Discrimination against those with disabilities is illegal under federal law. But advocates say that’s not enough to ensure everyone has equal access to life-saving and extremely limited organ transplants.
Lawmakers have heard these cries, and now 30 states have anti-discrimination laws on this issue of organ transplants. West Virginia could follow suit.
“I just couldn’t fathom that somebody would be denied a life-saving organ transplant because they have a disability of some kind. I just couldn’t wrap my brain around it,” said Sen. Amy Grady, R-Mason, who is sponsoring Senate Bill 647. It passed the West Virginia Senate and could be adopted on the last day of session this Saturday.
The bill would bar health providers from denying someone a spot on a transplant waiting list based solely on an intellectual disability. Providers must also offer accommodations at every step of the process.
Christy Black works for the West Virginia Developmental Disabilities Council and has an 18-year-old daughter who has Down syndrome. She supports the bill, saying when folks face barriers to life-saving healthcare, it makes her think the worst.
“Some of that is really just, I think, seeing that people with disabilities are less valued,” Black said. “People with developmental, intellectual and developmental disabilities also have value in their lives and they are not less worthy.”
The landmark Americans With Disabilities Act of 1990 says folks with physical and intellectual disabilities must have the same opportunities to work, learn and live just like anyone else. But advocates across the nation are questioning if those protections work to guarantee access to organ transplants. In 2019, the National Council on Disabilities advised the federal government that transplant discrimination is real and needs to be dealt with.
Sen. Grady, and Black with the state disabilities council, do not think this kind of discrimination is prevalent in West Virginia. But they say a new state law would set some standards.
“It’s more proactive to make sure that it doesn’t happen because people with disabilities should be treated exactly the same as everybody else,” Grady said.
There are two transplant providers in the state. Those are WVU Medicine, which declined to comment for this article, and Charleston Area Medical Center.
“We do not discriminate against anyone with physical or cognitive or financial limitations,” said Alice Jones, who is the transplant administrator at CAMC. CAMC takes no issue with this bill.
In surveys where health providers admit to some level of discrimination, participants say they question if patients with cognitive disabilities will be able to remember to take their medications.
Jones says that’s not a good excuse because health providers are used to arranging accommodations for all kinds of patients.
“If the patient has a way to remediate the situation, some compensatory mechanism or social support or something like that, then the candidacy is supported,” Jones said.
While discrimination may be a rare occurrence that wrongly decides the fate of someone’s life, the larger reality of organ transplants is that there just isn’t enough to go around, despite best intentions.
“We do not take for granted the fact that this is a limited resource. That’s why we are very careful and make sure all the patients have their testing and can be good stewards of the gifts they’re given,” Jones said.
Equal Opportunity For Something That Isn’t Guaranteed
Jones said there are 70 patients on her waiting list to get a kidney transplant at CAMC. These patients can survive off dialysis, but that involves being hooked up to a machine for hours a day several times a week.
“I’ve had many patients say it’s not really living,” Jones said. “When they get this transplant, food tastes better. They have a better outlook on life. They’re able to travel. They’re able to do so many more things.”
There are more than 100,000 people in the U.S. waiting, potentially for years, for an organ transplant.
“Patients die waiting for transplants,” said Dr. Roy Bloom, who directs the Kidney/Pancreas Transplant Program at the Hospital of the University of Pennsylvania. He’s also on the board of the American Society of Transplantation.
To get on a waiting list, transplant centers must first decide if a patient is a good candidate for a transplant. Bloom said that an intellectual disability alone should never disqualify a patient. Instead, he looks at patients holistically to understand the risks versus benefits of a transplant. Undergoing serious surgery and having to take antirejection medications that weaken someone’s immune system are risks to consider.
“I wish there were enough organs and I wish that this was always safe for everybody,” Bloom said.”
As for benefits, Bloom has to weigh which patients will make the most of a highly limited resource.
“If you’re going to take a good quality organ, you’d want to give it to somebody who’s going to need it for the longest period of time, as opposed to an older patient who may not need the best quality organ, but will need an organ that will last them for as much of the rest of their life as possible,” Bloom said. “So we do try and take that into account … and try and balance equity with utility.”
Grady believes her bill will provide protections without tying the hands of transplant centers that ultimately decide who is medically a good transplant candidate. Grady said it is essential that organs are given to those whose bodies can best respond to the transplant.
“If you’re going to give somebody a heart that cannot follow through with those things, then three people die: the donor, the person who receives it, and the person who was next in line,” Grady said.