With a promising new plan to pay for pricey cures, two states set out to eliminate hepatitis C. But cost hasn’t been the biggest problem

WASHINGTON — For nearly a decade, many experts assumed the biggest obstacle to eliminating hepatitis C was the sky-high cost of the new cures.

So when Washington state and Louisiana signed flashy, unprecedented deals with the pharmaceutical companies that make the medicines back in 2019, and dedicated personnel and money toward the lofty goal, many celebrated. Just last week, the White House held the states up as a potential model for a forthcoming multibillion-dollar national effort with the same aim.

But those states are nowhere near achieving the overarching goals they set, a new STAT investigation reveals. In Washington, the rate of treatment for the state’s Medicaid program now is actually lower than it was before the initiative began.

The rocky roads in each state underscore that eliminating hepatitis C will likely be far more difficult than it seems, as STAT’s interviews with more than two dozen experts, including current and formerly incarcerated people, drug industry officials, the intellectual architects of the Washington and Louisiana deals, and a U.S. senator show.

Though we have now had a miracle cure for the condition for nearly a decade — and though its cost is falling — there are more intractable problems than mere access. The condition often affects people who don’t see doctors regularly and might miss the infection, or who don’t even have a safe place to store medication. Big goals and a stockpile of pills, experts told STAT, aren’t enough.

“We need to be treating more people than we are now,” said Mary Fliss, who leads the Washington state Medicaid program for hepatitis C elimination. “This is stinking hard.”

It raises questions, too, about the shape of the new White House initiative, which has not yet been announced. President Biden’s science adviser, Francis Collins, told hepatitis C advocates last week he hoped Congress would allocate $8 billion to $10 billion to help eliminate the virus nationally.

Already, advocates are warning the White House that it needs to focus on small-scale interventions, like supporting needle exchange programs, making sure doctors can get reimbursed for so-called “street medicine” and investing in “peer-navigators” that help people get connected to care.

Collins said in an interview that the White House is learning from Louisiana, Washington, and other hepatitis C elimination efforts. He also shed light on further aspects of the program, like developing faster tests for the virus, that he says will help the federal government identify and treat hard-to-reach infections.

But he also emphasized the challenge of achieving the ultimate goal of eliminating hepatitis C.

“This is going to be really hard. If it wasn’t really hard, it probably would have just happened by now,” Collins said. “We’re going to eliminate hepatitis C not because it’s easy, but because it’s hard.”

When Washington and Louisiana set out on their effort to eliminate hepatitis C, a course of treatment could run as much as $94,500; even now, the medications retail for roughly $24,000 for a cure.

Washington and Louisiana found a solution: both states signed a high-profile deal with drugmakers to purchase an unlimited supply of hepatitis C medications for a set fee. The idea was dubbed the “Netflix model” because it would allow the states to access a huge amount of the therapy for a comparatively low price — much like a bored twenty-something who purchases a $9.99 Netflix membership to binge all 18 seasons of Grey’s Anatomy.

The deals, which provided drugs for Medicaid beneficiaries and people in the state’s prison systems, seemed like a genius way to get the miracle pills to the people who needed them the most.

Washington, hypothetically, should have been the ideal place to eliminate the hepatitis C virus, which is commonly referred to as HCV. The state had a long history of embracing the public health interventions, like syringe service programs, that public health experts say are imperative to slowing the spread of hepatitis C and other blood-borne infections. The initiative also had the support in the highest reaches of the state government: Democratic Gov. Jay Inslee directed the state’s health department in September 2018 to come up with a plan for eliminating the virus by 2030.

Louisiana, meanwhile, was a strong test case for a different reason. The state had one of the highest rates of hepatitis C but some of the most stringent restrictions on who could access the curative drugs. By July 2018, Louisiana had treated just 66 people in its entire prison system for the condition; more than 3,000 people were estimated to carry the virus, according to reporting from HepCorrections.org. The situation was so dire that several men filed lawsuits against the Department of Corrections for refusing to treat their hepatitis C.

Their ultimate goals were similar: Washington pledged to cure 80% of the people in the state by 2030. Louisiana gave itself until 2024.

