich, 35, of Annandale, Va., \"Nervous, but good!\"[contextly_sidebar id=\"FEjJfJVXw64VNWTIkBjmTrT87lKdBgJO\"]\u003c/p>\n\u003cp>Vukadinovich is getting a \u003ca href=\"https://medlineplus.gov/cesareansection.html\" target=\"_blank\" rel=\"noopener\">cesarean section\u003c/a> today. It's the second time for her — she underwent the surgical procedure 19 months ago when her twins were born.\u003c/p>\n\u003cp>This time Danielle wants to try something different, something that might sound strange. As soon as her daughter is born, a doctor will wipe bacteria fluid from Danielle's birth canal all over her baby's body.\u003c/p>\n\u003cp>\"I haven't told many people about this yet,\" Vukadinovich says, laughing. \"I understand why people would be like, 'Oh my gosh. That's so weird.' But I don't think it's yucky. It's normal. It's natural really.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The procedure, known as \"\u003ca href=\"https://www.mayoclinic.org/healthy-lifestyle/infant-and-toddler-health/expert-answers/vaginal-seeding/faq-20380881\" target=\"_blank\" rel=\"noopener\">vaginal seeding\u003c/a>,\" is designed to help babies develop healthy microbiomes — the collection of friendly bacteria that inhabit every person's body. Some people call it a \"bacterial baptism.\"\u003c/p>\n\u003cp>\"It's a little bit like that baby's first dunk,\" says \u003ca href=\"https://www.inova.org/indirectory/clinicaltrials.aspx?design=true&dirId=1&LoadCategory=ITMI&LoadSubCategory=Microbiome&memberID=280\" target=\"_blank\" rel=\"noopener\">Shira Levy\u003c/a>, the microbiome research manager at the Inova hospital. \"That's their first religious experience. You know, they get the water and that changes their spirituality.\u003c/p>\n\u003cp>\"In this case, they get the bacteria and that changes their microbiome,\" Levy says. \"This is their first microbiome experience.\"\u003c/p>\n\u003cp>The procedure was developed in response to the sharp rise in C-section births in recent years. That increase has been accompanied by \u003ca href=\"https://www.npr.org/sections/health-shots/2015/09/30/444746094/missing-microbes-provide-clues-about-asthma-risk\" target=\"_blank\" rel=\"noopener\">more cases of asthma\u003c/a>, allergies, eczema, obesity, and other diseases.\u003c/p>\n\u003cp>The theory is that the rise in these diseases might be happening, in part, because babies aren't getting exposed to their mother's microbes the way they would if they were passing naturally through the birth canal.[contextly_sidebar id=\"0AllfLEduBOKAavkhBROexZnBFbtKljt\"]\u003c/p>\n\u003cp>\"We think that one of the reasons that babies born by C-section are at increased risk for these diseases is because they don't receive that first beneficial exposure to their mother's vaginal microbiome,\" says \u003ca href=\"https://www.inova.org/Physician_Directory/Suchitra-K-Hourigan-MD/824530\" target=\"_blank\" rel=\"noopener\">Suchitra Hourigan\u003c/a>, a pediatric gastroenterologist at Inova.\u003c/p>\n\u003cp>One very small study \u003ca href=\"https://www.npr.org/sections/health-shots/2016/02/01/464905786/researchers-test-microbe-wipe-to-promote-babies-health-after-c-sections\" target=\"_blank\" rel=\"noopener\">indicated \u003c/a>that swabbing C-section babies with their mother's microbes immediately after birth could make their microbiomes develop more like those of babies born vaginally.\u003c/p>\n\u003cp>But the appeal of vaginal seeding has outpaced evidence that it is safe and effective.\u003c/p>\n\u003cp>Some couples have started trying vaginal seeding on their own. Vukadinovich jokes that she considered doing it herself. After all, she says, she's a nurse and her husband is a high school biology teacher.\u003c/p>\n\u003cp>\"I even told my mom: 'Nobody has to know. My husband would help me out,' \" she says, laughing. \"But I try not to take unnecessary risks.\"\u003c/p>\n\u003cp>Vukadinovich knows the procedure could be risky. Babies could be inadvertently exposed to disease-causing microbes, such as herpes virus or streptococcus bacteria.\u003c/p>\n\u003cp>In fact, medical groups such as the American College of Obstetrics and Gynecology \u003ca href=\"https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Obstetric-Practice/Vaginal-Seeding\" target=\"_blank\" rel=\"noopener\">warn\u003c/a> women against doing this. \"While there are data to suggest that there may be some scientific plausibility to the concept, it is not without significant risks,\" says \u003ca href=\"http://newsroom.ucla.edu/experts/preview/578561302cfac209100154a4/\" target=\"_blank\" rel=\"noopener\">Neil Silverman\u003c/a>, a clinical professor of obstetrics and gynecology at the UCLA School of Medicine, who represents ACOG. The group notes that mothers also transfer microbes to their newborns through skin-to-skin contact and breastfeeding.\u003c/p>\n\u003cp>So Vukadinovich was thrilled when she found out she could be part of the first \u003ca href=\"https://clinicaltrials.gov/ct2/show/NCT03298334?term=vaginal+seeding&rank=1\" target=\"_blank\" rel=\"noopener\">study\u003c/a> the Food and Drug Administration is allowing to rigorously test whether the procedure is safe and helps improve babies' health.[contextly_sidebar id=\"kMHzgUs0dutTuVHV7G0EJpefrLt2hB8h\"]\u003c/p>\n\u003cp>\"Who knows what's going to happen with the results? But if it does show something positive, I just think that would be great for kids and parents,\" she says.\u003c/p>\n\u003cp>Hourigan, who's helping lead the study, agrees. \"Just to be able to reduce one risk factor for obesity, especially when there are such high [C-section rates] in the U.S., would be huge,\" she says.\u003c/p>\n\u003cp>In the study, half of the babies will get swabbed with their mother's microbes; half will get swabbed with a sterile solution. All of the mothers will be carefully screened for dangerous infections.\u003c/p>\n\u003cp>All of the babies will then be followed for three years to see if they become obese or develop other health problems. A \u003ca href=\"https://clinicaltrials.gov/ct2/show/NCT03567707?term=vaginal+seeding&rank=2\" target=\"_blank\" rel=\"noopener\">similar study\u003c/a> is starting at the Icahn School of Medicine at Mount Sinai in New York City.\u003c/p>\n\u003cp>Vukadinovich agreed to let an NPR reporter and photographer observe her baby's birth and the swabbing. It's the first time journalists have been allowed to watch a baby go through the study.\u003c/p>\n\u003cp>\u003cstrong>Evelyn Marie is Born\u003c/strong>\u003c/p>\n\u003cp>As the nurses wheel Vukadinovich into the operating room, Hourigan, Levy and Dr. Varsha Deopujari follow. Deopujari, the study's clinical manager, will do the actual swabbing.\u003c/p>\n\u003cp>Inside the OR, everyone quickly takes their places. As the surgeon starts, Hourigan explains what's happening. It goes very fast.\u003c/p>\n\u003cp>\"An incision is being made into mom, and they are getting ready to take out the baby,\" Hourigan says. \"They can see the head. And the head is now coming out of the C-section incision. Baby's head is out.\"\u003c/p>\n\u003cp>In less than a minute after the surgery starts, the baby girl is completely out. A nurse rushes the newborn to a nearby table to clear her breathing. After the baby is breathing smoothly, Deopujari starts swabbing with a gauze pad.\u003c/p>\n\u003cp>First, she swabs the baby's mouth, cheeks and face. After turning the gauze over to expose more bacteria, Deopujari wipes the baby's hands and arms. Next, she wipes down her chest, goes over her abdomen, up the other arm and then over her back.[contextly_sidebar id=\"umm131VoK2OKqBWygztDrKkMjOgsaGeH\"]\u003c/p>\n\u003cp>\"And the swabbing is now over,\" Hourigan says.\u003c/p>\n\u003cp>Deopujari hands the baby back to a nurse. Hourigan and her team quickly head out of the OR.\u003c/p>\n\u003cp>\"That went perfectly,\" she says. \"Baby came out and was crying. We waited until baby was stable, and the swabbing went just as planned.\"\u003c/p>\n\u003cp>Hourigan and her colleagues will swab 50 babies to make sure their procedure is safe. If it is, they plan to expand the study to 800 babies, who would randomly receive either the bacterial swab or a placebo, throughout the Inova hospital system.\u003c/p>\n\u003cp>The results could prove important. \"We need more data and we need better data,\" says Silverman, of ACOG. \"If it shows that there is a clear benefit, then this process can be re-evaluated.\"\u003c/p>\n\u003cp>The next morning, Vukadinovich, her husband, Nick, 41, and their new daughter are together in a hospital room.\u003c/p>\n\u003cp>\"I'm good — feeling good today,\" she says, cradling her baby.\u003c/p>\n\u003cp>The couple doesn't know if their new daughter, who they would later name Evelyn Marie, was exposed to her mother's microbes or a sterile placebo solution. But they have their fingers crossed she was swabbed with bacteria.\u003c/p>\n\u003cp>\"I really hope that she was,\" Vukadinovich says. \"If there's a decreased chance of her having any health issues, that would be awesome.\"\u003c/p>\n\u003cp>Her husband, Nick, agrees.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\"We're not terribly religious so we won't baptize with water — holy water,\" Nick says. \"But since we're scientists, we like the idea of a bacterial baptism instead of a holy baptism — because now she's been initiated with bacteria, friendly bacteria, that should protect her down the road.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Doctors+Test+Bacterial+Smear+After+Cesarean+Sections+To+Bolster+Babies%27+Microbiomes&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Danielle Vukadinovich is sitting up in a hospital bed at the Inova Women's Hospital in Falls Church, Va., waiting to give birth.\u003c/p>\n\u003cp>\"I feel good, I'm excited!\" says Vukadinovich, 35, of Annandale, Va., \"Nervous, but good!\"\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Vukadinovich is getting a \u003ca href=\"https://medlineplus.gov/cesareansection.html\" target=\"_blank\" rel=\"noopener\">cesarean section\u003c/a> today. It's the second time for her — she underwent the surgical procedure 19 months ago when her twins were born.\u003c/p>\n\u003cp>This time Danielle wants to try something different, something that might sound strange. As soon as her daughter is born, a doctor will wipe bacteria fluid from Danielle's birth canal all over her baby's body.\u003c/p>\n\u003cp>\"I haven't told many people about this yet,\" Vukadinovich says, laughing. \"I understand why people would be like, 'Oh my gosh. That's so weird.' But I don't think it's yucky. It's normal. It's natural really.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The procedure, known as \"\u003ca href=\"https://www.mayoclinic.org/healthy-lifestyle/infant-and-toddler-health/expert-answers/vaginal-seeding/faq-20380881\" target=\"_blank\" rel=\"noopener\">vaginal seeding\u003c/a>,\" is designed to help babies develop healthy microbiomes — the collection of friendly bacteria that inhabit every person's body. Some people call it a \"bacterial baptism.\"\u003c/p>\n\u003cp>\"It's a little bit like that baby's first dunk,\" says \u003ca href=\"https://www.inova.org/indirectory/clinicaltrials.aspx?design=true&dirId=1&LoadCategory=ITMI&LoadSubCategory=Microbiome&memberID=280\" target=\"_blank\" rel=\"noopener\">Shira Levy\u003c/a>, the microbiome research manager at the Inova hospital. \"That's their first religious experience. You know, they get the water and that changes their spirituality.\u003c/p>\n\u003cp>\"In this case, they get the bacteria and that changes their microbiome,\" Levy says. \"This is their first microbiome experience.\"\u003c/p>\n\u003cp>The procedure was developed in response to the sharp rise in C-section births in recent years. That increase has been accompanied by \u003ca href=\"https://www.npr.org/sections/health-shots/2015/09/30/444746094/missing-microbes-provide-clues-about-asthma-risk\" target=\"_blank\" rel=\"noopener\">more cases of asthma\u003c/a>, allergies, eczema, obesity, and other diseases.\u003c/p>\n\u003cp>The theory is that the rise in these diseases might be happening, in part, because babies aren't getting exposed to their mother's microbes the way they would if they were passing naturally through the birth canal.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\"We think that one of the reasons that babies born by C-section are at increased risk for these diseases is because they don't receive that first beneficial exposure to their mother's vaginal microbiome,\" says \u003ca href=\"https://www.inova.org/Physician_Directory/Suchitra-K-Hourigan-MD/824530\" target=\"_blank\" rel=\"noopener\">Suchitra Hourigan\u003c/a>, a pediatric gastroenterologist at Inova.\u003c/p>\n\u003cp>One very small study \u003ca href=\"https://www.npr.org/sections/health-shots/2016/02/01/464905786/researchers-test-microbe-wipe-to-promote-babies-health-after-c-sections\" target=\"_blank\" rel=\"noopener\">indicated \u003c/a>that swabbing C-section babies with their mother's microbes immediately after birth could make their microbiomes develop more like those of babies born vaginally.\u003c/p>\n\u003cp>But the appeal of vaginal seeding has outpaced evidence that it is safe and effective.\u003c/p>\n\u003cp>Some couples have started trying vaginal seeding on their own. Vukadinovich jokes that she considered doing it herself. After all, she says, she's a nurse and her husband is a high school biology teacher.\u003c/p>\n\u003cp>\"I even told my mom: 'Nobody has to know. My husband would help me out,' \" she says, laughing. \"But I try not to take unnecessary risks.\"\u003c/p>\n\u003cp>Vukadinovich knows the procedure could be risky. Babies could be inadvertently exposed to disease-causing microbes, such as herpes virus or streptococcus bacteria.\u003c/p>\n\u003cp>In fact, medical groups such as the American College of Obstetrics and Gynecology \u003ca href=\"https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Obstetric-Practice/Vaginal-Seeding\" target=\"_blank\" rel=\"noopener\">warn\u003c/a> women against doing this. \"While there are data to suggest that there may be some scientific plausibility to the concept, it is not without significant risks,\" says \u003ca href=\"http://newsroom.ucla.edu/experts/preview/578561302cfac209100154a4/\" target=\"_blank\" rel=\"noopener\">Neil Silverman\u003c/a>, a clinical professor of obstetrics and gynecology at the UCLA School of Medicine, who represents ACOG. The group notes that mothers also transfer microbes to their newborns through skin-to-skin contact and breastfeeding.\u003c/p>\n\u003cp>So Vukadinovich was thrilled when she found out she could be part of the first \u003ca href=\"https://clinicaltrials.gov/ct2/show/NCT03298334?term=vaginal+seeding&rank=1\" target=\"_blank\" rel=\"noopener\">study\u003c/a> the Food and Drug Administration is allowing to rigorously test whether the procedure is safe and helps improve babies' health.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\"Who knows what's going to happen with the results? But if it does show something positive, I just think that would be great for kids and parents,\" she says.\u003c/p>\n\u003cp>Hourigan, who's helping lead the study, agrees. \"Just to be able to reduce one risk factor for obesity, especially when there are such high [C-section rates] in the U.S., would be huge,\" she says.\u003c/p>\n\u003cp>In the study, half of the babies will get swabbed with their mother's microbes; half will get swabbed with a sterile solution. All of the mothers will be carefully screened for dangerous infections.\u003c/p>\n\u003cp>All of the babies will then be followed for three years to see if they become obese or develop other health problems. A \u003ca href=\"https://clinicaltrials.gov/ct2/show/NCT03567707?term=vaginal+seeding&rank=2\" target=\"_blank\" rel=\"noopener\">similar study\u003c/a> is starting at the Icahn School of Medicine at Mount Sinai in New York City.\u003c/p>\n\u003cp>Vukadinovich agreed to let an NPR reporter and photographer observe her baby's birth and the swabbing. It's the first time journalists have been allowed to watch a baby go through the study.\u003c/p>\n\u003cp>\u003cstrong>Evelyn Marie is Born\u003c/strong>\u003c/p>\n\u003cp>As the nurses wheel Vukadinovich into the operating room, Hourigan, Levy and Dr. Varsha Deopujari follow. Deopujari, the study's clinical manager, will do the actual swabbing.\u003c/p>\n\u003cp>Inside the OR, everyone quickly takes their places. As the surgeon starts, Hourigan explains what's happening. It goes very fast.\u003c/p>\n\u003cp>\"An incision is being made into mom, and they are getting ready to take out the baby,\" Hourigan says. \"They can see the head. And the head is now coming out of the C-section incision. Baby's head is out.\"\u003c/p>\n\u003cp>In less than a minute after the surgery starts, the baby girl is completely out. A nurse rushes the newborn to a nearby table to clear her breathing. After the baby is breathing smoothly, Deopujari starts swabbing with a gauze pad.\u003c/p>\n\u003cp>First, she swabs the baby's mouth, cheeks and face. After turning the gauze over to expose more bacteria, Deopujari wipes the baby's hands and arms. Next, she wipes down her chest, goes over her abdomen, up the other arm and then over her back.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\"And the swabbing is now over,\" Hourigan says.\u003c/p>\n\u003cp>Deopujari hands the baby back to a nurse. Hourigan and her team quickly head out of the OR.\u003c/p>\n\u003cp>\"That went perfectly,\" she says. \"Baby came out and was crying. We waited until baby was stable, and the swabbing went just as planned.\"\u003c/p>\n\u003cp>Hourigan and her colleagues will swab 50 babies to make sure their procedure is safe. If it is, they plan to expand the study to 800 babies, who would randomly receive either the bacterial swab or a placebo, throughout the Inova hospital system.\u003c/p>\n\u003cp>The results could prove important. \"We need more data and we need better data,\" says Silverman, of ACOG. \"If it shows that there is a clear benefit, then this process can be re-evaluated.\"\u003c/p>\n\u003cp>The next morning, Vukadinovich, her husband, Nick, 41, and their new daughter are together in a hospital room.\u003c/p>\n\u003cp>\"I'm good — feeling good today,\" she says, cradling her baby.\u003c/p>\n\u003cp>The couple doesn't know if their new daughter, who they would later name Evelyn Marie, was exposed to her mother's microbes or a sterile placebo solution. But they have their fingers crossed she was swabbed with bacteria.\u003c/p>\n\u003cp>\"I really hope that she was,\" Vukadinovich says. \"If there's a decreased chance of her having any health issues, that would be awesome.\"\u003c/p>\n\u003cp>Her husband, Nick, agrees.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"We're not terribly religious so we won't baptize with water — holy water,\" Nick says. \"But since we're scientists, we like the idea of a bacterial baptism instead of a holy baptism — because now she's been initiated with bacteria, friendly bacteria, that should protect her down the road.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Doctors+Test+Bacterial+Smear+After+Cesarean+Sections+To+Bolster+Babies%27+Microbiomes&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Advanced Skin Cancer Was Once a Death Sentence. Immunotherapy Is Changing That",
