Public Policy Committee 2024 Year End Review

TRIO PUBLIC POLICY COMMITTEE ACTIVITIES IN 2024

The Public Policy committee meets twice a month to discuss government policies and events related to organ transplantation. Here is a summary of our discussions this year.

UNOS Modernization

Since the National Organ Transplant Act (NOTA) was enacted into law 40 years ago, the government has overseen a complex system regulated by multiple agencies:

• the U.S. Department of Health and Human Services (HHS)

• the Centers for Medicare and Medicaid Services (CMS)

• the Health Resources and Services Administration (HRSA)

For decades, HRSA awarded the United Network for Organ Sharing (UNOS) the contract to manage the Organ Procurement and Transplantation Network (OPTN). This changed however in 2023, with the passage of the “Securing the U.S. Organ Procurement and Transplantation Network Act” to “modernize” UNOS. UNOS has stated that it supports and is committed to modernization, and will continue to bid on tasks.

This legislation authorizes HRSA to award multiple grants, contracts, or cooperative agreements to support the operation of the network and eliminates a cap on the amount of funding available for supporting the network. It already has separated the OPTN and UNOS Board of Directors. One of the first efforts is to get RFPs (requests for proposals) to change the computer IT systems and software. The RFPs can come from non-profit, for-profit, and even foreign companies.

UNOS VP of External Affairs, Alicia Hennie, and Bernadette Jay, Community Affairs Ambassador liaison, spoke to our committee about some of the anticipated changes. It is unclear how the incoming administration will affect this new law.

Four TRIO members serve on the UNOS Patient Affairs Committee, chartered with speaking for the patient community on all matters that are part of the UNOS mission.

Monitoring for Rejection using cell-free DNA Testing

Some of our members went to Washington, DC to make our voice heard after

Medicare eliminated the use of non-invasive blood draws (rather than biopsies) to monitor for organ rejection. The campaign that ensued, called Honor the Gift 2, succeeded in having Medicare restore the use of such tests for kidney, heart, and lung maintenance.

Medicare Coverage for Immunosuppressants

We continue to be part of the Partnership for Part D Access, which works to maintain Medicare coverage of prescription drugs for the transplant community and the other five protected classes of patients. To date, the Partnership has successfully lobbied Medicare to prevent any coverage limitations.

Transportation of Organs

During COVID, organs were temporarily transported as air cargo rather than in airplane cockpits. The FAA Transportation Act that was passed in the spring will bring organs back into the cabins of commercial airlines. A working committee is expected to produce a report with recommendations for a tracking system next summer.

A New Medical Residency Program for Transplant Surgeons

TRIO endorsed an American Society of Nephrologists (ASN) kidney-recovery and post-transplant care training program for graduate nephrologists.

Computerized Referrals for Organs Available for Transplant

The Organ Donation Referral Improvement Act (H.R. 9939) was introduced in the House to support creating a national electronic referral system to be used by donor hospitals, OPOs, and transplant centers. TRIO signed on to a letter of support for a study of automated referrals.

Efforts to Support Living Donors

Though there were more than 46,000 transplants in 2023 and even more expected for 2024, there is still a shortage of organs. Therefore efforts are being made on many fronts to reward living donors. Here are some examples:

In NY State, the Living Donor Support Act was signed into law in 2022, but still hasn’t been implemented. It provides direct reimburstment of up to $10,000 for donation expenses of living donors.

The Living Donor Protection Act (HR 2923/S 1384), which was first introduced in 2013, again failed to get enough sponsors in Congress. The bills would prevent insurance companies from denying coverage to living donors for a variety of claims.

The End Kidney Deaths Act (HR 9275): ModifyNota.org is supporting an effort to give substantial tax credits to living donors.

The HOLD (Honor Our Living Donors) Act (HR 6020) is presented by WaitListZero and is soon to be introduced in the Senate. Its intent is to make sure that living donors are compensated more appropriately than in current guidelines.

The Organ Donation Clarification Act (HR 4343) revises the NOTA Act to allow pilot programs to test non-cash compensation.

The Living Organ Donor Tax Credit Act (HR 6171) would provide a $5,000 refundable tax credit for living donors.

The Chronic Kidney Disease Improvement in Research and Treatment Act (HR 5027) would prevent chronic kidney disease by ensuring appropriate reimbursement for quality care.

The Amend the Public Health Service Act with Respect to the Living Organ Donation Reimbursement Program (HR 10282) would not require income limits for recipients.