Bill would ban 'heartless' discrimination against people with disabilities who need organs
The questions resurfaced for Kathleen Kirwan when she began treatment for kidney disease at the same Texas clinic where her brother labored through three years of dialysis before his death in 2015.
She replayed Daniel Kirwan’s 20 years of treatment in her mind – the renal failure, the medications that caused it, the countless catheter changes, the conversations with doctors. She wondered again: Why wasn’t he ever placed on a transplant list?
The answer, she said she believes, was her brother’s disability. Daniel Kirwan had Down syndrome.
“It was just kind of like old school that doctors used to believe that those with intellectual disabilities aren’t valued as much as other people,” she told USA TODAY. “I will tell you that it always did not sit right with me.”
Kirwan tried to make sure that didn’t happen again. She fought for Texas to join dozens of other states in addressing organ transplant discrimination for people with disabilities. Daniel’s Law, as it’s known in Texas since its 2021 adoption, is one of 30 around the country that bans such discrimination.
Now, advocates for people with disabilities are pushing for federal changes, as well. They say federal legislation would set a consistent, national policy for protecting people with disabilities who need new organs but in many cases have to cross state lines to get them.
Bills in Congress address discrimination
Bipartisan bills backed by national disability rights organizations have been introduced in both chambers of Congress.
In December, Sens. Marco Rubio, R-Fla., and Maggie Hassan, D-N.H., introduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act, a companion bill to legislation introduced in the House earlier in 2021.
“It is heartless to discriminate against someone in need of an organ transplant because they have a disability,” Rubio said in a prepared statement after introducing the bill.
The bill would enhance federal protections against organ donation discrimination, setting a baseline for states that increasingly are adopting their own laws meant to ensure people with disabilities don’t miss out on organs that could save their lives.
Federal law would streamline rules
Last year, 14 states adopted laws to protect people with disabilities from discrimination in organ transplants, according to the National Down Syndrome Society, which is pressing for state and federal legal protections. California’s 1996 law is the oldest in the country.
While people with disabilities have existing federal protections, such as the Americans With Disabilities Act, the society said they still face “willful and unintended discrimination in organ transplantation.”
“Too often people with Down syndrome are being discriminated against when they are referred by their doctors to transplant teams,” said Charlotte Woodward, the society’s community outreach associate and the woman for whom the federal bill is named.
She was born with a heart condition that required four open-heart surgeries before a heart transplant saved her life when she was 22. Now Woodward, who has Down syndrome, advocates for others with disabilities to receive the same kind of care she did.
“It brings into question whose lives are valued the most. It seems to me that transplant teams, when considering them for organ transplantation, are really elevating the lives of nondisabled people over the lives of people with disabilities and that’s not right,” she said.
Need for organs rockets: Organ transplants were slashed at the start of the COVID pandemic. But 2021 saw the most ever.
Federal legislation would add clarity for health care providers about how disabilities can be considered when deciding whether to refer someone for an organ transplant, said Bart Devon, senior director of public policy at the Down syndrome society.
The bill would bar discrimination in determining whether someone should receive an organ based solely on whether they have a disability. It also would establish expedited review of cases alleging discrimination at the Department of Health and Human Services and in federal courts.
“You might think that the medical establishment, which in many ways seeks to improve health care and quality of life, would be a place where we experience less discrimination," said Maria Town, CEO of the American Association of People With Disabilities. "But it’s actually an industry where people with disabilities experience some of the most high-stakes discrimination, including around organ transplantation."
How organ donation process works
Since 1984, heart, lung, kidney, liver, pancreas and intestines donations have been run through the Organ Procurement and Transplantation Network, a federal network for sharing organs overseen by the Department of Health and Human Services.
The nation’s 252 organ transplant centers use their own policies to decide whether to accept patients as candidates for transplant and whether to put a patient on a waiting list. A network of 58 organ procurement organizations recruits new donors and coordinates the organ donation process, such as making sure organs are safely transported.
Waiting lists prioritize the sickest patients, but organ transplant centers use facts about patients and their health to decide whether to put them on the list in the first place. Some of those so-called “contra-indications” disqualify organ transplant candidates entirely, while others just make it less likely that they will get on the list.
Disability has been used as a contra-indication by transplant centers, even though the Americans With Disabilities Act prohibits discrimination based on a disability and studies show transplant outcomes for people with disabilities are no different than for those without, according to a 2019 report from the American Council on Disability.
The report said transplant centers cite an inability to coordinate complicated post-operative care, follow-up appointments, lifestyle changes and managing medication side effects as reasons to disqualify patients with disabilities from transplant lists.
“When you actually talk to people with disabilities, they will say things like, 'My life is good. I enjoy my life.' And yet medical professionals inherently see that having a disability means you have a lower quality of life," Town said.
Because those centers write their own policies, patients might be rejected at one and accepted at another, even within the same state, according to the report. Variance in state law also contributes to the need for federal legislation, Devon said.
Is a federal law the best fix?
But Stanford University professor David Magnus said legislation is a "crude instrument" to fix a problem better solved by the medical community. He advocates for objective criteria and transparency – along with an appeals process – for organ donation decisions.
"There is zero question that there is a good deal of discrimination that is happening around the country on this issue," said Magnus, who teaches medicine and biomedical ethics.
The American Society of Transplantation, an industry group that represents transplant professionals, declined to comment.
“Individuals who experience disabilities deserve the same opportunities to thrive as all other Americans in every aspect of our society," Hassan, the New Hampshire senator, said in a prepared statement.
"Yet there are countless places where laws on the books still allow individuals with disabilities to be discriminated against, including in our health care system. It is simply unacceptable that Americans can be denied an organ transplant just because of a disability," she said, noting the bill she and Rubio have put forth ends this practice.
This article originally appeared on USA TODAY: Organ transplant law would protect people with disabilities
