Advancing Living Donor Protections, Maximizing Patient Access to Transplant Care 

Increasing opportunities for patients to have kidney transplants and ensuring equitable access to those transplants is a top priority for ASN.

This is promising to be a good year for kidney transplant policy: 2023 has been bustling with activity that points to a hopeful horizon. It is only March, but some key developments signify important progress.  

In addition to the good news about modernizing the Organ Procurement and Transplantation Network (OPTN), ASN is encouraged by a recent statement by the United Network for Organ Sharing (UNOS) (the non-profit agency that operates the transplant system), which emphasizes that the OPTN Kidney Transplantation Committee “intends for both prior and future living donors to receive the same level of priority for a deceased donor organ in the new framework as they receive in the current allocation system.” 

In a recent letter responding to OPTN’s call for input to an update on its efforts to design a continuous distribution system for kidney allocation, Dr. Josephson urged OPTN to clarify how it would prioritize living donors in the forthcoming new system. “ASN implores OPTN to continue to honor commitments to ensure rapid access to a kidney to prior living kidney donors and extend that commitment to future living kidney donors, should the donors ever need a kidney transplant themselves,” the letter states. Many living donors and other patient advocates had expressed concern that it was unclear whether the prioritization they have in the current allocation system would be upheld in the future system. 

Kidneys from a living donor tend to provide the best outcomes for recipients and can uniquely help address the gap between wait-listed patients and kidneys from deceased donors. 

Increasing opportunities for patients to have kidney transplants and ensuring equitable access to those transplants is a top priority for ASN—a theme echoed in the society’s advocacy on two other issues up for consideration in the 2023 OPTN Winter Comment Period. 

ASN weighed in on the concept advanced in the white paper, “Ethical Evaluation of Multiple Listing,” to eliminate many patients’ ability to list at multiple centers. ASN wholeheartedly supports OPTN and the Ethics Committee’s emphasis on “revising policies that entrench [health disparities]” but respectfully urged OPTN and the committee to focus their efforts to achieve this goal by reforming other aspects of the system to reduce inequities, particularly inequities in accessing multiple listing. The society noted that the policy concept could have unintended consequences that will make it more difficult for patients to access kidney transplants than under the current system without meaningfully advancing equity.

“Rather than limiting many patients to a lowest common denominator of access (at a maximum of just one transplant center), at this moment in time, our efforts should be focused on helping more patients overcome individual, institutional, and systemic barriers that impede their ability to maximize their likelihood of getting a kidney transplant at the transplant center(s) most likely to help them succeed, in accordance with their individual care goals,” pointed out Dr. Josephson in ASN’s letter, which also listed 16 specific recommendations to help achieve the shared objective of increasing access to kidney transplantation and ensuring that access is equitable. 

In service of that goal, ASN recommended exploring the creation and funding of a federal program to support kidney transplant patients in accessing transplant evaluation and, ultimately, transplantation, at program(s) that might be a good fit for them. Using the National Living Donor Assistance Center and the Department of Veterans Affairs as models, “we should explore the creation of a similar program to support kidney transplant candidates to foster more equitable access to evaluation,” emphasized Dr. Josephson in the letter. 

Ample research demonstrates that there is significant untapped potential to maximize the use of procured organs to increase survival and quality of life for people with kidney failure, particularly as compared to dialysis. Responding to this unfortunate reality, the OPTN Operations and Safety Committee proposed implementing on opt-out system for organ offer filter use, a step towards the ultimate vision for mandatory organ offer filter use. The use of offer filters aims to minimize cold ischemia time and expedite organ placement, two critically important aspects of increasing organ use. Accordingly, ASN perceives numerous potentially positive outcomes deriving from this proposal, if finalized. 

Model-identified filters may decrease the number of offers programs must dedicate time and resources considering and responding to (sparing their time for other patient care-related activities) decrease the amount of time organ procurement organizations (OPOs) must spend working to place an organ (allowing them to focus resources on other efforts, such as working with donor families and procuring other organs in their service areas), and decrease the “time to yes,” by ensuring offers are made only to programs with a reasonable likelihood of accepting them based on demonstrated program expertise and risk tolerance levels, among other changes, that could improve patient access to kidney transplantation—the ultimate goal. 

However, the society also outlined potential unintended consequences related to opt-out filters and noted serious concerns regarding an eventual move to adoption of mandatory filters. For example, the offer filters could impede patients’ agency to select a program whose organ offer acceptance practices are in alignment with their individual care goals, and ASN urged OPTN to ensure transparency regarding organ offer filters in patient-friendly formats as well as invest in patient education efforts and tools to support informed program selection, such as a patient matching clearinghouse. The society also noted concerns that the filters could hinder program evolution and deepen divides in patient access, stating “it is crucial to watch for inadvertent separation of centers into conservative and aggressive centers, with the divide being only expanded over time.”

ASN appreciated the opportunity to provide input into the OPTN policymaking process and will continue to advocate for these recommendations as well as other policy changes to maximize patient access to transplant care across the kidney health ecosystem.