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"content": "\u003cp>Most cancer patients are haunted by the same two questions:\u003c/p>\n\u003cp>\"Why me?\"\u003c/p>\n\u003caside class=\"pullquote alignright\">'If I had been diagnosed five years prior, who knows if I would be here.'\u003c/aside>\n\u003cp>\"Why now?\"\u003c/p>\n\u003cp>Not Ashley Walton.\u003c/p>\n\u003cp>Walton, 34, actually feels lucky advanced melanoma struck when it did.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“If I had been diagnosed five years prior, who knows if I would be here,\" she says.\u003c/p>\n\u003cp>Stage 4 melanoma used to be a death sentence. The disease doesn’t respond to radiation or chemotherapy, and patients survived, on average, less than a year.\u003c/p>\n\u003cp>But over the last decade, doctors are successfully using a new approach, one significantly different than the treatment options available for the last 150 years.\u003c/p>\n\u003cp>Instead of burning or poisoning cancer cells, new medicines unleash the body's natural defenses to fight them.\u003c/p>\n\u003cp>This treatment is called immunotherapy.\u003c/p>\n\u003cfigure id=\"attachment_444546\" class=\"wp-caption aligncenter\" style=\"max-width: 1857px\">\u003cimg class=\"size-full wp-image-444546\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/09/IMG_6200-e1537470859372.jpg\" alt=\"\" width=\"1857\" height=\"1209\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372.jpg 1857w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-160x104.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-800x521.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-768x500.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-1020x664.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-1200x781.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-1180x768.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-960x625.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-240x156.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-375x244.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-520x339.jpg 520w\" sizes=\"(max-width: 1857px) 100vw, 1857px\">\u003cfigcaption class=\"wp-caption-text\">Ashley Walton drinks fluid to prepare for magnetic resonance imaging (MRI) scan to check on the progress of her melanoma. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Beating the Odds\u003c/strong>\u003c/p>\n\u003cp>When Walton was 26, she found a mole on the back of her hip.\u003c/p>\n\u003cp>\"It started morphing into this ugly, dark, bleeding thing,\" she says, grimacing. \"I just knew something was wrong.\"\u003c/p>\n\u003cp>Doctors surgically removed her tumor. But a couple of years later, she discovered a tiny lump in her abdomen. It felt like a popcorn kernel, and within a few weeks grew to the size of a walnut.\u003c/p>\n\u003cp>A biopsy revealed she had stage 4 melanoma.\u003c/p>\n\u003cp>Walton searched online for information about the disease. She recalls the moment she discovered the average survival rate: six to nine months.\u003c/p>\n\u003cp>\"I remember sort of losing my hearing, almost losing my vision to where I felt like I was in a tunnel,\" she says.\u003c/p>\n\u003cp>But when she consulted with her oncologist, Dr. Adil Daud of UC San Francisco, he had consoling news.\u003c/p>\n\u003cp>“He told me if there's any time to have a melanoma -- right now is a pretty good time to have it -- because there's a lot of stuff opening up to you,\" she says.\u003c/p>\n\u003cp>Dr. Daud was referring to immune checkpoint inhibitors, which he says are increasing survival rates by at least threefold. These cancer drugs help the immune system do what it’s supposed to -- fight pathogens.\u003c/p>\n\u003cp>Normally the immune system recognizes disease-causing organisms. But cancer cells are unusual because they go undetected as harmful. Immune checkpoint inhibitors make them visible for attack.\u003c/p>\n\u003cfigure id=\"attachment_444547\" class=\"wp-caption aligncenter\" style=\"max-width: 1728px\">\u003cimg class=\"size-full wp-image-444547\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/09/IMG_6291-e1537471184446.jpg\" alt=\"\" width=\"1728\" height=\"1166\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446.jpg 1728w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-160x108.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-800x540.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-768x518.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-1020x688.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-1200x810.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-1180x796.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-960x648.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-240x162.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-375x253.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-520x351.jpg 520w\" sizes=\"(max-width: 1728px) 100vw, 1728px\">\u003cfigcaption class=\"wp-caption-text\">Ashley Walton and her mother in a quarterly doctor appointment at UCSF Medical Center. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cb>Treatment Earns Nobel Prize\u003c/b>\u003c/p>\n\u003cp>The Food and Drug Administration’s approval of the first immune checkpoint inhibitor in 2011 marked a breakthrough in the field.\u003c/p>\n\u003cp>The technology behind Ipilimumab, which is branded as Yervoy, was developed in a UC Berkeley lab in the 1990s, by a student named Matthew Krummel, now an immunotherapy researcher at \u003ca href=\"http://krummellab.com/\" target=\"_blank\" rel=\"noopener\">UCSF\u003c/a>.\u003c/p>\n\u003cp>“I was a very frustrated graduate student for a few years, trying to develop an antibody that would do something,\" Krummel says.\u003c/p>\n\u003cp>He wanted to influence how cells behave. After many long nights, Krummel noticed one antibody successfully manipulating the movement of immune cells.\u003c/p>\n\u003cp>“You can drive them like a car; you can accelerate them; or you can brake them,\" Krummel says. \"And then it was really like playtime.”\u003c/p>\n\u003cp>He injected the antibodies into mice with cancer. In the very first set of experiments, their tumors shrunk.\u003c/p>\n\u003cp>Earlier this month, Krummel’s thesis advisor, James Allison, won the Nobel Prize for Medicine for their lab's work on immune checkpoint inhibitors.\u003c/p>\n\u003cp>\u003cstrong>Years of Harrowing Treatments\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignright\">'Across different tumor types, only about 20 percent of patients with cancer respond to today's immunotherapy.'\u003ccite>Dr. Adil Daud, UCSF\u003c/cite>\u003c/aside>\n\u003cp>When Walton started immunotherapy treatment, including Ipilimumab, the 90-minute drips were followed by side effects like fever, diarrhea, rash, vomiting and gastritis. This is not uncommon in immunotherapy, as the drugs can put a patient’s immune system into overdrive provoking an attack on healthy cells, tissues and organs.\u003c/p>\n\u003cp>Walton’s tumors initially shrunk, but within six months, new tumors cropped up, in her abdomen. Her oncologist then ran through the list of available drugs, moving on as each one, sometimes tried in combination, in turn failed to deliver the knockout blow.\u003c/p>\n\u003cp>“It's absolutely exhausting emotionally and physically to know that there's no option for you,” says Walton. “Those were the days when I felt like I will probably die from this, and I’ll die young.”\u003c/p>\n\u003cp>Finally, eight years later, she heard the magic word: remission. Dr. Daud isn't sure if it was the buildup of multiple immunotherapy drugs or some new combination that did the trick.\u003c/p>\n\u003cp>“There are so many advancements being made in the field of immunotherapy that even if [one] doesn't cure you, it gets you to the next big thing,” says Walton.\u003c/p>\n\u003cp>Now that she has been off immunotherapy for 10 months, Walton tentatively asked Dr. Daud something that had been her mind for a long time.\u003c/p>\n\u003cp>\"So, what do you think about pregnancy or trying to start a family?\" asked Walton.\u003c/p>\n\u003cp>\"I think this is a good time to get pregnant, actually,\" responded Dr. Daud.\u003c/p>\n\u003cp>Both doctor and patient could barely contain their glee, punctuating the question-and-answer session with happy giggles. Walton \u003cspan style=\"font-weight: 400\">crosses her fingers and smiles. \u003c/span>Throughout her treatment, doctors warned that getting pregnant would be too dangerous. But Daud now trusts her body's ability to support a child.\u003c/p>\n\u003cp>\u003cstrong>A Hopeful Future\u003c/strong>\u003c/p>\n\u003cp>Stories like Walton's are sparking a lot of excitement among oncologists.\u003c/p>\n\u003cp>\"So imagine when we’ve gone from a time when we had nothing to offer, to today, and they are talking about a cure for some patients with advanced melanoma,\" says Dr. Leonard Lichtenfeld, deputy chief medical officer for the American Cancer Society.\u003c/p>\n\u003cp>Scientists and major pharmaceutical companies are waging huge bets on immunotherapy. There are currently about 1,000 active trials to develop the next miracle drug. Lichtenfeld is optimistic, but he is also cautious about adding to the hype.\u003c/p>\n\u003cp>“We don’t know in how many cancers they are going to be effective,” he says. “And we still don’t know how to harness the maximum benefit from these drugs by, say, using them in combination with other drugs.”\u003c/p>\n\u003cp>Currently, 40 percent of advanced melanoma patients still do not respond to immunotherapy. The statistics are even worse for other cancers.\u003c/p>\n\u003cp>“It is still very common to not have immune treatment work at all,” says Dr. Daud. “Across different tumor types, only about 20 percent of patients with cancer respond to today's immunotherapy, so the numbers are much more sobering.\"\u003c/p>\n\u003cp>He hypothesizes that age, gender, concurring autoimmune diseases, or even gut bacteria may influence patient responsiveness, but he says we know very little about these factors.\u003c/p>\n\u003cp>“I think there's a lot of fundamental questions about the immune system that we just simply don't know the answer to,” says Daud.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“And yet I do foresee a day when we use other types of treatment infrequently to treat cancer, and most cancers will be treated with immunotherapy. But we still have a long ways to go.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Most cancer patients are haunted by the same two questions:\u003c/p>\n\u003cp>\"Why me?\"\u003c/p>\n\u003caside class=\"pullquote alignright\">'If I had been diagnosed five years prior, who knows if I would be here.'\u003c/aside>\n\u003cp>\"Why now?\"\u003c/p>\n\u003cp>Not Ashley Walton.\u003c/p>\n\u003cp>Walton, 34, actually feels lucky advanced melanoma struck when it did.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“If I had been diagnosed five years prior, who knows if I would be here,\" she says.\u003c/p>\n\u003cp>Stage 4 melanoma used to be a death sentence. The disease doesn’t respond to radiation or chemotherapy, and patients survived, on average, less than a year.\u003c/p>\n\u003cp>But over the last decade, doctors are successfully using a new approach, one significantly different than the treatment options available for the last 150 years.\u003c/p>\n\u003cp>Instead of burning or poisoning cancer cells, new medicines unleash the body's natural defenses to fight them.\u003c/p>\n\u003cp>This treatment is called immunotherapy.\u003c/p>\n\u003cfigure id=\"attachment_444546\" class=\"wp-caption aligncenter\" style=\"max-width: 1857px\">\u003cimg class=\"size-full wp-image-444546\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/09/IMG_6200-e1537470859372.jpg\" alt=\"\" width=\"1857\" height=\"1209\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372.jpg 1857w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-160x104.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-800x521.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-768x500.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-1020x664.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-1200x781.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-1180x768.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-960x625.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-240x156.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-375x244.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6200-e1537470859372-520x339.jpg 520w\" sizes=\"(max-width: 1857px) 100vw, 1857px\">\u003cfigcaption class=\"wp-caption-text\">Ashley Walton drinks fluid to prepare for magnetic resonance imaging (MRI) scan to check on the progress of her melanoma. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Beating the Odds\u003c/strong>\u003c/p>\n\u003cp>When Walton was 26, she found a mole on the back of her hip.\u003c/p>\n\u003cp>\"It started morphing into this ugly, dark, bleeding thing,\" she says, grimacing. \"I just knew something was wrong.\"\u003c/p>\n\u003cp>Doctors surgically removed her tumor. But a couple of years later, she discovered a tiny lump in her abdomen. It felt like a popcorn kernel, and within a few weeks grew to the size of a walnut.\u003c/p>\n\u003cp>A biopsy revealed she had stage 4 melanoma.\u003c/p>\n\u003cp>Walton searched online for information about the disease. She recalls the moment she discovered the average survival rate: six to nine months.\u003c/p>\n\u003cp>\"I remember sort of losing my hearing, almost losing my vision to where I felt like I was in a tunnel,\" she says.\u003c/p>\n\u003cp>But when she consulted with her oncologist, Dr. Adil Daud of UC San Francisco, he had consoling news.\u003c/p>\n\u003cp>“He told me if there's any time to have a melanoma -- right now is a pretty good time to have it -- because there's a lot of stuff opening up to you,\" she says.\u003c/p>\n\u003cp>Dr. Daud was referring to immune checkpoint inhibitors, which he says are increasing survival rates by at least threefold. These cancer drugs help the immune system do what it’s supposed to -- fight pathogens.\u003c/p>\n\u003cp>Normally the immune system recognizes disease-causing organisms. But cancer cells are unusual because they go undetected as harmful. Immune checkpoint inhibitors make them visible for attack.\u003c/p>\n\u003cfigure id=\"attachment_444547\" class=\"wp-caption aligncenter\" style=\"max-width: 1728px\">\u003cimg class=\"size-full wp-image-444547\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/09/IMG_6291-e1537471184446.jpg\" alt=\"\" width=\"1728\" height=\"1166\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446.jpg 1728w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-160x108.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-800x540.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-768x518.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-1020x688.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-1200x810.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-1180x796.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-960x648.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-240x162.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-375x253.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/09/IMG_6291-e1537471184446-520x351.jpg 520w\" sizes=\"(max-width: 1728px) 100vw, 1728px\">\u003cfigcaption class=\"wp-caption-text\">Ashley Walton and her mother in a quarterly doctor appointment at UCSF Medical Center. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cb>Treatment Earns Nobel Prize\u003c/b>\u003c/p>\n\u003cp>The Food and Drug Administration’s approval of the first immune checkpoint inhibitor in 2011 marked a breakthrough in the field.\u003c/p>\n\u003cp>The technology behind Ipilimumab, which is branded as Yervoy, was developed in a UC Berkeley lab in the 1990s, by a student named Matthew Krummel, now an immunotherapy researcher at \u003ca href=\"http://krummellab.com/\" target=\"_blank\" rel=\"noopener\">UCSF\u003c/a>.\u003c/p>\n\u003cp>“I was a very frustrated graduate student for a few years, trying to develop an antibody that would do something,\" Krummel says.\u003c/p>\n\u003cp>He wanted to influence how cells behave. After many long nights, Krummel noticed one antibody successfully manipulating the movement of immune cells.\u003c/p>\n\u003cp>“You can drive them like a car; you can accelerate them; or you can brake them,\" Krummel says. \"And then it was really like playtime.”\u003c/p>\n\u003cp>He injected the antibodies into mice with cancer. In the very first set of experiments, their tumors shrunk.\u003c/p>\n\u003cp>Earlier this month, Krummel’s thesis advisor, James Allison, won the Nobel Prize for Medicine for their lab's work on immune checkpoint inhibitors.\u003c/p>\n\u003cp>\u003cstrong>Years of Harrowing Treatments\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignright\">'Across different tumor types, only about 20 percent of patients with cancer respond to today's immunotherapy.'\u003ccite>Dr. Adil Daud, UCSF\u003c/cite>\u003c/aside>\n\u003cp>When Walton started immunotherapy treatment, including Ipilimumab, the 90-minute drips were followed by side effects like fever, diarrhea, rash, vomiting and gastritis. This is not uncommon in immunotherapy, as the drugs can put a patient’s immune system into overdrive provoking an attack on healthy cells, tissues and organs.\u003c/p>\n\u003cp>Walton’s tumors initially shrunk, but within six months, new tumors cropped up, in her abdomen. Her oncologist then ran through the list of available drugs, moving on as each one, sometimes tried in combination, in turn failed to deliver the knockout blow.\u003c/p>\n\u003cp>“It's absolutely exhausting emotionally and physically to know that there's no option for you,” says Walton. “Those were the days when I felt like I will probably die from this, and I’ll die young.”\u003c/p>\n\u003cp>Finally, eight years later, she heard the magic word: remission. Dr. Daud isn't sure if it was the buildup of multiple immunotherapy drugs or some new combination that did the trick.\u003c/p>\n\u003cp>“There are so many advancements being made in the field of immunotherapy that even if [one] doesn't cure you, it gets you to the next big thing,” says Walton.\u003c/p>\n\u003cp>Now that she has been off immunotherapy for 10 months, Walton tentatively asked Dr. Daud something that had been her mind for a long time.\u003c/p>\n\u003cp>\"So, what do you think about pregnancy or trying to start a family?\" asked Walton.\u003c/p>\n\u003cp>\"I think this is a good time to get pregnant, actually,\" responded Dr. Daud.\u003c/p>\n\u003cp>Both doctor and patient could barely contain their glee, punctuating the question-and-answer session with happy giggles. Walton \u003cspan style=\"font-weight: 400\">crosses her fingers and smiles. \u003c/span>Throughout her treatment, doctors warned that getting pregnant would be too dangerous. But Daud now trusts her body's ability to support a child.\u003c/p>\n\u003cp>\u003cstrong>A Hopeful Future\u003c/strong>\u003c/p>\n\u003cp>Stories like Walton's are sparking a lot of excitement among oncologists.\u003c/p>\n\u003cp>\"So imagine when we’ve gone from a time when we had nothing to offer, to today, and they are talking about a cure for some patients with advanced melanoma,\" says Dr. Leonard Lichtenfeld, deputy chief medical officer for the American Cancer Society.\u003c/p>\n\u003cp>Scientists and major pharmaceutical companies are waging huge bets on immunotherapy. There are currently about 1,000 active trials to develop the next miracle drug. Lichtenfeld is optimistic, but he is also cautious about adding to the hype.\u003c/p>\n\u003cp>“We don’t know in how many cancers they are going to be effective,” he says. “And we still don’t know how to harness the maximum benefit from these drugs by, say, using them in combination with other drugs.”\u003c/p>\n\u003cp>Currently, 40 percent of advanced melanoma patients still do not respond to immunotherapy. The statistics are even worse for other cancers.\u003c/p>\n\u003cp>“It is still very common to not have immune treatment work at all,” says Dr. Daud. “Across different tumor types, only about 20 percent of patients with cancer respond to today's immunotherapy, so the numbers are much more sobering.\"\u003c/p>\n\u003cp>He hypothesizes that age, gender, concurring autoimmune diseases, or even gut bacteria may influence patient responsiveness, but he says we know very little about these factors.