In the decade since pharmaceutical maker Gilead launched a breakthrough treatment for hepatitis C, a wave of new therapies have been used to cure millions of people around the world of the blood-borne virus.
Today, 15 countries, including Egypt, Canada and Australia, are on track to eliminate hepatitis C within this decade, according to the nonprofit Center for Disease Analysis Foundation. Each led a fierce national testing and treatment campaign.
But the drug arsenal, which has generated tens of billions of dollars for pharmaceutical companies, has not brought the United States any closer to eradicating the disease.
Spread through the blood, including through intravenous drug use, hepatitis C causes inflammation of the liver, although people may have no symptoms for years. Only a fraction of Americans carrying the virus are aware of the infection, although many develop the deadly disease.
A drug treatment lasting eight to 12 weeks is simple. But those most at risk, particularly those who are incarcerated, uninsured or homeless, have difficulty navigating the American health care system to seek treatment.
Among people diagnosed in the United States since 2013, only 34% have been cured, according to a recent analysis by the Centers for Disease Control and Prevention.
“We’re not making any progress,” said Dr. Carolyn Wester, who heads the agency’s viral hepatitis division. “We have models of care that work, but it’s a patchwork. »
Dr. Francis Collins, who led the National Institutes of Health for decades until his retirement in 2021, led a White House initiative to eliminate the disease.
In an interview, he said he was motivated by memories of his brother-in-law, Rick Boterf, who died of hepatitis C just before the new cures were introduced. An outdoorsman, Mr. Boterf endured five years of liver failure while waiting for a transplant, and even that procedure was not enough to save him from the destructive virus.
“The more I looked at it, the more impossible it seemed to get out of it,” Dr. Collins said.
The initiative, which was included in President Biden’s latest budget proposal, provides approximately $5 billion to establish a five-year “subscription” contract. The federal government would pay a lump sum and, in exchange, receive medication for each patient enrolled in treatment.
Several states already use similar subscription contracts, with limited success. Louisiana was the first to roll out such a program, in 2019, and reported a significant increase in the number of people treated through Medicaid and in correctional facilities. But the number of treatments in the state declined during the pandemic and has not rebounded. Today, as it nears the end of its five-year contract, Louisiana has treated barely half of the people it set out to treat.
Dr. Collins acknowledged that a national drug purchasing agreement like Louisiana’s alone would not be enough to reverse the trend.
“Anyone who tries to say, ‘Oh, it’s just the cost of the drug, that’s the only thing that’s in the way,’ hasn’t looked carefully at those lessons,” he said. To that end, the proposal also calls for a $4.3 billion campaign to raise awareness, train clinicians and promote treatment in health centers, prisons and drug treatment programs.
Carl Schmid, who directs the HIV and Hepatitis Policy Institute, a nonprofit organization, said he is concerned that the White House proposal focuses too much on drug prices. “The real problem is finding money for outreach, testing and providers,” he said.
Advocates say some states have assembled robust efforts, like New Mexico, which have helped connect hard-to-reach populations with treatment, largely without federal support.
“New Mexico is one of our superstars,” said Boatemaa Ntiri-Reid, a health policy expert with the National Alliance of State and Territorial AIDS Directors.
Andrew Gans, who manages the state’s hepatitis C program, said about 25,800 residents need treatment and several strategies will be needed to eradicate the disease by the end of this decade. “You can’t do that through one door.”
In the southeastern New Mexico village of Ruidoso, Christie Haase, a nurse practitioner, had been working at a small private clinic for only two weeks when a patient with abnormal liver enzymes tested positive for hepatitis C .
Like many primary care providers, Ms. Haase had not been trained to treat hepatitis C and offered to refer the patient to a gastroenterologist. But none practiced in the city, and the patient was reluctant to travel to Albuquerque, a three-hour drive away.
“I didn’t know where to go from there,” Ms Haase said.
One of the biggest obstacles to eliminating hepatitis C is that the specialists most qualified to treat the disease are often the least accessible to patients, especially those who lack insurance or shelter. stable, two risk factors for infection.
