SAN FRANCISCO — Just a few years after the introduction of a reliable cure for hepatitis C, this city has launched a campaign built on shoe leather and shrewd epidemiology to eliminate the virus.
Health workers are expanding testing and searching the streets for homeless patients who don’t pick up their medication. Clinicians are training more doctors to treat infections. Patients can store their medications at a syringe exchange.
It’s all to combat a pressing and growing problem: In the U.S., more deaths are tied to hepatitis C, which can eventually cause liver cancer and failure, than the 60 other top communicable diseases combined, HIV and tuberculosis among them.
Before the development of the latest hepatitis C drugs, which are remarkably effective at curing the disease, the notion of eradication would have been implausible. That is no longer the case. But the virus is now being fueled by drug use, hitting patients who are the hardest to reach and have the least access to care and the pricey medications. Many are homeless, mentally ill, or incarcerated.
“Taking the medication is one thing, and it’s not hard on their bodies,” said Katie Burk, the viral hepatitis coordinator at the city’s public health department. “But getting them there, and through the hoops they need to get through, that takes a lot of work.”
“People are still getting infected with hepatitis C,” she added. “But what we need to do is outpace infection rates with treatments. If we start every year curing more people than are getting infected, then you can turn that curve around.”
San Francisco’s campaign — called End Hep C SF — is the result of an alliance among health officials, hospitals, advocates, and clinicians to cobble together funding, coordinate care, and combat the stigma of a disease associated with prison, drug use, and unsafe sex.
Organizers acknowledge that even if they somehow eradicated hepatitis C in the city, the virus would reappear. But the campaign still aims to dramatically reduce the city’s disease burden — and to become a model for what elimination would require elsewhere.
The effort starts with patients like Bill, whose case reflects both the potential of End Hep C SF and the challenges.
A homeless man who said he sometimes injects drugs, Bill was sick with hepatitis C for years but never got treated. That changed earlier this year, when his methadone clinic, which previously didn’t treat hepatitis C, found a way to get him the therapy.
And yet Bill, who did not give his last name, said his backpack was stolen with a week’s worth of pills during the 12-week course of treatment. Twice.
“People are always stealing my stuff,” said Bill, 50, who was using a golf iron as a cane and wore a dark green ball cap with a bedazzled skull.
The bulk of hepatitis C patients are baby boomers, many of whom were infected before the blood supply was screened for the virus. But infection rates, driven by the country’s opioid epidemic, are rising fastest among young people, contributing to more than 19,000 annual hepatitis C-related deaths in the US in recent years. (The virus can remain asymptomatic for years, so health officials believe documented cases and deaths are just a portion of the toll of the virus.)
From 2007 to 2015 in California, infection rates increased by 55 percent among men in their 20s and by 37 percent among women in their 20s. In San Francisco, it’s estimated that about two-thirds of the more than 12,000 patients inject drugs.
“We have the tools to fix it, but hep C numbers are going up,” Dr. Annie Luetkemeyer, an infectious disease doctor at University of California, San Francisco, who is involved with the campaign here. “That is really unacceptable.”
One reason, experts say, is because the disease is not a priority. A National Academies panel that recently looked at the feasibility of eliminating hepatitis C held congressional briefings when it released its reports, and almost no one showed up, said Dr. Brian Strom, who chaired the panel.
“Congress cares little enough about this disease that they didn’t even send their staffs,” said Strom, the chancellor of biomedical and health sciences at Rutgers.
Some places are making treatment and prevention a priority. States including New York and Rhode Island have developed strategic plans, and the Department of Veterans Affairs, with a funding boost from Congress, has moved to treat all veterans, curing tens of thousands already.
In San Francisco, the funding for the campaign has been patched together from state grants and local sources; Burk estimated the budget is about $700,000 a year.
“We have the tools to fix it, but hep C numbers are going up. That is really unacceptable.”
Dr. Annie Luetkemeyer, UCSF
The money has funded work by community organizations like Glide, which runs a harm reduction center — including a syringe exchange — in the city’s Tenderloin neighborhood. New patient navigators facilitate testing in homeless encampments and single-room-occupancy hotels and help link people who test positive to doctors. So far, they have tripled the number of hepatitis C tests Glide is able to conduct each month.
“The hardest thing is when people are not housed,” said Janelle Silvis, one of the navigators. Many homeless people have no problems taking medication, but for others, she said, “that lack of stability makes it really hard to remember to take a pill every day. And like, ‘Where’s my stuff? Can I even hold onto my stuff?’”
Health workers also have to convince young, otherwise healthy people with the virus to pursue treatment to begin with. They don’t always recognize the damage the virus is slowly doing to their livers — what Paul Harkin, who helps run harm reduction at Glide, called “the ticking time bomb of hep C.”
Doctors who treat hepatitis C said some patients report feeling less fatigued after being cured of the virus, though they acknowledge that might be placebo effect. By getting cured, many people also seem more willing to address other issues, whether it’s starting treatment for a substance use disorder or finding housing.
David Matisi, 62, was cured earlier this year after contracting the virus decades ago while in prison, either from injecting drugs or getting a tattoo with a dirty needle, he said. He hasn’t used drugs for almost a year, and he said that being rid of the virus will help him stay clean. He’s now turned into an advocate to support others getting treated.
“I want to help others having a hard time or who need help — I can do that,” Matisi said.
Matisi had tried to get the new treatments before, but said his insurer rejected the request because he didn’t have severe enough liver scarring yet — an example of the denials that still occur even as the cost of the drugs has come down. He eventually switched his insurance and came to a clinic called Tenderloin Health Services upstairs from Glide. He said it was the rare time when he felt treated as a normal patient, and he was able to get the medication.
