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When on deadline she fuels herself almost exclusively on chocolate chips.\u003c/span>\r\n\r\n\u003cspan style=\"font-weight: 400;\"> \u003c/span>","avatar":"https://secure.gravatar.com/avatar/3fb78e873af3312f34d0bc1d60a07c7f?s=600&d=blank&r=g","twitter":"lesleywmcclurg","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"arts","roles":["author"]},{"site":"news","roles":["editor"]},{"site":"futureofyou","roles":["editor"]},{"site":"stateofhealth","roles":["author"]},{"site":"science","roles":["editor"]}],"headData":{"title":"Lesley McClurg | KQED","description":"KQED Health Correspondent","ogImgSrc":"https://secure.gravatar.com/avatar/3fb78e873af3312f34d0bc1d60a07c7f?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/3fb78e873af3312f34d0bc1d60a07c7f?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/lesleymcclurg"}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"home","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California Report","link":"/californiareport"}]},{"key":"menu2","items":[{"name":"Arts & Culture","link":"/arts","type":"title"},{"name":"Critics’ Picks","link":"/thedolist"},{"name":"Cultural Commentary","link":"/artscommentary"},{"name":"Food & Drink","link":"/food"},{"name":"Bay Area Hip-Hop","link":"/bayareahiphop"},{"name":"Rebel Girls","link":"/rebelgirls"},{"name":"Arts Video","link":"/artsvideos"}]},{"key":"menu3","items":[{"name":"Podcasts","link":"/podcasts","type":"title"},{"name":"Bay Curious","link":"/podcasts/baycurious"},{"name":"Rightnowish","link":"/podcasts/rightnowish"},{"name":"The Bay","link":"/podcasts/thebay"},{"name":"On Our Watch","link":"/podcasts/onourwatch"},{"name":"Mindshift","link":"/podcasts/mindshift"},{"name":"Consider This","link":"/podcasts/considerthis"},{"name":"Political Breakdown","link":"/podcasts/politicalbreakdown"}]},{"key":"menu4","items":[{"name":"Live Radio","link":"/radio","type":"title"},{"name":"TV","link":"/tv","type":"title"},{"name":"Events","link":"/events","type":"title"},{"name":"For Educators","link":"/education","type":"title"},{"name":"Support KQED","link":"/support","type":"title"},{"name":"About","link":"/about","type":"title"},{"name":"Help Center","link":"https://kqed-helpcenter.kqed.org/s","type":"title"}]}]},"pagesReducer":{},"postsReducer":{"stream_live":{"type":"live","id":"stream_live","audioUrl":"https://streams.kqed.org/kqedradio","title":"Live Stream","excerpt":"Live Stream information currently unavailable.","link":"/radio","featImg":"","label":{"name":"KQED Live","link":"/"}},"stream_kqedNewscast":{"type":"posts","id":"stream_kqedNewscast","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/newscast.mp3?_=1","title":"KQED Newscast","featImg":"","label":{"name":"88.5 FM","link":"/"}},"futureofyou_442604":{"type":"posts","id":"futureofyou_442604","meta":{"index":"posts_1591205157","site":"futureofyou","id":"442604","score":null,"sort":[1550278825000]},"guestAuthors":[],"slug":"i-found-out-my-genetics-makes-me-painfully-sensitive-to-rejection-now-what","title":"One Gene Makes Me Painfully Sensitive to Rejection. Now What?","publishDate":1550278825,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>\u003cstrong>Originally published on Sept 27, 2018\u003c/strong>\u003c/p>\n\u003cp>A few months ago, I ordered a home genetic testing kit. I didn’t do it because I wanted to know about my ancestry. I did it because I’d heard about a genetic variation that can make people more sensitive to rejection — and I was convinced I had it.\u003c/p>\n\u003cp>I have always been a bit overly sensitive. I remember a particularly devastating moment in fourth grade. Ms. Brown had asked a question I knew the answer to. I raised my hand, stretching my whole body up so she would notice. She made eye contact with me, commented that I had already gotten to answer a question that day, and then called on a student behind me.\u003c/p>\n\u003caside class=\"pullquote alignright\">I have long struggled with bouts of depression; my relationships are typically a roller coaster of anxieties. If I were a G-carrier, it could explain so much of what I was experiencing.\u003c/aside>\n\u003cp>I could feel my face flush with embarrassment. A knot started to form in my throat as, almost in a whisper, I asked to be excused, the tears welling up in my eyes. Once I was safe behind the bathroom door, I used my shirt to muffle the sounds of my crying. Simply because the teacher hadn’t called on me.\u003c/p>\n\u003cp>A few years later in middle school, my friend Jennifer slipped a note into my locker saying that she wanted to play with another kid at recess, not me. That night — and for many nights after — I lay curled up in my bed for hours, the note on my nightstand.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>As I got older, it got worse. The emotional pain I experienced in social situations changed how I felt about myself and how I behaved with other people. As an adult, if a friend didn’t respond to a text, I would pull away and avoid them. When someone I barely knew ghosted me, I convinced myself that I wasn’t desirable to anyone.\u003c/p>\n\u003cp>Friends told me I was overreacting. Sure, everyone feels a little hurt by these things, but to become so debilitated each time was a bit over the top, they told me. Finally, in my late 20s, I started to wonder if maybe there was something wrong with me.\u003c/p>\n\u003cp>\u003cstrong>Is Oversensitivity Biological?\u003c/strong>\u003c/p>\n\u003cp>In 2009, \u003ca href=\"http://www.pnas.org/content/106/35/15079\">a ground-breaking study\u003c/a> investigated the link between emotional sensitivity and our genetics. Scientists already knew that a particular gene, the OPRM1 gene, could influence our sensitivity to physical pain. \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/18719451\">Previous studies\u003c/a> had shown that people with a G allele on this gene required higher doses of morphine to curb pain, suggesting they experience pain more intensely than others. Because \u003ca href=\"https://www.kqed.org/futureofyou/175807/can-taking-tylenol-help-you-get-over-a-romantic-breakup-maybe\">physical pain and emotional pain are processed in similar regions of the brain\u003c/a>, researchers wondered if G-allele carriers might also experience more intense \u003cem>emotional \u003c/em>pain.\u003c/p>\n\u003cp>To test the question, neuroscientists at the University of California Los Angeles recruited 122 people, 49 of whom were G-carriers, the rest of whom were not. Participants came into the lab and played a computer game intended to evoke feelings of rejection. In the game, each participant would toss a ball back and forth to two other virtual players on a screen. The two players would, at some point, exclude the participant. Meanwhile, the participant lay in a functional magnetic resonance imaging (fMRI) brain scanner that measured blood flow to the pain regions of the brain.\u003c/p>\n\u003cfigure id=\"attachment_443244\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"size-large wp-image-443244\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1020x381.jpg\" alt=\"Brain scan showing yellow dots\" width=\"640\" height=\"239\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1020x381.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-160x60.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-800x299.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-768x287.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1200x448.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1920x717.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1180x441.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-960x359.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-240x90.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-375x140.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-520x194.jpg 520w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003cfigcaption class=\"wp-caption-text\">fMRI scan of brain showing activation of pain regions (including the dorsal anterior cingulate cortex). The image comes from a study in which participants played “Cyberball” while lying in the fMRI scanner—a game designed to induce feelings of rejection. \u003ccite>(Baldwin Way)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“What the researchers found was that there was an exaggerated response [in G carriers],” says Jon-Kar Zubieta, a psychiatric researcher at the University of Utah. “Individuals who were G-allele carriers had greater responses to the negative emotional challenge, which was associated with greater activation of the anterior cingulate cortex,” a pain region of the brain.\u003c/p>\n\u003cp>I had called up Zubieta to get his take on the research for this story — but my questions were also personally motivated.\u003c/p>\n\u003cp>“G-carriers seem to have less capacity to compensate for negative emotion,” he told me. And it doesn’t matter whether that negative emotion is in response to physical pain or the social pain of rejection, like what study participants experienced during the ball-tossing game.\u003c/p>\n\u003cp>Zubieta also told me that G-carriers — who make up 15 to 20 percent of the general population — not only feel more hurt in everyday social interactions, “these individuals \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4330509/\">have traits\u003c/a> that make them more prone to developing conditions such as depression and anxiety.”\u003c/p>\n\u003cfigure id=\"attachment_443245\" class=\"wp-caption aligncenter\" style=\"max-width: 600px\">\u003cimg class=\"wp-image-443245 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/07/Zubieta.jpg\" alt=\"A man speaks in front of a white board.\" width=\"600\" height=\"400\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta.jpg 600w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-520x347.jpg 520w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">Jon-Kar Zubieta, Chairman of the Department of Psychiatry and Psychiatrist-in-Chief of the University of Utah Neuropsychiatric Institute. \u003ccite>(University of Utah Health)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Listening to Zubieta recount such findings, I found myself nodding my head. All of it resonated with me. I have long struggled with bouts of depression; my relationships are typically a roller coaster of anxieties. If I were a G-carrier, it could explain so much of what I was experiencing.\u003c/p>\n\u003cp>\u003cstrong>Why Do G-Carriers Feel More Pain?\u003c/strong>\u003c/p>\n\u003cp>When the genetic kit finally arrived at my house, I opened it and pulled out the clear test tube. I collected my saliva, sealed it back up, and shipped it off to the lab to be tested.\u003c/p>\n\u003cp>In the weeks I spent waiting for my results, I looked up more research on how the OPRM1 gene could lead to a heightened sense of pain.\u003c/p>\n\u003cp>[emailsignup newslettername='science' align='right']As it turns out, the gene controls the number of opioid receptors in the brain. In a typical brain, when a person is experiencing pain, neurons fire in regions such as the anterior cingulate cortex. In response, the body releases endorphins — our natural pain killers. The endorphins rush into the brain and attach to neuron receptors, inhibiting those cells from firing, effectively stopping the pain signal. This process is actually what happens during the “runner’s high,” and the same process occurs for most people when they experience the pain of rejection.\u003c/p>\n\u003cp>However, if a person doesn’t have enough opioid receptors or doesn’t release a sufficient amount of endorphins, they could experience more suffering than others. Zubieta says this is likely what happens to G-carriers; they appear to have fewer receptors in critical areas of the brain and, he adds, “they may have less capacity to release natural opioids in general.” This means, Zubieta says, that G-carriers “have less capacity to suppress responses to pain.”\u003c/p>\n\u003cp>\u003cstrong>So … Am I A G-Carrier?\u003c/strong>\u003c/p>\n\u003cp>Several weeks after shipping off my saliva, I was at home when an email popped up in my inbox; my results had come in. My stomach dropped and I sat staring at the unopened email for a few minutes.\u003c/p>\n\u003cp>What would it mean if I were a G-carrier? It would feel validating, of course. For so long I had felt like I was emotionally weak. If I were a G-carrier then it would mean there was a biological explanation for my feelings. It would mean that I hadn’t been overreacting all these years; rather, I had been reacting proportionally to the pain I was feeling — pain that 80 to 85 percent of the population simply doesn’t feel.\u003c/p>\n\u003cp>On the other hand, if I weren’t a G-carrier, I wasn’t sure where that would leave me. I could feel my heart beating faster. My hands shook slightly as I struggled to steady my breathing.\u003c/p>\n\u003cp>I opened the email and scrolled through lines of the genetic code until I found the OPRM1 gene on chromosome 6. Typed in small font was a “G.”\u003c/p>\n\u003cfigure id=\"attachment_442608\" class=\"wp-caption alignright\" style=\"max-width: 240px\">\u003cimg class=\"size-full wp-image-442608\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/06/RS31383_CANTRELL_003-sfi.jpg\" alt=\"\" width=\"240\" height=\"360\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/06/RS31383_CANTRELL_003-sfi.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/RS31383_CANTRELL_003-sfi-160x240.jpg 160w\" sizes=\"(max-width: 240px) 100vw, 240px\">\u003cfigcaption class=\"wp-caption-text\">Lisa Cantrell stretches prior to running at Dolores Park in San Francisco, Calif., on Monday, June 11, 2018. \u003ccite>(Lauren Hanussak/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>What Now?\u003c/strong>\u003c/p>\n\u003cp>So am I stuck with unbearable pain forever? A prisoner to my genetics? On the phone with Zubieta, I ask him if a G-carrier like me could do anything about it.\u003c/p>\n\u003cp>“You have to remember that the opioid system becomes active when there are things like exercise or stressors,” so when you do physically demanding sports or activities that in some way cause pain “you are training the system.” In other words, Zubieta says, you can modify your brain’s response.\u003c/p>\n\u003cp>The advice makes sense. Exercise not only releases endorphins that decrease pain in the moment, regularly challenging your body with physical activity can strengthen the overall functioning of the opioid system, potentially prompting your brain to create new receptors and urging your body to increase the amount of endorphins released each time you experience a stressor.\u003c/p>\n\u003cp>All of this could make the system more optimal, more prepared to kick into full gear when it encounters pain, be it physical or emotional. Interestingly, \u003ca href=\"https://www.sciencedirect.com/science/article/abs/pii/003193849190418N\">chocolate\u003c/a> and \u003ca href=\"http://rspb.royalsocietypublishing.org/content/early/2011/09/12/rspb.2011.1373.short\">laughter\u003c/a> may also help — they bump up endorphin release, which could alleviate pain in the moment as well as have longer term effects.\u003c/p>\n\u003cp>Zubieta continued with his suggestions. “So you could do yoga… or run marathons.” Something physically demanding, he says.\u003c/p>\n\u003cp>“I’m not sure about a marathon,” I laugh.\u003c/p>\n\u003cp>But the idea stuck with me as I hung up the phone.\u003c/p>\n\u003cp>I do envision a life for myself someday in which I have slightly thicker skin — a life in which I don’t cry because a friend forgets to return my text. So, after a few days of mulling it over, I decide to take Zubieta’s advice.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>For the past two months I have been on a strict running schedule, gradually increasing my miles, preparing for a half marathon I’m signed up to run next month. Is the physical training helping me tame my emotions? It’s hard to say. I have definitely experienced moments of rejection over the last few weeks that I feel have been easier to deal with. But it’s hard to know if the marathon training is the cause of my increased ability to cope, or if it’s just the power of having a label. Maybe just knowing I’m a G-carrier — knowing that my pain might be more intense than others — is what I have needed all along. My own self-awareness might just be the first real step in changing how I react to the world.\u003c/p>\n\n","blocks":[],"excerpt":"Fifteen to 20 percent of the population carry the gene that causes acute emotional pain in response to social rejection. Will a genetic test to reveal the gene offer validation or hopelessness?","status":"publish","parent":0,"modified":1550281257,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":37,"wordCount":1795},"headData":{"title":"One Gene Makes Me Painfully Sensitive to Rejection. Now What? | KQED","description":"Fifteen to 20 percent of the population carry the gene that causes acute emotional pain in response to social rejection. Will a genetic test to reveal the gene offer validation or hopelessness?","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"One Gene Makes Me Painfully Sensitive to Rejection. Now What?","datePublished":"2019-02-16T01:00:25.000Z","dateModified":"2019-02-16T01:40:57.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"442604 https://ww2.kqed.org/futureofyou/?p=442604","disqusUrl":"https://ww2.kqed.org/futureofyou/2019/02/15/i-found-out-my-genetics-makes-me-painfully-sensitive-to-rejection-now-what/","disqusTitle":"One Gene Makes Me Painfully Sensitive to Rejection. Now What?","source":"Your Genes","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcrmag/2019/02/CantrellRejectionGene.mp3","nprByline":"Lisa Cantrell","audioTrackLength":315,"path":"/futureofyou/442604/i-found-out-my-genetics-makes-me-painfully-sensitive-to-rejection-now-what","audioDuration":330000,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cstrong>Originally published on Sept 27, 2018\u003c/strong>\u003c/p>\n\u003cp>A few months ago, I ordered a home genetic testing kit. I didn’t do it because I wanted to know about my ancestry. I did it because I’d heard about a genetic variation that can make people more sensitive to rejection — and I was convinced I had it.\u003c/p>\n\u003cp>I have always been a bit overly sensitive. I remember a particularly devastating moment in fourth grade. Ms. Brown had asked a question I knew the answer to. I raised my hand, stretching my whole body up so she would notice. She made eye contact with me, commented that I had already gotten to answer a question that day, and then called on a student behind me.\u003c/p>\n\u003caside class=\"pullquote alignright\">I have long struggled with bouts of depression; my relationships are typically a roller coaster of anxieties. If I were a G-carrier, it could explain so much of what I was experiencing.