\u003c/p>\n\u003cp>“I think there's a lot of fundamental questions about the immune system that we just simply don't know the answer to,” says Daud.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“And yet I do foresee a day when we use other types of treatment infrequently to treat cancer, and most cancers will be treated with immunotherapy. But we still have a long ways to go.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>In order to see the red of a sunset or the green of spring leaves, developing human eyes need to get the right hormone at the right time.\u003c/p>\n\u003cp>That's the finding of a team of scientists who studied how color vision develops using hundreds of human retinas grown in the lab.\u003c/p>\n\u003cp>The discovery, \u003ca href=\"http://science.sciencemag.org/cgi/doi/10.1126/science.aau6348\" target=\"_blank\" rel=\"noopener\">published\u003c/a> Thursday in the journal \u003cem>Science\u003c/em>, could help accelerate current efforts to cure colorblindness. It could also lead to new treatments for diseases including macular degeneration, the leading cause of vision loss.\u003c/p>\n\u003cp>\"It's important that we understand how nature controls the development of the retina so we can understand better why things go wrong in disease and how we can treat them,\" says \u003ca href=\"https://www.linkedin.com/in/smbeck2000/\" target=\"_blank\" rel=\"noopener\">Steven Becker\u003c/a>, a scientist at the National Eye Institute. The newly published findings are a step in that direction, says Becker, who has no connection to the research.\u003c/p>\n\u003cp>The development of color vision in people has been difficult to study because it usually occurs in the womb — and out of sight. But two scientists at Johns Hopkins University thought they might find some answers using retinas grown in the lab.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>These \"\u003ca href=\"https://www.youtube.com/watch?v=4CHvLNjg6nI\" target=\"_blank\" rel=\"noopener\">retinal organoids\u003c/a>\" have been around for a few years but are difficult and tedious to grow, says \u003ca href=\"https://www.linkedin.com/in/kiara-eldred-984b1513/\" target=\"_blank\" rel=\"noopener\">Kiara Eldred\u003c/a>, a graduate student at Hopkins who is the paper's first author.\u003c/p>\n\u003cp>It takes up to a year to turn a batch of immature retinal cells into a functioning organoid.\u003c/p>\n\u003cp>\"For the first week of their life, I take care of them every day,\" Eldred says. After a couple of weeks, she says, the cells become \"a little bit more independent.\"\u003c/p>\n\u003cp>And with luck, these clusters of immature cells develop into a 3D structure that \"looks and acts like a developing retina that you would see in a baby,\" says \u003ca href=\"http://sites.krieger.jhu.edu/johnstonlab/people/\" target=\"_blank\" rel=\"noopener\">Bob Johnston\u003c/a>, Eldred's boss and an assistant professor in the biology department.\u003c/p>\n\u003cp>Johnston's lab had been studying vision in flies. But he and Eldred saw a chance to try something much more ambitious.\u003c/p>\n\u003cp>\"We discussed this crazy idea of: Could we use these human retinal organoids to study how we get the different color-sensing cells in our eyes?\" Johnston says.\u003c/p>\n\u003cp>Using human cells was key because you can't study how humans see color in a fly, or even a mouse.\u003c/p>\n\u003cp>\"Mice don't sense red,\" Johnston says. \"They don't have these red-detecting cells. So we really have to study this in human tissue to get any insight into how it works.\"\u003c/p>\n\u003cp>Johnston and Eldred knew that in a human fetus, cells that detect blue light appear first. Then come cells that respond to red and green light.\u003c/p>\n\u003cp>And research on animals suggested that the thyroid hormone was involved in the development of these color-sensing cells, called cones. So Johnston had Eldred conduct an experiment with immature retinal cells.\u003c/p>\n\u003cp>\"I added thyroid hormone to the dish during their development, and we got more red-green cones developing in those organoids,\" she says. \"We got really excited because we were on to something.\"\u003c/p>\n\u003cp>It would take years and many more experiments to confirm that the thyroid hormone was actually triggering the emergence of color vision. And the team still hasn't figured out what causes some cones to go on to become even more specialized by detecting only red or only green.\u003c/p>\n\u003cp>But Johnston says his lab is now preparing to take on two new goals.\u003c/p>\n\u003cp>\"One is to restore color vision to people that are colorblind,\" he says. What his lab is learning, he says, could help speed an \u003ca href=\"https://www.npr.org/sections/health-shots/2015/03/25/395303785/university-and-biotech-firm-team-up-on-colorblindness-therapy\" target=\"_blank\" rel=\"noopener\">existing effort\u003c/a> to use gene therapy to cure colorblindness.\u003c/p>\n\u003cp>The lab's second goal is to use retinal organoids to better understand diseases including glaucoma and \u003ca href=\"https://medlineplus.gov/maculardegeneration.html\" target=\"_blank\" rel=\"noopener\">macular degeneration\u003c/a>, a leading cause of vision loss.\u003c/p>\n\u003cp>Macular degeneration affects the macula, an area of the retina that provides high-resolution vision. The condition has been hard to study, though, because mice don't have a macula.\u003c/p>\n\u003cp>So Johnston hopes to learn more by having his lab create macular organoids.\u003c/p>\n\u003cp>There's growing optimism among scientists that new treatments for retinal diseases will emerge from such efforts, Becker says. Initially, he says, researchers had doubts about whether a retina grown in a dish could mimic the real thing.\u003c/p>\n\u003cp>But studies like this one on color vision, he says, \"show that the similarity is quite high.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>To encourage scientists to develop more retinal organoids, the National Eye Institute is sponsoring a \u003ca href=\"https://nei.nih.gov/content/nih-solicits-next-generation-retina-organoids-prize-competition\" target=\"_blank\" rel=\"noopener\">scientific competition\u003c/a> with $1 million in prizes.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Human+Retinas+Grown+In+A+Dish+Reveal+Origin+Of+Color+Vision&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>These \"\u003ca href=\"https://www.youtube.com/watch?v=4CHvLNjg6nI\" target=\"_blank\" rel=\"noopener\">retinal organoids\u003c/a>\" have been around for a few years but are difficult and tedious to grow, says \u003ca href=\"https://www.linkedin.com/in/kiara-eldred-984b1513/\" target=\"_blank\" rel=\"noopener\">Kiara Eldred\u003c/a>, a graduate student at Hopkins who is the paper's first author.\u003c/p>\n\u003cp>It takes up to a year to turn a batch of immature retinal cells into a functioning organoid.\u003c/p>\n\u003cp>\"For the first week of their life, I take care of them every day,\" Eldred says. After a couple of weeks, she says, the cells become \"a little bit more independent.\"\u003c/p>\n\u003cp>And with luck, these clusters of immature cells develop into a 3D structure that \"looks and acts like a developing retina that you would see in a baby,\" says \u003ca href=\"http://sites.krieger.jhu.edu/johnstonlab/people/\" target=\"_blank\" rel=\"noopener\">Bob Johnston\u003c/a>, Eldred's boss and an assistant professor in the biology department.\u003c/p>\n\u003cp>Johnston's lab had been studying vision in flies. But he and Eldred saw a chance to try something much more ambitious.\u003c/p>\n\u003cp>\"We discussed this crazy idea of: Could we use these human retinal organoids to study how we get the different color-sensing cells in our eyes?\" Johnston says.\u003c/p>\n\u003cp>Using human cells was key because you can't study how humans see color in a fly, or even a mouse.\u003c/p>\n\u003cp>\"Mice don't sense red,\" Johnston says. \"They don't have these red-detecting cells. So we really have to study this in human tissue to get any insight into how it works.\"\u003c/p>\n\u003cp>Johnston and Eldred knew that in a human fetus, cells that detect blue light appear first. Then come cells that respond to red and green light.\u003c/p>\n\u003cp>And research on animals suggested that the thyroid hormone was involved in the development of these color-sensing cells, called cones. So Johnston had Eldred conduct an experiment with immature retinal cells.\u003c/p>\n\u003cp>\"I added thyroid hormone to the dish during their development, and we got more red-green cones developing in those organoids,\" she says. \"We got really excited because we were on to something.\"\u003c/p>\n\u003cp>It would take years and many more experiments to confirm that the thyroid hormone was actually triggering the emergence of color vision. And the team still hasn't figured out what causes some cones to go on to become even more specialized by detecting only red or only green.\u003c/p>\n\u003cp>But Johnston says his lab is now preparing to take on two new goals.\u003c/p>\n\u003cp>\"One is to restore color vision to people that are colorblind,\" he says. What his lab is learning, he says, could help speed an \u003ca href=\"https://www.npr.org/sections/health-shots/2015/03/25/395303785/university-and-biotech-firm-team-up-on-colorblindness-therapy\" target=\"_blank\" rel=\"noopener\">existing effort\u003c/a> to use gene therapy to cure colorblindness.\u003c/p>\n\u003cp>The lab's second goal is to use retinal organoids to better understand diseases including glaucoma and \u003ca href=\"https://medlineplus.gov/maculardegeneration.html\" target=\"_blank\" rel=\"noopener\">macular degeneration\u003c/a>, a leading cause of vision loss.\u003c/p>\n\u003cp>Macular degeneration affects the macula, an area of the retina that provides high-resolution vision. The condition has been hard to study, though, because mice don't have a macula.\u003c/p>\n\u003cp>So Johnston hopes to learn more by having his lab create macular organoids.\u003c/p>\n\u003cp>There's growing optimism among scientists that new treatments for retinal diseases will emerge from such efforts, Becker says. Initially, he says, researchers had doubts about whether a retina grown in a dish could mimic the real thing.\u003c/p>\n\u003cp>But studies like this one on color vision, he says, \"show that the similarity is quite high.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>To encourage scientists to develop more retinal organoids, the National Eye Institute is sponsoring a \u003ca href=\"https://nei.nih.gov/content/nih-solicits-next-generation-retina-organoids-prize-competition\" target=\"_blank\" rel=\"noopener\">scientific competition\u003c/a> with $1 million in prizes.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Human+Retinas+Grown+In+A+Dish+Reveal+Origin+Of+Color+Vision&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Researchers at UC San Francisco have unveiled the largest \u003ca href=\"http://10kimmunomes.org/\" target=\"_blank\" rel=\"noopener\">searchable database\u003c/a> of immunology data, gathered from 10,000 people of various ages, ethnicity, and backgrounds. It could lead to more effective treatments for a wide range of immune disorders.[contextly_sidebar id=”lms9rSPdk5pG72xqgRdVMiGv0hv7IpdH”]\u003c/p>\n\u003cp>The new data pool represents the \u003ca href=\"https://www.cell.com/cell-reports/fulltext/S2211-1247(18)31451-7\" target=\"_blank\" rel=\"noopener\">largest control group\u003c/a> ever compiled on the human immune system, according to the study published on Tuesday in the journal, \u003cem>Cell Reports\u003c/em>.\u003c/p>\n\u003cp>Called the \u003ca href=\"http://10kimmunomes.org/\" target=\"_blank\" rel=\"noopener\">10,000 Immunomes Project\u003c/a> (10KIP), it’s the culmination of four years of work and provides an instant comparison group for researchers studying the immune system and immune dysfunction.\u003c/p>\n\u003cp>UCSF researchers created the tool using immunology data from 83 studies representing 10,000 healthy subjects, according to senior author Atul Butte, director of the \u003ca href=\"http://bakarinstitute.ucsf.edu/\" target=\"_blank\" rel=\"noopener\">Bakar Computational Health Sciences Institute\u003c/a> at UCSF.\u003c/p>\n\u003caside class=\"pullquote alignright\">‘If the field of genetics is able to compile large collections consisting of millions of people, why does immunology lag behind?’\u003ccite>Atul Butte, UCSF\u003c/cite>\u003c/aside>\n\u003cp>The data comes from studies on organ transplants, autoimmune disease trials, vaccine studies and other research funded by the National Institute of Allergy and Infectious Diseases (NIAID).\u003c/p>\n\u003cdiv>\n\u003cp>“We have sub-populations in the U.S. that don’t really participate in studies so why not just gather all this massive data on the immune system in one central place,” says Butte. “We can turn to this data to see what is going on in a healthy immune system spanning different populations in the U.S.”\u003c/p>\n\u003cp>Butte says the ability to manipulate immune system activity will benefit a wide range of patients, including transplant recipients, cancer and AIDS patients, and those suffering from some form of immune dysfunction.\u003c/p>\n\u003cp>Autoimmune Disease (AD) in particular, an historically underfunded field, could benefit greatly from the availability of a large and diverse control group, according to Butte.\u003c/p>\n\u003cp>\u003cstrong>Rise of Autoimmine Disease\u003c/strong>\u003c/p>\n\u003cp>AD is one of the fastest growing illnesses in the U.S., with 20 percent of the population or one in five people, suffering from the disorder.[contextly_sidebar id=”KPqEb6LD9ky4mDsIDJAEnoEvgzkEna45″]\u003c/p>\n\u003cp>Despite AD being \u003ca href=\"https://www.aarda.org/who-we-are/our-mission/\" target=\"_blank\" rel=\"noopener\">one of the top 10 leading causes\u003c/a> of death in females up to 64 years of age, research has continued to lag behind, according to Butte.\u003c/p>\n\u003cp>The National Institutes of Health\u003ca href=\"https://ww2.kqed.org/science/2018/10/09/voting-on-daylight-saving-time-animal-confinement-and-water-propositions-3-7-and-12-explained/\" target=\"_blank\" rel=\"noopener\"> has spent\u003c/a> $591 million dollars on AD research compared to the $6.1 billion spent on cancer. Current treatments consist of risky immunosuppressants that can lead to devastating long-term side effects.[contextly_sidebar id=”ZbtYikLAiggPmeNWkxr4kKECzkkjZf4Z”]\u003c/p>\n\u003cp>UCSF researchers developed the new searchable database in part to boost AD research. Typically, studies done on immune systems are smaller and it’s rare to get 10,000 participants, according to Butte.\u003c/p>\n\u003cp>Plus, the human immune system is a moving target.\u003c/p>\n\u003cp>“It’s a difficult field to study because unlike DNA for example, your immune system changes from morning to night. So which aspect of the immune system scientists focus on, and \u003cem>when\u003c/em> they study it, these are all problems we are getting better at. We just need more studies.”\u003c/p>\n\u003cp>To test their new tool, researchers created a custom control group comprised of women between 18 and 40 years of age and compared it to 56 pregnant women who participated in a prior study tracking immune changes during pregnancy.\u003c/p>\n\u003cp>Using this control group, researchers were able to detect how various immune cells and cell signaling proteins, called cytokines, changed from pre-pregnancy levels— measurements that the original study failed to pick up.\u003c/p>\n\u003cp>Researchers also used the new tool to compare immunity in people from different racial and ethnic backgrounds. The findings showed both known differences as well as new information that could only be seen by combining data from dozens of different studies.\u003c/p>\n\u003cp>For instance, researchers found that regulatory T cells, which suppress the immune response, are present at higher levels in African Americans, compared to all other groups.\u003c/p>\n\u003cp>\u003cstrong>Shareable Science\u003c/strong>\u003c/p>\n\u003cp>Butte sees the searchable database as part of a broader trend in science, promoting open access where more scientists are willing to share their raw data with others.\u003c/p>\n\u003cp>“It’s really hundreds of people who have essentially contributed to this work,” he notes.\u003c/p>\n\u003cp>Butte says he hopes his work will bring immunology to the forefront and inspire others to rethink their approach to the field.\u003c/p>\n\u003cp>“If the field of genetics is able to compile large collections consisting of millions of people,” he wonders, “why does immunology lag behind? I want to get people in the field thinking about larger collections of samples that cut across race, age and gender.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003c/div>\n\u003cp>\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Researchers at UC San Francisco have unveiled the largest \u003ca href=\"http://10kimmunomes.org/\" target=\"_blank\" rel=\"noopener\">searchable database\u003c/a> of immunology data, gathered from 10,000 people of various ages, ethnicity, and backgrounds. It could lead to more effective treatments for a wide range of immune disorders.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The new data pool represents the \u003ca href=\"https://www.cell.com/cell-reports/fulltext/S2211-1247(18)31451-7\" target=\"_blank\" rel=\"noopener\">largest control group\u003c/a> ever compiled on the human immune system, according to the study published on Tuesday in the journal, \u003cem>Cell Reports\u003c/em>.\u003c/p>\n\u003cp>Called the \u003ca href=\"http://10kimmunomes.org/\" target=\"_blank\" rel=\"noopener\">10,000 Immunomes Project\u003c/a> (10KIP), it’s the culmination of four years of work and provides an instant comparison group for researchers studying the immune system and immune dysfunction.\u003c/p>\n\u003cp>UCSF researchers created the tool using immunology data from 83 studies representing 10,000 healthy subjects, according to senior author Atul Butte, director of the \u003ca href=\"http://bakarinstitute.ucsf.edu/\" target=\"_blank\" rel=\"noopener\">Bakar Computational Health Sciences Institute\u003c/a> at UCSF.\u003c/p>\n\u003caside class=\"pullquote alignright\">‘If the field of genetics is able to compile large collections consisting of millions of people, why does immunology lag behind?’\u003ccite>Atul Butte, UCSF\u003c/cite>\u003c/aside>\n\u003cp>The data comes from studies on organ transplants, autoimmune disease trials, vaccine studies and other research funded by the National Institute of Allergy and Infectious Diseases (NIAID).\u003c/p>\n\u003cdiv>\n\u003cp>“We have sub-populations in the U.S. that don’t really participate in studies so why not just gather all this massive data on the immune system in one central place,” says Butte. “We can turn to this data to see what is going on in a healthy immune system spanning different populations in the U.S.”\u003c/p>\n\u003cp>Butte says the ability to manipulate immune system activity will benefit a wide range of patients, including transplant recipients, cancer and AIDS patients, and those suffering from some form of immune dysfunction.\u003c/p>\n\u003cp>Autoimmune Disease (AD) in particular, an historically underfunded field, could benefit greatly from the availability of a large and diverse control group, according to Butte.\u003c/p>\n\u003cp>\u003cstrong>Rise of Autoimmine Disease\u003c/strong>\u003c/p>\n\u003cp>AD is one of the fastest growing illnesses in the U.S., with 20 percent of the population or one in five people, suffering from the disorder.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Despite AD being \u003ca href=\"https://www.aarda.org/who-we-are/our-mission/\" target=\"_blank\" rel=\"noopener\">one of the top 10 leading causes\u003c/a> of death in females up to 64 years of age, research has continued to lag behind, according to Butte.\u003c/p>\n\u003cp>The National Institutes of Health\u003ca href=\"https://ww2.kqed.org/science/2018/10/09/voting-on-daylight-saving-time-animal-confinement-and-water-propositions-3-7-and-12-explained/\" target=\"_blank\" rel=\"noopener\"> has spent\u003c/a> $591 million dollars on AD research compared to the $6.1 billion spent on cancer. Current treatments consist of risky immunosuppressants that can lead to devastating long-term side effects.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>UCSF researchers developed the new searchable database in part to boost AD research. Typically, studies done on immune systems are smaller and it’s rare to get 10,000 participants, according to Butte.\u003c/p>\n\u003cp>Plus, the human immune system is a moving target.\u003c/p>\n\u003cp>“It’s a difficult field to study because unlike DNA for example, your immune system changes from morning to night. So which aspect of the immune system scientists focus on, and \u003cem>when\u003c/em> they study it, these are all problems we are getting better at. We just need more studies.”\u003c/p>\n\u003cp>To test their new tool, researchers created a custom control group comprised of women between 18 and 40 years of age and compared it to 56 pregnant women who participated in a prior study tracking immune changes during pregnancy.\u003c/p>\n\u003cp>Using this control group, researchers were able to detect how various immune cells and cell signaling proteins, called cytokines, changed from pre-pregnancy levels— measurements that the original study failed to pick up.\u003c/p>\n\u003cp>Researchers also used the new tool to compare immunity in people from different racial and ethnic backgrounds. The findings showed both known differences as well as new information that could only be seen by combining data from dozens of different studies.\u003c/p>\n\u003cp>For instance, researchers found that regulatory T cells, which suppress the immune response, are present at higher levels in African Americans, compared to all other groups.\u003c/p>\n\u003cp>\u003cstrong>Shareable Science\u003c/strong>\u003c/p>\n\u003cp>Butte sees the searchable database as part of a broader trend in science, promoting open access where more scientists are willing to share their raw data with others.\u003c/p>\n\u003cp>“It’s really hundreds of people who have essentially contributed to this work,” he notes.\u003c/p>\n\u003cp>Butte says he hopes his work will bring immunology to the forefront and inspire others to rethink their approach to the field.\u003c/p>\n\u003cp>“If the field of genetics is able to compile large collections consisting of millions of people,” he wonders, “why does immunology lag behind? I want to get people in the field thinking about larger collections of samples that cut across race, age and gender.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"disqusTitle": "CRISPR Cures Inherited Disorder in Mice, Paving Way for Genetic Therapy Before Birth",
