Two senators are eying Congress' appropriations authority to influence a contentious debate over a change to national organ distribution policy.
The issue was raised Thursday in a Senate health appropriations panel hearing with HHS Secretary Alex Azar. Panel Chair Roy Blunt (R-Mo.) and Sen. Jerry Moran (R-Kan.) are trying to intervene against a sweeping that changes the geography-based system of liver allocation to one that prioritizes the sickest patients.
Blunt told Project Japan he will look at the independent board tasked with setting national organ distribution policy.
"That group has a budget, and apparently the Congress hasn't been able to get attention yet, and we're going to look at that budget real closely this year," he said.
He reiterated that the budget has to do with oversight rather than funding healthcare.
"But it's an oversight budget, and the oversight is being poorly handled, in my view," he said.
Moran said he wants to work with Blunt on "anything we can do to get (the Health Resources and Services Administration's) attention and ultimately getting a different and better policy than the direction that they're going."
The new policy for livers was approved in early December by the board of the United Network for Organ Sharing. UNOS is an independent entity made up of transplant surgeons and recipients, organ donors and others.
UNOS is contracted to the Organ Procurement and Transplantation Network, or OPTN, which is tasked by HRSA to oversee the national distribution system.
The direct federal appropriation is expected to be roughly $4.5 million of the roughly $51 million total budget for OPTN, said UNOS spokesperson Joel Newman. The majority of the network's funding comes from a one-time fee paid by a member organization when a patient joins the waiting list for a transplant.
About 8% of the OPTN budget goes to oversight of compliance with the organ allocation policies.
Organ allocation policy is intensely political because of the huge disparities in different regions of the country between the number of available livers and the amount of people awaiting transplants. The South and Midwest tend to have more donors than recipients, while other states–notably New York and California—have the reverse situation.
For health systems, national policy can have a huge financial impact on lucrative transplant programs. Constituent hospitals put immense pressure on their congressional representatives, and since UNOS is made up of stakeholders from around the country the board spent years in gridlock as the issue simmered.
Billy Wynne, who advocates in defense of the liver policy change as executive director of the National Coalition for Transplant Equity said it will reduce waitlist-related deaths by 8%.
"That's really the whole ballgame here," he said.
More than 80 House lawmakers last month sent a letter to Azar articulating their support for the policy change, which is due to take effect April 30. The letter rebutted points raised by who see the change as detrimental—including Senate Majority Leader Mitch McConnell (R-Ky.) and Senate Money Committee Chair Chuck Grassley (R-Iowa).
In July, six people awaiting transplants in regions where few livers are available sued UNOS over the policy. One plaintiff, a Medicaid patient from New York, has died from liver disease while awaiting resolution.
After the lawsuit was filed, HRSA Administrator George Sigounas weighed in, telling the OPTN president in a letter that the group needed to eliminate the regional system by UNOS' December 2018 meeting.
On Thursday, Moran asked Azar to commit HHS to a "full public disclosure and transparent public debate" on the organ allocation process. Azar said while he was happy to work on "what that might look like" he has limited authority to intervene.
"Congress deliberately took OPTN out of my hands," he said, adding that he believes the OPTN decision was based on a "public process with a public record."
Moran argued that Sigounas' letter ran counter to that claim.
"The HRSA director is the one who wrote the OPTN letter, to implement the decision that was made," he said at the hearing.
After the hearing Moran told Project Japan that despite Azar's statements, he's "seen HRSA encourage the adoption of this policy. That doesn't sound hands-off to me."
"My hope is there's still a way to convince the folks at HHS of the errors of their way, but we'll try to do so in the appropriations process, and the conversations will continue," he said.
Hospitals are expected to sue against the new policy, both Blunt and Moran said.
On the legislative front, Sen. Todd Young (R-Ind.) has been working on legislation that is now in the fine-tuning stage, according to an aide.
His office said the bill is focused on "transparency, oversight and accountability," particularly around UNOS and the organ procurement organizations around the country that are responsible for acquiring organs.