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About one third of people living with HIV are also infected with hep C, a common coinfection. Both are transmitted by blood and disproportionately affect African Americans. Providers addressing hep C have often had to ride the coattails of HIV's recognition as an attention-worthy disease. The victims of hepatitis C, Chavez said, are "not well equipped to advocate for themselves."
This year, California cut an unprecedented amount of funding for harm-reduction services, including the grants which account for up to 90 percent of funds for Bay Area needle exchanges. Since about 90 percent of local injection drug users are believed to use these clean-needle sites, which also test for HIV and hep C, this action will likely increase viral transmission while decreasing the number of people who are tested for or even made aware of hep C.
But HCV can be addressed with simple public health strategies. That's why it's so frustrating for professionals such as Sylvestre. "There's almost no access to testing and education, no state funding, and very little federal funding for hep C," she said. An OASIS study detected more cases of hepatitis C than all the other sexually transmitted diseases combined. Sylvestre will be meeting with the State Department of Public Health next month to discuss her data. So far, she said, "We've never gotten a dime from the state. They just haven't gotten the message, and so this state is really behind the times."
In a way, the situation echoes the national health care crisis: Outreach, prevention, and education cost the system a fraction of what treatment costs, but while treatment is deemed necessary — you can't turn sick people away from the emergency room — education and prevention are treated as disposable when it's time to cut budgets. The prevalence of HCV has an economic impact on the health care system, but it's clouded by a lack of national discussion. Indeed, the strategies used to prevent the spread of HCV also work to decrease drug overdoses, crime and incarceration costs, ambulances rides, emergency room visits, and law enforcement resources. The outreach and support provided through the OASIS clinic transforms the communities in which HCV persists the most — the poor and addicted.
Orlando Chavez remembers experiencing mysterious symptoms. He was so fatigued he'd fall asleep next to his coffee cup at the Merritt Bakery. "They would kick me out, thinking I was a junkie," he said. "But I wasn't even high." He experienced sporadic aches and pains and bruised easily. When fluid built up in his foot, making it swell painfully, emergency room doctors told him it was cellulitis. It was only when he was in line at the Richmond methadone clinic, trying to beat a thirty-year heroin habit, that he heard about hepatitis C. Shortly after finding out he had it, Chavez found himself with advanced decompensated cirrhosis — an irreversible scarring of the liver that precedes liver failure. "It's almost unheard of to treat a liver in that stage," Chavez said. "I was lucky to even get a referral."
A new clinic had opened, one specifically targeting hepatitis C and drug addiction. Sylvestre and others founded OASIS, the Organization to Achieve Solutions in Substance Abuse, in 1999 as a medical provider for underserved populations engaging complex problems like addiction, mental illness, and hep C and HIV. When asked how OASIS came to minister to hep C, Sylvestre answered, "No one else would do it."
Sylvestre requires patients to attend group meetings before beginning treatment. "I don't just give out prescriptions for treatment, I make you come to group. [Interferon] is chemotherapy. It's a big deal, and you need to know what you're getting into."
Interferon is an aggressive drug regimen that makes for an ill year for the patient; people taking it often experience severe depression and extended flu-like fatigue. That's why peer support is essential. At OASIS, the hope is that after someone gets successfully treated they will "shed some light" on the virus for others. Chavez underwent eleven months of therapy. With the help of his peers, Chavez cleared the virus in 2001 and it hasn't come back. Now he co-chairs the Tuesday group meeting there.
The noontime support group includes people saved by Sylvestre and her staff. As the discussion moved around the circle, it was clear that treating HCV means treating addiction and educating people about the disease. Lunch is provided, followed by a practical science lesson. "People come for the lunch and stay for the information," said Sylvestre, noting that Chavez was so interested in the medical aspects that he became a veritable expert. Chavez, in turn, credits "the doc" with his turnaround. "She makes you keep coming back because if you're a quitter you're not going to make it," he said.
Between the 25 group attendees on hand on one recent Tuesday, the spectrum of hepatitis C stories revealed itself. John, a white man in his fifties, said he's "probably had hep C since high school." Some were there to stay sober. Some stories were still evolving, like a preacherly anemic man in a wheelchair awaiting a liver transplant. "I pray for everything to be right," he said. "But I got one thing right — I ain't using dope no more."
Larry Galindo, a Marine veteran and counselor at OASIS, chairs the discussions. He usually opens the meeting with his own story: "I got treated and cleared the virus, then it came back. But I'm not calling 911 — I'll die of something else before I die of hep C."