"title": "CRISPR Cures Inherited Disorder in Mice, Paving Way for Genetic Therapy Before Birth",
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"content": "\u003cp class=\"danger-zone\">Nearly 40 years after surgeons first \u003ca href=\"https://www.ucsf.edu/news/2011/02/9366/ucsf-surgeon-reflects-performing-worlds-first-fetal-surgery-30-years-ago\" target=\"_blank\" rel=\"noopener\">operated on fetuses\u003c/a> to cure devastating abnormalities, researchers have taken the first step toward curing genetic disease before birth via genome editing: scientists reported on Monday that they used the genome editing technique CRISPR to alter the DNA of laboratory mice in the womb, eliminating an often-fatal liver disease before the animals had even been born.[contextly_sidebar id=\"kLt87B75fzdQ6XiJiVHbmy8S3RDMp2KF\"]\u003c/p>\n\u003cp class=\"danger-zone\">The research, by a team at the University of Pennsylvania and the Children’s Hospital of Philadelphia (CHOP), is a very early proof of concept. But while CRISPRing human fetuses is years away, at best, the success in mice bolsters what Dr. William Peranteau, who co-led the study, calls his dream of curing genetic diseases before birth.\u003c/p>\n\u003cp class=\"danger-zone\">“A lot more animal work needs to be done before we can even think about applying this [fetal genome editing] clinically,” said Peranteau, a pediatric and fetal surgeon at CHOP. “But I think fetal genome editing may be where fetal surgery [which is now routine] once was, and that one day we’ll use it to treat diseases that cause significant morbidity and mortality.”\u003c/p>\n\u003cp>Simon Waddington of University College London, a leader in research to develop fetal gene therapy who was not involved in the new study, called the CRISPR approach “an elegant refinement of the brute-force technology” that’s been the focus of \u003ca href=\"https://www.nature.com/articles/s41591-018-0106-7\" target=\"_blank\" rel=\"noopener\">animal studies\u003c/a> of fetal genetic therapy.\u003c/p>\n\u003cp>The success in mouse fetuses raises the possibility that, even before \u003ca href=\"https://www.statnews.com/2018/07/25/can-gene-therapy-halt-diseases-in-babies-before-theyre-even-born/\">traditional gene therapy\u003c/a> is ready to treat inherited disorders in utero, genome editing might emerge as a safer, more effective approach. In traditional gene therapy, an entire healthy gene is ferried, typically by a virus, into cells containing a disease-causing gene. With CRISPR, only the mutated bit of a defective gene is changed. It’s the difference between retyping a whole 5,000 word document and using Word’s “find and replace” to correct a typo.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“We think this represents a safer and more precise way to make changes in the genome,” said Dr. Kiran Musunuru of Penn and a co-leader of the study. “It’s is the better way forward if you want to take CRISPR into the clinic.”[contextly_sidebar id=\"WspKwnRfkmuJ8Ui6Pu5mBgKtCSqZqfJ5\"]\u003c/p>\n\u003cp>The rationale for fetal genetic therapy is simple: it could halt a disease before it causes irreversible and even fatal damage. In people, the inherited liver disease that the scientists targeted in mice, called hereditary tyrosinemia type 1, starts damaging the liver months before birth. Another rationale: because a fetus’s immune system is immature, it is less likely than even a newborn’s to attack the alien CRISPR molecules.\u003c/p>\n\u003cp>For their study, \u003ca href=\"https://www.nature.com/articles/s41591-018-0184-6\" target=\"_blank\" rel=\"noopener\">published in Nature Medicine\u003c/a>, Musunuru and his colleagues gently opened the uterus of a pregnant mouse, removed the fetus from the amniotic sac, and injected CRISPR into the vitelline vein, which is near the surface of the sac and connects to the liver. “We wanted to make sure we got the genome editor into the liver rather than everywhere else,” Musunuru said. The fetus was then replaced in the uterus and was born normally.\u003c/p>\n\u003cp>Instead of using the original form of CRISPR, which cuts DNA where a gene is mutated and inserts a replacement string of A’s, T’s, C’s, and G’s, the scientists used the form of CRISPR called base editing. \u003ca href=\"https://www.statnews.com/2016/04/20/clever-crispr-advance-unveiled/%5D\">Invented\u003c/a> just two years ago, base editing changes an incorrect DNA letter, or base, to the correct one, such as a C to a T or a G to an A. Its advantage is that it doesn’t need to cut DNA to do this, as CRISPR 1.0 does; those cuts can wreak \u003ca href=\"https://www.statnews.com/2018/07/16/crispr-potential-dna-damage-underestimated/\">genetic havoc\u003c/a>, with unknown consequences for CRISPR’d cells.\u003c/p>\n\u003cp>For a dry run, the scientists first made a CRISPR base editor that changes a \u003ca href=\"https://ghr.nlm.nih.gov/gene/PCSK9\" target=\"_blank\" rel=\"noopener\">gene called PCSK9\u003c/a>, which makes a protein that helps regulate the amount of cholesterol in the bloodstream, into a super-cholesterol-lowering form. When injected into mouse fetuses, the base editor changed liver cells as intended and left other organs alone. Crucially, the mouse mother showed no effects of the CRISPR treatment. After birth, the baby mice had ultra-low cholesterol levels, showing that the CRISPR base editor had worked. Only about 15 percent of the liver cells of the baby mice had been edited, but that fraction remained stable through the animals’ adulthood.[contextly_sidebar id=\"7RKromVt2cYnSDdz2L7SJg04iooF89dn\"]\u003c/p>\n\u003cp>The amount of genetic havoc from the base editing was low: about 2 percent, compared to 40 percent for many uses of traditional CRISPR. And none of the likely spots for “off target” effects — DNA sites that resemble the target and so might be inadvertently edited — showed any sign of being altered.\u003c/p>\n\u003cp>The Philadelphia scientists then tried their technique on hereditary tyrosinemia type 1. HT1, which strikes 1 in 100,000 newborns worldwide, is \u003ca href=\"https://rarediseases.info.nih.gov/diseases/2658/tyrosinemia-type-1\" target=\"_blank\" rel=\"noopener\">caused by\u003c/a> any of several mutations in a \u003ca href=\"https://ghr.nlm.nih.gov/gene/FAH\" target=\"_blank\" rel=\"noopener\">gene called FAH\u003c/a>. All the mutations cause the build-up of toxic breakdown products of the amino acid tyrosine, a component of protein, and ultimately destroy the liver. Treatment with the drug nitisinone and a strict tyrosine-free diet is not always effective, with the result that children sometimes develop fatal liver failure or liver cancer.\u003c/p>\n\u003cp>The scientists used their base editor on a gene related to the disease-causing one. If this gene, \u003ca href=\"https://ghr.nlm.nih.gov/gene/HPD\" target=\"_blank\" rel=\"noopener\">called HPD\u003c/a>, is disabled, then no toxic metabolites of tyrosine ever get to where FAH is unable to handle them.\u003c/p>\n\u003cp>Changing a C to a T in the HPD gene disabled it. No toxic molecules built up in the livers of the fetal mice. No other organs showed signs of editing, no off-target effects were detected, and having only 15 percent of their liver cells edited was enough to cure the mice and keep them cured into adulthood. “We weren’t expecting it, but the genome-edited mice did much better” than mice treated with nitisinone, Musunuru said. “They survived longer and gained more weight.”\u003c/p>\n\u003cp>The scientists hope to study fetal base editing for other severe congenital diseases. It remains to be seen whether this technique or conventional gene therapy, which provides an entire replacement gene, will work better.\u003c/p>\n\u003cp>“I’d consider that CRISPR isn’t a replacement” for the latter, Waddington said, “but will be an additional tool” for curing genetic diseases in the womb.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003ci>\u003cspan style=\"font-weight: 400\">This \u003c/span>\u003c/i>\u003ca href=\"https://www.statnews.com/2018/10/08/crispr-cures-inherited-disorder-in-mice-paving-way-for-genetic-therapy-before-birth/\" target=\"_blank\" rel=\"noopener\">\u003ci>\u003cspan style=\"font-weight: 400\">story\u003c/span>\u003c/i>\u003c/a>\u003ci>\u003cspan style=\"font-weight: 400\"> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/span>\u003c/i>\u003cspan style=\"font-weight: 400\">\u003cbr>\n\u003c/span>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp class=\"danger-zone\">Nearly 40 years after surgeons first \u003ca href=\"https://www.ucsf.edu/news/2011/02/9366/ucsf-surgeon-reflects-performing-worlds-first-fetal-surgery-30-years-ago\" target=\"_blank\" rel=\"noopener\">operated on fetuses\u003c/a> to cure devastating abnormalities, researchers have taken the first step toward curing genetic disease before birth via genome editing: scientists reported on Monday that they used the genome editing technique CRISPR to alter the DNA of laboratory mice in the womb, eliminating an often-fatal liver disease before the animals had even been born.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp class=\"danger-zone\">The research, by a team at the University of Pennsylvania and the Children’s Hospital of Philadelphia (CHOP), is a very early proof of concept. But while CRISPRing human fetuses is years away, at best, the success in mice bolsters what Dr. William Peranteau, who co-led the study, calls his dream of curing genetic diseases before birth.\u003c/p>\n\u003cp class=\"danger-zone\">“A lot more animal work needs to be done before we can even think about applying this [fetal genome editing] clinically,” said Peranteau, a pediatric and fetal surgeon at CHOP. “But I think fetal genome editing may be where fetal surgery [which is now routine] once was, and that one day we’ll use it to treat diseases that cause significant morbidity and mortality.”\u003c/p>\n\u003cp>Simon Waddington of University College London, a leader in research to develop fetal gene therapy who was not involved in the new study, called the CRISPR approach “an elegant refinement of the brute-force technology” that’s been the focus of \u003ca href=\"https://www.nature.com/articles/s41591-018-0106-7\" target=\"_blank\" rel=\"noopener\">animal studies\u003c/a> of fetal genetic therapy.\u003c/p>\n\u003cp>The success in mouse fetuses raises the possibility that, even before \u003ca href=\"https://www.statnews.com/2018/07/25/can-gene-therapy-halt-diseases-in-babies-before-theyre-even-born/\">traditional gene therapy\u003c/a> is ready to treat inherited disorders in utero, genome editing might emerge as a safer, more effective approach. In traditional gene therapy, an entire healthy gene is ferried, typically by a virus, into cells containing a disease-causing gene. With CRISPR, only the mutated bit of a defective gene is changed. It’s the difference between retyping a whole 5,000 word document and using Word’s “find and replace” to correct a typo.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“We think this represents a safer and more precise way to make changes in the genome,” said Dr. Kiran Musunuru of Penn and a co-leader of the study. “It’s is the better way forward if you want to take CRISPR into the clinic.”\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The rationale for fetal genetic therapy is simple: it could halt a disease before it causes irreversible and even fatal damage. In people, the inherited liver disease that the scientists targeted in mice, called hereditary tyrosinemia type 1, starts damaging the liver months before birth. Another rationale: because a fetus’s immune system is immature, it is less likely than even a newborn’s to attack the alien CRISPR molecules.\u003c/p>\n\u003cp>For their study, \u003ca href=\"https://www.nature.com/articles/s41591-018-0184-6\" target=\"_blank\" rel=\"noopener\">published in Nature Medicine\u003c/a>, Musunuru and his colleagues gently opened the uterus of a pregnant mouse, removed the fetus from the amniotic sac, and injected CRISPR into the vitelline vein, which is near the surface of the sac and connects to the liver. “We wanted to make sure we got the genome editor into the liver rather than everywhere else,” Musunuru said. The fetus was then replaced in the uterus and was born normally.\u003c/p>\n\u003cp>Instead of using the original form of CRISPR, which cuts DNA where a gene is mutated and inserts a replacement string of A’s, T’s, C’s, and G’s, the scientists used the form of CRISPR called base editing. \u003ca href=\"https://www.statnews.com/2016/04/20/clever-crispr-advance-unveiled/%5D\">Invented\u003c/a> just two years ago, base editing changes an incorrect DNA letter, or base, to the correct one, such as a C to a T or a G to an A. Its advantage is that it doesn’t need to cut DNA to do this, as CRISPR 1.0 does; those cuts can wreak \u003ca href=\"https://www.statnews.com/2018/07/16/crispr-potential-dna-damage-underestimated/\">genetic havoc\u003c/a>, with unknown consequences for CRISPR’d cells.\u003c/p>\n\u003cp>For a dry run, the scientists first made a CRISPR base editor that changes a \u003ca href=\"https://ghr.nlm.nih.gov/gene/PCSK9\" target=\"_blank\" rel=\"noopener\">gene called PCSK9\u003c/a>, which makes a protein that helps regulate the amount of cholesterol in the bloodstream, into a super-cholesterol-lowering form. When injected into mouse fetuses, the base editor changed liver cells as intended and left other organs alone. Crucially, the mouse mother showed no effects of the CRISPR treatment. After birth, the baby mice had ultra-low cholesterol levels, showing that the CRISPR base editor had worked. Only about 15 percent of the liver cells of the baby mice had been edited, but that fraction remained stable through the animals’ adulthood.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The amount of genetic havoc from the base editing was low: about 2 percent, compared to 40 percent for many uses of traditional CRISPR. And none of the likely spots for “off target” effects — DNA sites that resemble the target and so might be inadvertently edited — showed any sign of being altered.\u003c/p>\n\u003cp>The Philadelphia scientists then tried their technique on hereditary tyrosinemia type 1. HT1, which strikes 1 in 100,000 newborns worldwide, is \u003ca href=\"https://rarediseases.info.nih.gov/diseases/2658/tyrosinemia-type-1\" target=\"_blank\" rel=\"noopener\">caused by\u003c/a> any of several mutations in a \u003ca href=\"https://ghr.nlm.nih.gov/gene/FAH\" target=\"_blank\" rel=\"noopener\">gene called FAH\u003c/a>. All the mutations cause the build-up of toxic breakdown products of the amino acid tyrosine, a component of protein, and ultimately destroy the liver. Treatment with the drug nitisinone and a strict tyrosine-free diet is not always effective, with the result that children sometimes develop fatal liver failure or liver cancer.\u003c/p>\n\u003cp>The scientists used their base editor on a gene related to the disease-causing one. If this gene, \u003ca href=\"https://ghr.nlm.nih.gov/gene/HPD\" target=\"_blank\" rel=\"noopener\">called HPD\u003c/a>, is disabled, then no toxic metabolites of tyrosine ever get to where FAH is unable to handle them.\u003c/p>\n\u003cp>Changing a C to a T in the HPD gene disabled it. No toxic molecules built up in the livers of the fetal mice. No other organs showed signs of editing, no off-target effects were detected, and having only 15 percent of their liver cells edited was enough to cure the mice and keep them cured into adulthood. “We weren’t expecting it, but the genome-edited mice did much better” than mice treated with nitisinone, Musunuru said. “They survived longer and gained more weight.”\u003c/p>\n\u003cp>The scientists hope to study fetal base editing for other severe congenital diseases. It remains to be seen whether this technique or conventional gene therapy, which provides an entire replacement gene, will work better.\u003c/p>\n\u003cp>“I’d consider that CRISPR isn’t a replacement” for the latter, Waddington said, “but will be an additional tool” for curing genetic diseases in the womb.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>https://www.youtube.com/watch?v=lyu7v7nWzfo\u003c/p>\n\u003cp>\u003cem>Part 4 of the \u003c/em>TED Radio Hour \u003cem>episode \u003c/em>\u003ca href=\"http://www.npr.org/programs/ted-radio-hour/485704159/what-makes-us-us\" target=\"_blank\" rel=\"noopener\">What Makes Us ... Us\u003c/a>\u003c/p>\n\u003cp>\u003cstrong>About Anil Seth's TED Talk\u003c/strong>\u003c/p>\n\u003cp>When we look around, it feels like we're seeing an objective reality. But neuroscientist Anil Seth says everything we perceive, from objects to emotions, is an act of informed guesswork by the brain.\u003c/p>\n\u003cp>\u003cstrong>About Anil Seth\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"http://www.anilseth.com/\">Anil Seth\u003c/a> is a professor of cognitive and computational neuroscience at the University of Sussex, where he studies consciousness and its role in health and disease.\u003c/p>\n\u003cp>He co-directs the \u003ca href=\"http://www.sussex.ac.uk/sackler/\" target=\"_blank\" rel=\"noopener\">Sackler Centre for Consciousness Science\u003c/a> and is the Editor-in-Chief of the academic journal \u003cem>Neuroscience of Consciousness\u003c/em>. Seth was also the 2017 President of the British Science Association (Psychology Section). He is the co-author of \u003ca href=\"http://www.anilseth.com/books\" target=\"_blank\" rel=\"noopener\">\u003cem>30-Second Brain\u003c/em>,\u003c/a> a best-seller that explores how the brain works.\u003c/p>\n\u003cp>Seth is a regular contributor to the \u003cem>New Scientist, The Guardian\u003c/em>, and the BBC.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Anil+Seth%3A+How+Does+Your+Brain+Construct+Your+Conscious+Reality%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003c/p>\n",
