The Government is Required to Act
“Allocation policies... shall not be based on the candidate’s place of residence or place of listing.” - Final Rule, 121.8(a)(8)
Today, many of the patients on the nation’s organ transplant list continue to wait longer than they should for an organ. Economic and geographic disparities continue to plague the organ transplant system. Where you live and how much money you make should not determine whether you live or die while waiting for an organ, but sadly, this is a reality that many Americans face each year.
Lawmakers have a responsibility to end this unjust reality, and federal regulations require the Health Resources and Services Administration (HRSA) to adopt policies that are not "based on the candidate's place of listing." It’s time for the government promote equity within the organ transplant system so that all patients have an equal shot at receiving a life-saving transplant.
What role does the government play?
America’s organ transplant system is overseen by the United Network for Organ Sharing (UNOS), a private, nonprofit organization chartered by the U.S. Health Resources and Services Administration (HRSA) to oversee the national transplant system and ensure equitable organ allocation. Long ago, UNOS divided the country into 11 regions.
Currently, the sickest liver patients are ranked at the top of local waiting lists within their UNOS region. Organs from a deceased donor are given to the sickest person in that region, even if there are sicker patients in greater need elsewhere in the nation. In many states, this leads to far fewer organs than in other parts of the country—and far more avoidable deaths. It also enables more affluent patients needing liver transplants to get on shorter waiting lists by traveling to areas with better access to healthy organs.
In 1994, Congress reauthorized the National Organ Transplant Act (NOTA), clarifying that its intent “was to ensure patients that no matter who they were, or where they live, they would have a fair chance of receiving a necessary organ transplant.” In 1998, HRSA promulgated a Final Rule implementing NOTA, which highlighted existing geographic disparities and required implementation of policies “that provide organs to those with the greatest medical urgency… wherever they live.”
What are OPTN and UNOS doing now?
While stakeholders from parts of the country benefiting from disproportionately short wait times protest proposals that meaningfully address disparities, OPTN and UNOS continue to move forward with well-developed, thoughtful concepts that will save lives.
At its meeting last month Chicago, OPTN formally reviewed analysis of proposals to adopt larger districts for broader organ sharing as well as newer “neighborhood” and “concentric circle” approaches that would achieve the same goal. OPTN also accepted extensive public comment on these issues at the meeting
At least one of the proposals will likely be posted online for written comments in late summer. OPTN will solicit this feedback, and move forward with a vote to determine whether the new model will be implemented.
The proposals currently under consideration by OPTN/UNOS are over 22 years in the making. CODE will be using the hashtag #ActNowUNOS to encourage OPTN/UNOS to adopt a proposal that reduces overall inequity and promotes fairness within the current organ transplant network.
To stay up to date on the latest news in the organ transplant debate, be sure to subscribe to CODE’s 'action alerts.' These updates will keep you informed on the current state of play, and could provide you with opportunities to engage with Congress and the Administration on issues related to transplant equity.