The deals did help the states pay for these costly drugs that otherwise may have bust the budget. Louisiana, for example, previously estimated it would cost $760 million to treat all of the hep C-positive people in its Medicaid program. Now, the state has said it is spending no more than $35 million per year for the five years of its Netflix deal.

Those massive savings, in turn, helped dramatically increase the number of people who could access hepatitis C cures.

Levell Doughty, an incarcerated person in Louisiana who sued for treatment, finally got the drugs after the subscription model was implemented.

“All I can say is thank you,” Doughty told STAT in a phone interview. “It was like a new lease on life, really. I have the opportunity to live the rest of my life and get out of here…It gave me great, tremendous hope.”

But now, two years later, treatment rates are slowing and both states are drastically far from achieving their overarching goals.

As of September, Louisiana had treated less than 12,000 of the estimated 39,000 people with hepatitis C in its Medicaid program and prison system. The state would have to almost triple its recent treatment rates over the next 27 months if it wants to achieve its 2024 goal, but treatment rates in Louisiana instead appear to be dropping. The state’s Medicaid program treated just 3,111 of hepatitis C-positive people last year, down from 4,092 the year prior. And in the first three months of 2022, it started just 587 people on treatment across both Medicaid and its corrections population.

Washington, meanwhile, is now treating even fewer people than it was in the three years prior to signing its Netflix deal, when doctors wrote about 17,000 prescriptions for people on Medicaid. The state’s Medicaid program filled 6,649 hepatitis C prescriptions in 2017 alone. In 2021 that number dropped to just 2,409.

While some of the downturn in both states is likely due to the Covid-19 pandemic, treatment rates in Washington are dropping faster than the national average. Nationwide Medicaid prescriptions for hepatitis C medications dropped 15.6% from 2019 to 2020, while prescribing dropped 30.1% in Washington. Louisiana's treatment rates between 2019 and 2020 actually increased by 18%, but then dropped by 22.8% from 2020 to 2021.

Both states' correctional systems are also far from eliminating the virus in their facilities, though they appear to be closer to that target than the state’s Medicaid programs.

The Washington Department of Corrections treated 977 people total between 2019 and 2021, according to public records obtained by STAT. The state treated just 227 people for hepatitis C in 2021, the lowest annual total since Washington launched its HCV elimination plan in 2019. The exact number of people in the prison system with hepatitis C is unknown, though officials have estimated that between 11% and 15% of the population typically carries the virus at any one time, which would mean in 2021, somewhere between 1,500 and 2,100 people were positive for hepatitis C.

The Louisiana Department of Corrections, in turn, has now treated more than 1,500 people in their prison system, where it’s previously been estimated that at least 3,000 carry the virus.

“Based on these numbers, they are not on track,” said Blythe Adamson, an infectious disease epidemiologist. “To get back on track will likely require more resources to find many invisible patients who have been left behind because they're not engaged in care.”

Even the program’s biggest backers are worried the states won’t reach their goals. Louisiana Sen. Bill Cassidy, who is also a licensed liver doctor and who helped to craft the Netflix model concept, repeatedly praised his state for its massive progress in treating the virus. But in an interview with STAT, he was realistic about the size of the problem.

“I don’t think they are going to be able to achieve that,” he said.

Mary Fliss, the Washington Medicaid official, also acknowledged her state is struggling — and she underscored the challenges the state will face in trying to recover.

“We're at the hard part,” Fliss said. “I wish I could tell you ‘Oh yeah, we’ve got this great plan, and it’s based on this other system’s fantastic results, and we’re just going to be flying,’” Fliss said.

Both Washington's and Louisiana's struggles underscore the difficulty in eliminating hepatitis C — and the need for a comprehensive, well-funded strategy for actually getting people connected to treatment.

Both states had good plans, argued Sonia Canzater, the associate director of the Hepatitis Policy Project at Georgetown University. They just didn’t have the full support necessary to actually implement those plans.

“It’s literally words in a PDF if they’re not receiving that long-term support to make sure these things actually happen,” Canzater said.