At other places, he said, “You’re kind of afraid to tell them, ‘I use heroin.’ You think they’re not going to look at you like a human and they’re going to blame your for your health problems.”
That is a sentiment shared by people who use drugs, advocates say, which is why it’s so important for outreach efforts to meet them where they are.
Those places include the 6th Street Harm Reduction Center, where clients come to get clean syringes. In recent months, they have also been able to meet with a nurse practitioner who can prescribe hepatitis C medications. The center has also installed lockers so clients can store their medication.
“The only thing they do with regularity is go to the needle exchange,” said Pauli Gray of the San Francisco AIDS Foundation, which runs the center. “People come to us because they’re treated like dirt everywhere else.”
The local campaign is possible only because of changes at the federal and state level. The Affordable Care Act, including the expansion of Medicaid, extended health coverage to many more Californians. State lawmakers have approved funding for hepatitis C efforts. And the state’s Medicaid program, known as Medi-Cal, changed its treatment guidelines.
Some state Medicaid programs require people to be sober for several months, to get a prescription from a specialist, and to have a certain level of liver damage before being approved for treatment — rules designed to reduce the likelihood that the treatment fails and the chances that a patient gets cured and then reinfected, as well as to avoid draining budgets.
Starting in July 2015, however, California shifted its Medicaid policies, aiming to reach “active injection drug users,” as well as men who have sex with men, another group with disproportionate infection rates. The goal is to treat people most likely to spread the virus and thus prevent new cases.
People in high-risk groups who are cured face about a 10 percent chance of being reinfected within five years, according to some studies. Officials with End Hep C SF are hoping to limit such cases by educating patients about safe sex and by teaching them how long hepatitis C — a particularly hearty virus — can live on a crack pipe or needle.
Spending public money to cure people who use drugs and who get reinfected can generate political backlash. But public health experts say that elimination initiatives have to tolerate some reinfections. That’s how you know you’re targeting the people most likely to spread the disease, they say.
“A lot of us believe that if you don’t see reinfection, you’re treating the wrong people,” said Shruti Mehta, an epidemiologist at Johns Hopkins, who was on the National Academies panel. “Like, it’s going to happen.”
A key part of End Hep C SF has been expanding the number of clinicians who treat the disease. Many primary care physicians still balk at prescribing the new medications, in part because of the specter of the old therapies, which were not very effective and came with atrocious side effects.
But now, family medicine and internal medicine residents at UCSF and Zuckerberg San Francisco General Hospital are being trained to treat hepatitis C. Last year, the city’s public health department opened an e-referral platform so primary care physicians in its network can send their patients’ information to a team that then selects which drug to prescribe, based on insurance coverage, the strain of hepatitis C infection, and what other health conditions are present.
Since February 2016, more than 400 patients have been treated in the health department’s primary care network, said Dr. Kelly Eagen, a primary care physician.
“Not that we’re busting through everybody quickly, but we’re making steady progress,” Eagen said.
Because much of the funding for the initiative has come from grants, it’s possible San Francisco won’t be able to keep up its full efforts.
At San Francisco General, the funding has enabled the methadone clinic to hire nurses who manage a hepatitis C program in which patients are evaluated at the clinic and receive their daily pill when they get their methadone dose. But the funding only lasts through June.
Paulette Walton, a nurse who helps run the program, said once patients are diagnosed, she sorts out what kind of insurance they have and if they qualify for a clinical trial. She spends much of her time teaching them about reinfection and ensuring patients keep up with the medication.
“When they go to jail, we coordinate with the jail,” said Walton, who has a small chalkboard propped up in her office that reads “Happy Day.” “When they go to the hospital, we coordinate with the hospital.”
(Patients who have started the regimen can keep taking their medication if they go to jail, but few patients in San Francisco or around the country start treatment while incarcerated.)
The program has helped treat more than 100 patients at the clinic in just over a year. Of the people who completed treatment, there have been two failures and three reinfections, said Dr. Soraya Azari, a primary care physician who sees patients at the methadone clinic.
Bill, the patient who had his backpack stolen, was treated as part of a trial looking at ways to improve medication adherence among people who inject drugs. He was able to get his lost medicine replaced and finish his regimen, but still has to wait a few weeks before a final test will determine if he was cured.
Patients who are cured at the methadone clinic receive a medal. It’s a small token, but it’s to show them they have accomplished something, and that they should not let the stigma that comes with the disease color their view of themselves, Azari said.
“Some people have internalized that shame and guilt, which is so sad,” Azari said. “To erase this disease that came with injecting, it gives people this new self-confidence, this new self-worth, that they are not just their drug use.”
My husband and I had hep c while back. Now it’s clear. I don’t understand why these folks don’t get access to the meds. We should follow the Japanese system, where the meds are subsidized. I don’t think it should matter one way or the other. People should be able to buy the meds out of pocket for a $1000, that’s fair. When we had hepc it was really tough for us to get the meds. Insurance denied us, it was awful. Then our doctor suggested a non profit, soulofhealing.org and their partner sunnypharma.info. We did our test after 12 weeks , we were cured. We tested again after 6 and 12 months, still cleared the virus. It was a big deal for us. I think California needs to step up and get these folks their meds otherwise it will be a bigger disaster in the future.
No one shows up cause treating chronic drug abusers is a was of resources. They just go out and get reinfected. They caught a deadly disease because of their own poor judgement. Just like giving a new liver to an alcoholic.
Benji, do you have data to support your assertion that “they just go out and get reinfected”? Or are you relying on your own poor judgement?
The information was mind-boggling about Hepatitis C, and the direction it is heading in. At one time it was for baby boomer, now the young is being infected at a growing/ alarming rate.
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