WASHINGTON – A reform related to the U.S. organ transplant system authored by a Fresno-area member of Congress was included as one piece of a larger act that received strong bipartisan support in the U.S. House of Representatives.
House Resolution 1262, named the “Mikaela Naylon Give Kids a Chance Act,” passed the House on Dec. 1 and included in it the Permanent OPTN Fee Authority Act sponsored by Democratic Rep. Jim Costa and Republican Rep. Beth Van Duyne of Texas. Costa’s legislation aimed to complete the bipartisan effort to modernize the county’s organ transplant system, according to a Dec. 3 press release from his office.
“As co-chair of the Organ and Tissue Transplantation Awareness Caucus, I know how critical it is that families waiting for a lifesaving organ can trust the system to be fair, transparent and accountable,” Costa said. “This bipartisan bill ensures that every dollar collected goes directly toward strengthening the network, improving outcomes and giving patients the best possible chance at life.”
OPTN is the Organ Procurement and Transplantation Network, established under the Health Resources and Services Administration (HRSA) as a public-private partnership by Congress in 1984. It is used to coordinate organ donations and transplants nationwide.
The Permanent OPTN Fee Authority Act authorizes the U.S. Department of Health and Human Services (HHS) Secretary to collect registration fees directly from OPTN members for each transplant candidate placed on the transplant list. It requires that registration fees will only be used to support OPTN operations.
Previously, registration fees were collected by contractors like the United Network for Organ Sharing (UNOS).
“This change ensures stable, transparent funding for OPTN operations,” the press release said.
According to the press release, Congress passed bipartisan legislation in 2023 that allowed for competitive contracting when it comes to carrying out OPTN services, ending the 40 years UNOS spent as the sole contractor. By giving the authority to collect and manage OPTN to HRSA, the press release said the reform removes a “longstanding financial conflict of interest created by UNOS’s dual role in setting and collecting fees.”
The legislation also requires quarterly reporting of the fees collected and activities funded and establishes public dashboards with key performance data, such as organ utilization and discards, the press release said.
This reform is part of the larger Mikaela Naylon Give Kids a Chance Act, named after a 16-year-old from Colorado who died from cancer in October. Naylon, who was first diagnosed when she was 10, was an advocate for childhood cancer research.
The Mikaela Naylon Give Kids a Chance Act re-authorizes a priority review voucher program under the Food and Drug Administration that provides pharmaceutical companies with expedited review of more profitable drugs in return for targeted pediatric cancer treatment research.
The legislation will next be considered by the U.S. Senate.
