ASAN Releases Policy Brief on Organ Transplant Discrimination; Meets with Senior HHS Leaders

10 Apr

The Autistic Self Advocacy Network (ASAN) issed a policy brief last month on the subject of organ transplant discrimination. Over the past year a few cases of denial of organ transplants on the basis of disability made the news. Many more did not.

ASAN met with people in the Department of Health and Human Services (HHS) to present their brief and urge an end to discrimination in organ transplants based on disability.

The brief is:

Organ Transplantation and People with I/DD: A Review of Research, Policy and Next StepsAri Ne’eman, Autistic Self Advocacy Network
Steven Kapp, University of California, Los Angeles
Caroline Narby, Autistic Self Advocacy Network

Here is the ASAN statement:

This week, the Autistic Self Advocacy Network (ASAN) released a new policy brief on discrimination against people with intellectual and developmental disabilities in organ transplantation. In the twenty-three years since the passage of the Americans with Disabilities Act, people with disabilities have achieved much progress in securing our rights in a wide variety of settings. Unfortunately, the field of medical decision-making remains too often immune from civil rights law. In few places is this as evident as in the context of organ transplants, where our policy brief outlines widespread discriminatory practice. Many people with I/DD fail to even make it to the evaluation process, and those who do are frequently denied access to transplants on the basis of their disability. Eighteen years after the landmark Sandra Jensen case in California, it is long past time for action on this issue.

On Tuesday, ASAN, the National Disability Rights Network and Not Dead Yet met with senior leadership in the Department of Health and Human Services to urge the federal government to issue new guidance addressing discriminatory practices in organ transplantation. Our brief provides comprehensive documentation on this issue and offers next steps for regulators, legislators, funders and activists. Produced with the generous support of the Special Hope Foundation, this will be the first of several policy briefs produced by ASAN this year examining the issue of access to health care for people with intellectual and developmental disabilities.

We invite you to download a copy of Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps on our website by clicking here. Help us spread the word about discrimination in organ transplants – together, we can achieve equal access for all of us.

Produced with support from the Special Hope Foundation

By Matt Carey

2 Responses to “ASAN Releases Policy Brief on Organ Transplant Discrimination; Meets with Senior HHS Leaders”

  1. Salam December 23, 2015 at 03:35 #

    To Jon:Unfortunately I have also seen logos that are a whole jigsaw with a piece msinisg. I find nonautistics puzzling but I wouldn’t want label or stereotype them / give them a symbol they found offensive. Understanding between different groups isn’t all one sided but that seems to all too often be the implication, with the minority group being the one that’s disadvantaged.

  2. Roger Kulp December 27, 2015 at 17:51 #

    This policy brief strikes me as very puzzling,and has ever since it came out.Given the chronic shortage of organs,I can see why doctors would ration organs.I know very little about how it is decided who gets organs for transplant,but it would seem to me,the underlying medical diagnosis would play a part.Sticking just to autism,this would get into a subject that seems to run counter to much of what ASAN and the neurodiversity movement as a whole,seem to stand for.That being looking at autism,and other types of ID/DD,as something that can often only be one part of a complex medical picture where a patient has multiple diagnoses.Autism and the medical conditions that can go with it are all about connecting the dots and looking at the bigger picture.

    Autism and other types of ID/DD do not in and of themselves lead to organ failure,but there are disorders associated with autism and other types of ID/DD that can.Many of which were not known to exist 20 or 30 years ago,or not known to be associated with autism.The ones we know about are inborn errors of metabolism.

    And congenital disorders of autoimmunity.

    Note the post here about vaccines,by the way.

    It came as sort of a revelation to me that how the mother’s immune system can pass on immune abnormalities to the baby in the womb,is considered an environmental,and not a genetic,factor for autism.

    As a lot of you are aware,I have one of each type of disorder,as well as unique mutations of a primary immune deficiency known to impact the brain.

    Getting these diagnoses has not been easy.It has taken six years of testing,and going to doctors and hospitals in four different states.Starting with one of the most antivaccine of DAN doctors,and working my way up the food chain to UCLA Medical Center,and possibly NIH.It is all due to my unique brand of self advocacy and sheer persistence.But had I not done this,I would still be thought to have “just” autism,and a lot of unexplained medical issues.Nor would I be able to function well enough to live on my own,after my mother’s death in 2012,I may well have been dead myself by now.But by searching for answers for my own condition,I have become very much a trail blazer as far as obtaining real health care for other autistic adults.Something I am very proud of.

    This gets back to the subject of organ transplants.While I agree it is both wrong and immoral to exclude people with ID/DD from transplant lists,this is obviously a worldwide problem.I don’t think need laws and legislation,we need to change the mindset of doctors everywhere.This mindset speaks to a very outdated model of what ID/DD is.A diagnosis of any kind of ID/DD is a big obstacle as far as obtaining any serious medical care,especially for adults.Not just organ transplants.We all know this,and we all need to work to change this.Doctors are not going to do this without more individuals with ID/DD,or their families,working within the healthcare system,to push doctors for better medical care,and possibly preventing the need for organ transplants in the first place.I see a person with ID/DD who has gotten to the point where they need an organ transplant as a failure of the healthcare system more than a lack of laws.

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