Nearly every aspect of Washington’s plan other than the actual Netflix deal fell by the wayside due to budget shortfalls and the Covid-19 pandemic, state officials acknowledged.

Two reports produced as part of the hepatitis C initiative pitched countless public health interventions that were meant to make sure that people at highest risk for hepatitis C could get easy access to testing and treatment. They included standing up screening programs in emergency rooms, commandeering buses that could drive to far reaches of the state to test people for the virus, and making sure that clinics that treat people for opioid use disorder also could treat patients for hepatitis C. There was even talk of hiring a marketing firm to increase awareness of the initiative. Now, all of those ideas have at least temporarily been shelved.

“The plan was never funded and there was no promise of funding when the directive from the governor came out,” said Emalie Huriaux, who leads the Washington Department of Health’s hepatitis C efforts.

Even seemingly basic tasks, like setting up an “interactive dashboard … to provide publicly available data on HCV and progress toward elimination” and an online provider directory for people seeking hepatitis C treatment haven’t been finalized.

Washington also hasn’t fully embraced one of the best options for tackling hepatitis C — widespread testing and treatment in jails — despite its previous pledges to do so. Huriaux, the Washington Department of Health employee, told STAT she couldn’t pinpoint a jail that’s routinely testing for hepatitis C, though the original plan suggested 30 jails around the state should start doing so.

Experts say these facilities, in particular, are invaluable resources for catching infections, because so many people cycle through their facilities while awaiting trial.

Even King County Jail, the largest jail in the state, doesn’t test everyone booked into its facility for hepatitis C. Instead, people who have certain risk factors, like history of IV drugs, will be referred “for medical provider review for order placement for any necessary testing, including HCV testing,” a spokesperson for the jail told STAT.

King County Jail has tested 7,156 people for hepatitis C in the last two and a half years. That’s a considerable feat, but it’s likely just a portion of the people who cycle through the facility each year. The jail is built to hold roughly 2,700 people and the average person only stays for roughly 30 days, meaning tens of thousands of people cycle through the facility each year.

“If you want to touch a lot of people from a public health standpoint, you stand at the doors of a jail,” said Marc Stern, a professor at the University of Washington who previously served as the assistant secretary for health services for the Washington Department of Corrections. “It’s going to be orders of magnitude easier to eliminate hepatitis C if jails are an integral part of [the strategy.]”

But Stern largely declined to criticize the Washington jail system’s lack of progress, given the struggles with responding to the Covid-19 pandemic. “If a year or two from now we are still in the same place that we are now, we would need to be more critical of ourselves,” Stern added.

Louisiana has stood up more of the initiatives it promised than Washington, but it too has struggled with efforts to get hard-to-reach people, like those who inject drugs, into treatment.

Lauren Richey, the medical director of the Infectious Disease Center at the University Medical Center in New Orleans, said Louisiana's efforts have made it infinitely easier for liver doctors like her to treat people with these medicines. But she acknowledged, too, that it’s still difficult to get hard-to-reach people to come through the clinic door.

“We still have a lot of issues with young people, especially people actively using drugs. They still remain a challenging group to engage with,” she said. “In order for us to really get to the heart of this epidemic … we have to invest in getting the people [who] are the hardest to reach” into care.

The state is also facing a shortage of doctors who both prescribe hepatitis C drugs and treat Medicaid patients, making it very difficult for people living in rural areas to access care. In certain areas of the country, like Natchitoches Parish on the western border of the state, the nearest clinic is either 50 miles south in Alexandria or 70 miles north in Shreveport, according to the state’s own database of providers. Patients living in the parishes on the eastern border, like Madison, likewise would have to travel nearly 50 miles to the city of Monroe to see a doctor.

“I see patients from hours away sometimes that are driving here to find someone to treat hepatitis C,” Richey said.

Louisiana also had plans to set up a training program, dubbed HCV Champions, to get doctors familiar with treating hepatitis C. It set a goal of having one hepatitis C treatment advocate in each of the state’s nine public health regions. But the state doesn't appear to have reached that modest goal either.

