ATLANTA – A new Georgia law is set to make the state the latest to ban discrimination against individuals with physical and mental disabilities in the organ transplant process.
The Georgia Legislature passed a bill known as Gracie’s Law that will prohibit providers from disqualifying individuals with disabilities from receiving organ transplants based solely on their disability. The law is inspired by a young Georgian with Down syndrome named Gracie, whose parents became involved with the issue upon discovering she may require a heart transplant.
“Discrimination against anyone is wrong for any reason, but especially because someone might have a birth defect or Down syndrome or are developmentally disabled,” said bill author Rep. Rick Williams, R-Milledgeville.
The bill passed unanimously in the House last year, but the coronavirus pandemic halted further action in the Senate and ultimately led to the bill stalling in committee. Williams found strong bipartisan support again this year, and the law passed with near unanimous approval.
“When it comes down to life, you know, there’s no bipartisan politics,” said Williams.
When the bill goes into effect July 1, Georgia will become the 17th state in the country and the 13th in the last four years to pass such a law, according to the National Down Syndrome Society. For disability advocates in the state, it represents progress that they hope will continue.
“Georgia hopefully will be one of the states that does realize people with disabilities are as capable and equal as anyone else,” said Ken Mitchell, assistant director of the Georgia-based disability advocacy organization Disability Link.
The organ transplant process in the United States is federally administered by the United Network for Organ Sharing, which oversees 251 organ transplant centers in the country. These centers, of which four are in Georgia, are responsible for recommending which individuals are added to a national, computerized waiting list that is designed to eliminate bias in the organ-to-recipient matching process.
But organ transplant centers retain a great deal of discretion in deciding who is ultimately placed on the waiting list. Each of the four transplant centers in Georgia is permitted to its own internal policies and decision making, a process that some groups claim leaves room for bias and discrimination.
One such group is the National Council on Disability, a federal agency that advises the U.S. government on policy matters concerning disability. In a 2019 report, the agency outlined how misinformed assumptions about the quality of life of individuals with disabilities could contribute to transplant eligibility decisions that amount to discrimination.
At the heart of the push for Gracie’s Law and legislation like it is a pushback against these flawed assumptions, which Mitchell argues often originate from voices outside of the disability community.
“My quality of life, as far as my experiences, is just different, they’re not any less,” said Mitchell.
Dr. Gerard Vong, director of Emory University’s bioethics program, finds that the pushback is grounded in solid evidence demonstrating that people without disabilities can hold assumptions about individuals with disabilities that simply don’t match their lived experiences. Vong, who specializes in the distribution of scarce goods, finds Gracie’s Law valuable in that it makes explicit that decisions regarding transplant eligibility must be based on medically relevant factors.
“The fact that there is a law might thereby encourage transplantation teams to be a bit more cognizant of this issue,” said Vong.
Despite the legislation being enacted at the state level, federal policies remain vague. Past efforts by members of Congress to push for clearer guidelines that directly address discrimination in the process have been unsuccessful, and leading authorities like the American Medical Association continue to list quality of life as a consideration for transplant eligibility.
However, the U.S. Department of Health and Human Services, which oversees the United Network for Organ Sharing, is currently seeking more information on discrimination in the process in response to the National Council on Disabilty’s 2019 report, which could signal a change in guidelines to come.
“Equal access to medical care, especially life-saving care, is a fundamental right that must be protected,” said Council Chairman Andrés Gallegos.
For now, advocates feel education and support for disability rights is generally trending in the right direction, while being sure to point out the need for more work across a wide assortment of issues, including education, healthcare, transportation and more.