\u003c/aside>\n\u003cp>I could feel my face flush with embarrassment. A knot started to form in my throat as, almost in a whisper, I asked to be excused, the tears welling up in my eyes. Once I was safe behind the bathroom door, I used my shirt to muffle the sounds of my crying. Simply because the teacher hadn’t called on me.\u003c/p>\n\u003cp>A few years later in middle school, my friend Jennifer slipped a note into my locker saying that she wanted to play with another kid at recess, not me. That night — and for many nights after — I lay curled up in my bed for hours, the note on my nightstand.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>As I got older, it got worse. The emotional pain I experienced in social situations changed how I felt about myself and how I behaved with other people. As an adult, if a friend didn’t respond to a text, I would pull away and avoid them. When someone I barely knew ghosted me, I convinced myself that I wasn’t desirable to anyone.\u003c/p>\n\u003cp>Friends told me I was overreacting. Sure, everyone feels a little hurt by these things, but to become so debilitated each time was a bit over the top, they told me. Finally, in my late 20s, I started to wonder if maybe there was something wrong with me.\u003c/p>\n\u003cp>\u003cstrong>Is Oversensitivity Biological?\u003c/strong>\u003c/p>\n\u003cp>In 2009, \u003ca href=\"http://www.pnas.org/content/106/35/15079\">a ground-breaking study\u003c/a> investigated the link between emotional sensitivity and our genetics. Scientists already knew that a particular gene, the OPRM1 gene, could influence our sensitivity to physical pain. \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/18719451\">Previous studies\u003c/a> had shown that people with a G allele on this gene required higher doses of morphine to curb pain, suggesting they experience pain more intensely than others. Because \u003ca href=\"https://www.kqed.org/futureofyou/175807/can-taking-tylenol-help-you-get-over-a-romantic-breakup-maybe\">physical pain and emotional pain are processed in similar regions of the brain\u003c/a>, researchers wondered if G-allele carriers might also experience more intense \u003cem>emotional \u003c/em>pain.\u003c/p>\n\u003cp>To test the question, neuroscientists at the University of California Los Angeles recruited 122 people, 49 of whom were G-carriers, the rest of whom were not. Participants came into the lab and played a computer game intended to evoke feelings of rejection. In the game, each participant would toss a ball back and forth to two other virtual players on a screen. The two players would, at some point, exclude the participant. Meanwhile, the participant lay in a functional magnetic resonance imaging (fMRI) brain scanner that measured blood flow to the pain regions of the brain.\u003c/p>\n\u003cfigure id=\"attachment_443244\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"size-large wp-image-443244\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1020x381.jpg\" alt=\"Brain scan showing yellow dots\" width=\"640\" height=\"239\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1020x381.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-160x60.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-800x299.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-768x287.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1200x448.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1920x717.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-1180x441.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-960x359.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-240x90.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-375x140.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/4_dACC-and-aI-labelled-520x194.jpg 520w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003cfigcaption class=\"wp-caption-text\">fMRI scan of brain showing activation of pain regions (including the dorsal anterior cingulate cortex). The image comes from a study in which participants played “Cyberball” while lying in the fMRI scanner—a game designed to induce feelings of rejection. \u003ccite>(Baldwin Way)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“What the researchers found was that there was an exaggerated response [in G carriers],” says Jon-Kar Zubieta, a psychiatric researcher at the University of Utah. “Individuals who were G-allele carriers had greater responses to the negative emotional challenge, which was associated with greater activation of the anterior cingulate cortex,” a pain region of the brain.\u003c/p>\n\u003cp>I had called up Zubieta to get his take on the research for this story — but my questions were also personally motivated.\u003c/p>\n\u003cp>“G-carriers seem to have less capacity to compensate for negative emotion,” he told me. And it doesn’t matter whether that negative emotion is in response to physical pain or the social pain of rejection, like what study participants experienced during the ball-tossing game.\u003c/p>\n\u003cp>Zubieta also told me that G-carriers — who make up 15 to 20 percent of the general population — not only feel more hurt in everyday social interactions, “these individuals \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4330509/\">have traits\u003c/a> that make them more prone to developing conditions such as depression and anxiety.”\u003c/p>\n\u003cfigure id=\"attachment_443245\" class=\"wp-caption aligncenter\" style=\"max-width: 600px\">\u003cimg class=\"wp-image-443245 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/07/Zubieta.jpg\" alt=\"A man speaks in front of a white board.\" width=\"600\" height=\"400\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta.jpg 600w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/07/Zubieta-520x347.jpg 520w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003cfigcaption class=\"wp-caption-text\">Jon-Kar Zubieta, Chairman of the Department of Psychiatry and Psychiatrist-in-Chief of the University of Utah Neuropsychiatric Institute. \u003ccite>(University of Utah Health)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Listening to Zubieta recount such findings, I found myself nodding my head. All of it resonated with me. I have long struggled with bouts of depression; my relationships are typically a roller coaster of anxieties. If I were a G-carrier, it could explain so much of what I was experiencing.\u003c/p>\n\u003cp>\u003cstrong>Why Do G-Carriers Feel More Pain?\u003c/strong>\u003c/p>\n\u003cp>When the genetic kit finally arrived at my house, I opened it and pulled out the clear test tube. I collected my saliva, sealed it back up, and shipped it off to the lab to be tested.\u003c/p>\n\u003cp>In the weeks I spent waiting for my results, I looked up more research on how the OPRM1 gene could lead to a heightened sense of pain.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"emailsignup","attributes":{"named":{"newslettername":"science","align":"right","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>As it turns out, the gene controls the number of opioid receptors in the brain. In a typical brain, when a person is experiencing pain, neurons fire in regions such as the anterior cingulate cortex. In response, the body releases endorphins — our natural pain killers. The endorphins rush into the brain and attach to neuron receptors, inhibiting those cells from firing, effectively stopping the pain signal. This process is actually what happens during the “runner’s high,” and the same process occurs for most people when they experience the pain of rejection.\u003c/p>\n\u003cp>However, if a person doesn’t have enough opioid receptors or doesn’t release a sufficient amount of endorphins, they could experience more suffering than others. Zubieta says this is likely what happens to G-carriers; they appear to have fewer receptors in critical areas of the brain and, he adds, “they may have less capacity to release natural opioids in general.” This means, Zubieta says, that G-carriers “have less capacity to suppress responses to pain.”\u003c/p>\n\u003cp>\u003cstrong>So … Am I A G-Carrier?\u003c/strong>\u003c/p>\n\u003cp>Several weeks after shipping off my saliva, I was at home when an email popped up in my inbox; my results had come in. My stomach dropped and I sat staring at the unopened email for a few minutes.\u003c/p>\n\u003cp>What would it mean if I were a G-carrier? It would feel validating, of course. For so long I had felt like I was emotionally weak. If I were a G-carrier then it would mean there was a biological explanation for my feelings. It would mean that I hadn’t been overreacting all these years; rather, I had been reacting proportionally to the pain I was feeling — pain that 80 to 85 percent of the population simply doesn’t feel.\u003c/p>\n\u003cp>On the other hand, if I weren’t a G-carrier, I wasn’t sure where that would leave me. I could feel my heart beating faster. My hands shook slightly as I struggled to steady my breathing.\u003c/p>\n\u003cp>I opened the email and scrolled through lines of the genetic code until I found the OPRM1 gene on chromosome 6. Typed in small font was a “G.”\u003c/p>\n\u003cfigure id=\"attachment_442608\" class=\"wp-caption alignright\" style=\"max-width: 240px\">\u003cimg class=\"size-full wp-image-442608\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/06/RS31383_CANTRELL_003-sfi.jpg\" alt=\"\" width=\"240\" height=\"360\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/06/RS31383_CANTRELL_003-sfi.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/06/RS31383_CANTRELL_003-sfi-160x240.jpg 160w\" sizes=\"(max-width: 240px) 100vw, 240px\">\u003cfigcaption class=\"wp-caption-text\">Lisa Cantrell stretches prior to running at Dolores Park in San Francisco, Calif., on Monday, June 11, 2018. \u003ccite>(Lauren Hanussak/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>What Now?\u003c/strong>\u003c/p>\n\u003cp>So am I stuck with unbearable pain forever? A prisoner to my genetics? On the phone with Zubieta, I ask him if a G-carrier like me could do anything about it.\u003c/p>\n\u003cp>“You have to remember that the opioid system becomes active when there are things like exercise or stressors,” so when you do physically demanding sports or activities that in some way cause pain “you are training the system.” In other words, Zubieta says, you can modify your brain’s response.\u003c/p>\n\u003cp>The advice makes sense. Exercise not only releases endorphins that decrease pain in the moment, regularly challenging your body with physical activity can strengthen the overall functioning of the opioid system, potentially prompting your brain to create new receptors and urging your body to increase the amount of endorphins released each time you experience a stressor.\u003c/p>\n\u003cp>All of this could make the system more optimal, more prepared to kick into full gear when it encounters pain, be it physical or emotional. Interestingly, \u003ca href=\"https://www.sciencedirect.com/science/article/abs/pii/003193849190418N\">chocolate\u003c/a> and \u003ca href=\"http://rspb.royalsocietypublishing.org/content/early/2011/09/12/rspb.2011.1373.short\">laughter\u003c/a> may also help — they bump up endorphin release, which could alleviate pain in the moment as well as have longer term effects.\u003c/p>\n\u003cp>Zubieta continued with his suggestions. “So you could do yoga… or run marathons.” Something physically demanding, he says.\u003c/p>\n\u003cp>“I’m not sure about a marathon,” I laugh.\u003c/p>\n\u003cp>But the idea stuck with me as I hung up the phone.\u003c/p>\n\u003cp>I do envision a life for myself someday in which I have slightly thicker skin — a life in which I don’t cry because a friend forgets to return my text. So, after a few days of mulling it over, I decide to take Zubieta’s advice.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>For the past two months I have been on a strict running schedule, gradually increasing my miles, preparing for a half marathon I’m signed up to run next month. Is the physical training helping me tame my emotions? It’s hard to say. I have definitely experienced moments of rejection over the last few weeks that I feel have been easier to deal with. But it’s hard to know if the marathon training is the cause of my increased ability to cope, or if it’s just the power of having a label. Maybe just knowing I’m a G-carrier — knowing that my pain might be more intense than others — is what I have needed all along. My own self-awareness might just be the first real step in changing how I react to the world.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/442604/i-found-out-my-genetics-makes-me-painfully-sensitive-to-rejection-now-what","authors":["byline_futureofyou_442604"],"categories":["futureofyou_73","futureofyou_1064"],"tags":["futureofyou_1275","futureofyou_120","futureofyou_80"],"featImg":"futureofyou_444781","label":"source_futureofyou_442604"},"futureofyou_446470":{"type":"posts","id":"futureofyou_446470","meta":{"index":"posts_1591205157","site":"futureofyou","id":"446470","score":null,"sort":[1549872118000]},"guestAuthors":[],"slug":"the-quandary-of-genetic-testing-when-youre-pregnant","title":"'Do I Really Want to Know?' The Quandary of Genetic Testing When You're Pregnant","publishDate":1549872118,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>It wasn't hard for Shara Watkins to get pregnant. It was hard to stay pregnant.\u003c/p>\n\u003cp>In 2016, she was devastated by two miscarriages. Fortunately through the aid of several medications like progesterone and lovenox she successfully carried a child last year.\u003c/p>\n\u003cp>Shara and her husband Robert were elated when she reached her second trimester, the phase when the highest risk of miscarriage subsides.\u003c/p>\n\u003cp>Unfortunately the San Mateo couple's struggles continued. Shara spent four months of her pregnancy on bedrest. When their doctor offered extensive genetic testing to check the health of their fetus, the couple leaped at the opportunity. Plus, Shara had a history of rare disease in her family.\u003c/p>\n\u003cp>“I had a high-risk pregnancy, and there had been a lot of complications prior to this,\" says Shara. \"And, so I just wanted to have all the information that I could.”\u003c/p>\n\u003cp>\u003cstrong>Information Available to Expecting Parents Balloons \u003c/strong>\u003c/p>\n\u003cp>In the past, a doctor may have screened a parent for a few suspect diseases common to their specific ethnicity or family history, but now a growing number of companies offer extensive panels testing for hundreds of rare diseases.\u003c/p>\n\u003cp>\u003cb>\u003c/b>\"Over the last 10 to 20 years the number of genetic disorders that we are able to test for has exploded,\" says Mary Norton, a prenatal geneticist at UCSF.\u003c/p>\n\u003cfigure id=\"attachment_446547\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"wp-image-446547 size-large\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2019/02/IMG_0386-1020x765.jpg\" alt=\"\" width=\"640\" height=\"480\">\u003cfigcaption class=\"wp-caption-text\">Gifty Hammond preps DNA samples at Myriad Genetics lab in South San Francisco. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Silicon Valley is a hotbed for companies vying for the business of concerned future parents. The prenatal genetic testing industry is \u003ca href=\"https://www.researchandmarkets.com/research/v6g7tj/global_carrier?w=4\" target=\"_blank\" rel=\"noopener\">projected\u003c/a> to grow nearly 30 percent over the next five years. A wide variety of \u003ca href=\"https://www.acog.org/Patients/FAQs/Prenatal-Genetic-Screening-Tests?IsMobileSet=false\" target=\"_blank\" rel=\"noopener\">tests\u003c/a> are now available to screen both fetus and parents. One option that's rapidly growing in popularity is called an \u003ca href=\"https://www.acog.org/Patients/FAQs/Carrier-Screening?IsMobileSet=false\" target=\"_blank\" rel=\"noopener\">expanded carrier screening.\u003c/a>\u003c/p>\n\u003cp>About a dozen lab companies, most based in the Bay Area can scan a patient's blood or saliva for hundreds of conditions that their child could inherit. A perfectly healthy parent can pass along an \u003ca href=\"https://medlineplus.gov/ency/article/002052.htm\" target=\"_blank\" rel=\"noopener\">autosomal-recessive disease\u003c/a> like cystic fibrosis, Fragile X syndrome or Tay-Sachs, if their partner is also a carrier for the disease. When both parents have a mutated version of the same gene then their child is at an \u003ca href=\"https://ghr.nlm.nih.gov/primer/inheritance/riskassessment\" target=\"_blank\" rel=\"noopener\">increased risk\u003c/a> for developing a condition.\u003c/p>\n\u003cp>\"In these types of diseases 80 percent of the time there's no family history,\" says Jim Goldberg, chief medical officer of Myriad Women's Health. Norton agrees that family history is not a very sensitive screening tool.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The ideal time to take a carrier screening is prior to conception because \u003ca href=\"https://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/about/pac-20384716\" target=\"_blank\" rel=\"noopener\">in vitro fertilization\u003c/a> is still a possibility. If both parents are found to be carriers of the same disease IVF allows doctors to ensure a healthy fertilized egg. The tests\u003c/span>\u003cspan style=\"font-weight: 400\"> must be prescribed by a doctor and screening panels vary widely in price. For example, if you call the customer service line for Myriad Genetics lab in South San Francisco a representative will quote a price of $1,599 for patients who don't have insurance. But if you pay within 45 days the price drops to $349. Shara and Robert paid about $600 out of pocket for their two screening panels from a Bay Area company called \u003ca href=\"https://www.natera.com/horizon-carrier-screen\" target=\"_blank\" rel=\"noopener\">Natera\u003c/a>. The company billed their insurance about $3,200 dollars. \u003c/span>\u003c/p>\n\u003cp>\u003cstrong>Does Knowing More Help?\u003c/strong>\u003c/p>\n\u003cp>When Shara and Rob's doctor emailed over their tests results the couple was alarmed because their physician suggested they see a genetic counselor to help them interpret the report.\u003c/p>\n\u003cp>\"This new landscape is complicated and it's beyond the ability for most OB-GYN's to really understand it themselves and explain it well,\" says UCSF's Norton.\u003c/p>\n\u003cp>It appeared the Watkin's baby could inherit \u003ca href=\"https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Spinal-Muscular-Atrophy-Fact-Sheet\" target=\"_blank\" rel=\"noopener\">spinal muscular atrophy\u003c/a>, or SMA, a potentially fatal disease. The couple hadn’t discussed what they would do if their child was unhealthy.\u003c/p>\n\u003cp>“I called Rob in pure hysterics on my way to work,” says Shara.