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"content": "\u003cp>Paige Thesing has struggled with insomnia since high school. “It takes me a really long time to fall asleep — about four hours,” she says. For years, her mornings were groggy and involved a “lot of coffee.”[contextly_sidebar id=”SWkBBNCnUWhPf7KOuvUyV7If0Ca3ug47”]\u003c/p>\n\u003cp>After a year of trying sleep medication prescribed by her doctor, she turned to the internet for alternate solutions. About four months ago, she settled on a mobile phone meditation app called \u003ca href=\"https://www.inscape.life/\" target=\"_blank\" rel=\"noopener\">INSCAPE\u003c/a>.\u003c/p>\n\u003cp>“It’s about a 30-minute soundtrack, and it starts with a woman kind of telling you to relax and instructing your breathing,” explains Thesing. “Then it goes into sounds — relaxing noises. There’s wind chimes, some atmospheric music playing…”\u003c/p>\n\u003cp>She uses the app every night and falls asleep within 15 or 20 minutes. “So, definitely a big improvement from four hours,” she says.\u003c/p>\n\u003cp>Thesing is not alone. Chronic insomnia affects an estimated \u003ca href=\"https://www.ajmc.com/journals/supplement/2006/2006-05-vol12-n8suppl/may06-2307ps214-s220\" target=\"_blank\" rel=\"noopener\">10-15 percent of adults\u003c/a>, and another 25-35 percent struggle with sleep issues occasionally. And like Thesing, a growing number of insomniacs are turning to mobile phone apps to lull them to sleep.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>On \u003ca href=\"https://twitter.com/NPRHealth/status/1046884648167624711\" target=\"_blank\" rel=\"noopener\">Twitter\u003c/a> and Facebook, NPR asked its audience if they have used a mobile phone app to help manage insomnia. Nearly 100 people wrote back suggesting a range of apps, including podcasts created to put a listener to sleep.\u003c/p>\n\u003cp>“These are usually relaxation strategies, white noise, meditation,” \u003ca href=\"https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=35378\" target=\"_blank\" rel=\"noopener\">Jason Ong\u003c/a>, an associate professor of neurology specializing in sleep at Northwestern University’s Feinberg School of Medicine. He studies non-pharmacological treatments for various sleep disorders and treats patients at the university’s Sleep Medicine clinic. “It’s not that there’s something wrong with those apps. It’s a reasonable first thing to try.”[contextly_sidebar id=”ljN7S8LuvqENw8QrvBPFbhASn6EIv1oE”]\u003c/p>\n\u003cp>But, he adds, these kinds of apps aren’t based on scientifically-proven solutions, and they don’t really fix the problem of why someone is not sleeping.\u003c/p>\n\u003cp>Ong wanted to do something about that, so a few years ago, he consulted for a team that developed an app that uses a science-based approach to address insomnia called \u003ca href=\"https://www.sleepio.com/cbt-for-insomnia/\" target=\"_blank\" rel=\"noopener\">Sleepio\u003c/a>. (However, he doesn’t have any ongoing financial interest in the product, he says.)\u003c/p>\n\u003cp>Sleepio and a few other apps like \u003ca href=\"http://www.myshuti.com/\" target=\"_blank\" rel=\"noopener\">SHUT-i\u003c/a> and a free one developed by the Veterans Administration use the most sustainable and \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/15451764\" target=\"_blank\" rel=\"noopener\">evidence-based\u003c/a> solution for insomnia. It’s a kind of therapy called Cognitive Behavioral Therapy for Insomnia — \u003ca href=\"https://www.sleepfoundation.org/sleep-news/cognitive-behavioral-therapy-insomnia\" target=\"_blank\" rel=\"noopener\">CBT-I\u003c/a> for short, he says. It helps the patient understand the biology of sleep and gives them a bag of tools and tricks to change their own thought patterns and behaviors to treat their underlying sleep issues.\u003c/p>\n\u003cp>“CBT for insomnia is a specific package … [that] includes different techniques like spending less time in bed [and] what to do if you are in bed and can’t sleep,” says Ong. “It’s teaching you how to change your behavior to better work with your brain to give you confidence that you’re going to be able to sleep on a regular basis.”\u003c/p>\n\u003cp>It may be surprising to us, but our own thought patterns and sleep habits \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3621793/\" target=\"_blank\" rel=\"noopener\">affect our biology\u003c/a>, in this case how our brains regulate sleep. “If you modify some of your behaviors, you can work better with how your brain regulates sleep and wake,” he says.\u003c/p>\n\u003cp>The American College of Physicians \u003ca href=\"https://www.acponline.org/acp-newsroom/acp-recommends-cognitive-behavioral-therapy-as-initial-treatment-for-chronic-insomnia\" target=\"_blank\" rel=\"noopener\">first recommended\u003c/a> Cognitive Behavioral Therapy for Insomnia as the first-line treatment for insomnia in 2016. “The evidence is quite strong to support the effectiveness of CBT-I treatment and there really aren’t a lot of side effects,” says Ong. And, because it changes behavior, “in the long run CBT-I tends to perform quite well in maintaining the benefits.”\u003c/p>\n\u003cp>In the past the only way for people to get Cognitive Behavioral Therapy for Insomnia was to see a therapist, now they can access the therapy on their mobile phones.\u003c/p>\n\u003cp>“In Sleepio, it’s like an avatar of a real therapist that’s walking the patient through that process,” explains Ong. Sleepio also allows users to keep a sleep diary so the app can use its algorithm to suggest a better bedtime schedule. It also reminds people to get up when they’ve spent too much time in bed trying to fall asleep, for example.[contextly_sidebar id=”wEwpbDeWifEPnKULBpzGtSdpZ0ZUBzcu”]\u003c/p>\n\u003cp>Like a real therapist, the apps that use Cognitive Behavior Therapy for Insomnia also provide practical tools to help the user worry less about their sleep and over time, be less anxious and more confident about their ability get a good night’s rest. “It’s very similar to what we do face-to-face with patients,” adds Ong.\u003c/p>\n\u003cp>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5427093/\" target=\"_blank\" rel=\"noopener\">Studies show\u003c/a> that CBT-I delivered digitally through mobile phone apps is effective in treating insomnia. And a \u003ca href=\"https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2704019\" target=\"_blank\" rel=\"noopener\">recent study\u003c/a> of Sleepio by Ong and the team that developed the product found that participants who used the product reported an improvement in insomnia symptoms and overall wellbeing.\u003c/p>\n\u003cp>“It’s an impressive study in size and scope,” says \u003ca href=\"http://www.johntorousmd.com/\" target=\"_blank\" rel=\"noopener\">John Torous\u003c/a>, the director of digital psychiatry at Beth Israel Deaconess Medical Center. “But like any study, we have to interpret it within reason.”\u003c/p>\n\u003cp>The participants in the study were mostly white and female, he notes, and so it’s hard to generalize the findings to the larger population. And, he adds that the study was designed and funded by Big Health, the company that created the app and is now marketing it.\u003c/p>\n\u003cp>Also, Sleepio is only available on a limited basis. You can get it through employers, health insurance and national health systems at the moment, says Mike Radocchia, the marketing and business development lead at Big Health. Although the company does give it to researchers and charities for free.\u003c/p>\n\u003cp>And while apps that use Cognitive Behavior Therapy for Insomnia cost less than in-person therapy, they can be pricey. A 26-week subscription of SHUTi \u003ca href=\"http://www.myshuti.com/shuti-pricing/\" target=\"_blank\" rel=\"noopener\">costs $149\u003c/a>.\u003c/p>\n\u003cp>That’s why Torous often directs his patients with insomnia to a free app developed by the Veterans Administration called \u003ca href=\"https://mobile.va.gov/app/cbt-i-coach\" target=\"_blank\" rel=\"noopener\">CBT-I Coach\u003c/a>.\u003c/p>\n\u003cp>“Anyone can access it. You don’t have to be a veteran,” Torous says.\u003c/p>\n\u003cp>\u003ca href=\"http://www.nextbreathcounseling.com/credentials/\" target=\"_blank\" rel=\"noopener\">Jake Hanks\u003c/a>, a mental health counselor based in Glenwood Springs, Colorado, agrees. “CBT-I Coach would be my absolute favorite,” he says. “It includes a lot of the cognitive restructuring, the true things about sleep that we want patients to keep in mind.” And so, he too, recommends the free app to his patients.\u003c/p>\n\u003cp>However, Torous notes that these apps don’t work for everyone. The recent study by Ong and his colleagues hints at why.\u003c/p>\n\u003cp>“Even in this clinical study, less than 50 percent [of people who were assigned to use the app in a randomized controlled trial] are able to make it through the entire course of CBT delivered through digital platforms,” he notes. “For some people it may be hard to make it through all the sessions of CBT.”\u003c/p>\n\u003cp>This is true of most health and wellness apps, he says. Torous \u003ca href=\"https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2616170\" target=\"_blank\" rel=\"noopener\">has studied\u003c/a> this and found that of the 10,000 mental health apps out there, very few are actually being used. “I don’t think we really understand how people are using technology towards their health and recovery,” he notes.[contextly_sidebar id=”LqkvTN1dfENdC3n50jRUdIl6PSPHOHGb”]\u003c/p>\n\u003cp>But in some ways, he says, people with insomnia may be ahead of scientists in figuring out what works well for them.\u003c/p>\n\u003cp>“If you find something that works [for you], I think that’s always a good first step,” he says. “Quick fixes or simple solutions may get you feeling better right away.”\u003c/p>\n\u003cp>But, he notes, insomnia is a complex disorder with many underlying causes. Sometimes it can be caused by a medical condition that’s easily treatable, like a thyroid problem, he adds.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>So, no matter what app you are considering, always talk to your doctor about your sleep issues, he advises. “Until you know the diagnosis or what you’re working with, you don’t want to start treating something that’s not what you think it is.”\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg decoding=\"async\" src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Some+Apps+May+Help+Curb+Insomnia%2C+Others+Just+Put+You+To+Sleep&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Paige Thesing has struggled with insomnia since high school. “It takes me a really long time to fall asleep — about four hours,” she says. For years, her mornings were groggy and involved a “lot of coffee.”\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>After a year of trying sleep medication prescribed by her doctor, she turned to the internet for alternate solutions. About four months ago, she settled on a mobile phone meditation app called \u003ca href=\"https://www.inscape.life/\" target=\"_blank\" rel=\"noopener\">INSCAPE\u003c/a>.\u003c/p>\n\u003cp>“It’s about a 30-minute soundtrack, and it starts with a woman kind of telling you to relax and instructing your breathing,” explains Thesing. “Then it goes into sounds — relaxing noises. There’s wind chimes, some atmospheric music playing…”\u003c/p>\n\u003cp>She uses the app every night and falls asleep within 15 or 20 minutes. “So, definitely a big improvement from four hours,” she says.\u003c/p>\n\u003cp>Thesing is not alone. Chronic insomnia affects an estimated \u003ca href=\"https://www.ajmc.com/journals/supplement/2006/2006-05-vol12-n8suppl/may06-2307ps214-s220\" target=\"_blank\" rel=\"noopener\">10-15 percent of adults\u003c/a>, and another 25-35 percent struggle with sleep issues occasionally. And like Thesing, a growing number of insomniacs are turning to mobile phone apps to lull them to sleep.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>On \u003ca href=\"https://twitter.com/NPRHealth/status/1046884648167624711\" target=\"_blank\" rel=\"noopener\">Twitter\u003c/a> and Facebook, NPR asked its audience if they have used a mobile phone app to help manage insomnia. Nearly 100 people wrote back suggesting a range of apps, including podcasts created to put a listener to sleep.\u003c/p>\n\u003cp>“These are usually relaxation strategies, white noise, meditation,” \u003ca href=\"https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=35378\" target=\"_blank\" rel=\"noopener\">Jason Ong\u003c/a>, an associate professor of neurology specializing in sleep at Northwestern University’s Feinberg School of Medicine. He studies non-pharmacological treatments for various sleep disorders and treats patients at the university’s Sleep Medicine clinic. “It’s not that there’s something wrong with those apps. It’s a reasonable first thing to try.”\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>But, he adds, these kinds of apps aren’t based on scientifically-proven solutions, and they don’t really fix the problem of why someone is not sleeping.\u003c/p>\n\u003cp>Ong wanted to do something about that, so a few years ago, he consulted for a team that developed an app that uses a science-based approach to address insomnia called \u003ca href=\"https://www.sleepio.com/cbt-for-insomnia/\" target=\"_blank\" rel=\"noopener\">Sleepio\u003c/a>. (However, he doesn’t have any ongoing financial interest in the product, he says.)\u003c/p>\n\u003cp>Sleepio and a few other apps like \u003ca href=\"http://www.myshuti.com/\" target=\"_blank\" rel=\"noopener\">SHUT-i\u003c/a> and a free one developed by the Veterans Administration use the most sustainable and \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/15451764\" target=\"_blank\" rel=\"noopener\">evidence-based\u003c/a> solution for insomnia. It’s a kind of therapy called Cognitive Behavioral Therapy for Insomnia — \u003ca href=\"https://www.sleepfoundation.org/sleep-news/cognitive-behavioral-therapy-insomnia\" target=\"_blank\" rel=\"noopener\">CBT-I\u003c/a> for short, he says. It helps the patient understand the biology of sleep and gives them a bag of tools and tricks to change their own thought patterns and behaviors to treat their underlying sleep issues.\u003c/p>\n\u003cp>“CBT for insomnia is a specific package … [that] includes different techniques like spending less time in bed [and] what to do if you are in bed and can’t sleep,” says Ong. “It’s teaching you how to change your behavior to better work with your brain to give you confidence that you’re going to be able to sleep on a regular basis.”\u003c/p>\n\u003cp>It may be surprising to us, but our own thought patterns and sleep habits \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3621793/\" target=\"_blank\" rel=\"noopener\">affect our biology\u003c/a>, in this case how our brains regulate sleep. “If you modify some of your behaviors, you can work better with how your brain regulates sleep and wake,” he says.\u003c/p>\n\u003cp>The American College of Physicians \u003ca href=\"https://www.acponline.org/acp-newsroom/acp-recommends-cognitive-behavioral-therapy-as-initial-treatment-for-chronic-insomnia\" target=\"_blank\" rel=\"noopener\">first recommended\u003c/a> Cognitive Behavioral Therapy for Insomnia as the first-line treatment for insomnia in 2016. “The evidence is quite strong to support the effectiveness of CBT-I treatment and there really aren’t a lot of side effects,” says Ong. And, because it changes behavior, “in the long run CBT-I tends to perform quite well in maintaining the benefits.”\u003c/p>\n\u003cp>In the past the only way for people to get Cognitive Behavioral Therapy for Insomnia was to see a therapist, now they can access the therapy on their mobile phones.\u003c/p>\n\u003cp>“In Sleepio, it’s like an avatar of a real therapist that’s walking the patient through that process,” explains Ong. Sleepio also allows users to keep a sleep diary so the app can use its algorithm to suggest a better bedtime schedule. It also reminds people to get up when they’ve spent too much time in bed trying to fall asleep, for example.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Like a real therapist, the apps that use Cognitive Behavior Therapy for Insomnia also provide practical tools to help the user worry less about their sleep and over time, be less anxious and more confident about their ability get a good night’s rest. “It’s very similar to what we do face-to-face with patients,” adds Ong.\u003c/p>\n\u003cp>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5427093/\" target=\"_blank\" rel=\"noopener\">Studies show\u003c/a> that CBT-I delivered digitally through mobile phone apps is effective in treating insomnia. And a \u003ca href=\"https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2704019\" target=\"_blank\" rel=\"noopener\">recent study\u003c/a> of Sleepio by Ong and the team that developed the product found that participants who used the product reported an improvement in insomnia symptoms and overall wellbeing.\u003c/p>\n\u003cp>“It’s an impressive study in size and scope,” says \u003ca href=\"http://www.johntorousmd.com/\" target=\"_blank\" rel=\"noopener\">John Torous\u003c/a>, the director of digital psychiatry at Beth Israel Deaconess Medical Center. “But like any study, we have to interpret it within reason.”\u003c/p>\n\u003cp>The participants in the study were mostly white and female, he notes, and so it’s hard to generalize the findings to the larger population. And, he adds that the study was designed and funded by Big Health, the company that created the app and is now marketing it.\u003c/p>\n\u003cp>Also, Sleepio is only available on a limited basis. You can get it through employers, health insurance and national health systems at the moment, says Mike Radocchia, the marketing and business development lead at Big Health. Although the company does give it to researchers and charities for free.\u003c/p>\n\u003cp>And while apps that use Cognitive Behavior Therapy for Insomnia cost less than in-person therapy, they can be pricey. A 26-week subscription of SHUTi \u003ca href=\"http://www.myshuti.com/shuti-pricing/\" target=\"_blank\" rel=\"noopener\">costs $149\u003c/a>.\u003c/p>\n\u003cp>That’s why Torous often directs his patients with insomnia to a free app developed by the Veterans Administration called \u003ca href=\"https://mobile.va.gov/app/cbt-i-coach\" target=\"_blank\" rel=\"noopener\">CBT-I Coach\u003c/a>.\u003c/p>\n\u003cp>“Anyone can access it. You don’t have to be a veteran,” Torous says.\u003c/p>\n\u003cp>\u003ca href=\"http://www.nextbreathcounseling.com/credentials/\" target=\"_blank\" rel=\"noopener\">Jake Hanks\u003c/a>, a mental health counselor based in Glenwood Springs, Colorado, agrees. “CBT-I Coach would be my absolute favorite,” he says. “It includes a lot of the cognitive restructuring, the true things about sleep that we want patients to keep in mind.” And so, he too, recommends the free app to his patients.\u003c/p>\n\u003cp>However, Torous notes that these apps don’t work for everyone. The recent study by Ong and his colleagues hints at why.\u003c/p>\n\u003cp>“Even in this clinical study, less than 50 percent [of people who were assigned to use the app in a randomized controlled trial] are able to make it through the entire course of CBT delivered through digital platforms,” he notes. “For some people it may be hard to make it through all the sessions of CBT.”\u003c/p>\n\u003cp>This is true of most health and wellness apps, he says. Torous \u003ca href=\"https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2616170\" target=\"_blank\" rel=\"noopener\">has studied\u003c/a> this and found that of the 10,000 mental health apps out there, very few are actually being used. “I don’t think we really understand how people are using technology towards their health and recovery,” he notes.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>But in some ways, he says, people with insomnia may be ahead of scientists in figuring out what works well for them.\u003c/p>\n\u003cp>“If you find something that works [for you], I think that’s always a good first step,” he says. “Quick fixes or simple solutions may get you feeling better right away.”\u003c/p>\n\u003cp>But, he notes, insomnia is a complex disorder with many underlying causes. Sometimes it can be caused by a medical condition that’s easily treatable, like a thyroid problem, he adds.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>So, no matter what app you are considering, always talk to your doctor about your sleep issues, he advises. “Until you know the diagnosis or what you’re working with, you don’t want to start treating something that’s not what you think it is.”\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg decoding=\"async\" src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Some+Apps+May+Help+Curb+Insomnia%2C+Others+Just+Put+You+To+Sleep&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "New Smartphone App Aims to Monitor Your Mental Health",
