By Andy Metzger, State House News BOSTON – Mental or physical disabilities could not form the sole basis for denying a person an organ transplant under a bill sent to Gov. Charles D. Baker Jr.’s desk Wednesday, outlawing a practice that might not occur at all in Massachusetts.
Backed by the Massachusetts Down Syndrome Congress, the bill would empower the attorney general to take civil action and allow courts to impose civil penalties of up to $50,000 for the first violation or $100,000 for any subsequent violations.
The bill explicitly bars medical providers from using a mental or physical disability – as defined by the Americans with Disabilities Act – from serving as the sole basis to deem someone ineligible for receiving an organ transplant or denial of insurance coverage.
Jane Lane, a lobbyist for the Down syndrome group, said there are no known cases of disability-based discrimination occurring in Massachusetts but there have been issues around the country.
The United Network for Organ Sharing (UNOS), a Virginia-based non-profit, is under contract with the federal government to manage the nation’s organ transplant system, and a spokeswoman said it’s unlikely the bill would have bearing on the program.
UNOS spokeswoman Anne Paschke said the transplant centers that evaluate patients for potential donations take a holistic approach, considering the person’s support network, ability to care for themselves, overall health and even their ability to pay for necessary post-surgery treatment – rather than basing a decision on one factor.
“A few medical conditions might rule out a transplant,” UNOS writes on its webpage. It says, “In general, health issues that may keep you from having surgery or taking long-term medication may be reasons not to list you. Examples can include current or recent cancer diagnosis or morbid obesity.”
According to the organization, 120,000 people are waiting to receive a donation and on average 22 people die every day waiting for a transplant.
People with Down syndrome are living much longer than they did decades ago. According to the National Down Syndrome Society, the average lifespan for people with Down syndrome has increased to 60 today from 25 in 1983.
Rep. Tom Sannicandro, whose 32-year-old son has Down syndrome, said he “absolutely” believes prejudice against people with intellectual disabilities is “rampant in every segment of our society.”
Sannicandro said after his son was born the doctor ruled out hearing loss because he was only looking for a type of hearing loss associated with Down syndrome. About a year later after visiting another doctor, Sannicandro learned his son had a different form of hearing loss.
“I think that delay caused permanent damage to his ability to form speech,” Sannicandro told the News Service. Saying the bill’s aim is to “pre-empt any potential problems,” Sannicandro – who did not seek re-election – was pleased to learn it had been enacted. He said, “Wow. That’s awesome. I guess we’re doing good work.”
The bill was filed by Rep. James Cantwell, a Marshfield Democrat.
“People always say, ‘Does this really happen?'” Cantwell said, citing the widely reported news story that a hospital in Philadelphia had refused to allow Chrissy Rivera to give her own kidney to her daughter because of the young girl’s intellectual disability – known as Wolf-Hirschhorn syndrome. She eventually received the kidney from her mother at the same hospital.
Rhonda Mann, a spokeswoman for Tufts Medical Center, which transplants hearts and kidneys, said it is “standard practice” at the facility that patients may receive organs regardless of physical or mental disability.
When an earlier version of the bill (H 4332) was up for a hearing in May, the executive director of the Massachusetts Down Syndrome Congress said Stanford University in 2008 determined 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 a transplant.
“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,'” said Maureen Gallagher, the executive director. She said, “It’s old, outdated, stereotypical attitudes.”
The bill would also prohibit placing someone at a “lower-priority” position on an organ transplant waiting list solely because of a disability.
The UNOS spokeswoman said the priority rankings are based on organ-specific medical factors. She said heart and liver transplants are based on the urgency of the situation and the proximity between the donor and the patient.
The bill clarifies that it does not require “medically inappropriate organ transplants” and allows medical providers to take disability into account when making treatment recommendations.
A spokesman for the governor declined to say whether the bill would be signed into law, saying the administration “will carefully review all legislation reaching the governor’s desk.”