\u003c/p>\n\u003cp>“When I got the call in my office she was crying,\" recalls Rob. \"We were both in kind of a panic mode immediately.”\u003c/p>\n\u003cp>Rob and Shara spent the day pouring over page after page of testing results, and then subsequent days searching the Internet for answers.\u003c/p>\n\u003cp>“The test results give you kind of these alerts on the first page like you're a carrier for this, your carrier for this,\" explains Shara. \"It's definitely not clear. I mean, if it had been clear we wouldn't have ever gone into full panic mode.”\u003c/p>\n\u003cp>\u003cstrong>Find an Expert\u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Although Shara and Rob could have sought free counseling from one of Natera's genetic counselors, they chose an unaffiliated expert. They \u003c/span>\u003cspan style=\"font-weight: 400\">booked the first available appointment at Stanford Children's Health. \u003c/span>\u003c/p>\n\u003cp>“They came to us with this information not knowing what it meant, not knowing what the risks were, and not understanding the implications,” says Meg Homeyer, a genetic counselor at Stanford. \"Plus, the language is difficult to interpret and sometimes can sound alarmist.\"\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">As it turns out Shara, Rob and their doctor thought their baby's risk of SMA was a lot higher than it was. The\u003c/span> report says they were at an \u003ca href=\"https://www.acog.org/Patients/FAQs/Carrier-Screening-for-Spinal-Muscular-Atrophy?IsMobileSet=false\" target=\"_blank\" rel=\"noopener\">increased carrier risk,\u003c/a> fortunately, that is not the same thing as being an actual carrier for the disease.\u003c/p>\n\u003cp>“It was much more lower more like 3,500,\" says Homeyer as she thumbed through the test results.\u003c/p>\n\u003cp>Yet, even though Rob and Shara’s worst fears didn't play out, they still lost sleep at night wondering if their child could be the \u003cem>1 \u003c/em>in 3,500.\u003c/p>\n\u003cfigure id=\"attachment_446549\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-446549 size-medium\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-800x547.jpg\" alt=\"\" width=\"800\" height=\"547\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-800x547.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-160x109.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-768x525.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-1020x697.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-1200x820.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Shara Watkins smiles while holding up her 5-month-old daughter Kaiya as they sit on the couch in their San Mateo home. \u003ccite>(Lindsey Moore/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Making Sense of Risks\u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Homeyer says she frequently sees parents agonize over how to feel, or whether to act on abstract numbers. \u003c/span>\u003c/p>\n\u003cp>“They will not know whether a baby is 100 percent healthy until birth,\" says Homeyer. \"In the meantime they're trying not to worry about the risks but they can't help it.\"\u003c/p>\n\u003cp>Homeyer says the value of a test is dependent on the values of an individual couple.\u003c/p>\n\u003cp>“There's the family that will want every possible test available,\" says Homeyer. \"They'll want no stone unturned because their tolerance for risk is low. There are other families where this information in pregnancy isn't useful for them.”\u003c/p>\n\u003cp>Like families who would not seek further diagnostic testing , or potentially terminate a pregnancy regardless of testing results.\u003c/p>\n\u003cp>\"We often have people who say, 'I wish I had never started down this path,'\" says Norton. \"Although I don't think people can really anticipate how they'll feel until they get there.\"\u003c/p>\n\u003cp>\u003cstrong>One Test Leads to the Next\u003c/strong>\u003c/p>\n\u003cp>For those who choose to do a carrier screening, the worst case scenario is their child has a 1 in 4chance of inheriting an autosomal recessive condition. In that case, further diagnostic invasive testing like an \u003ca href=\"https://www.mayoclinic.org/tests-procedures/amniocentesis/about/pac-20392914\" target=\"_blank\" rel=\"noopener\">amniocentesis\u003c/a> is necessary to confirm the possibility. Fortunately care for rare diseases has improved dramatically in recent years.\u003c/p>\n\u003cfigure id=\"attachment_446548\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-446548 size-medium\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2019/02/IMG_0379-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-1200x900.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-1920x1440.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Gifty Hammond separating DNA samples at Myriad Genetics lab in South San Francisco. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"M\u003cb>\u003c/b>any more of these conditions are treatable after birth,\" says Norton. \"And treatment starting right at the time of birth may improve the outcomes. In some cases we can even start treatment during pregnancy.\"\u003c/p>\n\u003cp>Norton says the advent of more advanced testing stirred a lot of fear amongst practitioners that abortion rates would simultaneously rise, but that's not what \u003ca href=\"https://obgyn.onlinelibrary.wiley.com/doi/full/10.1002/pd.4808\" target=\"_blank\" rel=\"noopener\">preliminary studies\u003c/a> are showing.\u003c/p>\n\u003cp>\u003cstrong>Why Scanning for More Diseases Isn't Always Better\u003c/strong>\u003c/p>\n\u003cp>If you're the type of parent that does want as much information as possible you may be lured to take the most comprehensive test on the market. However, Aleks\u003cspan style=\"font-weight: 400\"> Rajkovic, chief genomics officer at UCSF, \u003c/span>\u003cspan style=\"font-weight: 400\">cautions families attracted to extensive panels.\u003c/span>\u003c/p>\n\u003cp>\u003cb>\u003c/b>\"A lot of them are overkill,\" says Rajkovic. \"S\u003cb>\u003c/b>ome panels are testing for very rare disorders that have only been seen in a single family, so the likelihood of a client ever actually having the variation is infinitely small.\"\u003c/p>\n\u003cp>Plus, he says extremely rare disease are usually not well studied or understood, so it's very hard for doctors to offer helpful information about what a prognosis could entail.\u003c/p>\n\u003cp>\u003cstrong>A Happy Ending\u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Fortunately Shara's little girl, Kaiya, is a healthy 5-month-old. When asked if Shara would go back and take the genetic test again, she pauses, but then nods yes. Even though she spent months fretting over the tiny possibility her child wasn't ok, she says the \u003c/span>\u003cspan style=\"font-weight: 400\">anxiety she dealt with was better than not knowing anything all. Her advice to future parents is think carefully about whether more information will, for them, be reassuring or just another thing to worry about. \u003c/span>\u003c/p>\n\u003cp>Norton agrees. She hopes families focus on a key fact: 97 percent of babies are born perfectly healthy.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"Why screening for hundreds of genetic diseases can lead to more questions than answers.","status":"publish","parent":0,"modified":1550275626,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":46,"wordCount":1518},"headData":{"title":"'Do I Really Want to Know?' The Quandary of Genetic Testing When You're Pregnant | KQED","description":"Why screening for hundreds of genetic diseases can lead to more questions than answers.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"'Do I Really Want to Know?' The Quandary of Genetic Testing When You're Pregnant","datePublished":"2019-02-11T08:01:58.000Z","dateModified":"2019-02-16T00:07:06.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"446470 https://ww2.kqed.org/futureofyou/?p=446470","disqusUrl":"https://ww2.kqed.org/futureofyou/2019/02/11/the-quandary-of-genetic-testing-when-youre-pregnant/","disqusTitle":"'Do I Really Want to Know?' The Quandary of Genetic Testing When You're Pregnant","source":"Medical Science","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/2019/02/McClurgGeneticTesting.mp3","audioTrackLength":295,"path":"/futureofyou/446470/the-quandary-of-genetic-testing-when-youre-pregnant","audioDuration":313000,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>It wasn't hard for Shara Watkins to get pregnant. It was hard to stay pregnant.\u003c/p>\n\u003cp>In 2016, she was devastated by two miscarriages. Fortunately through the aid of several medications like progesterone and lovenox she successfully carried a child last year.\u003c/p>\n\u003cp>Shara and her husband Robert were elated when she reached her second trimester, the phase when the highest risk of miscarriage subsides.\u003c/p>\n\u003cp>Unfortunately the San Mateo couple's struggles continued. Shara spent four months of her pregnancy on bedrest. When their doctor offered extensive genetic testing to check the health of their fetus, the couple leaped at the opportunity. Plus, Shara had a history of rare disease in her family.\u003c/p>\n\u003cp>“I had a high-risk pregnancy, and there had been a lot of complications prior to this,\" says Shara. \"And, so I just wanted to have all the information that I could.”\u003c/p>\n\u003cp>\u003cstrong>Information Available to Expecting Parents Balloons \u003c/strong>\u003c/p>\n\u003cp>In the past, a doctor may have screened a parent for a few suspect diseases common to their specific ethnicity or family history, but now a growing number of companies offer extensive panels testing for hundreds of rare diseases.\u003c/p>\n\u003cp>\u003cb>\u003c/b>\"Over the last 10 to 20 years the number of genetic disorders that we are able to test for has exploded,\" says Mary Norton, a prenatal geneticist at UCSF.\u003c/p>\n\u003cfigure id=\"attachment_446547\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"wp-image-446547 size-large\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2019/02/IMG_0386-1020x765.jpg\" alt=\"\" width=\"640\" height=\"480\">\u003cfigcaption class=\"wp-caption-text\">Gifty Hammond preps DNA samples at Myriad Genetics lab in South San Francisco. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Silicon Valley is a hotbed for companies vying for the business of concerned future parents. The prenatal genetic testing industry is \u003ca href=\"https://www.researchandmarkets.com/research/v6g7tj/global_carrier?w=4\" target=\"_blank\" rel=\"noopener\">projected\u003c/a> to grow nearly 30 percent over the next five years. A wide variety of \u003ca href=\"https://www.acog.org/Patients/FAQs/Prenatal-Genetic-Screening-Tests?IsMobileSet=false\" target=\"_blank\" rel=\"noopener\">tests\u003c/a> are now available to screen both fetus and parents. One option that's rapidly growing in popularity is called an \u003ca href=\"https://www.acog.org/Patients/FAQs/Carrier-Screening?IsMobileSet=false\" target=\"_blank\" rel=\"noopener\">expanded carrier screening.\u003c/a>\u003c/p>\n\u003cp>About a dozen lab companies, most based in the Bay Area can scan a patient's blood or saliva for hundreds of conditions that their child could inherit. A perfectly healthy parent can pass along an \u003ca href=\"https://medlineplus.gov/ency/article/002052.htm\" target=\"_blank\" rel=\"noopener\">autosomal-recessive disease\u003c/a> like cystic fibrosis, Fragile X syndrome or Tay-Sachs, if their partner is also a carrier for the disease. When both parents have a mutated version of the same gene then their child is at an \u003ca href=\"https://ghr.nlm.nih.gov/primer/inheritance/riskassessment\" target=\"_blank\" rel=\"noopener\">increased risk\u003c/a> for developing a condition.\u003c/p>\n\u003cp>\"In these types of diseases 80 percent of the time there's no family history,\" says Jim Goldberg, chief medical officer of Myriad Women's Health. Norton agrees that family history is not a very sensitive screening tool.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The ideal time to take a carrier screening is prior to conception because \u003ca href=\"https://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/about/pac-20384716\" target=\"_blank\" rel=\"noopener\">in vitro fertilization\u003c/a> is still a possibility. If both parents are found to be carriers of the same disease IVF allows doctors to ensure a healthy fertilized egg. The tests\u003c/span>\u003cspan style=\"font-weight: 400\"> must be prescribed by a doctor and screening panels vary widely in price. For example, if you call the customer service line for Myriad Genetics lab in South San Francisco a representative will quote a price of $1,599 for patients who don't have insurance. But if you pay within 45 days the price drops to $349. Shara and Robert paid about $600 out of pocket for their two screening panels from a Bay Area company called \u003ca href=\"https://www.natera.com/horizon-carrier-screen\" target=\"_blank\" rel=\"noopener\">Natera\u003c/a>. The company billed their insurance about $3,200 dollars. \u003c/span>\u003c/p>\n\u003cp>\u003cstrong>Does Knowing More Help?\u003c/strong>\u003c/p>\n\u003cp>When Shara and Rob's doctor emailed over their tests results the couple was alarmed because their physician suggested they see a genetic counselor to help them interpret the report.\u003c/p>\n\u003cp>\"This new landscape is complicated and it's beyond the ability for most OB-GYN's to really understand it themselves and explain it well,\" says UCSF's Norton.\u003c/p>\n\u003cp>It appeared the Watkin's baby could inherit \u003ca href=\"https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Spinal-Muscular-Atrophy-Fact-Sheet\" target=\"_blank\" rel=\"noopener\">spinal muscular atrophy\u003c/a>, or SMA, a potentially fatal disease. The couple hadn’t discussed what they would do if their child was unhealthy.\u003c/p>\n\u003cp>“I called Rob in pure hysterics on my way to work,” says Shara.\u003c/p>\n\u003cp>“When I got the call in my office she was crying,\" recalls Rob. \"We were both in kind of a panic mode immediately.”\u003c/p>\n\u003cp>Rob and Shara spent the day pouring over page after page of testing results, and then subsequent days searching the Internet for answers.\u003c/p>\n\u003cp>“The test results give you kind of these alerts on the first page like you're a carrier for this, your carrier for this,\" explains Shara. \"It's definitely not clear. I mean, if it had been clear we wouldn't have ever gone into full panic mode.”\u003c/p>\n\u003cp>\u003cstrong>Find an Expert\u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Although Shara and Rob could have sought free counseling from one of Natera's genetic counselors, they chose an unaffiliated expert. They \u003c/span>\u003cspan style=\"font-weight: 400\">booked the first available appointment at Stanford Children's Health. \u003c/span>\u003c/p>\n\u003cp>“They came to us with this information not knowing what it meant, not knowing what the risks were, and not understanding the implications,” says Meg Homeyer, a genetic counselor at Stanford. \"Plus, the language is difficult to interpret and sometimes can sound alarmist.\"\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">As it turns out Shara, Rob and their doctor thought their baby's risk of SMA was a lot higher than it was. The\u003c/span> report says they were at an \u003ca href=\"https://www.acog.org/Patients/FAQs/Carrier-Screening-for-Spinal-Muscular-Atrophy?IsMobileSet=false\" target=\"_blank\" rel=\"noopener\">increased carrier risk,\u003c/a> fortunately, that is not the same thing as being an actual carrier for the disease.\u003c/p>\n\u003cp>“It was much more lower more like 3,500,\" says Homeyer as she thumbed through the test results.\u003c/p>\n\u003cp>Yet, even though Rob and Shara’s worst fears didn't play out, they still lost sleep at night wondering if their child could be the \u003cem>1 \u003c/em>in 3,500.\u003c/p>\n\u003cfigure id=\"attachment_446549\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-446549 size-medium\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-800x547.jpg\" alt=\"\" width=\"800\" height=\"547\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-800x547.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-160x109.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-768x525.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-1020x697.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut-1200x820.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/RS34787_WATKINS_009-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Shara Watkins smiles while holding up her 5-month-old daughter Kaiya as they sit on the couch in their San Mateo home. \u003ccite>(Lindsey Moore/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Making Sense of Risks\u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Homeyer says she frequently sees parents agonize over how to feel, or whether to act on abstract numbers. \u003c/span>\u003c/p>\n\u003cp>“They will not know whether a baby is 100 percent healthy until birth,\" says Homeyer. \"In the meantime they're trying not to worry about the risks but they can't help it.\"\u003c/p>\n\u003cp>Homeyer says the value of a test is dependent on the values of an individual couple.\u003c/p>\n\u003cp>“There's the family that will want every possible test available,\" says Homeyer. \"They'll want no stone unturned because their tolerance for risk is low. There are other families where this information in pregnancy isn't useful for them.”\u003c/p>\n\u003cp>Like families who would not seek further diagnostic testing , or potentially terminate a pregnancy regardless of testing results.\u003c/p>\n\u003cp>\"We often have people who say, 'I wish I had never started down this path,'\" says Norton. \"Although I don't think people can really anticipate how they'll feel until they get there.\"\u003c/p>\n\u003cp>\u003cstrong>One Test Leads to the Next\u003c/strong>\u003c/p>\n\u003cp>For those who choose to do a carrier screening, the worst case scenario is their child has a 1 in 4chance of inheriting an autosomal recessive condition. In that case, further diagnostic invasive testing like an \u003ca href=\"https://www.mayoclinic.org/tests-procedures/amniocentesis/about/pac-20392914\" target=\"_blank\" rel=\"noopener\">amniocentesis\u003c/a> is necessary to confirm the possibility. Fortunately care for rare diseases has improved dramatically in recent years.\u003c/p>\n\u003cfigure id=\"attachment_446548\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-446548 size-medium\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2019/02/IMG_0379-800x600.jpg\" alt=\"\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-1200x900.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2019/02/IMG_0379-1920x1440.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Gifty Hammond separating DNA samples at Myriad Genetics lab in South San Francisco. