Dr. Diana Sylvestre is not an alarmist. But when it comes to the hepatitis C virus (HCV) — the country's number one blood-borne pathogen — she says we are in the midst of a grave public health crisis with Oakland as an epicenter. And that's inexcusable, she believes, because hepatitis C can be beaten through treatment. Many of the infected experience no symptoms, and those requiring care have a good chance of clearing the virus with medication. But even as awareness of the problem has grown, the already-scant resources devoted to it have been slashed.
More than four million Americans have been exposed to the virus and nearly 3 million are thought to be chronically infected. Hepatitis C is the country's leading cause of liver failure and liver transplantation, accounting for about 12,000 deaths a year, according to the Centers for Disease Control and Prevention. Liver transplant lists are accumulating names at a startling rate, and donors can't keep up.
And yet, hepatitis C is growing in scope. "It's something that can lead to death and debility, and it's not being addressed," said Sylvestre, who encounters the virus on a regular basis at her Oakland-based OASIS clinic, which has detected more than 3,500 cases of hepatitis C since it began screening for it ten years ago.
In fact, hep C is several times more common than HIV, but awareness by health care professionals and citizens is strikingly low. Why? For one thing, a majority of hep C sufferers use intravenous drugs. Then again, about half the people infected don't even know they have it. Even among the afflicted, there is often a lack of urgency. "The word is on the street, you know, 'Everyone's got that shit; I don't have to do anything about it,'" Sylvestre lamented. "The truth is it can kill you, but it doesn't have to."
Interferon and ribavirin combination treatment, a form of chemotherapy, has proven successful in eliminating the virus in about half of those who take it. But getting patients to that stage is a huge obstacle. Inadequate access to health care is partly to blame, but so is the failure of doctors to recognize the need for testing. Highland Hospital, the default hospital for the poor and uninsured in Alameda County, hasn't offered treatment in several years. When the doctor running the internal clinic left, the hospital never hired someone else. Instead, doctors there refer patients sick with hep C to specialists like those connected with Sylvestre's clinic.
The virus lives in the liver. It's not HCV that destroys the body, but the immune system's reaction to it. If the immune system declares war on the liver, it can lead to cirrhosis or liver cancer. Persons with HIV are now more likely to die from hep C-related liver disease than any other condition. And alcohol accelerates liver damage and makes treatment ineffective. "Alcohol and hep C are like gasoline and fire," Sylvestre said.
Intravenous drugs are closely linked to the disease. According to people on the front lines, if you use intravenous drugs in Alameda County, you have a 97 percent chance of being exposed to the virus. "In most places, if a test turns up positive for HCV they confirm it with another test," Sylvestre said. "Here, if I get a negative test I go to confirm it. That's how unusual a negative test is."
While drug use is responsible for the majority of new cases, it's not merely a junkie disease. "People who say, 'Well, I don't use needles so I don't need to worry about it' are kidding themselves," she said. About one third of the roughly three million Americans infected with hep C acquired it in some other manner. Failure to implement strategies to stop the illness can risk a serious outbreak, even for people who don't use IV drugs and aren't in prison — it can be passed on by sharing a toothbrush or razor, or having unprotected sex.
"It's ridiculous to call it an addiction disease," Sylvestre said. "Before screening began in 1992, one in ten units of blood were infected. There were 200,000 cases a year back then, so there are a lot of people cruising around with hep C who got it through a blood transfusion." Studies estimate that 15 percent of people with the virus contracted it sexually — a large number when you consider the millions currently infected.
Prison populations are dense with hep C and hard to monitor. "Drug use is rampant in prisons," Sylvestre noted. "Who knows? Tattoos, sex, lots of things." These populations leave prison and bring it back to the street. And in the days before HCV screening began, people incarcerated for drug offenses were sometimes offered sentence reduction for blood donations.
The relative ignorance about this epidemic highlights the health-care discrepancies in poor neighborhoods. Poverty and substance abuse are linked inextricably in this country, and when a virus also is linked to drugs, clinical trials and a national campaign to stop it tend to take longer. "Addiction doesn't elicit much sympathy from the public," noted Orlando Chavez, a coordinator of HepTev, the Berkeley Free Clinic's Hepatitis Testing, Education, and Vaccination program. "Once HIV crossed over to the mainstream people paid attention, but hep C hasn't yet had that 'crossover effect.'"
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."
Almost everyone there becomes a cheerleader for Sylvestre. Chavez remembers his first year in the clinic: "I thought, 'She's there every day, you should be there, too.' I don't know of other doctors who spend their lunch hour educating drug addicts, people who everyone else has slammed the door on."