"title": "New Smartphone App Aims to Monitor Your Mental Health",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp class=\"danger-zone\">In the world of digital health, Silicon Valley-based \u003ca href=\"https://www.statnews.com/2017/08/07/mindstrong-insel-mental-illness/\" target=\"_blank\" rel=\"noopener\">Mindstrong\u003c/a> stands out. It has a star-studded team and tens of millions in venture capital funding, including from Jeff Bezos’ VC firm.[contextly_sidebar id=\"KMLJnak6yPOdRS3TfVoiDTc6a7Cm51Xf\"]\u003c/p>\n\u003cp class=\"danger-zone\">It also has a captivating idea: that its app, based on cognitive functioning research, can help detect troubling mental health patterns by collecting data on a person’s smartphone usage — how quickly they type or scroll, for instance.\u003c/p>\n\u003cp class=\"danger-zone\">The promise of that technology has helped Mindstrong build incredible momentum since it launched last year; already more than a dozen counties in California have agreed to deploy the company’s app to patients.\u003c/p>\n\u003cp class=\"\">Does the app live up to its promise? There’s no way to tell. Almost no one outside the company has any idea whether it works. Most of the company’s key promises or claims aren’t yet backed up by published, peer-reviewed data — leading some experts to wonder if the technology is ready for the real world.\u003c/p>\n\u003cp class=\"\">“I wouldn’t waste all that time and money in the wild until they get sure that some of those things are as specific as they hope they are,” said Rosalind Picard, a researcher at MIT Media Lab who is familiar with Mindstrong’s work and tries to use data from smartphones and wearables to detect a person’s mood.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Even as one of the company’s executives, Dr. Tom Insel, acknowledged to STAT that the app isn’t perfect, the company’s CEO emphasized that Mindstrong could provide unprecedented insight into conditions like depression.[contextly_sidebar id=\"Kw9tNYwAAP3TxDDlzs24FDdim0qufSVP\"]\u003c/p>\n\u003cp>Mindstrong is not alone in pushing the frontiers of smartphone-based digital health. Many companies use so-called digital phenotyping, collecting scientific data on a person’s digital life, to gain insights into his or her physical or mental health.\u003c/p>\n\u003cp>The company’s app collects information about how people are typing and runs it through a machine learning algorithm to determine which data can predict their emotional state. Mindstrong has already used it in controlled clinical settings and trials — including one run by a company developing new antidepressants and another done in a \u003ca href=\"https://www.statnews.com/2018/09/24/ketamine-clinics-severe-depression-treatment/\" target=\"_blank\" rel=\"noopener\">ketamine clinic\u003c/a>. The app is available in Apple’s app store, but requires a participant code to access it.\u003c/p>\n\u003cp>“We’ve done the validation work against the gold-standard clinical tests for depression, for anxiety, for cognitive decline, whether it’s memory or executive function,” said Dr. Paul Dagum, the company’s founder. “We’re confident, we’re already seeing some really exciting results.”\u003c/p>\n\u003cp>In the last year, Mindstrong’s footprint and reach have already grown exponentially. The Palo Alto-based company’s workforce has doubled to 42 employees and it made \u003ca href=\"https://www.hsph.harvard.edu/magazine/magazine_article/philanthropic-impact-digital-phenotyping/\" target=\"_blank\" rel=\"noopener\">a sizable gift\u003c/a> to Harvard’s school of public health. In February, it launched a partnership with Takeda to develop new biomarkers that will be able to aid the pharmaceutical giant’s clinical trials for depression treatments.\u003c/p>\n\u003cp>The idea is to use that data to establish a “normal” pattern — so it can be compared against someone’s typing habits on any given day. If the habits look off, slower or more agitated than normal, the app can alert a health care provider.\u003c/p>\n\u003cp>Abnormal patterns, Mindstrong says, might show up if a person is more depressed or anxious, or if just about anything else about their mental health changes. When asked which disorders Mindstrong might be able to detect, Dagum replied, “all of them.” (Dagum, a data scientist and physician, founded the company in 2017 with Rick Klausner, the founder and director of CAR-T pioneer Juno Therapeutics and \u003ca href=\"https://www.statnews.com/2018/06/02/grail-cancer-blood-test-asco/\" target=\"_blank\" rel=\"noopener\">Grail\u003c/a>, a liquid biopsy company.)[contextly_sidebar id=\"XHhLlvPBCoPTlN54jyme2G0wpse1GITN\"]\u003c/p>\n\u003cp>Mindstrong officials told STAT that among their most encouraging results is that its app can even predict how a person will feel next week, or at least how a person will perform on the Hamilton Rating Scale for depression — kind of like a weather app for your mood.\u003c/p>\n\u003cp>The data behind this claim is being published soon, said Insel, who is the former head of the National Institute of Mental Health and came to the company in 2017 after a short stint at \u003ca href=\"https://www.statnews.com/2016/03/28/google-life-sciences-exodus/\" target=\"_blank\" rel=\"noopener\">Verily\u003c/a>.\u003c/p>\n\u003cp>The app can detect a seven-point change on the Hamilton scale, Insel said. That kind of difference could indicate a patient who is not normally depressed now shows signs of mild or moderate depression, or that a person with moderate depression is now showing signs of a very severe condition.\u003c/p>\n\u003cp>“For a clinician and for someone taking care of a patient, knowing that, it could be very, very powerful,” Dagum said.\u003c/p>\n\u003cp>The company’s momentum has taken it to the cusp of a real-world deployment in California. About 15 counties — including the most populous county in the United States, Los Angeles County — will be spending about $60 million over the next four years to bring companies like Mindstrong and other apps into their health care system.\u003c/p>\n\u003cp>These counties hope apps will help them get better services to people with mental illnesses like depression, schizophrenia, bipolar disorder, and post-traumatic stress disorder.\u003c/p>\n\u003cp>The Mindstrong program itself is limited: Patients can choose voluntarily whether to use the app, which will be free to them, and that decision won’t affect the rest of the mental health services they can access.\u003c/p>\n\u003cp>\u003cstrong>Lack of Public Data\u003c/strong>\u003c/p>\n\u003cp>So far, the Mindstrong app has only been used in controlled clinical settings and trials — including one run by a company developing new antidepressants and another done in a ketamine clinic. The company has also claimed that a “\u003ca href=\"https://mindstronghealth.com/clinical-programs/\" target=\"_blank\" rel=\"noopener\">nationwide employer\u003c/a>” and private substance abuse clinics in D.C. are using the app.[contextly_sidebar id=\"KGoxoWR6m8MUKnLishPvyacpod0HWpt7\"]\u003c/p>\n\u003cp>But other than the change on the Hamilton scale — which hasn’t yet gone through peer review and was disclosed to STAT in an interview — almost no data about how well Mindstrong’s technology works is available to independent observers.\u003c/p>\n\u003cp>The company’s website describes five completed clinical trials, but it has not yet published the results of any. Only a handful of other published works — all from the last year — have hinted at how well it works or its scope with data to back up the claims.\u003c/p>\n\u003cp>The company \u003ca href=\"https://www.nature.com/articles/s41746-018-0018-4\" target=\"_blank\" rel=\"noopener\">published\u003c/a> a 27-person pilot study in the journal npj Digital Medicine earlier this year. Dagum is also an author on a poster \u003ca href=\"https://www.nature.com/articles/npp2017265#t122-assessing-anhedonia-with-quantitative-tasks-digital-and-patient-reported-measures-in-a-multicenter-doubleblind-trial-with-btrx246040-for-the-treatment-of-major-depressive-disorder\" target=\"_blank\" rel=\"noopener\">presentation\u003c/a> given at the American College of Neuropsychopharmacology’s 2017 conference, another \u003ca href=\"https://isctm.org/public_access/Feb2018/PDFs/Smith-poster.pdf\" target=\"_blank\" rel=\"noopener\">poster\u003c/a> that reported results from a very wide variety of digital phenotyping techniques — not just typing — and a \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29074231\" target=\"_blank\" rel=\"noopener\">paper\u003c/a> describing a clinical trial protocol — not results.\u003c/p>\n\u003cp>As Mindstrong steps toward a wider rollout, the scientific studies behind its claims will matter. Federal regulators, for one, have \u003ca href=\"https://www.ftc.gov/news-events/blogs/business-blog/2016/01/mind-gap-what-lumosity-promised-vs-what-it-could-prove\" target=\"_blank\" rel=\"noopener\">cracked down\u003c/a> on \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2016/12/marketers-blood-pressure-app-settle-ftc-charges-regarding\" target=\"_blank\" rel=\"noopener\">commercial apps\u003c/a>that misleadingly reference a study’s conclusions to market their app.\u003c/p>\n\u003cp>Based on her own research, at least one expert in digital health and mood said she’s skeptical that Mindstrong can, in a general population, work as well as the company claims. MIT’s Picard said that while there are ways to predict or detect mood changes, you usually need more than just a single type of data to do so.\u003c/p>\n\u003cp>“I’m suspicious that a single modality like typing is going to be sufficient. It would be like saying there’s a single question [on a screening questionnaire] that a doctor could be using,” said Picard, who is also CEO of a company that works on digital phenotyping, like Mindstrong does.\u003c/p>\n\u003cp>“My guess is that their specificity to depression is going to be relatively low,” Picard said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Her \u003ca href=\"https://www.jmir.org/2018/6/e210/\" target=\"_blank\" rel=\"noopener\">own\u003c/a> \u003ca href=\"https://ieeexplore.ieee.org/abstract/document/954607\" target=\"_blank\" rel=\"noopener\">research\u003c/a>, for example, relies on temperature and skin conductivity as well as calls and the amount of time spent on a phone to predict mood changes. It is about 80 percent accurate.\u003c/p>\n\u003cdiv class=\"quote-inner\">\n\u003cp>Especially in the field of digital mental health, “we need more peer review,” said Dr. Steven Steinhubl, the director of digital medicine at Scripps Research Translational Institute. (Steinhubl is also the co-editor-in-chief of npj Digital Medicine.) Though he said he strongly believes in the potential of apps like Mindstrong, Steinhubl cautioned that peer review has a purpose.[contextly_sidebar id=\"8bFNH4xsL9O8lTSDRHnxnqtYwxOF2Z5k\"]\u003c/p>\n\u003cp>“[Peer review] is a very imperfect system, but there’s really nothing in the peer-reviewed literature. That means that other experts aren’t able to weigh in,” he said. “If you have committees and other people reviewing something who maybe don’t have the same level of expertise, you’ll have people saying, ‘Yeah, that sounds good.’”\u003c/p>\n\u003cp>Other researchers have also found that neuropsychological tests, more broadly, have relatively low accuracy rates.\u003c/p>\n\u003cp>In a study that examined people who were already being treated for depression, one computerized test could only accurately predict their condition in about 40 percent of cases. Another showed a 44 percent accuracy rate for a similar computerized test used to examine people with major depression.\u003c/p>\n\u003cp>A neuropsychological test — if it’s used as a screening test — is “going to miss a lot of people who are depressed,” said Richard Porter, a psychology researcher based at the University of Otago in New Zealand who conducted one of the studies.\u003c/p>\n\u003cp>And even if depressed people do show some kind of cognitive impairment, it’s impossible to tell what caused it.\u003c/p>\n\u003cp>Many things other than mental illness might cause a person to perform poorly on cognitive tests — like living with another disorder, having a lower baseline performance on cognitive tests, having a drink or taking prescription, over-the-counter, or illegal drugs.\u003c/p>\n\u003cp>Mindstrong’s leaders aren’t worried about that kind of noise in their data. Some of those factors are important to note, both for patients and the health care professionals working with them.\u003c/p>\n\u003cp>“You’re hungover, you didn’t sleep well, you didn’t take your medication, you have a medication side effects, you’re having stress and challenges at work and at home. Those are things that we want to measure,” Dagum said.\u003c/p>\n\u003cp>But even Insel admitted that there are plenty of issues that could affect typing speed — and which Mindstrong hasn’t figured out how to sort out yet. Sticky fingers after lunch, full hands at an airport, wearing gloves during winter, or a broken hand might also plausible affect a person’s typing speed — and, therefore, the app’s performance.\u003c/p>\n\u003cp>“One thing we’ve thought about is how we factor in those unusual environmental issues,” Insel said. “We’re working on that. But I can’t say that we’ve solved all of those possible issues.”\u003c/p>\n\u003cp>\u003cstrong>A Looming Launch in the Golden State\u003c/strong>\u003c/p>\n\u003cp>Insel and others linked with the company are fond of comparing their app to a smoke detector — something that’s intended to enhance humans’ senses to detect danger.\u003c/p>\n\u003cp>But part of the value of a smoke detector is that if it’s functioning properly, we know it isn’t going off at random. It only goes off in certain conditions and carries a specific message: Your house is on fire or about to be. Do something.\u003c/p>\n\u003cp>At least for now, that’s where Mindstrong differs from a smoke detector. There’s no way to tell, yet, how specific it is or how sensitive its algorithm is.\u003c/p>\n\u003cp>Insel said that information is coming. He said the company has the data about the app’s accuracy — but he declined to provide those figures, citing papers pending publication. “[They] square very well with clinically used biomarkers,” he said.\u003c/p>\n\u003cp>California authorities suggest they have been shown some of that data. But they’re nevertheless cautious about how the app will work in their new, different setting.\u003c/p>\n\u003cp>One official said there will be “clear writing” included with the state’s version of the app about what it can do, what it cannot do, and what goals the counties hope it will help them achieve.\u003c/p>\n\u003cp>Those goals are pretty lofty. At least some counties eventually plan to use it not only to supplement the existing system, but potentially to bring more people into its fold.\u003c/p>\n\u003cp>“We might be able to go to colleges, emergency departments, other places,” said Debbie Innes-Gomberg, a deputy director at the Los Angeles County Department of Mental Health. “There’s a process of identifying that they’re symptomatic, but [our target population is] people that are in our system and people who maybe need to be.”\u003c/p>\n\u003cp>And even before the app launched in the original five counties that had signed on, the pilot has expanded. Another 11 counties have recently decided to join.\u003c/p>\n\u003cp>Still, Innes-Gomberg said, it’s going to be rolled out with caution. “We’re not going to oversell this.”\u003c/p>\n\u003cp>\u003ci>\u003cspan style=\"font-weight: 400\">This \u003c/span>\u003c/i>\u003ca href=\"https://www.statnews.com/2018/10/04/mindstrong-questions-over-evidence/\" target=\"_blank\" rel=\"noopener\">\u003ci>\u003cspan style=\"font-weight: 400\">story\u003c/span>\u003c/i>\u003c/a>\u003ci>\u003cspan style=\"font-weight: 400\"> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/span>\u003c/i>\u003c/p>\n\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp class=\"danger-zone\">In the world of digital health, Silicon Valley-based \u003ca href=\"https://www.statnews.com/2017/08/07/mindstrong-insel-mental-illness/\" target=\"_blank\" rel=\"noopener\">Mindstrong\u003c/a> stands out. It has a star-studded team and tens of millions in venture capital funding, including from Jeff Bezos’ VC firm.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp class=\"danger-zone\">It also has a captivating idea: that its app, based on cognitive functioning research, can help detect troubling mental health patterns by collecting data on a person’s smartphone usage — how quickly they type or scroll, for instance.\u003c/p>\n\u003cp class=\"danger-zone\">The promise of that technology has helped Mindstrong build incredible momentum since it launched last year; already more than a dozen counties in California have agreed to deploy the company’s app to patients.\u003c/p>\n\u003cp class=\"\">Does the app live up to its promise? There’s no way to tell. Almost no one outside the company has any idea whether it works. Most of the company’s key promises or claims aren’t yet backed up by published, peer-reviewed data — leading some experts to wonder if the technology is ready for the real world.\u003c/p>\n\u003cp class=\"\">“I wouldn’t waste all that time and money in the wild until they get sure that some of those things are as specific as they hope they are,” said Rosalind Picard, a researcher at MIT Media Lab who is familiar with Mindstrong’s work and tries to use data from smartphones and wearables to detect a person’s mood.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Even as one of the company’s executives, Dr. Tom Insel, acknowledged to STAT that the app isn’t perfect, the company’s CEO emphasized that Mindstrong could provide unprecedented insight into conditions like depression.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Mindstrong is not alone in pushing the frontiers of smartphone-based digital health. Many companies use so-called digital phenotyping, collecting scientific data on a person’s digital life, to gain insights into his or her physical or mental health.