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"M\u003cb>\u003c/b>any more of these conditions are treatable after birth,\" says Norton. \"And treatment starting right at the time of birth may improve the outcomes. In some cases we can even start treatment during pregnancy.\"\u003c/p>\n\u003cp>Norton says the advent of more advanced testing stirred a lot of fear amongst practitioners that abortion rates would simultaneously rise, but that's not what \u003ca href=\"https://obgyn.onlinelibrary.wiley.com/doi/full/10.1002/pd.4808\" target=\"_blank\" rel=\"noopener\">preliminary studies\u003c/a> are showing.\u003c/p>\n\u003cp>\u003cstrong>Why Scanning for More Diseases Isn't Always Better\u003c/strong>\u003c/p>\n\u003cp>If you're the type of parent that does want as much information as possible you may be lured to take the most comprehensive test on the market. However, Aleks\u003cspan style=\"font-weight: 400\"> Rajkovic, chief genomics officer at UCSF, \u003c/span>\u003cspan style=\"font-weight: 400\">cautions families attracted to extensive panels.\u003c/span>\u003c/p>\n\u003cp>\u003cb>\u003c/b>\"A lot of them are overkill,\" says Rajkovic. \"S\u003cb>\u003c/b>ome panels are testing for very rare disorders that have only been seen in a single family, so the likelihood of a client ever actually having the variation is infinitely small.\"\u003c/p>\n\u003cp>Plus, he says extremely rare disease are usually not well studied or understood, so it's very hard for doctors to offer helpful information about what a prognosis could entail.\u003c/p>\n\u003cp>\u003cstrong>A Happy Ending\u003c/strong>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Fortunately Shara's little girl, Kaiya, is a healthy 5-month-old. When asked if Shara would go back and take the genetic test again, she pauses, but then nods yes. Even though she spent months fretting over the tiny possibility her child wasn't ok, she says the \u003c/span>\u003cspan style=\"font-weight: 400\">anxiety she dealt with was better than not knowing anything all. Her advice to future parents is think carefully about whether more information will, for them, be reassuring or just another thing to worry about. \u003c/span>\u003c/p>\n\u003cp>Norton agrees. She hopes families focus on a key fact: 97 percent of babies are born perfectly healthy.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/446470/the-quandary-of-genetic-testing-when-youre-pregnant","authors":["11229"],"categories":["futureofyou_1","futureofyou_73","futureofyou_1575"],"tags":["futureofyou_1643","futureofyou_80","futureofyou_1641"],"featImg":"futureofyou_446474","label":"source_futureofyou_446470"},"futureofyou_444911":{"type":"posts","id":"futureofyou_444911","meta":{"index":"posts_1591205157","site":"futureofyou","id":"444911","score":null,"sort":[1548716426000]},"guestAuthors":[],"slug":"a-mother-comes-to-terms-with-young-daughters-transgender-identity","title":"From Denial to Gratitude: A Mom Comes to Terms With Young Daughter's Transgender Identity","publishDate":1548716426,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>\u003cem>Last year in the course of reporting the \u003ca href=\"https://www.kqed.org/futureofyou/440851/can-you-really-know-that-a-3-year-old-is-transgender\" target=\"_blank\" rel=\"noopener\">controversy\u003c/a> over socially transitioning young transgender children, I met a mother, Molly, and her then-six-year-old transgender daughter, Gracie. (The family, which lives in the Bay Area, doesn't want their last name used for reasons of privacy.) Gracie had socially transitioned at the age of four.\u003c/em>\u003c/p>\n\u003caside class=\"pullquote alignright\">'There was no way I was going to raise a child who was ashamed of who they are.'\u003c/aside>\n\u003cp>\u003cem>A \u003ca href=\"http://pediatrics.aappublications.org/content/137/3/e20154358\" target=\"_blank\" rel=\"noopener\">social transition\u003c/a> is distinct from one that involves medical procedures like taking hormones or undergoing surgery. But e\u003c/em>\u003cem>ven without a medical intervention, the decision by parents to allow their children to socially transition -- to publicly live in their new gender identity -- can be agonizing. S\u003c/em>\u003cem>ince Molly was so articulate in describing her emotional journey around her daughter's transition, from denial to acceptance to gratitude, we wanted to let her tell that story in her own words.\u003c/em>\u003c/p>\n\u003cp>\u003cem>The following is an edited transcript of Molly's answers during our interview ...\u003c/em>\u003c/p>\n\u003cp>\u003cstrong>'She Took Every Opportunity to Tell Us'\u003c/strong>\u003c/p>\n\u003cp>As soon as Gracie could tell us, it was, 'I'm a girl. I'm a sister. I'm a daughter. I'm that girl on that show. I'm that girl in that book. I'm the princess.' She took every opportunity to tell us she was a girl. She took every towel and blanket and turned it into long hair.\u003c/p>\n\u003cp>[contextly_sidebar id=\"zfCL4NYYDoEb3nH3NPCAOj9vXGj8reoz\"]We would not let her leave the house with any of those things, so it was all behind closed doors. It felt really isolating because here you have this child who's showing you all these signs of not being the way you thought they would or that society tells you they should.\u003c/p>\n\u003cp>It was really, really hard. I don't think people realize when they think about kids this age that it isn't something that they just wake up and say one day, and then you're like, \"Oh, that's what you want to be today? Great, like let's go explore that and let's be that.\" It's a battle. \u003cspan style=\"font-weight: 400\">It's difficult as a parent to watch those signs develop in your child, and to know your child's life is going to be harder because of who they are. Because of society wanting them to fit somewhere that your child is telling you they don't.\u003c/span>\u003c/p>\n\u003cp>\u003cstrong>Trucks, Dinosaurs and Superheroes\u003c/strong>\u003c/p>\n\u003cp>Early on, we tried to discourage Gracie's transgender identity, and we filled her world with trucks and dinosaurs and superheroes. We refused \"girl things.\" Like, 'No, you can't be Elsa for Halloween. You have to be Superman. No, you can't have the dolls for Christmas. We're going to get you a pirate ship.' We just really tried everything we could. That's the part I'm ashamed of now.\u003c/p>\n\u003cfigure id=\"attachment_441819\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"wp-image-441819 size-large\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2020/04/Gracie-1020x681.jpg\" alt=\"\" width=\"640\" height=\"427\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-1200x801.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-1180x788.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-960x641.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-520x347.jpg 520w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003cfigcaption class=\"wp-caption-text\">Gracie, 7, poses for a picture in her room. (Lauren Hanussak/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>'What If He Changes His Mind?'\u003c/strong>\u003c/p>\n\u003cp>There's a lot of advice out there about following your child's lead if they're telling you that this is how they feel. But I always felt like how can I just follow their lead when I'm the one that they're looking to set those boundaries and guidelines?\u003c/p>\n\u003cp>We went to an expert. We asked, 'What if we do this? What if we let our son walk into the world in a dress with fairy wings, and crowns, and high heels, and even just in regular girl clothes? What if we let him do all of this, and he gets to express himself, and then he changes his mind, and we just went through all of this for nothing?'\u003c/p>\n\u003cp>The therapist said: \"That's not the question. The question is:\u003cbr>\nWhat if you \u003cem>don't\u003c/em> do it?\" She said, \"What will happen, and what I'm hearing when you describe the insistence of Gracie, is you're going to end up with a child who's anxious and depressed and feels ashamed.\u003c/p>\n\u003cp>As soon as I knew there was even a chance that my kid could feel ashamed of who they are, there was no way. I had to support. I had to listen. I had to let her steer a little bit. Because there was no way I was going to raise a child who was ashamed of who they are. Period. My job is to set boundaries and guidelines, but it's also to teach them to be proud of who they are no matter what, and that's what we're doing.\u003c/p>\n\u003cp>\u003cstrong>On Making the Decision to Let Gracie Become a Girl\u003c/strong>\u003c/p>\n\u003cp>Before the transition, the most incredible moments of having a child were passing us by. Life seemed sort of lackluster. You never got to see that sparkle, or that magic of a Christmas morning or a Halloween. Or just regular day-to day-happiness.\u003c/p>\n\u003cp>I got to a point where I was like, I can't do it anymore. I need to see my child light up. We were at Marshalls one day and they had a display of children's Easter dresses. I just remember thinking, 'Oh crap. How am I gonna steer you away from this?'\u003c/p>\n\u003cp>My husband was with me and we both looked at each other. We told Gracie: \"You can pick a dress.\" We let our then-son pick a dress, and Gracie would tear through the house to get to the dress the second she got home. For at least a year, she wore it all over the house . I just kicked myself for it taking so long to do that and to open the world to her like that. Also, for just caring so much about what other people would've thought.\u003c/p>\n\u003cp>\u003cstrong>Grief, Then Gratitude\u003c/strong>\u003c/p>\n\u003cp>There was a time when there was a lot of grief for me around the loss of the idea of my son. There was a point in time when I thought I may never recover from that. Now I look at pictures of Gracie as a baby and all I see is her face with the wrong haircut and the wrong clothes. It's completely shifted. There was a time when I didn't know that that would be possible.\u003c/p>\n\u003cp>But ultimately, my husband and I are both so grateful because this has given us the opportunity to lead more meaningful lives. Now we have this huge emphasis on teaching our kids about acceptance and tolerance, and being really proud of who you are and self-love. I hope that I would've emphasized those things anyway, but now there's no question.\u003c/p>\n\u003cp>I think that before the transition there was a part of Gracie that had to resign to whatever we told her, and so she was just sort of coasting.\u003c/p>\n\u003cp>Now she gets to really live.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"What do you do when your child tells you from the very start that they are not the gender you think they are? A mother takes us through the difficult emotional journey her family had to travel. ","status":"publish","parent":0,"modified":1548892366,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":25,"wordCount":1152},"headData":{"title":"From Denial to Gratitude: A Mom Comes to Terms With Young Daughter's Transgender Identity | KQED","description":"What do you do when your child tells you from the very start that they are not the gender you think they are? A mother takes us through the difficult emotional journey her family had to travel. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"From Denial to Gratitude: A Mom Comes to Terms With Young Daughter's Transgender Identity","datePublished":"2019-01-28T23:00:26.000Z","dateModified":"2019-01-30T23:52:46.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"444911 https://ww2.kqed.org/futureofyou/?p=444911","disqusUrl":"https://ww2.kqed.org/futureofyou/2019/01/28/a-mother-comes-to-terms-with-young-daughters-transgender-identity/","disqusTitle":"From Denial to Gratitude: A Mom Comes to Terms With Young Daughter's Transgender Identity","audioTrackLength":402,"path":"/futureofyou/444911/a-mother-comes-to-terms-with-young-daughters-transgender-identity","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcrmag/2019/01/BrooksTransKid.mp3","audioDuration":414000,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>Last year in the course of reporting the \u003ca href=\"https://www.kqed.org/futureofyou/440851/can-you-really-know-that-a-3-year-old-is-transgender\" target=\"_blank\" rel=\"noopener\">controversy\u003c/a> over socially transitioning young transgender children, I met a mother, Molly, and her then-six-year-old transgender daughter, Gracie. (The family, which lives in the Bay Area, doesn't want their last name used for reasons of privacy.) Gracie had socially transitioned at the age of four.\u003c/em>\u003c/p>\n\u003caside class=\"pullquote alignright\">'There was no way I was going to raise a child who was ashamed of who they are.'\u003c/aside>\n\u003cp>\u003cem>A \u003ca href=\"http://pediatrics.aappublications.org/content/137/3/e20154358\" target=\"_blank\" rel=\"noopener\">social transition\u003c/a> is distinct from one that involves medical procedures like taking hormones or undergoing surgery. But e\u003c/em>\u003cem>ven without a medical intervention, the decision by parents to allow their children to socially transition -- to publicly live in their new gender identity -- can be agonizing. S\u003c/em>\u003cem>ince Molly was so articulate in describing her emotional journey around her daughter's transition, from denial to acceptance to gratitude, we wanted to let her tell that story in her own words.\u003c/em>\u003c/p>\n\u003cp>\u003cem>The following is an edited transcript of Molly's answers during our interview ...\u003c/em>\u003c/p>\n\u003cp>\u003cstrong>'She Took Every Opportunity to Tell Us'\u003c/strong>\u003c/p>\n\u003cp>As soon as Gracie could tell us, it was, 'I'm a girl. I'm a sister. I'm a daughter. I'm that girl on that show. I'm that girl in that book. I'm the princess.' She took every opportunity to tell us she was a girl. She took every towel and blanket and turned it into long hair.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>We would not let her leave the house with any of those things, so it was all behind closed doors. It felt really isolating because here you have this child who's showing you all these signs of not being the way you thought they would or that society tells you they should.\u003c/p>\n\u003cp>It was really, really hard. I don't think people realize when they think about kids this age that it isn't something that they just wake up and say one day, and then you're like, \"Oh, that's what you want to be today? Great, like let's go explore that and let's be that.\" It's a battle. \u003cspan style=\"font-weight: 400\">It's difficult as a parent to watch those signs develop in your child, and to know your child's life is going to be harder because of who they are. Because of society wanting them to fit somewhere that your child is telling you they don't.\u003c/span>\u003c/p>\n\u003cp>\u003cstrong>Trucks, Dinosaurs and Superheroes\u003c/strong>\u003c/p>\n\u003cp>Early on, we tried to discourage Gracie's transgender identity, and we filled her world with trucks and dinosaurs and superheroes. We refused \"girl things.\" Like, 'No, you can't be Elsa for Halloween. You have to be Superman. No, you can't have the dolls for Christmas. We're going to get you a pirate ship.' We just really tried everything we could. That's the part I'm ashamed of now.\u003c/p>\n\u003cfigure id=\"attachment_441819\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"wp-image-441819 size-large\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2020/04/Gracie-1020x681.jpg\" alt=\"\" width=\"640\" height=\"427\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-1200x801.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-1180x788.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-960x641.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2020/04/Gracie-520x347.jpg 520w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003cfigcaption class=\"wp-caption-text\">Gracie, 7, poses for a picture in her room. (Lauren Hanussak/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>'What If He Changes His Mind?'\u003c/strong>\u003c/p>\n\u003cp>There's a lot of advice out there about following your child's lead if they're telling you that this is how they feel. But I always felt like how can I just follow their lead when I'm the one that they're looking to set those boundaries and guidelines?\u003c/p>\n\u003cp>We went to an expert. We asked, 'What if we do this? What if we let our son walk into the world in a dress with fairy wings, and crowns, and high heels, and even just in regular girl clothes? What if we let him do all of this, and he gets to express himself, and then he changes his mind, and we just went through all of this for nothing?'\u003c/p>\n\u003cp>The therapist said: \"That's not the question. The question is:\u003cbr>\nWhat if you \u003cem>don't\u003c/em> do it?\" She said, \"What will happen, and what I'm hearing when you describe the insistence of Gracie, is you're going to end up with a child who's anxious and depressed and feels ashamed.\u003c/p>\n\u003cp>As soon as I knew there was even a chance that my kid could feel ashamed of who they are, there was no way. I had to support. I had to listen. I had to let her steer a little bit. Because there was no way I was going to raise a child who was ashamed of who they are. Period. My job is to set boundaries and guidelines, but it's also to teach them to be proud of who they are no matter what, and that's what we're doing.\u003c/p>\n\u003cp>\u003cstrong>On Making the Decision to Let Gracie Become a Girl\u003c/strong>\u003c/p>\n\u003cp>Before the transition, the most incredible moments of having a child were passing us by. Life seemed sort of lackluster. You never got to see that sparkle, or that magic of a Christmas morning or a Halloween. Or just regular day-to day-happiness.\u003c/p>\n\u003cp>I got to a point where I was like, I can't do it anymore. I need to see my child light up. We were at Marshalls one day and they had a display of children's Easter dresses. I just remember thinking, 'Oh crap. How am I gonna steer you away from this?'\u003c/p>\n\u003cp>My husband was with me and we both looked at each other. We told Gracie: \"You can pick a dress.\" We let our then-son pick a dress, and Gracie would tear through the house to get to the dress the second she got home. For at least a year, she wore it all over the house . I just kicked myself for it taking so long to do that and to open the world to her like that. Also, for just caring so much about what other people would've thought.\u003c/p>\n\u003cp>\u003cstrong>Grief, Then Gratitude\u003c/strong>\u003c/p>\n\u003cp>There was a time when there was a lot of grief for me around the loss of the idea of my son. There was a point in time when I thought I may never recover from that. Now I look at pictures of Gracie as a baby and all I see is her face with the wrong haircut and the wrong clothes. It's completely shifted. There was a time when I didn't know that that would be possible.