Access to kidney transplantation is improving for everyone, but more work remains to be done

Organ donation and transplantation are saving more lives in the United States than ever before, thanks to concerted work by stakeholders from across the country: donor families, organ procurement organizations, transplant centers, the Organ Procurement Transplant Network (OPTN), the hundreds of volunteers who serve on OPTN committees, and others.

I have witnessed this remarkable achievement firsthand as a transplant physician caring for people with kidney disease. I also witness the plight of people with end-stage kidney disease who languish on transplant wait lists, a situation that is compounded by the kinds of disparities seen in other aspects of health care.

OPTN is the federal organization responsible for oversight of the U.S. transplant system. Aided by hundreds of volunteers from the donation and transplant community who advise on policy, it has long recognized that socioeconomic and racial disparities have limited access to organ transplantation, especially kidney transplantation, and have worked to eliminate these for all people needing transplants. Two major policy changes made over the past eight years have increased equity in transplant access for patients awaiting kidney transplant.

In 2014, I chaired the OPTN kidney transplantation committee that developed and implemented a new system for allocating donor kidneys. One of its many purposes was to address inequity resulting from the way the wait time for a kidney was calculated. This was accomplished by starting the clock ticking for a transplant when a patient begins dialysis — something that is uniformly recorded for everyone who needs this blood-filtering procedure — rather than when she or he is referred to a transplant center and placed on a waitlist.

This change was instituted because an analysis of data demonstrated that Black and Hispanic individuals were referred to transplant centers for evaluation after being on dialysis longer than white individuals. This change was successful in accomplishing many improvements to kidney allocation. In the first two years after the new kidney allocation system went into effect, kidney transplant percentages by recipient ethnicity became similar to the ethnic makeup of waiting list candidates.

Access to the transplant waiting list — which means being referred to a transplant center and being placed on a waiting list — and access to transplantation — actually receiving an organ for transplantation — represent two different phases of care for individuals with end-stage kidney disease. Access to the list is influenced by wider societal issues, such as being able to obtain affordable health insurance, availability of health care providers, and transportation to doctor’s appointments. These deeply ingrained health care disparities, which limit access to equitable treatment, must be addressed by the entire health care system to advance true equity in access to organ transplantation.

Organ allocation policies alone cannot fix the fact that some areas of the country, either through omission or commission, do not provide equitable access to health care, and thus equitable access to transplant waitlists, to their citizens.

In an effort to reduce disparity in access to kidney transplantation based upon where people live, the OPTN once again modified the kidney allocation system to remove arbitrary geographic units for organ distribution. These changes, which went into effect in March 2021, were instituted in response to a U.S. Department of Health and Human Services mandate brought on by a lawsuit filed by a young woman who was waiting for a lung transplant. She was in a hospital in New York City, where the waiting time is long, while across the river in New Jersey the waiting time was short.

This lawsuit highlighted the arbitrary nature of the boundaries of the donor service areas that are used to distribute organs, and poignantly demonstrated how these dividing lines can result in life or death for patients. The OPTN moved to develop a new system that did not allocate organs based upon these arbitrary geographic boundaries. This was essential for ensuring that the sickest patients in the U.S. receive care first, regardless of where they live or receive treatment.

Outcomes from the first six months of organs allocated under this new policy show that it has been a success and did not inadvertently alter the prior equity gains achieved by the 2014 changes. There has been a 22% increase in kidney transplants nationwide, with many states, including Tennessee, Arkansas, South Carolina, Georgia, seeing record numbers of deceased donor kidney transplants (see Note 1 below). Deceased donor kidney transplants for Black patients have grown for nine consecutive years, increasing by 87% from 3,369 in 2012 to 6,296 in 2021 (see Note 2 below). In comparison, there was an increase of 39% for white patients over that same period.

The new allocation system has also had the intended effect of increasing geographic equity.

