Parents of kids with disabilities fight against transplant discrimination

BOSTON — The clock is ticking on a bill that would prevent discrimination against people with intellectual disabilities who need organ transplants.

According to one study, only about half people with intellectual disabilities receive transplant referrals and only one-third of those people ever get evaluated.

John and Jeanne Doherty were shocked when they found if their daughter Jessica ever needed an organ transplant, she could be denied on because of her disabilities.

"She's an important member of our family and she's a viable member of the community and people are better off for knowing her. She should have every right that everybody else has,” said Jeanne Doherty of Billerica.

Jessica, 20, has Down syndrome and Autism.

State Rep. Tom Sannicandro was also shocked when he heard about it.

“It was like, ‘oh my god.’ I didn't think this was a possibility. That discrimination could be that deep for someone with Down syndrome," he said.

Sannicandro's son Dave has Down’s syndrome.

He's supporting a bill preventing organ banks, hospitals and health insurers from discriminating against people like Dave and Jessica.

The Mass Medical Society said in a statement that, “Our policy is to continue to strive for universal access to health care and no discrimination in health care settings for all people.""

The Mass Down Syndrome Congress said that one of the cited reasons for discrimination is that the transplant committees say that their quality of life is not the same as someone without an intellectual disability.

“How can you say one individual has more value than another individual? That's a basic human right. We are all equal and to say they is just offensive,” said Sannicandro.

If the bill doesn't get passed by the end of this legislative session, they'll have to start all over again and the process could take up to two more years.

"It is so critical and if someone did get denied access to an organ transplant the result could be dire,” said Maureen Gallagher with the Mass Down Syndrome Congress.

Sannicandro admits the House may not get to a vote before the end of the session. The bill is currently still in committee.