\u003c/p>\n\u003cp>The company’s app collects information about how people are typing and runs it through a machine learning algorithm to determine which data can predict their emotional state. Mindstrong has already used it in controlled clinical settings and trials — including one run by a company developing new antidepressants and another done in a \u003ca href=\"https://www.statnews.com/2018/09/24/ketamine-clinics-severe-depression-treatment/\" target=\"_blank\" rel=\"noopener\">ketamine clinic\u003c/a>. The app is available in Apple’s app store, but requires a participant code to access it.\u003c/p>\n\u003cp>“We’ve done the validation work against the gold-standard clinical tests for depression, for anxiety, for cognitive decline, whether it’s memory or executive function,” said Dr. Paul Dagum, the company’s founder. “We’re confident, we’re already seeing some really exciting results.”\u003c/p>\n\u003cp>In the last year, Mindstrong’s footprint and reach have already grown exponentially. The Palo Alto-based company’s workforce has doubled to 42 employees and it made \u003ca href=\"https://www.hsph.harvard.edu/magazine/magazine_article/philanthropic-impact-digital-phenotyping/\" target=\"_blank\" rel=\"noopener\">a sizable gift\u003c/a> to Harvard’s school of public health. In February, it launched a partnership with Takeda to develop new biomarkers that will be able to aid the pharmaceutical giant’s clinical trials for depression treatments.\u003c/p>\n\u003cp>The idea is to use that data to establish a “normal” pattern — so it can be compared against someone’s typing habits on any given day. If the habits look off, slower or more agitated than normal, the app can alert a health care provider.\u003c/p>\n\u003cp>Abnormal patterns, Mindstrong says, might show up if a person is more depressed or anxious, or if just about anything else about their mental health changes. When asked which disorders Mindstrong might be able to detect, Dagum replied, “all of them.” (Dagum, a data scientist and physician, founded the company in 2017 with Rick Klausner, the founder and director of CAR-T pioneer Juno Therapeutics and \u003ca href=\"https://www.statnews.com/2018/06/02/grail-cancer-blood-test-asco/\" target=\"_blank\" rel=\"noopener\">Grail\u003c/a>, a liquid biopsy company.)\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Mindstrong officials told STAT that among their most encouraging results is that its app can even predict how a person will feel next week, or at least how a person will perform on the Hamilton Rating Scale for depression — kind of like a weather app for your mood.\u003c/p>\n\u003cp>The data behind this claim is being published soon, said Insel, who is the former head of the National Institute of Mental Health and came to the company in 2017 after a short stint at \u003ca href=\"https://www.statnews.com/2016/03/28/google-life-sciences-exodus/\" target=\"_blank\" rel=\"noopener\">Verily\u003c/a>.\u003c/p>\n\u003cp>The app can detect a seven-point change on the Hamilton scale, Insel said. That kind of difference could indicate a patient who is not normally depressed now shows signs of mild or moderate depression, or that a person with moderate depression is now showing signs of a very severe condition.\u003c/p>\n\u003cp>“For a clinician and for someone taking care of a patient, knowing that, it could be very, very powerful,” Dagum said.\u003c/p>\n\u003cp>The company’s momentum has taken it to the cusp of a real-world deployment in California. About 15 counties — including the most populous county in the United States, Los Angeles County — will be spending about $60 million over the next four years to bring companies like Mindstrong and other apps into their health care system.\u003c/p>\n\u003cp>These counties hope apps will help them get better services to people with mental illnesses like depression, schizophrenia, bipolar disorder, and post-traumatic stress disorder.\u003c/p>\n\u003cp>The Mindstrong program itself is limited: Patients can choose voluntarily whether to use the app, which will be free to them, and that decision won’t affect the rest of the mental health services they can access.\u003c/p>\n\u003cp>\u003cstrong>Lack of Public Data\u003c/strong>\u003c/p>\n\u003cp>So far, the Mindstrong app has only been used in controlled clinical settings and trials — including one run by a company developing new antidepressants and another done in a ketamine clinic. The company has also claimed that a “\u003ca href=\"https://mindstronghealth.com/clinical-programs/\" target=\"_blank\" rel=\"noopener\">nationwide employer\u003c/a>” and private substance abuse clinics in D.C. are using the app.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>But other than the change on the Hamilton scale — which hasn’t yet gone through peer review and was disclosed to STAT in an interview — almost no data about how well Mindstrong’s technology works is available to independent observers.\u003c/p>\n\u003cp>The company’s website describes five completed clinical trials, but it has not yet published the results of any. Only a handful of other published works — all from the last year — have hinted at how well it works or its scope with data to back up the claims.\u003c/p>\n\u003cp>The company \u003ca href=\"https://www.nature.com/articles/s41746-018-0018-4\" target=\"_blank\" rel=\"noopener\">published\u003c/a> a 27-person pilot study in the journal npj Digital Medicine earlier this year. Dagum is also an author on a poster \u003ca href=\"https://www.nature.com/articles/npp2017265#t122-assessing-anhedonia-with-quantitative-tasks-digital-and-patient-reported-measures-in-a-multicenter-doubleblind-trial-with-btrx246040-for-the-treatment-of-major-depressive-disorder\" target=\"_blank\" rel=\"noopener\">presentation\u003c/a> given at the American College of Neuropsychopharmacology’s 2017 conference, another \u003ca href=\"https://isctm.org/public_access/Feb2018/PDFs/Smith-poster.pdf\" target=\"_blank\" rel=\"noopener\">poster\u003c/a> that reported results from a very wide variety of digital phenotyping techniques — not just typing — and a \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29074231\" target=\"_blank\" rel=\"noopener\">paper\u003c/a> describing a clinical trial protocol — not results.\u003c/p>\n\u003cp>As Mindstrong steps toward a wider rollout, the scientific studies behind its claims will matter. Federal regulators, for one, have \u003ca href=\"https://www.ftc.gov/news-events/blogs/business-blog/2016/01/mind-gap-what-lumosity-promised-vs-what-it-could-prove\" target=\"_blank\" rel=\"noopener\">cracked down\u003c/a> on \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2016/12/marketers-blood-pressure-app-settle-ftc-charges-regarding\" target=\"_blank\" rel=\"noopener\">commercial apps\u003c/a>that misleadingly reference a study’s conclusions to market their app.\u003c/p>\n\u003cp>Based on her own research, at least one expert in digital health and mood said she’s skeptical that Mindstrong can, in a general population, work as well as the company claims. MIT’s Picard said that while there are ways to predict or detect mood changes, you usually need more than just a single type of data to do so.\u003c/p>\n\u003cp>“I’m suspicious that a single modality like typing is going to be sufficient. It would be like saying there’s a single question [on a screening questionnaire] that a doctor could be using,” said Picard, who is also CEO of a company that works on digital phenotyping, like Mindstrong does.\u003c/p>\n\u003cp>“My guess is that their specificity to depression is going to be relatively low,” Picard said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Her \u003ca href=\"https://www.jmir.org/2018/6/e210/\" target=\"_blank\" rel=\"noopener\">own\u003c/a> \u003ca href=\"https://ieeexplore.ieee.org/abstract/document/954607\" target=\"_blank\" rel=\"noopener\">research\u003c/a>, for example, relies on temperature and skin conductivity as well as calls and the amount of time spent on a phone to predict mood changes. It is about 80 percent accurate.\u003c/p>\n\u003cdiv class=\"quote-inner\">\n\u003cp>Especially in the field of digital mental health, “we need more peer review,” said Dr. Steven Steinhubl, the director of digital medicine at Scripps Research Translational Institute. (Steinhubl is also the co-editor-in-chief of npj Digital Medicine.) Though he said he strongly believes in the potential of apps like Mindstrong, Steinhubl cautioned that peer review has a purpose.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>“[Peer review] is a very imperfect system, but there’s really nothing in the peer-reviewed literature. That means that other experts aren’t able to weigh in,” he said. “If you have committees and other people reviewing something who maybe don’t have the same level of expertise, you’ll have people saying, ‘Yeah, that sounds good.’”\u003c/p>\n\u003cp>Other researchers have also found that neuropsychological tests, more broadly, have relatively low accuracy rates.\u003c/p>\n\u003cp>In a study that examined people who were already being treated for depression, one computerized test could only accurately predict their condition in about 40 percent of cases. Another showed a 44 percent accuracy rate for a similar computerized test used to examine people with major depression.\u003c/p>\n\u003cp>A neuropsychological test — if it’s used as a screening test — is “going to miss a lot of people who are depressed,” said Richard Porter, a psychology researcher based at the University of Otago in New Zealand who conducted one of the studies.\u003c/p>\n\u003cp>And even if depressed people do show some kind of cognitive impairment, it’s impossible to tell what caused it.\u003c/p>\n\u003cp>Many things other than mental illness might cause a person to perform poorly on cognitive tests — like living with another disorder, having a lower baseline performance on cognitive tests, having a drink or taking prescription, over-the-counter, or illegal drugs.\u003c/p>\n\u003cp>Mindstrong’s leaders aren’t worried about that kind of noise in their data. Some of those factors are important to note, both for patients and the health care professionals working with them.\u003c/p>\n\u003cp>“You’re hungover, you didn’t sleep well, you didn’t take your medication, you have a medication side effects, you’re having stress and challenges at work and at home. Those are things that we want to measure,” Dagum said.\u003c/p>\n\u003cp>But even Insel admitted that there are plenty of issues that could affect typing speed — and which Mindstrong hasn’t figured out how to sort out yet. Sticky fingers after lunch, full hands at an airport, wearing gloves during winter, or a broken hand might also plausible affect a person’s typing speed — and, therefore, the app’s performance.\u003c/p>\n\u003cp>“One thing we’ve thought about is how we factor in those unusual environmental issues,” Insel said. “We’re working on that. But I can’t say that we’ve solved all of those possible issues.”\u003c/p>\n\u003cp>\u003cstrong>A Looming Launch in the Golden State\u003c/strong>\u003c/p>\n\u003cp>Insel and others linked with the company are fond of comparing their app to a smoke detector — something that’s intended to enhance humans’ senses to detect danger.\u003c/p>\n\u003cp>But part of the value of a smoke detector is that if it’s functioning properly, we know it isn’t going off at random. It only goes off in certain conditions and carries a specific message: Your house is on fire or about to be. Do something.\u003c/p>\n\u003cp>At least for now, that’s where Mindstrong differs from a smoke detector. There’s no way to tell, yet, how specific it is or how sensitive its algorithm is.\u003c/p>\n\u003cp>Insel said that information is coming. He said the company has the data about the app’s accuracy — but he declined to provide those figures, citing papers pending publication. “[They] square very well with clinically used biomarkers,” he said.\u003c/p>\n\u003cp>California authorities suggest they have been shown some of that data. But they’re nevertheless cautious about how the app will work in their new, different setting.\u003c/p>\n\u003cp>One official said there will be “clear writing” included with the state’s version of the app about what it can do, what it cannot do, and what goals the counties hope it will help them achieve.\u003c/p>\n\u003cp>Those goals are pretty lofty. At least some counties eventually plan to use it not only to supplement the existing system, but potentially to bring more people into its fold.\u003c/p>\n\u003cp>“We might be able to go to colleges, emergency departments, other places,” said Debbie Innes-Gomberg, a deputy director at the Los Angeles County Department of Mental Health. “There’s a process of identifying that they’re symptomatic, but [our target population is] people that are in our system and people who maybe need to be.”\u003c/p>\n\u003cp>And even before the app launched in the original five counties that had signed on, the pilot has expanded. Another 11 counties have recently decided to join.\u003c/p>\n\u003cp>Still, Innes-Gomberg said, it’s going to be rolled out with caution. “We’re not going to oversell this.”\u003c/p>\n\u003cp>\u003ci>\u003cspan style=\"font-weight: 400\">This \u003c/span>\u003c/i>\u003ca href=\"https://www.statnews.com/2018/10/04/mindstrong-questions-over-evidence/\" target=\"_blank\" rel=\"noopener\">\u003ci>\u003cspan style=\"font-weight: 400\">story\u003c/span>\u003c/i>\u003c/a>\u003ci>\u003cspan style=\"font-weight: 400\"> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/span>\u003c/i>\u003c/p>\n\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "In Rare Case, Patient Developed Resistance to CAR-T and Died",
"title": "In Rare Case, Patient Developed Resistance to CAR-T and Died",
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"content": "\u003cp class=\"danger-zone\">To make CAR-T therapies, the pioneering cancer treatments, scientists introduce a gene into the body’s immune cells that \u003ca href=\"https://www.statnews.com/2016/12/06/cancer-car-t-factory/\" target=\"_blank\" rel=\"noopener\">turns them into cancer-homing attackers\u003c/a>. But in one case described by scientists Monday, the gene was inadvertently delivered to a cancer cell instead, camouflaging it from the therapy and allowing the cancer to develop resistance to treatment.[contextly_sidebar id=\"2oDy3tMb8Wl0Nea5cfkgpFgdjClpiQ4V\"]\u003c/p>\n\u003cp class=\"danger-zone\">The patient ultimately died.\u003c/p>\n\u003cp class=\"danger-zone\">The case, \u003ca href=\"https://www.nature.com/articles/s41591-018-0201-9\" target=\"_blank\" rel=\"noopener\">reported\u003c/a> in the journal Nature Medicine, appears to have been exceedingly rare — one occurrence among \u003ca href=\"https://www.statnews.com/2018/07/17/car-t-bottleneck-cell-collection-centers-feel-crunch/\" target=\"_blank\" rel=\"noopener\">the hundreds of cases\u003c/a> of CAR-T treatment that have been examined.\u003c/p>\n\u003cp class=\"\">But as the treatments become more widely used, experts say, the case also points to the importance of researchers understanding all the ways in which \u003ca href=\"https://www.statnews.com/2017/10/27/car-t-kite-cell-journey/\" rel=\"noopener\">the process of making them\u003c/a> can go wrong.\u003c/p>\n\u003cp class=\"\">“We’re going to need papers like this one” to identify how cancers can become resistant to CAR-Ts, said Dr. \u003ca href=\"https://faculty.mdanderson.org/profiles/jason_westin.html\" target=\"_blank\" rel=\"noopener\">Jason Westin\u003c/a>, who leads the aggressive lymphoma team at MD Anderson Cancer Center and who was not involved in the new report. “But this CAR-T data is one of the most exciting things we’ve seen in cancer in forever. Having rare theoretical things that actually happen is concerning, but it should in no way temper the potential for the future of CAR-T cells.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The study’s authors have discussed the case, which occurred about five years ago, at scientific meetings, helping to spread awareness. And the process of manufacturing CAR-Ts has improved over that time, reducing the chance that a cancer cell inadvertently receives the gene meant for immune cells.[contextly_sidebar id=\"sNFqnG5MPMrhzsMuBzMQ3TNcRwq8tXmr\"]\u003c/p>\n\u003cp>“We’re getting much better at getting a purer starting population” of immune cells, said \u003ca href=\"https://www.med.upenn.edu/apps/faculty/index.php/g20001883/p8587263\" target=\"_blank\" rel=\"noopener\">Jos Melenhorst\u003c/a>, an immunology expert at the University of Pennsylvania and one of the authors of the report.\u003c/p>\n\u003cp>The subject of the newly described case was a 20-year-old man with B cell acute lymphoblastic leukemia. He was participating in a Phase 1 clinical trial for a CAR-T product then called CTL019, which \u003ca href=\"https://www.pennmedicine.org/news/news-releases/2017/august/fda-approves-personalized-cellular-therapy-for-advanced-leukemia\" target=\"_blank\" rel=\"noopener\">was developed\u003c/a> by researchers at Penn and Children’s Hospital of Philadelphia.\u003c/p>\n\u003cp>As with any CAR-T patient, the man had immune cells called T cells scooped out from his blood through a process called apheresis. Then, those cells were supercharged with a gene that codes for a receptor (the CAR in CAR-T) that turns the cells into bloodhounds on the scent for a specific marker on cancer cells — in this case, a protein called CD19.\u003c/p>\n\u003cp>The patient was infused with a phalanx of the killer T cells, which then swarmed and annihilated the cancer cells. Within a month, his cancer seemed to be in complete remission, Melenhorst said.\u003c/p>\n\u003cp>But as researchers tracked the patient, they noticed something odd. They kept seeing signs of CAR-marked cells, but it wasn’t the body’s T cells expressing CAR anymore.\u003c/p>\n\u003cp>They ran a battery of experiments and confirmed their suspicions: a leukemic B cell had gotten lumped together with the T cells during the manufacturing process and had also taken up the CAR gene. As a result, the leukemia cell was expressing the CAR, which then attached to the CD19 markers, effectively shielding it from the CD19-sniffing machinery of the boosted T cells. It was as if in a game of musical chairs the targeted seat was already filled by the time the music stopped.[contextly_sidebar id=\"nOqcMe5IVLJeCcUCHhq3Pk58784HwGoF\"]\u003c/p>\n\u003cp>“The CAR-T cell couldn’t bind to the CD19 molecule, and thereby it was essentially hiding in plain sight,” Melenhorst said.\u003c/p>\n\u003cp>As the T cells attacked the rest of the leukemia cells, this cell laid low for the most part, slowly proliferating into more resistant cancer cells over time. After about nine months, the patient’s cancer — now resistant to CAR-T — had fully returned. He ultimately died from complications from his leukemia.\u003c/p>\n\u003cp>Melenhorst noted that the case reaches back to the early days of clinical CAR-T use and that improvements in technology since then have allowed manufacturers to ensure that the cells into which they are introducing the CAR gene are less likely to include B cells.\u003c/p>\n\u003cp>A version of the treatment the patient received was \u003ca href=\"https://www.statnews.com/2017/08/30/novartis-car-t-cancer-approved/\" rel=\"noopener\">ultimately approved\u003c/a> as Novartis’s Kymriah in 2017; the paper published Monday includes some authors from Novartis Institutes for BioMedical Research. In a statement, Novartis noted that the manufacturing process used in the case described in the paper was done at Penn and differs from the company’s manufacturing process, which was used in later clinical trials and now for commercial use.