{"id":29482,"date":"2018-03-15T05:00:23","date_gmt":"2018-03-15T10:00:23","guid":{"rendered":"http:\/\/stateimpact.npr.org\/oklahoma\/?p=29482"},"modified":"2019-03-10T16:54:00","modified_gmt":"2019-03-10T21:54:00","slug":"people-with-developmental-disabilities-may-face-organ-transplant-bias","status":"publish","type":"post","link":"https:\/\/stateimpact.npr.org\/oklahoma\/2018\/03\/15\/people-with-developmental-disabilities-may-face-organ-transplant-bias\/","title":{"rendered":"People with developmental disabilities may face organ transplant bias"},"content":{"rendered":"<div id=\"attachment_29479\"  class=\"wp-caption module image alignnone\" style=\"max-width: 500px;\"><a class=\"fancybox\" title=\"Henry Weathers had a heart transplant 10 years ago, when he was five years old. His parents are worried he may not get another, due to bias.\" href=\"https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_9958_WEB.jpg\"><img decoding=\"async\" loading=\"lazy\" class=\"wp-image-29479 size-medium\" src=\"https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_9958_WEB-500x333.jpg\" alt=\"Henry Weathers had a heart transplant 10 years ago, when he was five years old. His parents are worried he may not get another, due to bias.\" width=\"500\" height=\"333\" srcset=\"https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_9958_WEB-500x333.jpg 500w, https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_9958_WEB-150x100.jpg 150w, https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_9958_WEB-300x200.jpg 300w, https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_9958_WEB-620x414.jpg 620w, https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_9958_WEB.jpg 1240w\" sizes=\"(max-width: 500px) 100vw, 500px\" \/><\/a><\/p>\n<p class=\"wp-media-credit\">Jackie Fortier \/ StateImpact Oklahoma<\/p>\n<p class=\"wp-caption-text\">Henry Weathers had a heart transplant 10 years ago when he was five years old. His parents are worried he may not get another, due to bias.<\/p>\n<\/div><p><iframe loading=\"lazy\" src=\"https:\/\/w.soundcloud.com\/player\/?url=https%3A\/\/api.soundcloud.com\/tracks\/413994741&color=%23ff5500&auto_play=false&hide_related=true&show_comments=false&show_user=true&show_reposts=false&show_teaser=false&visual=false\" width=\"100%\" height=\"150\" frameborder=\"no\" scrolling=\"no\"><\/iframe><\/p><p>Shiny red hearts decorate the tables at a restaurant in Moore. It looks like a Valentine&#8217;s Day party, but tonight the decor is literal: It\u2019s the 10-year anniversary of Henry Weather\u2019s new heart.<!--more--><\/p><p>\u201cYou have to realize that Henry\u2019s heart transplant was our seventh major surgery,\u201d said Henry\u2019s dad, Ned Weathers. \u201cWhen he was born the umbilical [cord] was cut, he turned purple and off to the races we went.\u201d<\/p><p>Henry was born without the lower left chamber of his heart and was just 3 days old when he had his first surgery. By the time Henry was 5 years old, he was listed for a heart transplant. His family got the call on Valentine\u2019s Day and flew to St. Louis for the procedure.<\/p><p>Henry\u2019s mom Erin Taylor says her son, now 15, is very healthy, despite undergoing more than 30 surgeries and being on two post-transplant immunosuppressant drugs that leave him vulnerable to infections.<\/p><p>\u201cIt\u2019s probably still a reality that I\u2019m going to bury my son, but when he was born a surgeon told me, \u2018You should feel really lucky if he makes it to 5 or 6 years old,\u2019\u201d Taylor said.<\/p><p>Organ transplants don\u2019t last forever. Eventually, the body rejects the organ or it becomes inefficient. As Henry gets older, his parents are starting to worry. The heart condition starved Henry\u2019s developing brain of oxygen. The resulting damage contributed to a developmental disability with which Henry now lives.<\/p><p>\u201cOne of two things will happen, he will die, or he will be re-transplanted, those are the realities of our life,\u201d Taylor said. \u201cPeople began to send me stories saying hey, do you know that sometimes they deny people because of an IQ score or because of how the doctor perceives their cognitive level?\u201d<\/p>\n<h3>How Organ Transplants Work<b><\/b><\/h3><p>More than 116,000 people across the U.S. are on the <a href=\"https:\/\/www.organdonor.gov\/statistics-stories\/statistics.html\">organ transplant list<\/a>, and 20 people die each day waiting for a transplant.<\/p><p>Surgical teams add people to the list by considering numerous factors thought to determine an organ\u2019s success or failure \u2014 things like a candidate\u2019s age, ability to pay medical bills, family support, whether or not they smoke. There is also a mental assessment, but the biggest factor is how long an organ candidate has left to live.<\/p><p>That life-and-death decision interested <a href=\"https:\/\/profiles.stanford.edu\/david-magnus?tab=publications\">David Magnus<\/a>, director of the Center for Biomedical Ethics at Stanford University Medical School. He surveyed 50 pediatric transplant programs in 2008 and found that 43 percent always or usually considered developmental delays like Henry\u2019s in deciding whether to list someone as eligible for an organ.<\/p><p>Magnus just finished another survey, where he found that \u201cadult programs are even more likely to hold developmental delay into account as a contraindication than pediatric programs.\u201d<\/p><p>Aside from a few restrictions under the Americans with Disabilities Act, a transplant team of doctors, nurses and psychologists have almost full autonomy to decide who gets life-saving organs. As a result, there\u2019s a wide variation from program to program.