Cingles Info

Harnessing Hep C
Activists want the government to increase treatment funding and the public
to get better informed about the risks.
BY MITCH E. PERRY
An outbreak of Hepatitis A in Polk County earlier this year killed a
29-year-old woman. More than 100 others were stricken. Health officials
linked her death to a worker infected with the virus at a Bartow restaurant
where the victim ate and where five other diners also got infected.
Florida Department of Health Secretary John O. Agwunobi says that the Polk
story highlights that "hepatitis is a significant public health concern."
But what Tampa Bay area residents need to know is that the A-strain is not
the most virulent in Florida right now.
Hepatitis C is. It has infected an estimated 270,000 Floridians and
3.9-million nationwide. Those numbers are expected to grow in the next
decade.
Hep C is a blood-borne virus that was first identified in 1989. Like all
forms of hepatitis, it causes inflammation of the liver, which can lead to a
decrease in the liver's ability to function. If it's diagnosed quickly
enough, the odds increase that it can be successfully treated. But because
it can remain dormant for years, most people don't know they've been
infected until the virus has already done a number on their liver.
A May 11 rally in St. Petersburg brought out more than 60 hepatitis virus
carriers and their supporters. They walked the downtown streets to warn
people about the virus and to pressure government to spend more on finding
efficient drugs to treat it.
Although the virus was discovered 13 years ago, a confluence of factors has
led to its current surge.
In March, Newsweek magazine devoted a cover story to the virus. Within the
next decade, the magazine reported, Hep C will kill more Americans than
AIDS. In the past few years, more people have become sick enough to go to a
doctor - in many cases, for the first time - and discover that they
contracted the virus as far back as 30 years ago.
You can get Hep C only from bad blood. That means if you had something as
seemingly medically safe as a blood transfusion before July 1992, you could
easily have been exposed.
Such was the case for St. Petersburg resident Debbie Barnes. She says she
now knows she became infected in 1977, when her appendix burst and she was
given a blood transfusion.
Barnes wasn't diagnosed with Hep C until 1995. During the '80s, she
remembers having powerful bouts of fatigue, one of Hep C's chief symptoms,
and not knowing why. After frequently calling in sick, she lost her job.
Barnes ultimately received a liver transplant, which becomes the only option
when the liver is on the verge of total collapse.
Another source of transmission is shared needles. Health care workers who
work with needles have become infected, as have others who have shot heroin,
whether experimentally or regularly, using intravenous methods.
Steve Kersker, another St. Petersburg resident, says he knows that's how he
got the disease, sometime back in the late '70s before he kicked his habit.
The homeless advocate is now using his Hep C experiences to try to jumpstart
a movement to get government to do more.
Kersker was diagnosed with Hep C in 1989 but did nothing. A fitness freak,
he soon began feeling tired. That forced him to cut back his workouts. He
said his thinking got "blurry."
Finally, in January, Kersker was told that his liver was severely impaired
and he would need immediate treatment. But he was terrified about taking
Interferon, the only FDA-approved treatment, which is usually taken in
combination with Ribarivin. Kersker heard horror stories about side effects.
Ultimately, Kersker opted for the treatment. Because he is a Vietnam
veteran, the U.S. Department of Veterans Affairs foots the bill. (The cost
of Interferon combinations range from $25,000 to $40,000.)
Kersker says he's doing pretty well so far. He's energetic enough to start
the movement to get state and federal agencies involved. "We need to find
medications that are more effective," he said.
Since 1999, the state has spent more than $9-million on the three strains of
hepatitis, A, B and C. That money has mostly been spent on a statewide
Hepatitis C hotline (1-866-FLA-HEPC), vaccines for Hep A and B, free tests
for Hep A and C for those at increased risk, and a comprehensive program in
six counties, including Pinellas and Polk.
But Kersker wants the state to do a lot more. He's working with officials to
come up with legislation. "Hep C treatment is like where AIDS was at in
1985," Kersker said.
In the federal budget, $101-million is to be allotted to Hep C research in
2003, up from $88-million. A march on the office of U.S. Rep. C.W. Bill
Young (R-Largo) in February prompted an aide, George Cretekos, to meet with
protesters. Kersker said he wanted $500-million for Hep C.
Cretekos told Kersker and the media: "Sometimes picking a number out of the
air and giving it to (doctors and scientists) doesn't mean they're equipped
to do that kind of research."
Another Hep C carrier angry at the lack of government funding is Rick
Wallace. "Right now, we get less than 1 percent of funding compared to
HIV/AIDS, but we have four times as many people on this virus," said
Wallace, who lives in St. Petersburg.
Pinellas is one of six Florida counties with free screening. The federal
Centers for Disease Control and Prevention chose the county to receive
additional funding for acute hepatitis cases.
Julia Gill, Pinellas epidemiology program manager, says county health
officials are trying to raise awareness among physicians. "The general
mindset has been, "OK, you've got HCV, don't worry about it. When you have
symptoms, we'll deal with it,'" said Gill.
Gill says that's the wrong approach. Treating Hep C early - and
aggressively - increases the chances for recovery.
Many at the rally were members of the Tampa Bay Hepatitis and Liver Disease
Support Group. The organization holds monthly meetings to discuss what's
happening with the virus, occasionally bringing in a nutritionist or other h
ealth official.
Dale Vauiso started the group eight years ago after her husband had a liver
transplant. She says the group has become a hub where people with the virus
can calm those who just learned they have it. "You can read all types of
articles, but having a face-to-face with somebody having the same thing you
have, to know you're not alone, is important," said
Vauiso.
Like everybody at the rally, she urges people to get tested.
"Liver disease is a silent disease," said Vauiso. "You don't know you're
sick until you're very sick. That's why you should be tested."
There are a lot of Hep C carriers who to this day have no idea how they
contracted the disease. But what about the thousands out there that public
health officials say are carrying the disease and don't know it?
The data are contradictory. There have been divergent studies about whether
getting a tattoo creates a risk. There are other statistics showing Vietnam
vets make up an unusually large percentage of the infected population - but
the reasons are yet to be documented.
And though very few cases have been reported, infection through cocaine use
is possible. The CDC cites a report saying the strength of the association
between intranasal cocaine use and Hep C infection "does not support routine
testing based solely on this risk factor."
Still wondering if you might be among the legions that don't know they have
Hep C? If you're uncertain, the only way to calm your anxiety is to take a
blood test.
Contact Mitch E. Perry, assistant news director at WMNF-88.5 FM, at
mitch@....