Porphyria, Hepatoerythropoietic

When President Joe Biden’s budget comes out on Thursday, expect to see a big, potentially multi-billion-dollar proposal to really take a crack at curing more of the nearly 2 million hepatitis C cases that in 2020 led to more than 15,000 deaths, former NIH director Francis Collins said a Stat News event last night in Washington, DC. “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. “That’s a scary word and obviously would require a huge investment to try to reach everybody.” The so-called Netflix-like subscription model would see the federal government spend a fixed amount on the drugs, likely in the billions as it costs an average of $24,000 per 12-week course, and then gain access to an unlimited number of pills to treat and cure as many with hepatitis C as possible. The move — which Collins said has the support of both Gilead and AbbVie, the two companies that make the hep C drugs — would also need to come up with a plan to find out who exactly has the virus, as Collins noted that more than 40% of people who have it don’t know that they do. Prison populations also have disproportionately high numbers of hep C cases and historically low numbers of usage — a STAT investigation dug into a lot of the questions around why some of these people died and didn’t gain access to the drugs. AbbVie and Gilead did not immediately comment. Speaking on last night’s panel alongside Collins was another proponent of a major move to cure more hep C cases, ranking member of the Senate health committee, Sen. Bill Cassidy (R-LA), who discussed the Netflix-like subscription model he helped stand up in his home state to increase access to the cures, which can eliminate the infection in more than 90% of people who take them. A ramp-up of usage will go a long way to saving money from liver transplants and other end-of-life care, the panelists noted. “If you have a model that 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. Collins agreed that the funds would be provided over only a fixed period of time and that the federal government would not act as a middleman in the supplying of the drugs to states. But the proposal’s inclusion in the Biden budget on Thursday won’t make it a sure thing as Congress is the ultimate decider on what priorities are funded in the budget.