<\/p><p>\u201cOur data shows that it\u2019s pretty clear, that in general, there is a bias, and that some individuals that should be transplanted aren\u2019t being listed,\u201d Magnus said. \u201cIt shows that there is a justice problem because the same kids are going to get listed at some places and not others.\u201d<\/p><p>Mangus says the decision-making process needs to be more equitable. He recommends a <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/26517474\">screening tool<\/a> developed at Stanford that standardizes the evaluation process.<\/p><p>\u201cThe real solution is not to just say, \u2018You shouldn\u2019t discriminate,\u2019 because that doesn\u2019t help, I think what we need better objective tools for the psychosocial assessment process so that when people are making those determinations, they are making them as evidence-based as possible,\u201d he said.<\/p>\n<h3>Advocates Push Legislative Action<b><\/b><\/h3><p>States are increasingly adopting new policies to manage organ transplant eligibility.<\/p><p>Lawmakers in Ohio are <a href=\"https:\/\/www.legislature.ohio.gov\/legislation\/legislation-status?id=GA132-HB-332\">debating a bill <\/a>that would make transplant discrimination illegal. In February, Kansas became the sixth state to have passed similar bipartisan legislation. No such measure is under consideration in Oklahoma. But <a href=\"https:\/\/integrisok.com\/doctors\/david-nelson\">David Nelson<\/a>, chief of heart transplant medicine at INTEGRIS Baptist Medical Center in Oklahoma City, doesn\u2019t think more government regulation is the answer.<\/p>\n<div id=\"attachment_29483\"  class=\"wp-caption module image alignnone\" style=\"max-width: 620px;\"><a class=\"fancybox\" title=\"David Nelson, chief of heart transplant medicine at INTEGRIS Baptist Medical Center in Oklahoma City.\" href=\"https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_0024_WEB.jpg\" rel=\"\"><img decoding=\"async\" loading=\"lazy\" class=\"size-large wp-image-29483\" src=\"https:\/\/stateimpact.npr.org\/oklahoma\/files\/2018\/03\/IMG_0024_WEB-620x413.jpg\" alt=\"David Nelson, chief of heart transplant medicine at INTEGRIS Baptist Medical Center in Oklahoma City.\" width=\"620\" height=\"413\" \/><\/a><\/p>\n<p class=\"wp-media-credit\">Jackie Fortier \/ StateImpact Oklahoma<\/p>\n<p class=\"wp-caption-text\">David Nelson, chief of heart transplant medicine at INTEGRIS Baptist Medical Center in Oklahoma City.<\/p>\n<\/div><p>He says any patient\u2019s support and home life is taken into account, no matter their IQ.<\/p><p>\u201cWe [surgical teams] are strongly motivated to consider any risk factor as just a risk factor because you\u2019re expected to have volume and good outcomes,\u201d he said. \u201cThat alone is a reason why individuals that have neurodevelopmental delay, at least in the adult community, I don\u2019t think it\u2019s an issue.\u201d<\/p><p>Nelson says he has successfully transplanted two adults who were intellectually disabled in his career and says the team simply looked at their overall health and ability to take anti-rejection drugs.<\/p><p>Almost 60 percent of Oklahomans are <a href=\"https:\/\/www.lifeshareoklahoma.org\">registered organ donors<\/a>, which is higher than the national average, but <a href=\"http:\/\/autisticadvocacy.org\">disability advocates<\/a> are pushing for federal clarification of the Americans with Disabilities Act since so many people travel to different states to get transplants. A <a href=\"https:\/\/www.scribd.com\/document\/327914350\/2016-10-12-Members-Letter-HHS-OCR-Organ-Transplant-Discrimination\">letter<\/a> urging action was submitted to U.S. Department of Health and Human Services by 30 lawmakers in 2016. So far, nothing has changed.<\/p><p>\u201cWe deem them not worthy of an organ, and yet they can be organ donors,\u201d said Henry\u2019s mom Erin Taylor.<\/p><p>Henry\u2019s parents know that someday, he\u2019ll need a new heart. When that time comes, they want the surgical team to see Henry, not his IQ score.<\/p><p>\u201cIf you\u2019re basing your entire decision on a cognitive score, on whether or not he understands Algebra and some basic concepts, you can do better and we deserve to do better for people like this,\u201d Taylor said.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Shiny red hearts decorate the tables at a restaurant in Moore. It looks like a Valentine&#8217;s Day party, but tonight the decor is literal: It\u2019s the 10-year anniversary of Henry Weather\u2019s new heart.<\/p>\n","protected":false},"author":199,"featured_media":29479,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[23],"tags":[782],"acf":[],"_links":{"self":[{"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/posts\/29482"}],"collection":[{"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/users\/199"}],"replies":[{"embeddable":true,"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/comments?post=29482"}],"version-history":[{"count":14,"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/posts\/29482\/revisions"}],"predecessor-version":[{"id":31278,"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/posts\/29482\/revisions\/31278"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/media\/29479"}],"wp:attachment":[{"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/media?parent=29482"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/categories?post=29482"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/stateimpact.npr.org\/oklahoma\/wp-json\/wp\/v2\/tags?post=29482"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}