\u003c/p>\n\u003cp>But ultimately, my husband and I are both so grateful because this has given us the opportunity to lead more meaningful lives. Now we have this huge emphasis on teaching our kids about acceptance and tolerance, and being really proud of who you are and self-love. I hope that I would've emphasized those things anyway, but now there's no question.\u003c/p>\n\u003cp>I think that before the transition there was a part of Gracie that had to resign to whatever we told her, and so she was just sort of coasting.\u003c/p>\n\u003cp>Now she gets to really live.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/444911/a-mother-comes-to-terms-with-young-daughters-transgender-identity","authors":["80"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_1642","futureofyou_80","futureofyou_1641","futureofyou_1018"],"featImg":"futureofyou_446328","label":"futureofyou"},"futureofyou_446011":{"type":"posts","id":"futureofyou_446011","meta":{"index":"posts_1591205157","site":"futureofyou","id":"446011","score":null,"sort":[1545411707000]},"guestAuthors":[],"slug":"tobacco-giant-buys-35-percent-stake-in-juul","title":"Tobacco Giant Buys 35 Percent Stake in Juul","publishDate":1545411707,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Altria, one of the world's biggest tobacco companies, is spending nearly $13 billion to buy a huge stake in the vape company Juul as cigarette use continues to decline.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Today, we have been joined by an unlikely – and seemingly counterintuitive – investor in our journey. ... We understand the controversy and skepticism that comes with an affiliation and partnership with the largest tobacco company in the US. We were skeptical as well.'\u003ccite>\u003ca href=\"https://contextly.com/redirect/?id=c7RcpktiX9:446011:4068:13:::sidebar:5c1d1f75d944b5-96249117\" target=\"_blank\" rel=\"noopener\">Juul press release\u003c/a>\u003c/cite>\u003c/aside>\n\u003cp>The Marlboro maker said Thursday that it will take a 35 percent share of Juul, putting the value of the company at $38 billion, larger than Ford Motor Co., Delta Air Lines or the retail giant Target.\u003c/p>\n\u003cp>\"We are taking significant action to prepare for a future where adult smokers overwhelmingly choose non-combustible products over cigarettes,\" Altria Chairman and CEO Howard Willard said in a prepared statement.\u003c/p>\n\u003cp>E-cigarettes and other vaping devices have been sold in the U.S. since 2007 and have grown into a $6.6 billion business, and it is already intersecting with another seismic shift in the U.S. — the legalization of marijuana across the U.S.\u003c/p>\n\u003cp>The investment comes about two weeks after Altria stepped into the cannabis market with an investment of around $2 billion in Cronos Group, the Canadian medical and recreational marijuana provider.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>North American consumer spending on legal cannabis is expected to grow from $9.2 billion in 2017, to $47.3 billion by 2027, according to Arcview Market Research, a cannabis-focused investment firm.\u003c/p>\n\u003cp>Altria Group Inc. isn't the only major corporation attempting to incorporate marijuana sales.\u003c/p>\n\u003cp>[contextly_sidebar id=\"PIX3Hytk1X1Ix98885tbxQ3hOeDiaZra\"]This week Anheuser-Busch InBev, the maker of Budweiser, partnered with medical cannabis company Tilray in a $100 million deal to research cannabis-infused drinks for the Canadian market. In August, Constellation Brands announced a $4 billion investment in another Canadian pot producer, Canopy Growth Corp., the largest to date by a major U.S. corporation in the cannabis market.\u003c/p>\n\u003cp>With nicotine-based vaping, devices heat a flavored nicotine solution into an inhalable vapor. They have been pitched to adult smokers as a less-harmful alternative to cigarettes, though there's been little research on the long-term health effects or on whether they help people quit.\u003c/p>\n\u003cp>\u003cstrong>Health Officials Worried\u003c/strong>\u003c/p>\n\u003cp>The growing popularity of e-cigarettes has alarmed a number of health officials.\u003c/p>\n\u003cp>This week, Surgeon General Jerome Adams said parents, teachers, health professionals and government officials must take \"aggressive steps\" to keep children from using e-cigarettes. Federal law bars the sale of e-cigarettes to those under 18.\u003c/p>\n\u003cp>Dr. John Maa of the American Heart Association’s Bay Area Division called the Altria acquisition a troubling development.\u003c/p>\n\u003cp>\"For over five years, the electronic cigarette advocates and proponents have touted how they have been anti-Big Tobacco,\" Maa said. \"But to see Big Tobacco and Juul join in a partnership now creates a public health nightmare.\"\u003c/p>\n\u003cp>There is a scramble in the U.S. to reverse a recent explosion in teen vaping that public health officials fear could undermine decades of declines in tobacco use.\u003c/p>\n\u003cp>An estimated 3.6 million U.S. teens are now using e-cigarettes, representing 1 in 5 high school students and 1 in 20 middle schoolers, according to the latest federal figures.\u003c/p>\n\u003cp>Juul said Thursday that it recently began to take actions intended to prevent underage vaping. The company shut down its Facebook and Instagram accounts last month and halted in-store sales of flavored pods, which were viewed by many critics as a direct play for younger users.\u003c/p>\n\u003cp>Juul also said that it's also enhancing age-verification for its online sales.\u003cbr>\nJuul Labs Inc., based in San Francisco, said it had initially hesitated to accept the investment from Altria.\u003c/p>\n\u003cp>\"But over the course of the last several months we were convinced by actions, not words, that in fact this partnership could help accelerate our success switching adult smokers,\" Juul said.\u003c/p>\n\u003cp>Juul will remain an independent company, but it gains access to Altria's massive infrastructure and reach. Namely, Altria will help Juul secure space on store shelves beside traditional cigarettes. It will also help Juul reach smokers via cigarette pack inserts and mailings.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Under the agreement, Altria's only entry into the e-cigarette market will be through Juul for at least six years.\u003c/p>\n\n","blocks":[],"excerpt":"Altria, make of Marlboro cigarettes, said it will take a 35 percent share of Juul, putting the value of the company at $38 billion, larger than Ford Motor Co., Delta Air Lines or Target.","status":"publish","parent":0,"modified":1545414903,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":726},"headData":{"title":"Tobacco Giant Buys 35 Percent Stake in Juul | KQED","description":"Altria, make of Marlboro cigarettes, said it will take a 35 percent share of Juul, putting the value of the company at $38 billion, larger than Ford Motor Co., Delta Air Lines or Target.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Tobacco Giant Buys 35 Percent Stake in Juul","datePublished":"2018-12-21T17:01:47.000Z","dateModified":"2018-12-21T17:55:03.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"446011 https://ww2.kqed.org/futureofyou/?p=446011","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/12/21/tobacco-giant-buys-35-percent-stake-in-juul/","disqusTitle":"Tobacco Giant Buys 35 Percent Stake in Juul","nprByline":"Matthew Perrone\u003cbr />Associated Press","path":"/futureofyou/446011/tobacco-giant-buys-35-percent-stake-in-juul","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Altria, one of the world's biggest tobacco companies, is spending nearly $13 billion to buy a huge stake in the vape company Juul as cigarette use continues to decline.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Today, we have been joined by an unlikely – and seemingly counterintuitive – investor in our journey. ... We understand the controversy and skepticism that comes with an affiliation and partnership with the largest tobacco company in the US. We were skeptical as well.'\u003ccite>\u003ca href=\"https://contextly.com/redirect/?id=c7RcpktiX9:446011:4068:13:::sidebar:5c1d1f75d944b5-96249117\" target=\"_blank\" rel=\"noopener\">Juul press release\u003c/a>\u003c/cite>\u003c/aside>\n\u003cp>The Marlboro maker said Thursday that it will take a 35 percent share of Juul, putting the value of the company at $38 billion, larger than Ford Motor Co., Delta Air Lines or the retail giant Target.\u003c/p>\n\u003cp>\"We are taking significant action to prepare for a future where adult smokers overwhelmingly choose non-combustible products over cigarettes,\" Altria Chairman and CEO Howard Willard said in a prepared statement.\u003c/p>\n\u003cp>E-cigarettes and other vaping devices have been sold in the U.S. since 2007 and have grown into a $6.6 billion business, and it is already intersecting with another seismic shift in the U.S. — the legalization of marijuana across the U.S.\u003c/p>\n\u003cp>The investment comes about two weeks after Altria stepped into the cannabis market with an investment of around $2 billion in Cronos Group, the Canadian medical and recreational marijuana provider.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>North American consumer spending on legal cannabis is expected to grow from $9.2 billion in 2017, to $47.3 billion by 2027, according to Arcview Market Research, a cannabis-focused investment firm.\u003c/p>\n\u003cp>Altria Group Inc. isn't the only major corporation attempting to incorporate marijuana sales.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>This week Anheuser-Busch InBev, the maker of Budweiser, partnered with medical cannabis company Tilray in a $100 million deal to research cannabis-infused drinks for the Canadian market. In August, Constellation Brands announced a $4 billion investment in another Canadian pot producer, Canopy Growth Corp., the largest to date by a major U.S. corporation in the cannabis market.\u003c/p>\n\u003cp>With nicotine-based vaping, devices heat a flavored nicotine solution into an inhalable vapor. They have been pitched to adult smokers as a less-harmful alternative to cigarettes, though there's been little research on the long-term health effects or on whether they help people quit.\u003c/p>\n\u003cp>\u003cstrong>Health Officials Worried\u003c/strong>\u003c/p>\n\u003cp>The growing popularity of e-cigarettes has alarmed a number of health officials.\u003c/p>\n\u003cp>This week, Surgeon General Jerome Adams said parents, teachers, health professionals and government officials must take \"aggressive steps\" to keep children from using e-cigarettes. Federal law bars the sale of e-cigarettes to those under 18.\u003c/p>\n\u003cp>Dr. John Maa of the American Heart Association’s Bay Area Division called the Altria acquisition a troubling development.\u003c/p>\n\u003cp>\"For over five years, the electronic cigarette advocates and proponents have touted how they have been anti-Big Tobacco,\" Maa said. \"But to see Big Tobacco and Juul join in a partnership now creates a public health nightmare.\"\u003c/p>\n\u003cp>There is a scramble in the U.S. to reverse a recent explosion in teen vaping that public health officials fear could undermine decades of declines in tobacco use.\u003c/p>\n\u003cp>An estimated 3.6 million U.S. teens are now using e-cigarettes, representing 1 in 5 high school students and 1 in 20 middle schoolers, according to the latest federal figures.\u003c/p>\n\u003cp>Juul said Thursday that it recently began to take actions intended to prevent underage vaping. The company shut down its Facebook and Instagram accounts last month and halted in-store sales of flavored pods, which were viewed by many critics as a direct play for younger users.\u003c/p>\n\u003cp>Juul also said that it's also enhancing age-verification for its online sales.\u003cbr>\nJuul Labs Inc., based in San Francisco, said it had initially hesitated to accept the investment from Altria.\u003c/p>\n\u003cp>\"But over the course of the last several months we were convinced by actions, not words, that in fact this partnership could help accelerate our success switching adult smokers,\" Juul said.\u003c/p>\n\u003cp>Juul will remain an independent company, but it gains access to Altria's massive infrastructure and reach. Namely, Altria will help Juul secure space on store shelves beside traditional cigarettes. It will also help Juul reach smokers via cigarette pack inserts and mailings.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Under the agreement, Altria's only entry into the e-cigarette market will be through Juul for at least six years.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/446011/tobacco-giant-buys-35-percent-stake-in-juul","authors":["byline_futureofyou_446011"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_1479","futureofyou_80"],"featImg":"futureofyou_440488","label":"futureofyou"},"futureofyou_445929":{"type":"posts","id":"futureofyou_445929","meta":{"index":"posts_1591205157","site":"futureofyou","id":"445929","score":null,"sort":[1545263282000]},"guestAuthors":[],"slug":"what-were-2018s-biggest-digital-health-stories-an-interview-with-cnbcs-christina-farr","title":"What Were the Year's Biggest Digital Health Stories? An Interview With CNBC's Christina Farr","publishDate":1545263282,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"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","blocks":[],"excerpt":"The tech journalist discusses where the digital health industry is headed after a year in which Big Tech made some Big investments.","status":"publish","parent":0,"modified":1545332340,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":33,"wordCount":1389},"headData":{"title":"What Were the Year's Biggest Digital Health Stories? An Interview With CNBC's Christina Farr | KQED","description":"The tech journalist discusses where the digital health industry is headed after a year in which Big Tech made some Big investments.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"What Were the Year's Biggest Digital Health Stories? An Interview With CNBC's Christina Farr","datePublished":"2018-12-19T23:48:02.000Z","dateModified":"2018-12-20T18:59:00.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"445929 https://ww2.kqed.org/futureofyou/?p=445929","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/12/19/what-were-2018s-biggest-digital-health-stories-an-interview-with-cnbcs-christina-farr/","disqusTitle":"What Were the Year's Biggest Digital Health Stories? An Interview With CNBC's Christina Farr","source":"Digital Health","path":"/futureofyou/445929/what-were-2018s-biggest-digital-health-stories-an-interview-with-cnbcs-christina-farr","audioTrackLength":null,"parsedContent":[{"type":"contentString","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>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","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>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/445929/what-were-2018s-biggest-digital-health-stories-an-interview-with-cnbcs-christina-farr","authors":["80"],"categories":["futureofyou_1060","futureofyou_1062","futureofyou_1","futureofyou_73"],"tags":["futureofyou_26","futureofyou_80"],"featImg":"futureofyou_274615","label":"source_futureofyou_445929"},"futureofyou_445776":{"type":"posts","id":"futureofyou_445776","meta":{"index":"posts_1591205157","site":"futureofyou","id":"445776","score":null,"sort":[1544034704000]},"guestAuthors":[],"slug":"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","publishDate":1544034704,"format":"aside","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"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","blocks":[],"excerpt":"It's called a 'wallet biopsy' -- requiring proof of payment for organ transplants and post-operative care. And it's common, transplant experts say.","status":"publish","parent":0,"modified":1544037026,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":34,"wordCount":1300},"headData":{"title":"No Cash, No Organ Transplant: Patients Must Prove They Can Pay Enormous Bills | KQED","description":"It's called a 'wallet biopsy' -- requiring proof of payment for organ transplants and post-operative care. And it's common, transplant experts say.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"No Cash, No Organ Transplant: Patients Must Prove They Can Pay Enormous Bills","datePublished":"2018-12-05T18:31:44.000Z","dateModified":"2018-12-05T19:10:26.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"445776 https://ww2.kqed.org/futureofyou/?p=445776","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/12/05/no-cash-no-organ-transplant-patients-must-prove-they-can-pay-enormous-bills/","disqusTitle":"No Cash, No Organ Transplant: Patients Must Prove They Can Pay Enormous Bills","nprByline":"JoNel Aleccia\u003cbr />Kaiser Health News","path":"/futureofyou/445776/no-cash-no-organ-transplant-patients-must-prove-they-can-pay-enormous-bills","audioTrackLength":null,"parsedContent":[{"type":"contentString","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>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","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>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\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\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/445776/no-cash-no-organ-transplant-patients-must-prove-they-can-pay-enormous-bills","authors":["byline_futureofyou_445776"],"categories":["futureofyou_452","futureofyou_1062","futureofyou_73"],"tags":["futureofyou_80"],"featImg":"futureofyou_445781","label":"futureofyou"},"futureofyou_445693":{"type":"posts","id":"futureofyou_445693","meta":{"index":"posts_1591205157","site":"futureofyou","id":"445693","score":null,"sort":[1543824116000]},"guestAuthors":[],"slug":"medical-detectives-the-last-hope-for-families-coping-with-rare-diseases","title":"Medical Detectives: The Last Hope for Families Coping With Rare Diseases","publishDate":1543824116,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>All over the country, specialized strike teams of doctors are giving hope to families who are desperately searching for a diagnosis.\u003c/p>\n\u003cp>The medical sleuths have cracked more than a third of the 382 patient cases they're pursuing, according to a recent \u003ca href=\"https://www.nejm.org/doi/full/10.1056/NEJMoa1714458?query=featured_home\" target=\"_blank\" rel=\"noopener\">paper\u003c/a> in the New England Journal of Medicine.\u003c/p>\n\u003cp>The specialists, scattered across 12 clinics nationwide, form the \u003ca href=\"https://undiagnosed.hms.harvard.edu/\" target=\"_blank\" rel=\"noopener\">Undiagnosed Disease Network \u003c/a>(UDN). Since the program began in 2014 they've identified 31 previously unknown syndromes.