Wednesday, June 25, 2014

Does disability make you a less worthy transplant recipient?

Two little girls with genetic conditions that include intellectual disability needed a life-saving organ transplant.

One, in Philadelphia, needed a kidney. The other, in Chicago, needed a heart.

The first, three-year-old Amelia Rivera with Wolf-Hirschhorn Syndrome, was turned down for a kidney transplant in 2012 because of her ‘mental retardation,’ according to her parents. “She is not eligible because of her quality of life—because of her mental delays” the parents said a nephrology doctor told them.

Special-needs parents lit up the blogosphere in protest and over 50,000 people signed a petition at asking the Children’s Hospital of Philadelphia (CHOP) to reconsider its decision. All the major media networks ran news stories on the case and CHOP reversed its decision. Last year Amelia received a kidney transplant from her mother and is thriving.

The second girl, a baby dubbed “Annie Golden Heart” on a Facebook page
run by her parents, had Down syndrome. She was in heart failure, but was ineligible for a new heart because of her disability. Last week, she died at age two. Despite her Facebook page, Annie's story didn't garner the media clout to influence hospital policy like Amelia's had. I wonder how her parents explained her death to her two older sisters?

This petition questions why children with Down syndrome are not considered candidates for organ transplants. It has almost 40,000 signatures, but it hasn’t caught the imagination of the media.

Last year CNN reported
on a five-month-old baby with a heart defect who was okayed for a heart transplant, only to have this decision reversed two days later when it was discovered that the child had a genetic condition. The doctors said his genetic condition compromised his immune system, making him a poor candidate for transplant, and told the parents to take him home and love him till he died. His mother went online and researched the syndrome, reading studies and contacting the expert her son's syndrome is named after. The study authors and the expert said that the condition is not associated with immune problems and is not a reason to deny the child a transplant.

The syndrome is, however, associated with intellectual disability and there’s a long history of categorically excluding people with intellectual disability from eligibility for transplants; they’re not seen as worthy of these scarce resources.

The Autistic Self Advocacy Network has published an excellent toolkit
on transplant discrimination based on disability.

In its Guide for Clinicians 
the authors note that “the most common barrier is the misconception that people with disabilities—especially those with intellectual, developmental, or psychiatric disabilities—are unable to comply with post-operative treatment regimens and that, as a result, people with disabilities have a lower likelihood of transplant success. In addi­tion, providers may incorrectly assume that people with disabilities have a lower quality of life than people with­out disabilities and therefore would not benefit as much from life-saving transplants…”.

The guide includes recent studies that show that with adequate post-surgery care, people with intellectual disabilities have survival rates for kidney and heart transplants that are comparable with those in the general population.

The guide includes case studies, like the one of a 9-year-old boy with autism who needed a heart transplant. Two transplant centres refused to even evaluate the boy, who types to communicate, based on his disability.

In its toolkit on transplant discrimination, the Autistic Self Advocacy Network says that “as early as 1992, the U.S. Department of Health and Human Services took the position that deeming people with disabilities to have a lower ‘quality of life,’ and refusing health care on that basis, would violate the Americans with Disabilities Act.”

It goes on to say that “Clinicians’ estimates may, as a result of their own ‘horror of handicap,’ dramatically undervalue the actual quality of life of disabled patients. In reality, people with significant developmental and intellectual disability—including those who need assistance with basic tasks, those with co-occurring physical disabilities, and those who do not communicate using language—may lead long, rich, and fulfilling lives in their communi­ties. Moreover, patients with disabilities who received or­gan transplants may experience marked improvements in quality of life.”

Ironically, two days before “Annie Golden Heart” died last week, a state lawmaker from Philadelphia introduced legislation 
to end discrimination against people with disabilities in need of organ transplants. The bill, spurred by the fight of Karen Corby, whose 24-year-old son Paul, with autism, needs a heart transplant but isn’t eligible, is called Paul’s Law. “...To find out that he is not a candidate for a heart transplant—which is the only cure—because he's autistic, is the most terrifying thing a parent can go through," Karen Corby said.

