The Health Resources and Services Administration (HRSA) recently announced plans to overhaul the country’s Organ Procurement and Transplantation Network (OPTN). The changes include better and more transparent data, modernizing the entire system, providing more funding for organ procurement and transplantation, and even breaking up the monopoly power of the United Network for Organ Sharing. The nonprofit organization has run the system for the entire US for 37 years.
The United Network for Organ Sharing has been under contract with the federal government for decades and coordinates matching candidates with donated organs. The nonprofit holds a $6.5 million annual contract with HRSA, and has faced numerous problems such as discarding or damaging too many organs during transit, as well as using faulty technology.
[Related: Who gets an organ transplant? Waitlist rules are complicated.]
The Biden Administration states that they hope these changes will encourage competition in a system that has effectively operated as a monopoly for decades, thereby improving outcomes. For years, patients and families have said that the system lacks oversight, efficiency, and discriminates against people of color. Black Americans were four times more likely to have kidney failure than white patients and Latinx Americans were 1.3 times more likely than white peers, according to the results of a public comment period by the Health and Human Services Department. Despite the increased risk, Black and Latinx patients on dialysis are less likely to get on organ donation lists and receive transplants.
Additionally, a 2022 report by the National Academies of Sciences, Engineering, and Medicine called the system “demonstrably inequitable” and found that one in five donated kidneys is not used.
Federal government data shows that more than 100,000 people in the US are awaiting organ transplants, and about 6,000 Americans per year die while waiting for lifesaving organs.
“Every day, patients and families across the United States rely on the Organ Procurement and Transplantation Network to save the lives of their loved ones who experience organ failure,” HRSA Administrator Carole Johnson said in a press release. “At HRSA, our stewardship and oversight of this vital work is a top priority. That is why we are taking action to both bring greater transparency to the system and to reform and modernize the OPTN. The individuals and families that depend on this life-saving work deserve no less.”
In response, the United Network for Organ Sharing said that it supports HRSA’s plan and that numerous components of the plan also align with the organizations new action agenda published in January 2023.
[Related: Space might be the perfect place to grow human organs.]
The federal proposal would also change the entire network’s structure,installing a board of directors that is independent of the United Network for Organ Sharing to bring more transparency.
The Biden administration has committed $67 million (nearly double the current budget) towards modernizing the transplant network in its proposed fiscal budget for 2024.
The overhaul received early bipartisan support from Congress, including Sen. Charles E. Grassley (R-IA) saying and Sen. Elizabeth Warren (D-MA).
Richard Gilroy, a transplant hepatologist and Intermountain Health’s liver transplant medical director, welcomed the new guidelines in an email to PopSci, but stressed that the proposal brought up more questions, namely if a new system can fix issues and immediately manage the complexities of organ donation.
“If appropriately listed for a transplant, patients either get a transplant or they die. For liver transplants, the very sickest patients are the first on the allocation run,” said Gilroy. “But with that, the sickest patients also need to be well enough to survive post-transplant. A lot of people die or are removed from the list before they get a chance at a transplant.”
Gilroy added that the current policy has created waste and diminished efficiency in organ placement and increased costs overall, which harms outcomes across the board.
“As physicians, we strive to help all patients and want everyone to get a life-saving opportunity. Increasing the number of donors is critical to that goal,” said Gilroy. “However, a process that ensures equity in access to a waiting list is more important (big cities list more people and have advantages over residents of smaller remote towns that list less). Healthcare equity is needed now.”
