- Here are the stories of two individuals in Denver, Colorado,
living with hepatitis C. Their personal efforts are providing support for
the other 5.69 million Americans estimated to have the disease. (Many
feel this is a seriously conservative figure -ed)
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- Known as the Silent Killer, hepatitis C is a debilitating
and potentially deadly virus that can reside, undetected, in the liver
for decades.
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- For more details and statistics about the disease - the
effects, treatment, transmission - please go to the Hep C Connection MEDIA
CENTER: www.hepc-connection.org/awareness.html. Additional contact information
is included at the end of each profile.
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- The Face Of hepatitis C - Pete Mazula
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- Fiery Firefighter Battles Hepatitis C, Workers' Compensation
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- Denver area firefighter Peter Mazula, 48, has made a
living extinguishing flames for 29 years. Now, he's fanning fires of a
different kind.
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- A decade ago, he learned that he had contracted hepatitis
C while helping an accident victim in 1988. Denied Workers' Compensation
coverage, he went to court and ultimately was denied again. So, he decided
to take his cause to another branch of government.
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- Mazula is on the verge of winning Workers, Compensation
coverage for public safety workers contracting hepatitis C in the line
of duty. Subject to the signature of Colorado Gov. Bill Owens, SB-06 is
set to become Colorado law, due in part to Mazula's impassioned testimony
before both the Colorado Senate and the House, and letters written to every
member of the House.
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- In a surprising move, the Republican-controlled Colorado
House passed the measure unanimously. It also breezed through the Democratic-controlled
Senate with a better than two to one margin. Upon passage, it will join
Workers' Compensation hepatitis C laws in nine other states. An additional
nine states have similar legislation pending.
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- SB-06 is better than other measures, Mazula said. "This
law will be better in two major areas. First, once it is documented that
a public safety worker has been exposed to the virus, medication can begin
immediately. In some other states, you have to wait until you actually
test positive for the disease. Second, there's a two-year window to help
those who may already have been affected. As long as it is determined conclusively
that the worker was exposed on the job, Workers' Compensation benefits
will be in force," Mazula said.
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- But that doesn't help Mazula. Now awaiting a liver transplant
to relieve the disease that is ravaging his body, Mazula is understandably
bitter about the toll hepatitis C, and subsequent denial of Workers, Compensation
benefits, has taken on his family. His health insurance and fire department
contributions supplement money out of his own pocket to cover his care.
"Workers' Compensation should have been there. That's what it's supposed
to cover," Mazula added.
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- "Pete's efforts not only will provide a much-deserved
safety net for Colorado public safety workers, but will help build impetus
in other states for similar legislation," said Ann Jesse, executive
director of the Hep C Connection, a national hepatitis C support organization
based in Denver. Jesse, a hepatitis C survivor who has worked with Mazula
to help pass the legislation, added, "He's an inspiration to those
of us on the front lines fighting this disease day in and day out."
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- Mazula's nightmare began at a gruesome motorcycle accident
in 1988. "There was blood everywhere. I wore rubber gloves but it
was evening, and there was little light. I sliced my hand open on something,
a piece of steel or glass, I don't know."
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- Four years later, he discovered he had hepatitis C. Denied
coverage by Workers, Compensation for lack of proof, he went to court and
won the first round. Workers' Compensation appealed and, ultimately, Mazula
lost his court fight. "The only thing they said about why it was denied
is that when I went to the emergency room back in 1988, the nurse there
told me the accident victim had track marks on his arms - an obvious warning
signal to be on alert for hepatitis C. The appellate court threw out the
case citing this evidence as 'hearsay.' Essentially, I got denied on a
technicality," Mazula noted.
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- The good news for Mazula is a brighter outlook for other
public safety workers exposed to the disease and his ability to serve as
an educator. "If the accident had happened today, I would have gotten
treatment sooner. Immediate treatment would have helped. I probably wouldn't
need a liver transplant. And if I had found back then the kind of support
provided by such organizations as the Hep C Connection, I could have managed
my condition - and its emotional impact on my family, co-workers and friends
- much more effectively."
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- Today's improving treatments would be part of a healthier
equation, Mazula said he believes. "The sooner you get in, the better
your outcome," he added.
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- Mazula pointed out that he's been able to teach people
in the fire department about hepatitis C, and, "My testimony before
the Colorado Legislature opened up some eyes as well."
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- For now, Mazula has been taken off firefighting calls.
He's a deputy fire marshal, handling building inspections and code enforcement.
Unable to tolerate the side effects of full-blown antiviral treatments,
he takes about a quarter-dose of Interferon. It's enough to stabilize his
condition, but ultimately he has no doubt that he will need a new liver.