Even when referrals are possible, they require follow-up visits that patients may miss and copayments that they may not be able to pay.
So instead of handing the patient over, Ms. Haase participated in a video conference with other rural providers, where she presented the case, and more experienced clinicians recommended additional tests and medications. The meeting was part of a program called ECHO (Extension for Community Healthcare Outcomes), which Dr. Sanjeev Arora, a gastroenterologist, developed in the early 2000s to connect primary care physicians in sparsely populated areas with specialists.
Dr. Arora, who later founded the nonprofit ECHO Project to promote the model worldwide, estimated that the New Mexico program had provided hepatitis C treatment to more than 10,000 patients. “It was a real game changer,” he said.
Care behind bars
Few people are at higher risk of hepatitis C infection than those who are incarcerated. A recent study estimates that more than 90,000 people in U.S. state prisons are infected, 8.7 times the prevalence of people outside the correctional system.
For many years, New Mexico prisons did a good job of testing for hepatitis C and a terrible job of treating it. More than 40 percent of prisoners were infected, the highest prevalence in any state prison system, but no funding was available for the necessary treatment. Prisons then rationed medications, including refusing to take them to inmates accused of disciplinary infractions. In 2018, out of some 3,000 infected inmates, only 46 were treated.
That changed in 2020 when state lawmakers appropriated $22 million specifically to treat prisoners with hepatitis C. The New Mexico Department of Corrections also arranged for the drugs to be purchased at a deeply discounted price through the federal drug pricing program 340 B.
But some prisoners continued to refuse treatment, so the state enlisted incarcerated people to convince them. Since 2009, the Peer Education Project, a collaboration between Project ECHO and the Department of Corrections, has trained more than 800 people to advise others on infection prevention and treatment.
Last May, incarcerated peer educators from across the state participated in a video conference to discuss why their fellow inmates were reluctant to seek treatment and to share their approaches to alleviating those concerns.
Daniel Rowan, who now runs the prison education program, had himself been incarcerated. He said the program has gone a long way toward improving the relationship between inmates and their medical providers, although it remains “a set of challenges to say the least.”
Between 2020 and 2022, the number of imprisoned people receiving hepatitis C treatment quadrupled, to more than 600. Last year, the New Mexico state legislature allocated an additional $27 million to support this effort.
Another group that is crucial to reach is people with a history of IV drug use: two-thirds of newly infected people had previously injected drugs, according to the CDC.
In New Mexico, where opioid addiction is a generational scourge, harm reduction programs are deeply integrated into the state’s public health department. The state legalized needle exchanges more than 25 years ago and was the first to allow naloxone distribution.
Early last year, a Las Cruces County public health clinic combined hepatitis C treatment with existing services, including needle exchanges and prescribing buprenorphine, a treatment for opioid addiction . Over the next year, a smaller proportion of patients in the buprenorphine program tested positive for hepatitis C than expected, which health officer Dr. Michael Bell attributed, in part, to changes in drug use. People who once injected heroin now smoke fentanyl, limiting their exposure to unsanitary needles that can transmit the virus. The CDC estimates that this change also contributed to a slight decline in new hepatitis C infections nationally, which fell 3.5% in 2022.
It’s still not enough
Despite statewide efforts, no tracking system exists to accurately measure the number of people who have recovered. Just over 2,200 people were treated in 2022 by the largest providers. The state estimated it would need to treat 4,000 people that year to stay on track.
As in other states, New Mexico clinicians also have difficulty persuading patients to return and begin treatment. Some countries have approved a rapid test that allows diagnosis and initiation of treatment in a single visit. The test is undergoing accelerated review by the National Institutes of Health in the United States, and data should be ready this summer, an agency spokesperson said.
The president’s initiative was also included in last year’s budget, but lawmakers have yet to introduce legislation to fund it, and there may be little opportunity to pass it before the November elections.
The Congressional Budget Office evaluates a bill based on its impact on the budget. Dr. Collins acknowledged that lawmakers in Congress might balk at the price tag, but argued that it…
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