Was Amelia Rivera denied a Kidney Transplant because she was “mentally retarded”?

By Dave Andrusko

Amelia Rivera

The Children’s Hospital of Philadelphia is denying the assertion of the family of a three-year-old girl with a rare chromosomal disorder that she won’t get a kidney transplant because the girl is “considered mentally retarded.”

On its Facebook account the hospital wrote that while it could not get into specifics because of privacy concerns, it said, “The Children’s Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities.”

But that’s not what Amelia Rivera’s mom, Chrissy, says the hospital told her about the kidney transplant Amelia needs in the next six to twelve months in order to live, according to the CBS affiliate in Philadelphia.

Amelia has Wolf-Hirschhorn syndrome which affects about one in 50,000 children, and causes severe developmental delays.  Writing on a blog of a Wolf-Hirschorn support group, Rivera Rivera wrote her account of her meeting with a doctor and social worker.

According to Ryan Jaslow of CBS Philadelphia, Rivera said after she told the team they would bypass the waiting list—someone in the extended family would donate the kidney—“We were told many times throughout the meeting that she cannot have the transplant because she’s considered mentally retarded.”

Writing on the blog, Rivera quotes this exchange:

“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!”

“Yes, [said the doctor]. This is hard for me, you know.”

At that point an “outraged Chrissy went home and decided to write the blog, which has since gone viral,” Jaslow writes. “A petition on change.org that demands that the hospital reconsider its position has already gotten more than 21,000 signatures.”

The controversy has spurred reporters and columnists to inquire what is the official policy on transplants for people with disabilities. According to Jaslow, “Turns out, there isn’t one.”

Janice D’Arcy, writing in the Washington Post, concludes, “Intellectual disabilities are sometimes considered a reason to deny a child a transplant organ.”

Jaslow inquired of United Network for Organ Sharing. “UNOS  told CBS Philadelphia that it’s up to the individual hospitals and their doctors to determine if someone is an appropriate candidate for transplantation.”

D’Arcy cites David Magnus, a Stanford University biomedical ethicist who “says transplant centers are ‘all over the map’ in considering intellectual delays.” She  quotes from a report published in Pediatric Transplantation that Magnus wrote in 2009.

“Thirty-nine percent of programs stated that they ‘rarely’ or ‘never’ consider NDD [neurodevelopmental delays] in their decisions, whereas 43 percent of programs ‘always’ or ‘usually’ do. Sixty-two percent of programs report that informal processes guide their use of NDD, and no programs describe their process as ‘formal, explicit, and uniform.’ The degree of delay is an additional source of discordance among programs, with 14 percent of programs reporting mild or moderate NDD as a relative contraindication to listing and 2 percent reporting that NDD was ‘irrelevant’ to the listing decision.”

Then there is an MSNBC.com column written by Arthur Caplan, a bioethicist at the University of Pennsylvania. (The hospital is an affiliate of the University.)

After an overview of “the issue of disability and access to a life-saving transplant,” Caplan concludes

“Each transplant case involving a disabled person has to be looked at individually.  All that said, children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected.  And in 1990 Congress passed the Americans with Disabilities Act  which prohibits discriminating against patients solely on the basis of a disability.

“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’

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