\u003c/p>\n\u003caside class=\"pullquote alignright\">'One letter of 6 billion can cause these incredibly devastating diseases.'\u003ccite>Euan Ashley, Stanford University cardiologist\u003c/cite>\u003c/aside>\n\u003cp>“It was like Sherlock Holmes,\" says Euan Ashley, a professor of medicine at Stanford University. \"Patients would come with mystery diseases and we would try and solve them.”\u003c/p>\n\u003cp>Although rare diseases are individually very uncommon, collectively they're surprisingly pervasive. In fact, if grouped together into a single category, they afflict \u003ca href=\"https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases\" target=\"_blank\" rel=\"noopener\">one in 20\u003c/a> people in the population. That's on par with \u003ca href=\"http://www.who.int/news-room/fact-sheets/detail/diabetes\" target=\"_blank\" rel=\"noopener\">diabetes\u003c/a>, which is often described as a national epidemic.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>For the people coping with mystery conditions, cracking these cases can be life-saving or life-changing. Take the perplexing case of the two Miller boys from Marin County.\u003c/p>\n\u003cp>\u003cstrong>Disabled Bodies, Warm Hearts\u003c/strong>\u003c/p>\n\u003cp>Five-year-old Chase and seven-year-old Carson have alert minds and radiant smiles but very uncooperative bodies. The blond blue-eyed brothers are not able to sit, stand, speak or feed themselves. They've spent their lives in wheelchairs.\u003c/p>\n\u003cp>Even though they attend a mainstream elementary school and are cognitively functioning on par with their peers, they are both still in diapers. The boys require constant care at home or attentive individual aides in the classroom.\u003c/p>\n\u003cfigure id=\"attachment_445696\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-445696\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-800x1100.jpg\" alt=\"\" width=\"800\" height=\"1100\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-800x1100.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-160x220.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-768x1056.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-1020x1402.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-873x1200.jpg 873w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-1180x1622.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-960x1319.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-240x330.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-375x515.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-520x715.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878.jpg 1274w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Chase Miller using a walker. \u003ccite>(Andrew Ross-Perry)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>A Four-Year Diagnostic Odyssey\u003c/strong>\u003c/p>\n\u003cp>Seven years ago the boys' parents, Nikki and Danny Miller, began noticing their first son wasn’t reaching milestones like rolling over or crawling. Instead, they witnessed spastic movements and tiny hands repeatedly balling into fists. Babbling never turned into words.\u003c/p>\n\u003cp>When Carson was about a year old he was misdiagnosed with cerebral palsy. Then when the same developmental delays emerged in their second-born, the parents started asking more questions, which led to a four-year diagnostic odyssey with countless inconclusive lab tests. One after another, specialists shrugged their shoulders.\u003c/p>\n\u003cp>“It’s really tough because as a parent you blame yourself,\" says Danny. \"What did I do wrong? Is there something wrong with my genes?”\u003c/p>\n\u003cfigure id=\"attachment_445698\" class=\"wp-caption alignright\" style=\"max-width: 1440px\">\u003cimg class=\"wp-image-445698 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/11/IMG_6670-e1543531634836.jpg\" alt=\"\" width=\"1440\" height=\"1920\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-800x1067.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-768x1024.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-1020x1360.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-900x1200.jpg 900w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-1180x1573.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-960x1280.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-240x320.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-375x500.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-520x693.jpg 520w\" sizes=\"(max-width: 1440px) 100vw, 1440px\">\u003cfigcaption class=\"wp-caption-text\">Carson Miller in his wheelchair. \u003ccite>(Andrew Ross-Perry)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Cracking the Case\u003c/strong>\u003c/p>\n\u003cp>Finally, two years ago Danny applied to the Stanford UDN clinic. After reviewing the boys' medical history, researchers ordered full genome sequencing for all four family members. It was the first time every \u003cem>one\u003c/em> of their 20,000 genes would be mapped. Until recently this type of extensive testing was prohibitively expensive.\u003c/p>\n\u003cp>“We're rapidly moving to the point where it makes more sense to go straight to the genome rather than measuring one gene, then another, then another,” says Ashley as he pulls out his laptop to point out the clue within the family’s genetics.\u003c/p>\n\u003cp>The screen is divided into several rows and columns with long strings of letters that code for human DNA. Ashley points to a colored section in the MECR gene.\u003c/p>\n\u003cp>“You can see the two boys have inherited this variant that came from their father,” says Ashley. “One letter of 6 billion can cause these incredibly devastating diseases,\" says Ashley.\u003c/p>\n\u003cp>Unfortunately, the boys also inherited a different variant from their mother in the same gene. Neither of the boys' two copies of the gene works properly, which is why Carson and Chase have a brain disease called \u003ca href=\"https://rarediseases.info.nih.gov/diseases/13488/mepan-syndrome\">MEPAN syndrome\u003c/a>. The genetic mutation affects the part of the brain that controls movement. Only 13 people in the world are currently known to have it, and there is only one published scientific \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5142118/\">paper\u003c/a> on it.\u003c/p>\n\u003cp>Currently, there is no treatment for MEPAN, but Danny and Nikki are hoping a heavy cocktail of vitamins and supplements will slow their boys’ brain decline. The parents also take the boys to physical, occupational and speech therapy to strengthen their muscles and teach them life skills. The boys communicate with computers attached to their wheelchairs.\u003c/p>\n\u003cp>Discovering what was wrong was only a single step on the family's journey, though a crucial one. A diagnosis is key to refining treatment and potentially attracting more scientific interest, which may someday lead to a cure.\u003c/p>\n\u003cp>The father's voice cracks as he contemplates the road ahead.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“Recently at school Carson built a sentence that said, ‘I hate my wheelchair,’” recalls Danny. “Because I know that he wants to be up running around, playing tag, and hide and seek with the other kids. That may not be the way things work out. But I’m going to do everything in my power to try and make sure that does happen.”\u003c/p>\n\n","blocks":[],"excerpt":"A unique national network of doctors provides hope and answers for families who have nowhere else to turn. ","status":"publish","parent":0,"modified":1543970277,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":25,"wordCount":842},"headData":{"title":"Medical Detectives: The Last Hope for Families Coping With Rare Diseases | KQED","description":"A unique national network of doctors provides hope and answers for families who have nowhere else to turn. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Medical Detectives: The Last Hope for Families Coping With Rare Diseases","datePublished":"2018-12-03T08:01:56.000Z","dateModified":"2018-12-05T00:37:57.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"445693 https://ww2.kqed.org/futureofyou/?p=445693","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/12/03/medical-detectives-the-last-hope-for-families-coping-with-rare-diseases/","disqusTitle":"Medical Detectives: The Last Hope for Families Coping With Rare Diseases","audioUrl":"https://www.kqed.org/.stream/anon/radio/science/2018/12/McClurgUndiagnosedDiseaseNetwork.mp3","audioTrackLength":429,"path":"/futureofyou/445693/medical-detectives-the-last-hope-for-families-coping-with-rare-diseases","parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>All over the country, specialized strike teams of doctors are giving hope to families who are desperately searching for a diagnosis.\u003c/p>\n\u003cp>The medical sleuths have cracked more than a third of the 382 patient cases they're pursuing, according to a recent \u003ca href=\"https://www.nejm.org/doi/full/10.1056/NEJMoa1714458?query=featured_home\" target=\"_blank\" rel=\"noopener\">paper\u003c/a> in the New England Journal of Medicine.\u003c/p>\n\u003cp>The specialists, scattered across 12 clinics nationwide, form the \u003ca href=\"https://undiagnosed.hms.harvard.edu/\" target=\"_blank\" rel=\"noopener\">Undiagnosed Disease Network \u003c/a>(UDN). Since the program began in 2014 they've identified 31 previously unknown syndromes.\u003c/p>\n\u003caside class=\"pullquote alignright\">'One letter of 6 billion can cause these incredibly devastating diseases.'\u003ccite>Euan Ashley, Stanford University cardiologist\u003c/cite>\u003c/aside>\n\u003cp>“It was like Sherlock Holmes,\" says Euan Ashley, a professor of medicine at Stanford University. \"Patients would come with mystery diseases and we would try and solve them.”\u003c/p>\n\u003cp>Although rare diseases are individually very uncommon, collectively they're surprisingly pervasive. In fact, if grouped together into a single category, they afflict \u003ca href=\"https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases\" target=\"_blank\" rel=\"noopener\">one in 20\u003c/a> people in the population. That's on par with \u003ca href=\"http://www.who.int/news-room/fact-sheets/detail/diabetes\" target=\"_blank\" rel=\"noopener\">diabetes\u003c/a>, which is often described as a national epidemic.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>For the people coping with mystery conditions, cracking these cases can be life-saving or life-changing. Take the perplexing case of the two Miller boys from Marin County.\u003c/p>\n\u003cp>\u003cstrong>Disabled Bodies, Warm Hearts\u003c/strong>\u003c/p>\n\u003cp>Five-year-old Chase and seven-year-old Carson have alert minds and radiant smiles but very uncooperative bodies. The blond blue-eyed brothers are not able to sit, stand, speak or feed themselves. They've spent their lives in wheelchairs.\u003c/p>\n\u003cp>Even though they attend a mainstream elementary school and are cognitively functioning on par with their peers, they are both still in diapers. The boys require constant care at home or attentive individual aides in the classroom.\u003c/p>\n\u003cfigure id=\"attachment_445696\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-445696\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-800x1100.jpg\" alt=\"\" width=\"800\" height=\"1100\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-800x1100.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-160x220.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-768x1056.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-1020x1402.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-873x1200.jpg 873w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-1180x1622.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-960x1319.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-240x330.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-375x515.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878-520x715.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/Millers-20171124-12-e1543531375878.jpg 1274w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Chase Miller using a walker. \u003ccite>(Andrew Ross-Perry)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>A Four-Year Diagnostic Odyssey\u003c/strong>\u003c/p>\n\u003cp>Seven years ago the boys' parents, Nikki and Danny Miller, began noticing their first son wasn’t reaching milestones like rolling over or crawling. Instead, they witnessed spastic movements and tiny hands repeatedly balling into fists. Babbling never turned into words.\u003c/p>\n\u003cp>When Carson was about a year old he was misdiagnosed with cerebral palsy. Then when the same developmental delays emerged in their second-born, the parents started asking more questions, which led to a four-year diagnostic odyssey with countless inconclusive lab tests. One after another, specialists shrugged their shoulders.\u003c/p>\n\u003cp>“It’s really tough because as a parent you blame yourself,\" says Danny. \"What did I do wrong? Is there something wrong with my genes?”\u003c/p>\n\u003cfigure id=\"attachment_445698\" class=\"wp-caption alignright\" style=\"max-width: 1440px\">\u003cimg class=\"wp-image-445698 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/11/IMG_6670-e1543531634836.jpg\" alt=\"\" width=\"1440\" height=\"1920\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-800x1067.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-768x1024.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-1020x1360.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-900x1200.jpg 900w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-1180x1573.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-960x1280.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-240x320.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-375x500.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/11/IMG_6670-e1543531634836-520x693.jpg 520w\" sizes=\"(max-width: 1440px) 100vw, 1440px\">\u003cfigcaption class=\"wp-caption-text\">Carson Miller in his wheelchair. \u003ccite>(Andrew Ross-Perry)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Cracking the Case\u003c/strong>\u003c/p>\n\u003cp>Finally, two years ago Danny applied to the Stanford UDN clinic. After reviewing the boys' medical history, researchers ordered full genome sequencing for all four family members. It was the first time every \u003cem>one\u003c/em> of their 20,000 genes would be mapped. Until recently this type of extensive testing was prohibitively expensive.\u003c/p>\n\u003cp>“We're rapidly moving to the point where it makes more sense to go straight to the genome rather than measuring one gene, then another, then another,” says Ashley as he pulls out his laptop to point out the clue within the family’s genetics.\u003c/p>\n\u003cp>The screen is divided into several rows and columns with long strings of letters that code for human DNA. Ashley points to a colored section in the MECR gene.\u003c/p>\n\u003cp>“You can see the two boys have inherited this variant that came from their father,” says Ashley. “One letter of 6 billion can cause these incredibly devastating diseases,\" says Ashley.\u003c/p>\n\u003cp>Unfortunately, the boys also inherited a different variant from their mother in the same gene. Neither of the boys' two copies of the gene works properly, which is why Carson and Chase have a brain disease called \u003ca href=\"https://rarediseases.info.nih.gov/diseases/13488/mepan-syndrome\">MEPAN syndrome\u003c/a>. The genetic mutation affects the part of the brain that controls movement. Only 13 people in the world are currently known to have it, and there is only one published scientific \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5142118/\">paper\u003c/a> on it.\u003c/p>\n\u003cp>Currently, there is no treatment for MEPAN, but Danny and Nikki are hoping a heavy cocktail of vitamins and supplements will slow their boys’ brain decline. The parents also take the boys to physical, occupational and speech therapy to strengthen their muscles and teach them life skills. The boys communicate with computers attached to their wheelchairs.\u003c/p>\n\u003cp>Discovering what was wrong was only a single step on the family's journey, though a crucial one. A diagnosis is key to refining treatment and potentially attracting more scientific interest, which may someday lead to a cure.\u003c/p>\n\u003cp>The father's voice cracks as he contemplates the road ahead.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“Recently at school Carson built a sentence that said, ‘I hate my wheelchair,’” recalls Danny. “Because I know that he wants to be up running around, playing tag, and hide and seek with the other kids. That may not be the way things work out. But I’m going to do everything in my power to try and make sure that does happen.”\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/445693/medical-detectives-the-last-hope-for-families-coping-with-rare-diseases","authors":["11229"],"categories":["futureofyou_1","futureofyou_73","futureofyou_1575"],"tags":["futureofyou_1275","futureofyou_120","futureofyou_39","futureofyou_80","futureofyou_1332","futureofyou_1639"],"featImg":"futureofyou_445695","label":"futureofyou"},"futureofyou_445528":{"type":"posts","id":"futureofyou_445528","meta":{"index":"posts_1591205157","site":"futureofyou","id":"445528","score":null,"sort":[1542403324000]},"guestAuthors":[],"slug":"ucsf-study-probes-long-term-effects-of-head-trauma-and-not-just-in-football","title":"UCSF Study Probes Long-Term Effects of Head Trauma -- and Not Just in Football","publishDate":1542403324,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Traumatic brain injury has long been associated with combat and, more recently, contact sports like football. Now head injuries among \"the rest of us\" are getting a long look from researchers, too.\u003c/p>\n\u003caside class=\"alignright\">\u003ca href=\"https://www.kqed.org/futureofyou/441252/proposed-california-ban-on-kids-football-sacked-early-and-hard\" target=\"_blank\" rel=\"noopener\">California Ban on Kids Football Sacked Early\u003c/a>\u003c/aside>\n\u003cp>\"They're actually very, very common,\" said Geoff Manly, who chairs the Dept. of Neurosurgery at UCSF and is leading the study. He says nearly 3 million people with head injuries turn up at U.S. emergency rooms every year, caused by everything from traffic accidents to falling down stairs to being thrown off a bicycle. Manley says the numbers are increasing yearly \"on a scale that dwarfs\" the problem in sports alone.\u003c/p>\n\u003cp>\"Historically, we've sort of treated this as an event, rather than a process,\" he said. \"And now we see that many people are suffering long-term consequences of these injuries.\"\u003c/p>\n\u003cp>The National Football League is putting up nearly $3.5 million to fund the long-term study of \"community-acquired\" concussions and the long-range effects they have on some patients, such as depression, dementia, Parkinson's and Alzheimer's.