More than 37 million Americans are living with kidney diseases, including more than 800,000 people with kidney failure, a life-threatening condition without a cure. Transplantation is the optimal therapy to manage kidney failure for most people, yet a kidney transplant is not accessible to all who might benefit: more than 12 Americans who make it on to the kidney transplant waitlist die every day while waiting for a kidney.
In July, ASN members headed to Capitol Hill to urge members of Congress to support the swift enactment of S. 1668/H.R. 2544, the Securing the U.S. Organ Procurement and Transplantation Network (SUS OPTN) Act. This legislation, aimed at improving the nation's transplant system, is a top legislative priority for ASN. ASN members educated their congressional delegation about how this vital legislation empowers the Health Resources and Services Administration (HRSA), the federal agency that oversees transplant care, and the kidney and transplant community to continue improving and modernizing the transplant ecosystem.
ASN's Policy and Advocacy Committee and its Quality Committee members offered their clinical expertise to congressional leaders and their staff, highlighting the following:
Kidney transplant care is an essential tool to manage kidney failure.
Access to transplant care must be maximized at every opportunity.
The SUS OPTN Act will help kidney and transplant professionals in supporting their patients seeking a kidney transplant by allowing the HRSA the statutory flexibility to increase investment in and make important, new improvements to the nation's transplant system.
Additionally, ASN advocates met with their congressional delegations and key leaders on the House Committee on Energy and Commerce and the Senate Committee on Health, Education, Labor, and Pensions, which have legislative jurisdiction over the bill.
Congressional Kidney Caucus Co-chairs Representatives Larry Bucshon, MD (R-IN), and Robin Kelly (D-IL) introduced the SUS OPTN Act in the House, which rapidly and unanimously advanced the legislation out of the House Committee on Energy and Commerce on a bipartisan basis. A powerful group of bipartisan Senate leaders, including Senators Ron Wyden (D-OR), Chuck Grassley (R-IA), Ben Cardin (D-MD), Todd Young (R-IN), Bill Cassidy (R-LA), Elizabeth Warren (D-MA), Jerry Moran (R-KS), and Cory Booker (D-NJ), jointly introduced the SUS OPTN Act in the Senate. The legislation has been referred to the Senate Committee on Health, Education, Labor, and Pensions for review.
This bipartisan, bicameral legislation includes statutory revisions requested by the Biden administration to support the instrumental HRSA OPTN Modernization Initiative. Led by HRSA Administrator Carole Johnson, this important initiative focuses on “putting patients first, prioritizing information flow to clinicians, promoting innovation through continuous competition, and enhancing transparency and accountability” and reflects numerous ASN advocacy priorities raised over years of advocacy by ASN members to improve transplant care.
Table 1 outlines the key opportunities for improvement in the transplant system and depicts how the provisions of the SUS OPTN Act allow HRSA the flexibility to pursue them, in partnership and under advisement of patients, health professionals, and other stakeholders in the kidney and transplant community.
U.S. Organ Procurement and Transplantation Network Opportunities
The structural changes included in the SUS OPTN Act will enable further improvements to the transplant system requested by ASN and the kidney advocacy community. ASN is joined in advocating for this legislation by nearly 30 other patient and health professional organizations and other stakeholders. The society has met with HRSA numerous times to share its perspectives on opportunities for improvement to the U.S. transplant system that would ensure it optimally serves patients by increasing accountability, transparency, and efficiency. ASN also participated in a July “OPTN Industry Day,” which the HRSA organized, with a wide array of stakeholders to discuss and seek input on its plans to modernize the U.S. transplant system.
ASN will continue to work with Congress and the HRSA to achieve these crucial changes to ensure that all people who would benefit from a kidney transplant have access to this life-saving therapy.
Read ASN's statement on the introduction of the legislation on the ASN Advocacy and Public Policy homepage (www.asn-online.org/policy), and contact your congressional delegation to encourage them to support this important legislation through ASN's Legislative Action Center (www.asn-online.org/policy/lac.aspx).