While some within the transplant community seem focused on continuing to fight these policy changes by filing unproductive lawsuits, launching political campaigns, and publishing attacks in the media, the direction the OPTN has taken — which is supported by the majority of transplant professionals — is to continue improving the transplant system to provide equitable care for all patients living with organ failure. As long as people are waiting for organ transplants, there is urgent work to be done. The refusal by individuals to accept the reasons for the needed policy changes and acknowledge the data showing that the changes are meeting the intended goals is a dangerous distraction that results in no positive outcome and harms people in need of organ transplants.

The U.S. has one of the highest-performing organ donation systems in the world, as measured by the number of organ donors per million people. In the midst of the Covid-19 pandemic, when many hospitals across the country were struggling to care for critically ill patients, a record 40,000 organ transplants were performed, a continuation of an upward trend in organ donation, organ recovery, and transplantation. The country’s organ procurement organizations have increased the number of deceased organ donations for 11 consecutive years. They also are refining and improving the system from within through process improvements, technology advancements, and smart consolidation.

For example, in 2017, New England Donor Services, which was created under the leadership of president and CEO Alexandra Glazier, assumed control of an underperforming organ procurement organization and a higher performing one. Over the next three years, New England Donor Services doubled the rate of organs transplanted in the lower-performing organization’s service area, resulting in a donation rate for the new combined organization that was ranked among the top 25% in the U.S. in 2018 and 2019, and improved yet again in 2021 in the wake of the Covid-19 pandemic (see Note 3 below). All of this is consistent with recent public calls by organ procurement organizations for improved donation and transplant regulations and oversight. With the new regulations that are now in place and a process of continuous performance improvement underway, it is time to support this work — and those doing it — because lives depend upon it.

A recent report by the National Academies of Sciences, Engineering, and Medicine determined that a top priority for improving equitable access to organ transplantation is to improve the rate at which transplant programs actually use the organs — particularly kidneys — that are donated, recovered, and offered to people on transplant waiting lists. According to the report, 20% of the kidneys recovered by organ procurement organizations in 2019 were not used by U.S. transplant centers because of a fear that the outcome might be bad, lack of local need due to short waiting times for organs, and operational inefficiencies on the part of transplant centers.

Improvements in this area alone could results in up to 1,000 more lives saved a year. Consistent with the recommendation from the National Academies, the OPTN recently approved new metrics for evaluating the performance of transplant centers in an effort to increase accountability and improve performance. The National Academies committee also supported the transplant system’s recent adoption of policies that removed artificial geographic boundaries as a basis of organ allocation in favor of a wider, continuous distribution of organs that is patient-centric.

The transplant system and all of its interdependent components — donor families, donor hospitals, organ procurement organizations, transplant programs, histocompatibility laboratories, and others — must work together to equitably care for all patients waiting for organs. Trust in this high-performing system by reliance on facts, and rejecting politically motivated mischaracterizations and falsehoods, is essential if the transplant community is to be a good steward of the gift that so many individuals make each year through organ donation. At the absolute worst time imaginable in their lives, donors and their families make the decision to help anonymous individuals in need. This is what transplant professionals and the transplant community should keep front of mind as they do their work.

Richard N. Formica Jr. is director of transplant medicine and professor of medicine and surgery at Yale University School of Medicine, the immediate past president of the American Society of Transplantation, and a member of the Organ Procurement and Transplantation Network’s Board of Directors, Membership and Professional Standards Committee, and chair of its Membership and Professional Standards Committee and its subcommittee on Performance Monitoring Enhancement. The opinions expressed here are his own and should not be construed to be the opinions of Yale University School of Medicine, the American Society of Transplantation, or the Organ Procurement and Transplantation Network.

Note 1: To see results by state on the OPTN data site: Choose Category = Transplant; then Choose Organ = Kidney; then select the Transplants by State link

Note 2: To see results by ethnicity on the OPTN data site: Choose Category = Transplant; then Choose Organ = Kidney; then select the Transplants by Recipient Ethnicity link

Note 3: To see results for New England on the OPTN data site: Choose Category = Donors; then Choose Organ = All Organs; then click the Deceased donors by DSA link and view the rows for “CTOP LifeChoice Donor Services” and “MAOB New England Organ Bank”