\u003c/p>\n\u003cp>The study will track patients from the time they present for emergency care to as long as seven years beyond, to try to determine why some patients are able to shake off head trauma, while others are plagued with long-term and sometimes fatal consequences.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"It's probably not just by chance that there's a strong association between prior history of TBI and the development of some of these disorders,\" says Manley. \"We're trying to figure out what those risk factors are and hoping that in identifying these risk factors, we can find a mechanism.\"\u003c/p>\n\u003cp>With funding from the NFL's \u003ca href=\"https://protect-us.mimecast.com/s/h_yFCyPmRxsr24VOiZjhit?domain=email.prnewswire.com\">Play Smart - Play Safe\u003c/a> initiative, Manley says, the study will track about 2,700 patients whose data has \u003ca href=\"https://protect-us.mimecast.com/s/5K4lCzpn0ysMwrVWUXH4uq?domain=email.prnewswire.com\" target=\"_blank\" rel=\"noopener\">already been gathered\u003c/a> by major trauma centers around the country. The research team will collect data on brain imaging, blood-based biomarkers and outcome assessments of psychological health, physical recovery and functional status.\u003c/p>\n\u003cp>The results could also provide insights into a condition known as chronic traumatic encephalopathy, which has turned up in alarming numbers of professional football players and is blamed for the tragic deaths of former stars like Pittsburgh Steelers center \"Iron\" Mike Webster and San Diego Chargers linebacker Junior Seau.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>In the wake of these high-profile cases and \u003ca href=\"https://www.nytimes.com/2018/10/05/sports/junior-seau-suit-nfl.html\" target=\"_blank\" rel=\"noopener\">associated litigation\u003c/a>, the NFL has set aside $40 million in funding for medical research, primarily dedicated to neuroscience.\u003c/p>\n\n","blocks":[],"excerpt":"Long-term consequences of concussion aren't just a problem for combat veterans and football players. A new study seeks to find the reasons why.","status":"publish","parent":0,"modified":1542403607,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":11,"wordCount":415},"headData":{"title":"UCSF Study Probes Long-Term Effects of Head Trauma -- and Not Just in Football | KQED","description":"Long-term consequences of concussion aren't just a problem for combat veterans and football players. A new study seeks to find the reasons why.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"UCSF Study Probes Long-Term Effects of Head Trauma -- and Not Just in Football","datePublished":"2018-11-16T21:22:04.000Z","dateModified":"2018-11-16T21:26:47.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"445528 https://ww2.kqed.org/futureofyou/?p=445528","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/11/16/ucsf-study-probes-long-term-effects-of-head-trauma-and-not-just-in-football/","disqusTitle":"UCSF Study Probes Long-Term Effects of Head Trauma -- and Not Just in Football","path":"/futureofyou/445528/ucsf-study-probes-long-term-effects-of-head-trauma-and-not-just-in-football","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Traumatic brain injury has long been associated with combat and, more recently, contact sports like football. Now head injuries among \"the rest of us\" are getting a long look from researchers, too.\u003c/p>\n\u003caside class=\"alignright\">\u003ca href=\"https://www.kqed.org/futureofyou/441252/proposed-california-ban-on-kids-football-sacked-early-and-hard\" target=\"_blank\" rel=\"noopener\">California Ban on Kids Football Sacked Early\u003c/a>\u003c/aside>\n\u003cp>\"They're actually very, very common,\" said Geoff Manly, who chairs the Dept. of Neurosurgery at UCSF and is leading the study. He says nearly 3 million people with head injuries turn up at U.S. emergency rooms every year, caused by everything from traffic accidents to falling down stairs to being thrown off a bicycle. Manley says the numbers are increasing yearly \"on a scale that dwarfs\" the problem in sports alone.\u003c/p>\n\u003cp>\"Historically, we've sort of treated this as an event, rather than a process,\" he said. \"And now we see that many people are suffering long-term consequences of these injuries.\"\u003c/p>\n\u003cp>The National Football League is putting up nearly $3.5 million to fund the long-term study of \"community-acquired\" concussions and the long-range effects they have on some patients, such as depression, dementia, Parkinson's and Alzheimer's.\u003c/p>\n\u003cp>The study will track patients from the time they present for emergency care to as long as seven years beyond, to try to determine why some patients are able to shake off head trauma, while others are plagued with long-term and sometimes fatal consequences.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"It's probably not just by chance that there's a strong association between prior history of TBI and the development of some of these disorders,\" says Manley. \"We're trying to figure out what those risk factors are and hoping that in identifying these risk factors, we can find a mechanism.\"\u003c/p>\n\u003cp>With funding from the NFL's \u003ca href=\"https://protect-us.mimecast.com/s/h_yFCyPmRxsr24VOiZjhit?domain=email.prnewswire.com\">Play Smart - Play Safe\u003c/a> initiative, Manley says, the study will track about 2,700 patients whose data has \u003ca href=\"https://protect-us.mimecast.com/s/5K4lCzpn0ysMwrVWUXH4uq?domain=email.prnewswire.com\" target=\"_blank\" rel=\"noopener\">already been gathered\u003c/a> by major trauma centers around the country. The research team will collect data on brain imaging, blood-based biomarkers and outcome assessments of psychological health, physical recovery and functional status.\u003c/p>\n\u003cp>The results could also provide insights into a condition known as chronic traumatic encephalopathy, which has turned up in alarming numbers of professional football players and is blamed for the tragic deaths of former stars like Pittsburgh Steelers center \"Iron\" Mike Webster and San Diego Chargers linebacker Junior Seau.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>In the wake of these high-profile cases and \u003ca href=\"https://www.nytimes.com/2018/10/05/sports/junior-seau-suit-nfl.html\" target=\"_blank\" rel=\"noopener\">associated litigation\u003c/a>, the NFL has set aside $40 million in funding for medical research, primarily dedicated to neuroscience.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/445528/ucsf-study-probes-long-term-effects-of-head-trauma-and-not-just-in-football","authors":["221"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_1414","futureofyou_80"],"featImg":"futureofyou_445545","label":"futureofyou"},"futureofyou_445426":{"type":"posts","id":"futureofyou_445426","meta":{"index":"posts_1591205157","site":"futureofyou","id":"445426","score":null,"sort":[1542310417000]},"guestAuthors":[],"slug":"what-we-know-and-what-we-dont-about-e-cigarette-health-risks","title":"E-Cigarette Health Risks: What We Know, What We Don't","publishDate":1542310417,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>There are two ways e-cigarettes can affect your health. One is direct, from the product itself. The other stems from the fact that teenagers who vape are more likely to become addicted to nicotine and to try regular cigarettes.\u003c/p>\n\u003cp>Food and Drug Administration Commissioner Scott Gottlieb had this in mind last November when he called for tightening rules governing the sale of most flavored versions of electronic cigarettes \"I will not allow a generation of children to become addicted to nicotine through e-cigarettes,\" Gottlieb said in a statement.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">As for direct harm, while there are reams of studies on the negative effects of cigarette smoke, far fewer exist on electronic cigarettes. \u003c/span>Preliminary\u003cspan style=\"font-weight: 400\"> research does suggest e-cigarettes may harm the lungs and heart. It should be noted, however, that \u003cem>h\u003c/em>\u003c/span>\u003cspan style=\"font-weight: 400\">\u003cem>uman\u003c/em> clinical studies testing vaping products are extremely limited; most of what we know comes from research on cell cultures and animals. Plus it is difficult to study the effects of e-cigarettes when there is such a wide variety of rapidly changing delivery devices.\u003c/span>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Vaping products hit the market about 10 to 15 years ago. Researchers have followed smokers for decades to confirm flammable cigarettes are deadly because it can take at least ten years for long-term health effects like emphysema or cancer to develop. Few people have been vaping that long. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“There’s no question that vaping is much safer than smoking,\" says Michael Siegel, \u003c/span>\u003cspan style=\"font-weight: 400\">an epidemiologist at Boston University. \"\u003c/span>\u003cspan style=\"font-weight: 400\">But we're not at a level where we can say that there are no chronic health risks potentially associated with long-term vaping.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">So, here's what we know to date:\u003c/span>\u003c/p>\n\u003cp>\u003cb>Cardiovascular Disease\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">E-cigarettes expose users to ultrafine particles and other toxins that may \u003c/span>\u003ca href=\"https://jamanetwork.com/journals/jamacardiology/article-abstract/2600160\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">increase cardiovascular disease risks\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">. The tiny particles are much finer than a human hair and can penetrate deep into the lungs, which can \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/19720932\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">trigger an inflammatory response\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">. \u003c/span>\u003cspan style=\"font-weight: 400\"> A \u003c/span>\u003ca href=\"https://www.ajpmonline.org/article/S0749-3797(18)31871-3/fulltext\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">study\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> published in the \u003c/span>\u003ci>\u003cspan style=\"font-weight: 400\">American Journal of Preventive Medicine\u003c/span>\u003c/i>\u003cspan style=\"font-weight: 400\"> last summer concluded that both smoking and vaping daily are associated with a higher risk of heart attack and that using both products compounds those risks.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Nicotine may also aggravate cardiovascular disease, but how it does is still debated.\u003c/span>\u003c/p>\n\u003cp>\u003cb>Lungs\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There is \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/28522559\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">evidence\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> showing that exposure to e-cigarettes negatively impacts lung function. Repeated exposure to acrolein, which is produced by heating the base products in e-cigs (propylene glycol and glycerin), can \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/22758635\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">cause chronic pulmonary inflammation\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">.\u003c/span>\u003c/p>\n\u003cp>\u003ca href=\"https://profiles.ucsf.edu/jeffrey.gotts\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">Jeffrey Gotts\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">, a pulmonologist at UCSF, summarized the lung disease risks succinctly in an email. “Is e-cigarette aerosol less toxic than cigarette smoke? Probably. Is e-cigarette aerosol as safe as water vapor, as many of the companies would have you believe? Definitely not.” \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Gotts says \u003c/span>\u003cspan style=\"font-weight: 400\">s\u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29481290\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">tudies\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> of human airway epithelial cells show that e-cigarettes damage cells and increase oxidative stress, and studies of immune cells suggest e-cigarettes reduce immunity to bacterial and viral infections. Finally, he says there is fairly good data showing that e-cig users suffer from productive coughs, missed school days and more inflammatory mucous. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There is very little known about how e-cigarettes affect pregnant women or their offspring, but \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/26756937\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">animal studies\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> are beginning to raise alarms. \u003c/span>\u003c/p>\n\u003cp>\u003cb>\u003c/b>\"The fundamental truth here is that the human lung was evolved to process air to deliver oxygen through the blood to the muscles and to the brain,\" says Thomas Eissenberg, a \u003cb>\u003c/b>psychologist and director of the Center for the Study of tobacco products at Virginia Commonwealth University. \"And when you assault the human lung with something other than air like propylene glycol [a component in vape juice] it's hard to believe that it isn't going to cause some kind of damage over a prolonged period of time.\"\u003c/p>\n\u003cp>\u003cb>Toxins\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Vaping \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/23467656\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">exposes users to far fewer carcinogens\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> like benzene and arsenic than smoking a cigarette, though e-cigarettes are \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29548792\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">not toxin-free\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Previous \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995255/\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">studies\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> suggest toxin exposure varies by the brand and the type of product. For example, e-cigarette devices with higher voltages \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/24832759\" target=\"_blank\" rel=\"noopener\">are riskier\u003c/a>, because higher voltages tend to produce more toxins.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There is also growing evidence that is harmful breathing in artificial flavors. The Food and Drug Administration has recognized flavor agents as generally safe for consumption but not for inhalation.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\"> A 2018 \u003c/span>\u003ca href=\"http://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.2003904\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">study\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> from the University of North Carolina exposed human cells in test tubes to about 150 of the more than 7,700 commercially available flavored nicotine liquids. \u003c/span>\u003cspan style=\"font-weight: 400\">“We found that some of them were very highly toxic to the cells,\" says \u003c/span>\u003ca href=\"https://www.med.unc.edu/cellbiophysio/faculty-old/tarran/images/flori-sassano/view\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">Flori Sassano\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">, a UNC pharmacologist. “Not only stopping the growth but also killing them.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Sassano also found that the base ingredients used in e-liquids, propylene glycol and vegetable glycerin, damaged the cells.\u003c/span>\u003c/p>\n\u003cp>\u003cb>Cancer\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The risk of lung cancer is likely significantly lower for vaping than smoking. There is no current evidence demonstrating vaping causes lung cancer, but it can take more than a decade to develop the disease, and little is known about the extent or quantity of the carcinogens in e-cigs. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Early studies published this year suggest e-cigarette aerosols may damage the DNA in cells, indicating potential cancers like lung and oral cancer. One \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29378943\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">study \u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">published in the journal \u003c/span>\u003ci>\u003cspan style=\"font-weight: 400\">PNAS \u003c/span>\u003c/i>\u003cspan style=\"font-weight: 400\">showed damage in mice. Another, \u003c/span>\u003ca href=\"https://www.nature.com/articles/s41598-018-25907-6\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">published in\u003c/span>\u003c/a> \u003ci>\u003cspan style=\"font-weight: 400\">Scientific Reports\u003c/span>\u003c/i>\u003cspan style=\"font-weight: 400\">, found that e-cigarettes contain more formaldehyde, a potential carcinogen, than previously estimated.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">In summary, more long-term studies are needed to conclude the true cancer risks of vaping. \u003c/span>\u003c/p>\n\u003cp>\u003cb>Nicotine\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Nicotine is the addictive stimulant in both cigarettes and e-cigarettes. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The health risks of nicotine are debated. Biologists are likely to say the chemical is nasty, but public health officials who focus on smoking cessation programs are more cautious to classify nicotine negatively. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“If you’re trying to quit smoking, nicotine replacement therapy options like gum and patches that are administered with counseling and psychological support work pretty well,” says Stanton Glantz, \u003c/span>\u003cspan style=\"font-weight: 400\">who heads the \u003c/span>\u003ca href=\"https://tobacco.ucsf.edu/\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">Center for Tobacco Control Research and Education\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> at UCSF.\u003c/span>\u003cspan style=\"font-weight: 400\"> “There are risks associated with using them, but they’re much better than smoking. All drugs have side effects.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">In very large doses, we know nicotine can be poisonous to organisms because it was once used as a pesticide before modern synthetic insecticides were developed. Glantz says nicotine can wreak havoc on the body because it’s associated with heart and blood vessel damage, reproductive toxicity and increased inflammation.