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Tuesday, January 17, 2012

Organ Transplants and Disability Discrimination

Disability related blogs are abuzz about a blog entry, Brick Walls, written by Chrissy Rivera. In short, the Children's Hospital of Philadelphia refused to provide an organ transplant for a two year old girl. The child in question has Wolf-Hirschorn Syndrome and needs a kidney transplant within six months to a year. Without a transplant she will die. Wolf-Hirschorn syndrome is a rare genetic condition and involves delayed growth, seizures, and cognitive deficits. According to Rivera, the sole reason her daughter was denied a kidney transplant was because she was "retarded". She was not eligible for any kidney--even a kidney donated by a family member. This story has blazed a trail across the internet, particularly within the "children with special needs" needs community. The mainstream press has picked up the story--reports have been on local television news programs in Philadelphia and USA Today ran a story. The hospital is under a siege of complaints. The hospital Facebook page has been flooded with howls of protests. An online petition has been signed by over 16,000 people and the hospital is in full damage control.

None of the above surprises me. I am not at all surprised the hospital denied a child with a cognitive disability a transplant. I would not be surprised if the hospital denied a person with a physical disability, any physical disability, a transplant. I would not be surprised if I was denied a kidney transplant. The fact is I cannot receive a kidney transplant. After urological surgery in 2010 a rider was put on my health insurance policy that established a kidney transplant would not be covered. People without insurance do not get organ transplants. The facts with regard to organ transplantation and disability based discrimination are simple: organs are rationed, it is unavoidable and we are not worthy. People die waiting for a life saving organ. Hospitals do the best they can to be fair. However it is impossible to ignore value judgments when allocating organs. Should a murderer be eligible? What about a person with a long history of addiction? How old is too old to be eligible? Is a certain level of cognitive ability required? The organization in charge of making these sorts decisions is the United Network for Organ Sharing (UNOS). Debate is becoming more heated with regard to exactly who is eligible for an organ as well as the circumstances under which organs are harvested (see Not Dead Yet post of January 3, 2012). Thus Rivera's heart wrenching story is merely the tip of an iceberg--that proverbial iceberg is couched in some misleading jargon and difficult to disentangle verbiage. For example, below is a statement released by the hospital:

"We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments."

The above is a wonderful statement. The only problem is it is patently false or at the very least grossly misleading. The hospital statement goes on to maintains that “all determinations of eligibility for transplantation are treated on an individual basis” using a “non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.” Again, a wonderful statement. This may be true but it is grossly misleading. One cannot leave bias and prejudice at the entrance door to hospitals nationwide. What ran through my mind when I read the hospital press release was a story I read about in the mid 1990s. Up until 1995 organ transplantation in individuals with mental retardation (MR) was regarded as a contraindication. Here i am parroting medical journal jargon. In layman's terms doctors believed post transplant care was too complex for a person with a cognitive disability to comprehend and their quality of life was less than a person with "normal" cognition. Blatant bias against people with a cognitive disability came to the forefront when Sandra Jensen, a 32 year-old woman with Down Syndrome was initially denied a heart-lung transplant in 1995.Jensen's application for a transplant was denied specifically because of her MR. Negative publicity flowed forth and advocates for people with cognitive disabilities convinced the hospital to reconsider its position. Jensen received a transplant (she died 18 months later from anti-rejection drug complications). I am afraid Children's Hospital of Philadelphia will do the same thing Stanford Medical Center did with the Jensen case--make it go away and bury it. My only hope is that Rivera's emotional post and searing outrage will not be easily forgotten. I know I will not forget the following:

"So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

No jargon here. This is the unfiltered truth. People like Rivera's daughter have limited access to organ transplants. It is obvious though unspoken that their access is far from equal. Not much has changed since the mid 1990s in my estimation. In 2003 William Bronston, a physician who advocated for Jensen formed a group of scholars and advocates called the National Work Group on Disability and Transplantation. This group conducted a survey among families that cared for a person with a cognitive disability. 80% believed that they were discriminated against regarding access to organ transplants. Powerful and deadly social forces are at work here. A few days ago my friend Stephen Kuusisto described these larger social forces. At Planet of the Blind he wrote:"What is not in doubt is the predatory and heartless social reformation well underway in the United States--a reframing of social Darwinism without apology." Rivera's story is in Kuusisto's estimation "so Dickensian I want to scream". I hope Kuusisto has a great set of lungs for I doubt his screams of protest will be heard.


Phil Dzialo said...

I have never seen such a united protest and explosion of information from the disability community. It is my hope that things will change more rapidly and people who make decisions about issues like "quality of life" and "life worth living" will think twice about their actions. Failure to appreciate the sanctity of life and equality of all people will spread like a wildfire and it won't be possible hide discrimination. There are many advocates out united by a phenomenon which didn't exist...the Internet, blogging, facebook and other social media. There is no hiding NOW as stupidity quickly becomes viral. New hope springs across the "net" as it has become a unifying and powerful force unavailable several decades ago.

Becs said...

Of course addicts who have wrecked their organs get transplants. David Crosby's liver transplant comes instantly to mind.

Elizabeth said...

Thank you for adding your voice to this. And thank you for commenting on my own blog today. I am honored to have your voice over there --

william Peace said...

Elizabeth, I read your blog on a regular basis but have not commented. I was glad to see you battling with some pithy comments r.e. the transplantation. I did not have the stomach for it. The "non person" reference by one person sent me over the edge. Let's hope all the publicity will help more than one family.