Despite bipartisan agreement on the need for testing and treatment for the life-threatening liver disease hepatitis C, potentially hundreds of thousands of Americans remain untreated or even unaware they’re infected as efforts to expand access to cures have stalled in Congress.

Legislation introduced last year has struggled to gain traction as lawmakers focus on other priorities and succumb to partisan divisions. 

The result is that while countries like England are on track to eliminate hepatitis C as a public health threat within the next few years, the United States is falling well behind.

“It comes back to money and political will,” said Daniel Raymond, director of policy for the National Viral Hepatitis Roundtable in the U.S. “How do you convince Congress, especially these days — a very divided Congress — to make this a priority?”

A bipartisan bill introduced by Sen. Bill Cassidy, R-La., a liver specialist and chair of the Senate’s main health committee, would create a national plan to scale up testing and treatment, but it has yet to receive hearings or vote. The bill is co-sponsored by Sen. Chris Van Hollen, D-Md.

At the same time, the Trump administration has signaled a pullback from infectious disease priorities, dimming prospects for a coordinated federal response. 

And while the Congressional Budget Office estimates the bill could save $6.6 billion over a decade by preventing the costs associated with liver failure, cancer and transplants, the proposal would require an initial $10 billion federal investment to buy lifesaving drugs and expand access to testing and treatment.

“That has always been a barrier — getting lawmakers to understand the need to invest on the prevention side when there’s an upfront cost,” said Mike Weir of the National Alliance of State and Territorial AIDS Directors.

Another sticking point is eligibility. Parts of the legislation would limit access for undocumented immigrants, a provision that has complicated support in the House and raised concerns among community health centers.

‘No-brainer’

While the U.S. signed on to the World Health Organization’s call to end hepatitis C as a public health threat by 2030, the effort hasn’t received significant funding from Congress. 

The Cassidy-Van Hollen bill, named the “Cure Hepatitis C Act,” would create a national program to expand testing and treatment to people least likely to access it, including those who are incarcerated, uninsured or low-income.

“We really need to enact this as soon as possible. Every day, more lives are lost that could have been saved, and we’re also not achieving the savings from the taxpayer that we should,” Van Hollen said in a phone interview. “This approach is a no-brainer. It will save lives and also lots of taxpayer money.”

The legislation would also direct the federal government to negotiate a five-year agreement with drug manufacturers to purchase unlimited hepatitis C treatments at a fixed price. That could make a big difference in expanding access to the drug.

“I think because of the nature of the U.S. health care system we’re going to need something like the Cure Hepatitis C Act to really have a breakthrough,” Raymond said. 

Other countries like England have pursued a similar model in response to the high cost, which can reach tens of thousands of dollars per course of treatment. That price tag has led state Medicaid programs, insurers and correctional facilities to impose restrictions that limit access to treatment.

Access can vary based on where a person lives, what type of insurance they have — if they have any at all — and whether they are incarcerated or facing challenges like homelessness or drug use. 

Estimates for U.S. hepatitis C cases vary between 2.2 million and 4 million adults, but because the disease initially doesn’t cause symptoms, only half may know it. Of those that do, only one-third access timely treatment. Long-term infection can cause serious health issues, liver damage, cancer and even death. 

Still, the legislation has seen little urgency from congressional leaders since being introduced last summer as Congress prioritizes other things like tax cuts, immigration enforcement funding and partisan fights. 

“Congress can’t seem to walk and chew gum at the same time,” said Erica Miller, a partner at CRD Associates, which represents the American Association for the Study of Liver Diseases in lobbying to advance the bill. “We’re in an environment where it’s exceedingly hard to move policy.” 

The bill has not received a committee hearing or a vote even though its sponsor, Cassidy, chairs the powerful Senate Health, Labor, Education and Pensions Committee. 

“There’s always a little bit of a glimmer of hope that something’s dislodged, but I can’t tell you that it’s truly dislodged,” Cassidy said. Cassidy is also a member of the Senate Finance Committee, which also shares jurisdiction over the bill.

At the same time, the Trump administration has deprioritized public health, particularly for infectious diseases.

The president’s fiscal 2027 budget request proposes cutting dedicated funding for hepatitis prevention at the Centers for Disease Control and Prevention. It also proposes eliminating a stream of grant funding at the Substance Abuse and Mental Health Services Administration that helped providers guide patients to hepatitis C treatment. 

Similar requests have been rejected by Congress.

And earlier this year, the administration canceled grants that included hepatitis C funding before reinstating it with no explanation.

Researchers looking into hepatitis C and other diseases have had grants canceled. The administration also proposed cutting funds for HIV/AIDS programs, which often also address hepatitis C.

“Big things do not happen easily these days in Congress. It takes leadership, and I don’t see that,” said Carl Schmid, executive director of HIV+Hepatitis Policy Institute. “Right now, they’re dismantling our health care system. We’re going in the opposite way.”

The path forward

Van Hollen said he plans to discuss with Cassidy the possibility of using unanimous consent to speed the bill through the Senate. 

If a senator objects to passing the bill without a roll call vote, it would likely have to go through the regular process of getting a committee and floor vote. Cassidy and Van Hollen have also discussed attaching the bill to “must pass” legislation like a spending bill. 

But efforts to get similar legislation introduced in the House have stalled due to a provision in the Senate bill that would prohibit undocumented immigrants from accessing the medicine under the program.  

While it is not necessary for a bill to have a partner in the other chamber, it can help signal political support, especially when legislation needs to the blessing of leadership for fiercely guarded floor time. 

While Cassidy had told advocates that immigration restrictions were necessary to secure the support of House Republicans, the provision has irked House Democrats who generally want to provide everyone access to health care, regardless of immigration status. 

Reps. Diana DeGette, D-Colo., and Mariannette Miller-Meeks, R-Iowa, have intended to sponsor the legislation in the House, according to multiple sources familiar with the discussions. But DeGette has been concerned about the immigration language and wants it removed, according to those sources.

Federally qualified health centers — commonly called community health centers— believe the bill would require them to ask patients about immigration status, something they traditionally have not done and object to. 

The centers are a key part of the bill, serving as an access point for low-income people to get health care. They are required by law to treat anyone who walks through the door, including people without immigration status.

Van Hollen said he would rather the language not appear in the bill but its inclusion shouldn’t delay the matter. “I share those concerns,” he said of House Democrats in a phone interview. “It would be better if it was completely universal, but my view is we should start saving lives now and work to expand to make it universal” later, he said. 

This report is part of a reoccurring series examining why hepatitis C treatments remain elusive in United States compared with England, examining barriers like cost, insurance, and unequal access. It was supported by a reporting fellowship from the Association of Health Care Journalists and The Commonwealth Fund.