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- "I have cirrhosis, advanced liver fibrosis, but
so far no signs of liver cancer. I'm on the liver transplant list. My wife,
daughter and I talk about it. It's hard for everybody, just waiting and
knowing it's going to happen." And waiting is proving very tiring,
literally. "I get fatigued really easily as a result of both the disease
and the medication. I'm just not me most of the time. But the department's
been great, with guys giving me their comp time and sick time to help out."
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- Having both won and lost battles in his hepatitis C fight,
Peter Mazula still faces the greatest battle of all - the one for his life.
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- Hepatitis C may affect up to 1 in every 50 Americans,
according to statistics provided by the National Institutes of Health.
Half likely do not even know they have the disease, which is killing 8,000
to 10,000 people annually in the US; and is the leading cause of liver
disease and liver transplants. For more information about Hepatitis C Education
Awareness Month or the Hep C Connection, contact: 1-800-522-HEPC (4372);
303-860-0800. For more information about hepatitis C, contact the Hepatitis
Help Line: 1-800-390-1202. Or, visit the Hep C Connection online: www.hepc-connection.org,
info@hepc-connection.org.
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- The Face Of hepatitis C - Ann Jesse
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- Ann Jesse Tackles Hepatitis C With A Vengeance
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- Q: What club with more than 4 million members nationwide
considers its own extinction its ultimate goal?
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- A: Denver-based Hep C Connection, the nation's leading
hepatitis C support network.
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- Hepatitis C, identified in 1992, afflicts roughly three
times as many Americans as HIV, the virus that causes AIDS. Yet more than
half of those infected by hepatitis C are unaware they are ill.
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- And, while educational efforts have been fragmented,
misinformation about the disease has run rampant.
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- That's changing for the better thanks largely to the
efforts of Denver's Ann Jesse, 64, and her nearly 5-year-old Hep C Connection
- a hepatitis C network and support system. Now, from the halls of Congress
to the corridors of the Centers for Disease Control in Atlanta, Jesse's
message is being heard loud and clear.
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- One sign of that: Hep C Connection's pivotal role in
the new statewide public education/free testing campaign.
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- "She's been a champion; she's been great,"
said Dr. Richard Hoffman, Colorado Department of Public Health and Environment
chief medical officer and state epidemiologist. "She's made (awareness)
grow quite a bit in the past three or four years, setting up a network
of Hep C Connection support groups across the country. It's been very effective
in dealing with the problem of denial."
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- Hep C Connection remains the nation's only major hepatitis
C-focused support network. Jesse wanted to help others avoid the nightmare
that started for her when a physician left her a voice-mail message that
she had tested positive for the disease.
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- Jesse had gone in for a routine checkup following the
sudden death of her brother. A liver ALT reading of 585 (40 is the top
end of normal) started Jesse's quest.
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- "I was informed by my internist - via impersonal
voice mail communiqué - that I had tested positive for hepatitis
C. He urged me to return for more tests and warned my husband to use condoms,"
Jesse said in 1998 testimony before the U.S. House of Representatives.
"This was by no means an optimum way to be informed that I was infected
with a chronic, incurable liver disease."
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- Jesse later discovered that hepatitis C is almost exclusively
blood borne, and sexual transmission is rare. Hepatitis C often doesn't
reveal symptoms - high liver enzymes, acute fatigue, aching joints and
eye disorders - for years. Those at high risk include patients receiving
blood transfusions before 1992, when screening for the disease began, and
illegal drug users. Jesse herself spent nearly a quarter-century oblivious
to her own hepatitis C infection, which had resulted from a 1973 transfusion.
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- Untreated, the hepatitis C virus can lead to cirrhosis,
liver failure and liver cancer. It is now the leading cause of liver transplantation
in this country, surpassing alcoholism, and kills more than 8,000 annually.
In the '90s, 30,681 Coloradans were infected, according to Hoffman, and
another 30,000 to 40,000 are sick and don,t know it.
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- Still, researchers have made great strides in treating
and even eradicating the disease. Jesse herself has been disease-free for
two years. "Forty percent of the people are clearing the virus, with
no sign of it in the system," she said.
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- Jesse single-handedly has changed the course of hepatitis
C education and treatment. For more information, call the Hep C Connection
303-860-0800 (1-800-522-HEPC); visit the website: www.hepc-connection.org;
or e-mail: [info@hepc-connection.org].
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- MEDIA CONTACTS
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- Hep C Connection Ann Jesse, Executive Director Regina
Schuler, Assistant Director Kathy Jensen, Director, Information and Community
Outreach 1-800-522-HEPC (4372) 303-860-0800 info@hepc-connection.org
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- Mark Lusky Communications Lyn Wazny, 303-424-0210 Heather
Lusky/Mark Lusky, 1-800-238-3612; 303-321-2911
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