\u003c/p>\n\u003cp>“We are not aware of any cases of this happening in the more than 400 patients treated with CTL019/Kymriah manufactured by Novartis for clinical trials or the commercial setting,” the statement said.[contextly_sidebar id=\"DMUx1aVKuHIZSHJYTfdQfqpmBWfT4XxH\"]\u003c/p>\n\u003cp>The company said it has checks throughout the process to clear out B cells and that it is following Kymriah patients for 15 years.\u003c/p>\n\u003cp>“Novartis is continually making improvements to our Kymriah manufacturing process to reduce variability and safely deliver this transformational, personalized treatment to patients in need around the world,” the statement said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003ci>\u003cspan style=\"font-weight: 400\">This \u003c/span>\u003c/i>\u003ca href=\"https://www.statnews.com/2018/10/01/car-t-resistance-cancer-cell-hiding/\" target=\"_blank\" rel=\"noopener\">\u003ci>\u003cspan style=\"font-weight: 400\">story\u003c/span>\u003c/i>\u003c/a>\u003ci>\u003cspan style=\"font-weight: 400\"> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/span>\u003c/i>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp class=\"danger-zone\">To make CAR-T therapies, the pioneering cancer treatments, scientists introduce a gene into the body’s immune cells that \u003ca href=\"https://www.statnews.com/2016/12/06/cancer-car-t-factory/\" target=\"_blank\" rel=\"noopener\">turns them into cancer-homing attackers\u003c/a>. But in one case described by scientists Monday, the gene was inadvertently delivered to a cancer cell instead, camouflaging it from the therapy and allowing the cancer to develop resistance to treatment.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp class=\"danger-zone\">The patient ultimately died.\u003c/p>\n\u003cp class=\"danger-zone\">The case, \u003ca href=\"https://www.nature.com/articles/s41591-018-0201-9\" target=\"_blank\" rel=\"noopener\">reported\u003c/a> in the journal Nature Medicine, appears to have been exceedingly rare — one occurrence among \u003ca href=\"https://www.statnews.com/2018/07/17/car-t-bottleneck-cell-collection-centers-feel-crunch/\" target=\"_blank\" rel=\"noopener\">the hundreds of cases\u003c/a> of CAR-T treatment that have been examined.\u003c/p>\n\u003cp class=\"\">But as the treatments become more widely used, experts say, the case also points to the importance of researchers understanding all the ways in which \u003ca href=\"https://www.statnews.com/2017/10/27/car-t-kite-cell-journey/\" rel=\"noopener\">the process of making them\u003c/a> can go wrong.\u003c/p>\n\u003cp class=\"\">“We’re going to need papers like this one” to identify how cancers can become resistant to CAR-Ts, said Dr. \u003ca href=\"https://faculty.mdanderson.org/profiles/jason_westin.html\" target=\"_blank\" rel=\"noopener\">Jason Westin\u003c/a>, who leads the aggressive lymphoma team at MD Anderson Cancer Center and who was not involved in the new report. “But this CAR-T data is one of the most exciting things we’ve seen in cancer in forever. Having rare theoretical things that actually happen is concerning, but it should in no way temper the potential for the future of CAR-T cells.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The study’s authors have discussed the case, which occurred about five years ago, at scientific meetings, helping to spread awareness. And the process of manufacturing CAR-Ts has improved over that time, reducing the chance that a cancer cell inadvertently receives the gene meant for immune cells.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>“We’re getting much better at getting a purer starting population” of immune cells, said \u003ca href=\"https://www.med.upenn.edu/apps/faculty/index.php/g20001883/p8587263\" target=\"_blank\" rel=\"noopener\">Jos Melenhorst\u003c/a>, an immunology expert at the University of Pennsylvania and one of the authors of the report.\u003c/p>\n\u003cp>The subject of the newly described case was a 20-year-old man with B cell acute lymphoblastic leukemia. He was participating in a Phase 1 clinical trial for a CAR-T product then called CTL019, which \u003ca href=\"https://www.pennmedicine.org/news/news-releases/2017/august/fda-approves-personalized-cellular-therapy-for-advanced-leukemia\" target=\"_blank\" rel=\"noopener\">was developed\u003c/a> by researchers at Penn and Children’s Hospital of Philadelphia.\u003c/p>\n\u003cp>As with any CAR-T patient, the man had immune cells called T cells scooped out from his blood through a process called apheresis. Then, those cells were supercharged with a gene that codes for a receptor (the CAR in CAR-T) that turns the cells into bloodhounds on the scent for a specific marker on cancer cells — in this case, a protein called CD19.\u003c/p>\n\u003cp>The patient was infused with a phalanx of the killer T cells, which then swarmed and annihilated the cancer cells. Within a month, his cancer seemed to be in complete remission, Melenhorst said.\u003c/p>\n\u003cp>But as researchers tracked the patient, they noticed something odd. They kept seeing signs of CAR-marked cells, but it wasn’t the body’s T cells expressing CAR anymore.\u003c/p>\n\u003cp>They ran a battery of experiments and confirmed their suspicions: a leukemic B cell had gotten lumped together with the T cells during the manufacturing process and had also taken up the CAR gene. As a result, the leukemia cell was expressing the CAR, which then attached to the CD19 markers, effectively shielding it from the CD19-sniffing machinery of the boosted T cells. It was as if in a game of musical chairs the targeted seat was already filled by the time the music stopped.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>“The CAR-T cell couldn’t bind to the CD19 molecule, and thereby it was essentially hiding in plain sight,” Melenhorst said.\u003c/p>\n\u003cp>As the T cells attacked the rest of the leukemia cells, this cell laid low for the most part, slowly proliferating into more resistant cancer cells over time. After about nine months, the patient’s cancer — now resistant to CAR-T — had fully returned. He ultimately died from complications from his leukemia.\u003c/p>\n\u003cp>Melenhorst noted that the case reaches back to the early days of clinical CAR-T use and that improvements in technology since then have allowed manufacturers to ensure that the cells into which they are introducing the CAR gene are less likely to include B cells.\u003c/p>\n\u003cp>A version of the treatment the patient received was \u003ca href=\"https://www.statnews.com/2017/08/30/novartis-car-t-cancer-approved/\" rel=\"noopener\">ultimately approved\u003c/a> as Novartis’s Kymriah in 2017; the paper published Monday includes some authors from Novartis Institutes for BioMedical Research. In a statement, Novartis noted that the manufacturing process used in the case described in the paper was done at Penn and differs from the company’s manufacturing process, which was used in later clinical trials and now for commercial use.\u003c/p>\n\u003cp>“We are not aware of any cases of this happening in the more than 400 patients treated with CTL019/Kymriah manufactured by Novartis for clinical trials or the commercial setting,” the statement said.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The company said it has checks throughout the process to clear out B cells and that it is following Kymriah patients for 15 years.\u003c/p>\n\u003cp>“Novartis is continually making improvements to our Kymriah manufacturing process to reduce variability and safely deliver this transformational, personalized treatment to patients in need around the world,” the statement said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003ci>\u003cspan style=\"font-weight: 400\">This \u003c/span>\u003c/i>\u003ca href=\"https://www.statnews.com/2018/10/01/car-t-resistance-cancer-cell-hiding/\" target=\"_blank\" rel=\"noopener\">\u003ci>\u003cspan style=\"font-weight: 400\">story\u003c/span>\u003c/i>\u003c/a>\u003ci>\u003cspan style=\"font-weight: 400\"> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/span>\u003c/i>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"meta": {
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"source": "BBC World Service"
},
"link": "/radio/program/bbc-world-service",
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"rss": "https://podcasts.files.bbci.co.uk/p02nq0gn.rss"
}
},
"californiareport": {
"id": "californiareport",
"title": "The California Report",
"tagline": "California, day by day",
"info": "KQED’s statewide radio news program providing daily coverage of issues, trends and public policy decisions.",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-California-Report-Podcast-Tile-703x703-1.jpg",
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"officialWebsiteLink": "/californiareport",
"meta": {
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"source": "kqed",
"order": 8
},
"link": "/californiareport",
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"amazon": "https://music.amazon.com/podcasts/26099305-72af-4542-9dde-ac1807fe36d5/kqed-s-the-california-report",
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}
},
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"id": "californiareportmagazine",
"title": "The California Report Magazine",
"tagline": "Your state, your stories",
"info": "Every week, The California Report Magazine takes you on a road trip for the ears: to visit the places and meet the people who make California unique. The in-depth storytelling podcast from the California Report.",
"airtime": "FRI 4:30pm-5pm, 6:30pm-7pm, 11pm-11:30pm",
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"officialWebsiteLink": "/californiareportmagazine",
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"order": 10
},
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM3NjkwNjk1OTAz",
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},
"city-arts": {
"id": "city-arts",
"title": "City Arts & Lectures",
"info": "A one-hour radio program to hear celebrated writers, artists and thinkers address contemporary ideas and values, often discussing the creative process. Please note: tapes or transcripts are not available",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/05/cityartsandlecture-300x300.jpg",
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"airtime": "SUN 1pm-2pm, TUE 10pm, WED 1am",
"meta": {
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"source": "City Arts & Lectures"
},
"link": "https://www.cityarts.net",
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"rss": "https://www.cityarts.net/feed/"
}
},
"closealltabs": {
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"officialWebsiteLink": "/podcasts/closealltabs",
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"order": 1
},
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"id": "code-switch-life-kit",
"title": "Code Switch / Life Kit",
"info": "\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />",
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"meta": {
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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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"meta": {
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"source": "Commonwealth Club of California"
},
"link": "/radio/program/commonwealth-club",
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"google": "https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw",
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"id": "forum",
"title": "Forum",
"tagline": "The conversation starts here",
"info": "KQED’s live call-in program discussing local, state, national and international issues, as well as in-depth interviews.",
"airtime": "MON-FRI 9am-11am, 10pm-11pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Forum-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED Forum with Mina Kim and Alexis Madrigal",
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"source": "kqed",
"order": 9
},
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM5NTU3MzgxNjMz",
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"freakonomics-radio": {
"id": "freakonomics-radio",
"title": "Freakonomics Radio",
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"imageSrc": "https://ww2.kqed.org/news/wp-content/uploads/sites/10/2018/05/freakonomicsRadio.png",
"officialWebsiteLink": "http://freakonomics.com/",
"airtime": "SUN 1am-2am, SAT 3pm-4pm",
"meta": {
"site": "radio",
"source": "WNYC"
},
"link": "/radio/program/freakonomics-radio",
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"apple": "https://itunes.apple.com/us/podcast/freakonomics-radio/id354668519",
"tuneIn": "https://tunein.com/podcasts/WNYC-Podcasts/Freakonomics-Radio-p272293/",
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},
"fresh-air": {
"id": "fresh-air",
"title": "Fresh Air",
"info": "Hosted by Terry Gross, \u003cem>Fresh Air from WHYY\u003c/em> is the Peabody Award-winning weekday magazine of contemporary arts and issues. One of public radio's most popular programs, Fresh Air features intimate conversations with today's biggest luminaries.",
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"apple": "https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=214089682&at=11l79Y&ct=nprdirectory",
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"here-and-now": {
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"info": "A live production of NPR and WBUR Boston, in collaboration with stations across the country, Here & Now reflects the fluid world of news as it's happening in the middle of the day, with timely, in-depth news, interviews and conversation. Hosted by Robin Young, Jeremy Hobson and Tonya Mosley.",
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},
"hidden-brain": {
"id": "hidden-brain",
"title": "Hidden Brain",
"info": "Shankar Vedantam uses science and storytelling to reveal the unconscious patterns that drive human behavior, shape our choices and direct our relationships.",
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"airtime": "SUN 7pm-8pm",
"meta": {
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"source": "NPR"
},
"link": "/radio/program/hidden-brain",
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},
"how-i-built-this": {
"id": "how-i-built-this",
"title": "How I Built This with Guy Raz",
"info": "Guy Raz dives into the stories behind some of the world's best known companies. How I Built This weaves a narrative journey about innovators, entrepreneurs and idealists—and the movements they built.",
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"officialWebsiteLink": "https://www.npr.org/podcasts/510313/how-i-built-this",
"airtime": "SUN 7:30pm-8pm",
"meta": {
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"source": "npr"
},
"link": "/radio/program/how-i-built-this",
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"apple": "https://itunes.apple.com/us/podcast/how-i-built-this-with-guy-raz/id1150510297?mt=2",
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},
"hyphenacion": {
"id": "hyphenacion",
"title": "Hyphenación",
"tagline": "Where conversation and cultura meet",
"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2025/03/Hyphenacion_FinalAssets_PodcastTile.png",
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"officialWebsiteLink": "/podcasts/hyphenacion",
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"order": 15
},
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},
"jerrybrown": {
"id": "jerrybrown",
"title": "The Political Mind of Jerry Brown",
"tagline": "Lessons from a lifetime in politics",
"info": "The Political Mind of Jerry Brown brings listeners the wisdom of the former Governor, Mayor, and presidential candidate. Scott Shafer interviewed Brown for more than 40 hours, covering the former governor's life and half-century in the political game – and Brown has some lessons he'd like to share. ",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-Political-Mind-of-Jerry-Brown-Podcast-Tile-703x703-1.jpg",
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"officialWebsiteLink": "/podcasts/jerrybrown",
"meta": {
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"order": 18
},
"link": "/podcasts/jerrybrown",
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}
},
"latino-usa": {
"id": "latino-usa",
"title": "Latino USA",
"airtime": "MON 1am-2am, SUN 6pm-7pm",
"info": "Latino USA, the radio journal of news and culture, is the only national, English-language radio program produced from a Latino perspective.",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/latinoUsa.jpg",
"officialWebsiteLink": "http://latinousa.org/",
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"source": "npr"
},
"link": "/radio/program/latino-usa",
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"apple": "https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=79681317&at=11l79Y&ct=nprdirectory",
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"rss": "https://feeds.npr.org/510016/podcast.xml"
}
},
"marketplace": {
"id": "marketplace",
"title": "Marketplace",
"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
"airtime": "MON-FRI 4pm-4:30pm, MON-WED 6:30pm-7pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Marketplace-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.marketplace.org/",
"meta": {
"site": "news",
"source": "American Public Media"
},
"link": "/radio/program/marketplace",
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"rss": "https://feeds.publicradio.org/public_feeds/marketplace-pm/rss/rss"
}
},
"masters-of-scale": {
"id": "masters-of-scale",
"title": "Masters of Scale",
"info": "Masters of Scale is an original podcast in which LinkedIn co-founder and Greylock Partner Reid Hoffman sets out to describe and prove theories that explain how great entrepreneurs take their companies from zero to a gazillion in ingenious fashion.",
"airtime": "Every other Wednesday June 12 through October 16 at 8pm (repeats Thursdays at 2am)",
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"officialWebsiteLink": "https://mastersofscale.com/",
"meta": {
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"source": "WaitWhat"
},
"link": "/radio/program/masters-of-scale",
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"rss": "https://rss.art19.com/masters-of-scale"
}
},
"mindshift": {
"id": "mindshift",
"title": "MindShift",
"tagline": "A podcast about the future of learning and how we raise our kids",
"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED MindShift: How We Will Learn",
"officialWebsiteLink": "/mindshift/",
"meta": {
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"source": "kqed",
"order": 12
},
"link": "/podcasts/mindshift",
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5",
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}
},
"morning-edition": {
"id": "morning-edition",
"title": "Morning Edition",
"info": "\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. Hosts Steve Inskeep, David Greene and Rachel Martin bring you the latest breaking news and features to prepare you for the day.",
"airtime": "MON-FRI 3am-9am",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Morning-Edition-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.npr.org/programs/morning-edition/",
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"link": "/radio/program/morning-edition"
},
"onourwatch": {
"id": "onourwatch",
"title": "On Our Watch",
"tagline": "Deeply-reported investigative journalism",
"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/On-Our-Watch-Podcast-Tile-703x703-1.jpg",
"imageAlt": "On Our Watch from NPR and KQED",
"officialWebsiteLink": "/podcasts/onourwatch",
"meta": {
"site": "news",
"source": "kqed",
"order": 11
},
"link": "/podcasts/onourwatch",
"subscribe": {
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM2MC9wb2RjYXN0LnhtbD9zYz1nb29nbGVwb2RjYXN0cw",
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"rss": "https://feeds.npr.org/510360/podcast.xml"
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