An Urgent Call for Action: NKF Testimony on Organ Transplantation Reform

In a compelling testimony before the House Energy and Commerce Investigations and Oversight Subcommittee on September 11, 2024, Dr. Jesse Roach, NKF Senior Vice President of Government Relations, delivered a powerful message on behalf of the over 800,000 people living with kidney failure and the nearly 90,000 individuals on the kidney transplant waitlist.

Dr. Roach focused on the implementation of the Securing the U.S. Organ Procurement and Transplantation Network Act, highlighting progress and persistent challenges in the organ donation and transplantation system. 

The September 2023 passage of the Act has brought hope to patients and their families, promising a more equitable, transparent, and patient-centric organ donation and transplantation system. Dr. Roach commended Congress and the Health Resources and Services Administration (HRSA) for their ambitious OPTN Modernization Initiative, which aims to address longstanding challenges in the system.

Learn more about the OPTN Modernization Initiative. 

Despite progress, Dr. Roach expressed deep concern about several critical issues:

1. Organ Wastage: Alarmingly, 1 in 4 deceased donor kidneys are not transplanted. In 2023 alone, 8,574 kidneys intended for transplant were discarded - about 23 kidneys wasted per day. This is particularly troubling given that an average of 12 people die each day waiting for a kidney transplant.
2. Lack of Transparency: There's a pressing need for greater transparency in the organ offer and decline process, as well as in the pre-waitlisting experience.
3. Diversity and Independence: The OPTN board needs stronger patient representation and independence from the traditional small group of decision-makers.
4. Committee Oversight: Enhanced oversight of OPTN committees is crucial to ensure timely, transparent, and patient-centric policy decisions.

Learn more about concerns in kidney transplantation.

Dr. Roach outlined several recommendations to strengthen the implementation of the Transplantation Network Act:

1. Clear accountability measures for vendors and HRSA to maximize every organ donation and transplantation opportunity. 
2. Mandated regular, easy-to-understand reporting to patients on organ offers and declines.
3. Collection and public reporting of data on the pre-waitlisting experience to address disparities in access to transplantation.
4. A diverse and independent OPTN Board with strong patient representation.
5. Enhanced oversight of OPTN committees to ensure transparent and patient-centric decision-making.
6. Urgent implementation of reforms, recognizing that every day of delay means lost opportunities for waiting patients.
7. A robust system for addressing whistleblower complaints at both the OPTN and HRSA levels.
8. Regular, transparent updates to Congress, stakeholders, and patients on the progress of enhancing organ donation and transplantation.

See all the ways you can take action with Voices for Kidney Health. 

Dr. Roach concluded his testimony with a powerful reminder: "For those on the waitlist, optimism isn't enough. They need action, they need results, and they need them now."

This testimony comes at a critical juncture. As HRSA moves forward with implementing reforms, including the recent separation of the OPTN Board of Directors from the OPTN contractor, Dr. Roach's words serve as a crucial reminder of the urgency required in this life-saving work.

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