COLUMBUS, Ohio (WOWO) — People with intellectual or developmental disabilities may face significant barriers when seeking organ transplants, according to new research from The Ohio State University.
Researchers Brittany Hand and Austin Schenk examined kidney transplant care and found patients with disabilities were significantly less likely to be evaluated for a transplant. Among patients who were evaluated, those with disabilities were nearly 40% less likely to ultimately receive a transplant.
“That tells us that at a couple of different points in this transplant care pipeline, these patients are falling through the cracks,” Hand said.
The findings come despite laws intended to prohibit disability-based discrimination in organ transplantation.
Forty states, including Ohio, have laws prohibiting discrimination based on disability during the transplant process. The Ohio State researchers said, however, they found no evidence those laws have eliminated the disparity identified in their research.
Schenk, an associate professor at Ohio State and a transplant surgeon, said the transplant process is extensive and complicated, involving multiple steps before a patient can even be placed on a waiting list.
That complexity can also make potential discrimination difficult to identify and document.
“Every patient population has different needs, different abilities to navigate the health care system,” Schenk said. “We want to make sure that the process caters to what each patient group needs.”
The research suggests the disparity can occur at more than one stage of the transplant process. Patients may encounter barriers during the initial evaluation, while others who make it through that stage may still be less likely to receive a transplant.
Researchers say that means simply having anti-discrimination laws on the books may not be enough to close the gap.
Hand and Schenk say greater transparency, stronger oversight and improved data collection could help identify where disparities occur and determine what is contributing to them.
“That will really help us to be able to target those specific points and make sure that all patients are getting an equal chance,” Hand said.
Disability advocates say the findings reinforce concerns they have raised about equal access to medical care.
Gary Tonks, a longtime disability advocate with the Arc of Ohio, said the issue is about making sure a person’s disability or diagnosis does not become a factor in determining whether they can receive potentially lifesaving treatment.
“It’s no different than if we didn’t provide a heart transplant because of the religion you had or the color of your skin; it’s the same issue for us,” Tonks said. “The diagnosis I have, the label I have, shouldn’t really matter when it comes to medical procedures.”
The researchers say better tracking of the transplant process could provide a clearer picture of where patients with disabilities are being lost along the way and help health officials develop targeted solutions.
Advocates, meanwhile, hope the research brings greater attention to the issue and encourages lawmakers to examine whether existing protections need to be strengthened.
The Ohio State findings add to broader questions about how the nation’s organ transplant system evaluates patients, places them on waiting lists and ultimately determines who receives available organs — and whether those procedures provide patients with disabilities the same opportunity for lifesaving treatment.
