Massachusetts lawmakers seek protections against discrimination in organ transplants

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BOSTON >> Declaring that life-saving medical care has been denied to people with disabilities, Massachusetts lawmakers are seeking to add new protections for people seeking organ transplants.

The bill has the backing of the Massachusetts Down Syndrome Congress, whose executive director said a 2008 Stanford University survey of 88 transplant centers found that 85 percent of pediatric transplant centers consider intellectual or developmental disability as a factor at least some of the time when determining eligibility for the procedure.

"They might have a misperception that the quality of a life for a person with a disability isn't what they would consider a good quality of life, so they might say, 'Well, maybe they aren't as much in need of a transplant as somebody else,' " Maureen Gallagher, the group's executive director, told the News Service. She said, "It's old, outdated, stereotypical attitudes."

Backed by more than 20 lawmakers, including lead sponsor Marshfield Democrat Rep. James Cantwell House Second Assistant Majority Leader Garrett Bradley, and Mental Health and Substance Abuse Committee Co-chair Sen. Jennifer Flanagan, the bill would prohibit health care providers from deeming someone ineligible to receive an organ transplant solely on the basis of a mental or physical disability.

The bill has languished in the Public Health Committee since January 2015. Facing a deadline to make a decision, the committee in March requested more time — until June 30, 2016 — to continue reviewing the bill. Formal legislative sessions for 2015-16 end on July 31. Cantwell said this is the first session the bill has been filed and he is "cautiously optimistic" it will be approved before the session ends.

If passed, the bill (H 3271) would declare in state law that "individuals with mental and physical disabilities have historically been denied life-saving organ transplants based on assumptions that their lives are less worthy, that they are incapable of complying with post-transplant medical regimens, or that they lack adequate support systems to ensure such compliance."

Gallagher said she did not know of any specific Massachusetts incident of discrimination against a person with disabilities for organ transplant.

Only 40 or 50 years ago, babies with Down syndrome were institutionalized at the recommendation of medical professionals, said Gallagher, who said life expectancy for people with Down syndrome has increased from about 25 years a few decades ago to 60 years or more today.

Christine Griffin, executive director of the Disability Law Center, said the bill has been pushed locally by people with autism and she said California and New Jersey have similar laws on the books.

"I think there was this bias that grew up in the medical community from long ago," Griffin said.

The Massachusetts Medical Society, which represents physicians, has not reviewed the bill, according to a spokesman, who said the society's policy is to "continue to strive for universal access to health care and nondiscrimination in health care settings for all people."

The Massachusetts Hospital Association supports the bill, according to Cantwell and the group's lobbying disclosure.

Gallagher said the assistance some people with disabilities might require post-transplant would not incur significant new costs as there are already support services in place.

The bill allows physicians to consider physical or mental disability only where it is "medically significant" to the operation.

Sandra Jensen, a woman with Down syndrome, became the first person with intellectual/developmental disabilities to receive a combined heart lung transplant, according to a 2013 paper by the Autistic Self Advocacy Network. The group said Jensen in 1995 was referred for a transplant but two transplant centers initially refused to perform the procedure for reasons stemming from her Down syndrome.

According to Cantwell, a few years ago the Children's Hospital of Philadelphia initially turned away three-year-old Amelia Rivera of New Jersey for a transplant of her mother's kidney because she had Wolf-Hirschhorn syndrome, which causes intellectual disability.


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