Last year, Dr. Art Caplan, a bioethicist writing for MSNBC online summed up the situation beautifully:
“Children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected…There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.”


All I know is that I want DOCTORS and ONLY doctors (ideally transplant specialists) to be responsible for establishing the criteria that determines eligibility for a transplant AND setting out an official "process" for 1) revising the criteria & 2) revising the priority order of people on the eligible for transplants list.

This official 'eligible for transplants' criteria must be ironclad and should NOT be able to be changed in any manner other than the official process or interfered with by anybody who isn't a doctor. Period.

My rationale is that there are currently significantly fewer organs available than people desperately in need of them. The 'calculus' that goes into deciding who matches to a given organ and who needs it 'most' needs to be set by actual transplant doctors.

Because this is SUCH an emotionally charged issue, the potential for outside 'meddling' needs to be reduced as much as possible -- and heartbreaking photos of "Annie Golden Heart" dying make that pretty much impossible. No good can come of having, say, a court injuction (non-doctors, let alone non-translplant specialist doctors) make these kinds of life and death decisions.

That being said, the discrimination against the disabled is WRONG... but the way to right that wrong is through the 'official amend the criteria for transplant eligibility process'. Not by media pressure.

(It would also be VERY helpful if more people who sign up to be organ donors and/or agree to let their kids be organ donors should the unthinkable happen. If more organs were available, presumably the criteria for being eligible for an organ could be broadened).

Absolutely, anyone with any disability or condition or anything that does not bring down the odds of surviving the transplant or the success of the transplant should be on equal grounds with anyone else for eligibility. I am shocked that this is used as criteria for transplant or any medical treatment.

There are certain statistical models that do exclude certain conditions from transplant or other medical treatments because the chances of improving ones health, condition is so low and the chances are high that harm will be done by treatment, and those make sense. But if IQ or other disabling factors are in place, what kind of queue would one have for treatments? Frightening prospect. I hope some very vigorous movements come out of this. I'm glad you are addressing this issue.

Cath Young - Everyone who receives a donated organ requires a lifetime of follow up care --and needs to be in a position to comply with it, e.g. take a cocktail of immunosuppressants to so their body doesn't reject the organ, give up activities that could damage the organ (like tackle football if you've had a kidney transplant), etc.

While IQ in and of itself should never EVER disqualify a person from receiving a transplanted organ, a person who is unable or unwilling to comply with the post-transplant care is probably not a good candidate for a new organ -- an alcoholic who hasn't managed to get sober, an individual with severe autism who simply cannot take meds daily/keep themselves safe, etc.

Thanks for everyone's comments. I encourage you to check out the transplant discrimination toolkit by the Autistic Self Advocacy Network (link in story). It is excellent and includes studies showing survival rates for people with intellectual disability post transplant that are comparable to the general population.

What is currently happening, where some transplant centres will decline to even evaluate a child with a condition like autism, is wrong and not scientific.

And quality of life is a subjective experience, meaning that it needs to be self-rated, not based on the judgment a doctor makes about what life would be like living with a disability. There are many studies that have found people with a variety of disabilities rate their happiness/life satisfaction highly.

I believe a key factor is the ability of the person who receives the donated organ to comply with the lifelong, post-transplant care regime.

An alcoholic not in recovery (ie likely to drink even after they receive the new organ) isn't a good candidate for a new liver.

The autistic spectrum is just that -- a BIIIIIIIG spectrum. Refusing to let a person with autism, any person with autism, receive a transplanted organ is out-and-out discrimination -- and totally wrong!

Deeming a specific person with autism who is severely self-injurious and unable/unwilling to take meds as required, not injure themselves after getting stitches, etc. ineligible for an organ transplant is reasonable.

I would be on a plane to China so FAST!! Don't accept this, people! Poor Annie. I am devastated by not only her loss, but the injustice of it all.

There is a petition here AND put search terms : disability transplant into and several more petitions come up! Get active people, this cannot be!!

Liora, What would you do in China?
Buy a heart that was ripped out of some poor orphan child?