\u003c/span>\u003c/p>\n\u003cp>\u003cem>Kat Snow and The Associated Press contributed to this report.\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"Preliminary research suggests e-cigarettes may harm the lungs and heart, but vaping hasn't been around long enough to know a lot about its health impacts.","status":"publish","parent":0,"modified":1547234276,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":33,"wordCount":1094},"headData":{"title":"E-Cigarette Health Risks: What We Know, What We Don't | KQED","description":"Preliminary research suggests e-cigarettes may harm the lungs and heart, but vaping hasn't been around long enough to know a lot about its health impacts.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"E-Cigarette Health Risks: What We Know, What We Don't","datePublished":"2018-11-15T19:33:37.000Z","dateModified":"2019-01-11T19:17:56.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"445426 https://ww2.kqed.org/futureofyou/?p=445426","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/11/15/what-we-know-and-what-we-dont-about-e-cigarette-health-risks/","disqusTitle":"E-Cigarette Health Risks: What We Know, What We Don't","audioUrl":"https://www.kqed.org/.stream/anon/radio/science/2018/11/McClurgECigInfo.mp3","audioTrackLength":252,"path":"/futureofyou/445426/what-we-know-and-what-we-dont-about-e-cigarette-health-risks","parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>There are two ways e-cigarettes can affect your health. One is direct, from the product itself. The other stems from the fact that teenagers who vape are more likely to become addicted to nicotine and to try regular cigarettes.\u003c/p>\n\u003cp>Food and Drug Administration Commissioner Scott Gottlieb had this in mind last November when he called for tightening rules governing the sale of most flavored versions of electronic cigarettes \"I will not allow a generation of children to become addicted to nicotine through e-cigarettes,\" Gottlieb said in a statement.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">As for direct harm, while there are reams of studies on the negative effects of cigarette smoke, far fewer exist on electronic cigarettes. \u003c/span>Preliminary\u003cspan style=\"font-weight: 400\"> research does suggest e-cigarettes may harm the lungs and heart. It should be noted, however, that \u003cem>h\u003c/em>\u003c/span>\u003cspan style=\"font-weight: 400\">\u003cem>uman\u003c/em> clinical studies testing vaping products are extremely limited; most of what we know comes from research on cell cultures and animals. Plus it is difficult to study the effects of e-cigarettes when there is such a wide variety of rapidly changing delivery devices.\u003c/span>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Vaping products hit the market about 10 to 15 years ago. Researchers have followed smokers for decades to confirm flammable cigarettes are deadly because it can take at least ten years for long-term health effects like emphysema or cancer to develop. Few people have been vaping that long. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“There’s no question that vaping is much safer than smoking,\" says Michael Siegel, \u003c/span>\u003cspan style=\"font-weight: 400\">an epidemiologist at Boston University. \"\u003c/span>\u003cspan style=\"font-weight: 400\">But we're not at a level where we can say that there are no chronic health risks potentially associated with long-term vaping.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">So, here's what we know to date:\u003c/span>\u003c/p>\n\u003cp>\u003cb>Cardiovascular Disease\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">E-cigarettes expose users to ultrafine particles and other toxins that may \u003c/span>\u003ca href=\"https://jamanetwork.com/journals/jamacardiology/article-abstract/2600160\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">increase cardiovascular disease risks\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">. The tiny particles are much finer than a human hair and can penetrate deep into the lungs, which can \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/19720932\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">trigger an inflammatory response\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">. \u003c/span>\u003cspan style=\"font-weight: 400\"> A \u003c/span>\u003ca href=\"https://www.ajpmonline.org/article/S0749-3797(18)31871-3/fulltext\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">study\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> published in the \u003c/span>\u003ci>\u003cspan style=\"font-weight: 400\">American Journal of Preventive Medicine\u003c/span>\u003c/i>\u003cspan style=\"font-weight: 400\"> last summer concluded that both smoking and vaping daily are associated with a higher risk of heart attack and that using both products compounds those risks.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Nicotine may also aggravate cardiovascular disease, but how it does is still debated.\u003c/span>\u003c/p>\n\u003cp>\u003cb>Lungs\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There is \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/28522559\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">evidence\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> showing that exposure to e-cigarettes negatively impacts lung function. Repeated exposure to acrolein, which is produced by heating the base products in e-cigs (propylene glycol and glycerin), can \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/22758635\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">cause chronic pulmonary inflammation\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">.\u003c/span>\u003c/p>\n\u003cp>\u003ca href=\"https://profiles.ucsf.edu/jeffrey.gotts\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">Jeffrey Gotts\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">, a pulmonologist at UCSF, summarized the lung disease risks succinctly in an email. “Is e-cigarette aerosol less toxic than cigarette smoke? Probably. Is e-cigarette aerosol as safe as water vapor, as many of the companies would have you believe? Definitely not.” \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Gotts says \u003c/span>\u003cspan style=\"font-weight: 400\">s\u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29481290\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">tudies\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> of human airway epithelial cells show that e-cigarettes damage cells and increase oxidative stress, and studies of immune cells suggest e-cigarettes reduce immunity to bacterial and viral infections. Finally, he says there is fairly good data showing that e-cig users suffer from productive coughs, missed school days and more inflammatory mucous. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There is very little known about how e-cigarettes affect pregnant women or their offspring, but \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/26756937\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">animal studies\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> are beginning to raise alarms. \u003c/span>\u003c/p>\n\u003cp>\u003cb>\u003c/b>\"The fundamental truth here is that the human lung was evolved to process air to deliver oxygen through the blood to the muscles and to the brain,\" says Thomas Eissenberg, a \u003cb>\u003c/b>psychologist and director of the Center for the Study of tobacco products at Virginia Commonwealth University. \"And when you assault the human lung with something other than air like propylene glycol [a component in vape juice] it's hard to believe that it isn't going to cause some kind of damage over a prolonged period of time.\"\u003c/p>\n\u003cp>\u003cb>Toxins\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Vaping \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/23467656\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">exposes users to far fewer carcinogens\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> like benzene and arsenic than smoking a cigarette, though e-cigarettes are \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29548792\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">not toxin-free\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Previous \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995255/\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">studies\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> suggest toxin exposure varies by the brand and the type of product. For example, e-cigarette devices with higher voltages \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/24832759\" target=\"_blank\" rel=\"noopener\">are riskier\u003c/a>, because higher voltages tend to produce more toxins.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">There is also growing evidence that is harmful breathing in artificial flavors. The Food and Drug Administration has recognized flavor agents as generally safe for consumption but not for inhalation.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\"> A 2018 \u003c/span>\u003ca href=\"http://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.2003904\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">study\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> from the University of North Carolina exposed human cells in test tubes to about 150 of the more than 7,700 commercially available flavored nicotine liquids. \u003c/span>\u003cspan style=\"font-weight: 400\">“We found that some of them were very highly toxic to the cells,\" says \u003c/span>\u003ca href=\"https://www.med.unc.edu/cellbiophysio/faculty-old/tarran/images/flori-sassano/view\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">Flori Sassano\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">, a UNC pharmacologist. “Not only stopping the growth but also killing them.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Sassano also found that the base ingredients used in e-liquids, propylene glycol and vegetable glycerin, damaged the cells.\u003c/span>\u003c/p>\n\u003cp>\u003cb>Cancer\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The risk of lung cancer is likely significantly lower for vaping than smoking. There is no current evidence demonstrating vaping causes lung cancer, but it can take more than a decade to develop the disease, and little is known about the extent or quantity of the carcinogens in e-cigs. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Early studies published this year suggest e-cigarette aerosols may damage the DNA in cells, indicating potential cancers like lung and oral cancer. One \u003c/span>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29378943\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">study \u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\">published in the journal \u003c/span>\u003ci>\u003cspan style=\"font-weight: 400\">PNAS \u003c/span>\u003c/i>\u003cspan style=\"font-weight: 400\">showed damage in mice. Another, \u003c/span>\u003ca href=\"https://www.nature.com/articles/s41598-018-25907-6\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">published in\u003c/span>\u003c/a> \u003ci>\u003cspan style=\"font-weight: 400\">Scientific Reports\u003c/span>\u003c/i>\u003cspan style=\"font-weight: 400\">, found that e-cigarettes contain more formaldehyde, a potential carcinogen, than previously estimated.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">In summary, more long-term studies are needed to conclude the true cancer risks of vaping. \u003c/span>\u003c/p>\n\u003cp>\u003cb>Nicotine\u003c/b>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Nicotine is the addictive stimulant in both cigarettes and e-cigarettes. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">The health risks of nicotine are debated. Biologists are likely to say the chemical is nasty, but public health officials who focus on smoking cessation programs are more cautious to classify nicotine negatively. \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">“If you’re trying to quit smoking, nicotine replacement therapy options like gum and patches that are administered with counseling and psychological support work pretty well,” says Stanton Glantz, \u003c/span>\u003cspan style=\"font-weight: 400\">who heads the \u003c/span>\u003ca href=\"https://tobacco.ucsf.edu/\" target=\"_blank\" rel=\"noopener\">\u003cspan style=\"font-weight: 400\">Center for Tobacco Control Research and Education\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> at UCSF.\u003c/span>\u003cspan style=\"font-weight: 400\"> “There are risks associated with using them, but they’re much better than smoking. All drugs have side effects.”\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">In very large doses, we know nicotine can be poisonous to organisms because it was once used as a pesticide before modern synthetic insecticides were developed. Glantz says nicotine can wreak havoc on the body because it’s associated with heart and blood vessel damage, reproductive toxicity and increased inflammation.\u003c/span>\u003c/p>\n\u003cp>\u003cem>Kat Snow and The Associated Press contributed to this report.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/445426/what-we-know-and-what-we-dont-about-e-cigarette-health-risks","authors":["11229"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_1479","futureofyou_80"],"featImg":"futureofyou_442393","label":"futureofyou"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. Michel Martin hosts on the weekends.","airtime":"MON-FRI 1pm-2pm, 4:30pm-6:30pm\u003cbr />SAT-SUN 5pm-6pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/All-Things-Considered-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/all-things-considered/","meta":{"site":"news","source":"npr"},"link":"/radio/program/all-things-considered"},"american-suburb-podcast":{"id":"american-suburb-podcast","title":"American Suburb: The Podcast","tagline":"The flip side of gentrification, told through one town","info":"Gentrification is changing cities across America, forcing people from neighborhoods they have long called home. Call them the displaced. Now those priced out of the Bay Area are looking for a better life in an unlikely place. American Suburb follows this migration to one California town along the Delta, 45 miles from San Francisco. But is this once sleepy suburb ready for them?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/American-Suburb-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/news/series/american-suburb-podcast","meta":{"site":"news","source":"kqed","order":"13"},"link":"/news/series/american-suburb-podcast/","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=1287748328","tuneIn":"https://tunein.com/radio/American-Suburb-p1086805/","rss":"https://ww2.kqed.org/news/series/american-suburb-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkMzMDExODgxNjA5"}},"baycurious":{"id":"baycurious","title":"Bay Curious","tagline":"Exploring the Bay Area, one question at a time","info":"KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"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 />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"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","officialWebsiteLink":"https://www.commonwealthclub.org/podcasts","meta":{"site":"news","source":"Commonwealth Club of California"},"link":"/radio/program/commonwealth-club","subscribe":{"apple":"https://itunes.apple.com/us/podcast/commonwealth-club-of-california-podcast/id976334034?mt=2","google":"https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw","tuneIn":"https://tunein.com/radio/Commonwealth-Club-of-California-p1060/"}},"considerthis":{"id":"considerthis","title":"Consider This","tagline":"Make sense of the day","info":"Make sense of the day. Every weekday afternoon, Consider This helps you consider the major stories of the day in less than 15 minutes, featuring the reporting and storytelling resources of NPR. Plus, KQED’s Bianca Taylor brings you the local KQED news you need to know.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Consider-This-Podcast-Tile-703x703-1.jpg","imageAlt":"Consider This from NPR and KQED","officialWebsiteLink":"/podcasts/considerthis","meta":{"site":"news","source":"kqed","order":"7"},"link":"/podcasts/considerthis","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1503226625?mt=2&at=11l79Y&ct=nprdirectory","npr":"https://rpb3r.app.goo.gl/coronavirusdaily","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM1NS9wb2RjYXN0LnhtbA","spotify":"https://open.spotify.com/show/3Z6JdCS2d0eFEpXHKI6WqH"}},"forum":{"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","officialWebsiteLink":"/forum","meta":{"site":"news","source":"kqed","order":"8"},"link":"/forum","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/kqeds-forum/id73329719","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM5NTU3MzgxNjMz","npr":"https://www.npr.org/podcasts/432307980/forum","stitcher":"https://www.stitcher.com/podcast/kqedfm-kqeds-forum-podcast","rss":"https://feeds.megaphone.fm/KQINC9557381633"}},"freakonomics-radio":{"id":"freakonomics-radio","title":"Freakonomics Radio","info":"Freakonomics Radio is a one-hour award-winning podcast and public-radio project hosted by Stephen Dubner, with co-author Steve Levitt as a regular guest. It is produced in partnership with WNYC.","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","subscribe":{"npr":"https://rpb3r.app.goo.gl/4s8b","apple":"https://itunes.apple.com/us/podcast/freakonomics-radio/id354668519","tuneIn":"https://tunein.com/podcasts/WNYC-Podcasts/Freakonomics-Radio-p272293/","rss":"https://feeds.feedburner.com/freakonomicsradio"}},"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.","airtime":"MON-FRI 7pm-8pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Fresh-Air-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/fresh-air/","meta":{"site":"radio","source":"npr"},"link":"/radio/program/fresh-air","subscribe":{"npr":"https://rpb3r.app.goo.gl/4s8b","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=214089682&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/Fresh-Air-p17/","rss":"https://feeds.npr.org/381444908/podcast.xml"}},"here-and-now":{"id":"here-and-now","title":"Here & Now","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.","airtime":"MON-THU 11am-12pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Here-And-Now-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"http://www.wbur.org/hereandnow","meta":{"site":"news","source":"npr"},"link":"/radio/program/here-and-now","subsdcribe":{"apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=426698661","tuneIn":"https://tunein.com/radio/Here--Now-p211/","rss":"https://feeds.npr.org/510051/podcast.xml"}},"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. 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