Advocacy

Addressing a Critical Health Crisis

February 11, 2022, 10:59am EST

For individuals with kidney failure, getting a transplant is life changing. It frees patients from the rigors of dialysis and allows them to return to some semblance of normal life. Unfortunately, today’s transplant system fails far too many people. Twelve people die every day waiting for a transplant, and most never access the waitlist because they’re too sick, they don’t have good information, or because bureaucratic barriers get in their way.

The system can prove frustrating in seemingly contradictory ways: There aren’t enough kidneys available to meet demand, yet more than 3,600 potentially transplantable kidneys are thrown away because of inefficiency in the system and risk aversion. A person on the waitlist receives an average of 17 organ offers before they actually get a transplant. This situation must change, and NKF has been working on several policy initiatives that will get us closer to our goal of securing transplants for all.

This approach must take into account that the organ transplant system is a complicated, siloed, yet interdependent ecosystem that includes dialysis facilities, organ procurement organizations (OPOs), donor hospitals and transplant centers. Each of these stakeholders has different priorities, skill sets, financial incentives, and rules and regulations. Fixing the system will require a major realignment of the federal regulatory framework, changes to reimbursement policy, and incentives for all stakeholders to improve.   

Our Transplant Roadmap

Recently, NKF submitted a series of recommendations to the Centers for Medicare and Medicaid Services on ways to improve the transplant system. You can read a summary of our comments or the full submission for all the details, but the highlights include our five key priorities:

  • Reducing kidney discards
  • Increasing deceased and living donation
  • Expanding access to the transplant waitlist
  • Creating a transparent and patient-centered transplant experience
  • Promoting system-wide performance of the agencies overseeing the transplant ecosystem

While these are common-sense goals, achieving them will require a collective effort. Our team will be working with policymakers to revise existing rules that govern the transplant system (such as the Dialysis Organization Conditions for Coverage and the Transplant Center Conditions of Participation), as well as exploring new payment models and other incentives that improve the system for all. Our strategy will likely include some legislative fixes, lots of meetings with federal agencies, and ongoing advocacy from patients to make sure our voices are heard.

If you’d like to get more involved in our policy and advocacy activities, or want to learn more about our transplant agenda, contact NKF’s Transplant Policy and Strategy Director Morgan Reid.