The Epicenter of a Public Health Crisis

Even as awareness of hepatitis C grows, the scant resources devoted to its treatment are being slashed.

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.”

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