Science adviser Collins hints at a big White House ask to eliminate hepatitis C

WASHINGTON — The Biden administration will request “significant investments” to help eliminate hepatitis C in the United States in its forthcoming budget proposal, according to Francis Collins, the former NIH director leading the project.

Collins declined to provide too many further details before the official budget request later this week, but Rep. Hank Johnson, (D-Ga.), who joined Collins at a STAT event on the subject Tuesday, suggested the request could potentially be as big as $10 billion over five years. Collins also pointed out that the plan “fits nicely” with President Biden’s broader cancer moonshot, an initiative aimed at halving the cancer rate in 25 years, since hepatitis C is one of the leading causes of liver cancer.

“I would like, if it’s possible, to be as bold as possible, and contemplate not just an effort that would improve the situation, but that would eliminate hepatitis C in the United States,” Collins said at the event. “That’s a scary word, and obviously would require a huge investment, to try to reach everybody.”


He also said he’s hoping the initiative would be funded as “mandatory” spending, which would ensure it would not need to be renewed each year by Congress. Johnson, too, referenced a potential request for mandatory spending.

The Biden administration is expected to release more details about its federal budget later this week.


The plan is likely to have a major impact on incarcerated people, who are most impacted by hepatitis C, but are among the least likely to receive the pills that can cure their infection. An eight-part STAT investigation recently found that in 2021, at least a dozen states were treating fewer than 20% of the prisoners they knew to have hepatitis C, which can lead to liver cancer and death if it goes untreated. That investigation also found that even though there’s a simple cure for the condition, more than 1,000 incarcerated people have died of hepatitis C-related complications since those drugs hit the market in late 2013.

“That visibility of the problem, and humanizing, helped get more people to start thinking about the need to do something,” Collins said of the reporting.

Congress is not obligated to fund any requests in the White House budget, which is released annually and often outlines all of the White House’s biggest policy priorities, many of which never become law. It’s still an open question whether Congress will fund the massive initiative, especially given its price tag.

Collins suggested Tuesday that the health care savings the program would create — by, for example, preventing the need for liver transplants or cancer treatment — could outweigh the price of the initiative. In a webinar last year, Collins pitched a plan that could cost between $8 and $10 billion, which he suggested could save $26 billion by 2050.

The Congressional Budget Office, which creates official accounting estimates of how much each law passed by Congress costs and saves, has not yet scored the proposal. But Sen. Bill Cassidy, a Republican from Louisiana who supports eliminating hepatitis C, said that if the proposal does indeed save money, it’s worth pursuing.

“If you have a model which saves lives, saves money, gives us better outcomes, and you can do it in a 10-year window, that’s something we can endorse,” Cassidy said. “If it’s not the 10-year window, it takes a little bit more of a selling job.”

Johnson enthusiastically endorsed the plan, calling the potentially $10 billion initiative a “drop in the bucket” compared with the over $800 billion budgeted for national defense.

“In my mind, it’s a no-brainer,” Johnson said. “We should have done this last year.”

Sonia Canzater, an infectious diseases researcher at Georgetown law and panelist at the STAT event, also expressed her hope that the national program would streamline prevention, diagnosis, and treatment of hepatitis C.

“I’m very excited about the prospects of a national plan that would really just bring together a lot of practices and successes that we have seen in smaller pockets in different jurisdictions,” Canzater said.

The plan is likely to draw major interest among drug pricing academics. Though the details aren’t final, Collins suggested he’s a fan of a drug pricing payment model commonly known as the Netflix model, which Cassidy and others have championed. The idea, which allows the government to pay a fixed price for an unlimited amount of a medicine, has been implemented in three states, Louisiana, Washington, and Michigan, with mixed results.

Collins said the makers of the most popular hepatitis C drugs — AbbVie and Gilead — appear amenable to the idea.

“I don’t want to overstate their level of enthusiasm, but I think they’re extremely interested,” Collins said. “Right now they’re not making any money on this group of under-served patients who are hep C positive. This is a win for them.”

Source: STAT