Experts STAT spoke to emphasized that Louisiana's slowing progress could be explained by the fact that the state had a backlog of people awaiting treatment in the early rollout, but now, it’s harder to find people to treat.

“The further you get out in the population … the more you start to hit this population that is harder – harder to identify, more costly to convert to treatment,” said Rena Conti, a Boston University health economist who has extensively studied the Netflix model. “It’s entirely possible one of the reasons you’re seeing that slowdown in Louisiana is related to that.”

Both Conti and Rebekah Gee, the former secretary of health for Louisiana who implemented the hepatitis C effort in 2019, largely praised Louisiana's progress, particularly in light of the Covid-19 pandemic. But she also argued that the department needs to redouble its efforts.

“The health department, I hope, will be stepping up efforts to increase testing, awareness, and clinician capacity for treatment of the virus — that needs to ramp back up,” Gee said.

She said the department needs to increase staffing, to “make clear to people in the department that this is a priority” and to ensure that there's an adequate evaluation of the program’s progress if they want to see the state get back on track.

Gee, the former Louisiana health secretary, acknowledges that her state is unlikely to actually eliminate hepatitis C in the timeline she had imagined. But she insists the effort kicked off another even larger goal: Creating a national movement to eliminate HCV.

“When we started this work in 2016, there was no state health department talking about eliminating this virus,” Gee told STAT. “You have to look at the success of this effort in light of what I perceive of as a movement that was created and has very much taken on a life of its own.”

Michigan signed its own Netflix deal with the drugmaker AbbVie in 2021. Texas, too, is actively considering its own Netflix negotiation, according to a recent report from the state’s health department.

But the most significant development is coming from 1600 Pennsylvania Avenue. The White House now believes a national plan for eliminating hepatitis C could save more than 100,000 lives in the next 30 years, all while saving the health care system $26 billion.

On a call with advocacy groups focused on HCV treatment last week, Francis Collins and other White House officials pitched a forthcoming “National Program for Hepatitis C Elimination.” It will be focused on expansion of screening for the virus, developing better quicker tests to detect the disease, expanding training for doctors, and ramping up efforts to prevent new infections.

The plan, which has not yet been reported publicly, also included a call for a “national federal procurement” of hepatitis C drugs that could be distributed to states, prisons, and jails. Collins told STAT that a “Netflix model” is on the table, though he also said on last week’s call that it would “potentially [be] modeled on the federal Covid-19 Test and Treat program” for Pfizer’s Covid-19 drug Paxlovid. Under that plan, the government has purchased 20 million doses of the drug, which are distributed for free to the states.

The details of the plan have not been released publicly, and they appear to be separate from an earlier, less detailed plan that the federal health department released in January 2021. But President Biden has been briefed on Collins’ effort, as has “virtually every agency that might have a piece of it,” he said.

There’s still a number of unknowns about the proposal, namely whether Congress will agree to fund the project. Collins said last week that he hoped the plan would be included in the White House’s upcoming federal budget request, which would then have to be approved by lawmakers. Congress has already balked at providing cash infusions to fund the White House’s health efforts, including additional funding to respond to the ongoing Covid-19 pandemic.

It’s clear, however, that Collins plans to learn from the efforts so far in both Louisiana and Washington.

He noted, for example, that less than half of the estimated cost of the national program would actually be dedicated to procuring drugs. “The rest is going to be all the health care delivery things that are going to have to be optimized for this to succeed,” including engaging hospitals that treat the poor, building up testing and treatment capacity in prisons, and engaging substance use clinics in HCV care.

Collins also said the plan will help support the development of so-called point-of-care tests that can confirm a hepatitis C case in person, which he argued would help prevent losing people to follow up appointments. He even pitched the idea of pushing so-called opt-out testing for hepatitis C, which would direct a doctor to run a hepatitis C test during most medical procedures unless the patient refused.

“If we are a nation that cares about all of the people — not just the ones [who] have gold- plated health insurance — then we have a responsibility to meet this opportunity. It almost seems like an imperative of a moral sort.”

Nicholas Florko produced this special report as part of a reporting fellowship sponsored by the Association of Health Care Journalists and supported by The Commonwealth Fund.