Hepatitis C crept silently into Jane McLamb's life, draining her
of energy and motivation for years until tests finally spotted the
sometimes-fatal liver disease. Still, seven more years would pass
before anyone suggested treatment to the Rumford woman.
"My doctor said 'It's not a bad thing, you know,"' recalled
McLamb, 46.
Times change. Since her 1990 diagnosis, hepatitis C has morphed
from a little-known disease into the country's most common
blood-borne infection and the top reason for liver transplants.
Most of today's patients contracted hepatitis C decades ago -
largely from sharing intravenous needles, contaminated blood
transfusions and, to a far lesser degree, unprotected sex and
unsanitary tattooing - and are only now showing symptoms. Health
experts now are urging timely screening, and for some people,
treatment with an aggressive and increasingly successful combination
of drugs.
In Maine - where an estimated 20,000 to 23,000 people are
infected - an official and grass-roots response is fast mounting
against a disease that was nameless before 1988.
Norm Burnell, an information technology manager from Lewiston who
thinks he was exposed to hepatitis C as a medic in the Vietnam War,
is advocating for patients on his Web site
www.hepatitiscnme.org.
"It's time for someone to come out and for people to understand
that over 4 million Americans are infected with this virus and it's
a big epidemic, " said Burnell, 54. "We need to get a money chain to
help with the treatment and education and diagnoses."
The fight against hepatitis C is being waged on multiple fronts.
Maine's Bureau of Health hopes to unveil in May a statewide action
plan to combat viral liver diseases - hepatitis C being the most
common. The plan would be much like the one that was developed for
HIV, the virus that similarly ambushed the country in the 1980s.
Education will be heavily stressed. Although the number of new
infections dropped after better blood tests became available in
1992, and AIDS activists warned against needle sharing, new cases
continue to arise.
"We still get cases of people who are often young, in their early
20s, who have been sharing needles," said Geoff Beckett, assistant
state epidemiologist.
On a local level, the Portland Department of Health and Human
Services is running hepatitis C awareness radio spots it developed
with the state, and two months ago broadened its free testing
program to include inmates at the Cumberland County Jail.
One of the most ambitious initiatives started last spring when
the state's largest hospital, Maine Medical Center in Portland,
introduced Maine's first hepatitis C clinic. Open two afternoons a
week, it's the only place where patients from across the state can
receive treatment, education and counseling in one spot.
McLamb is one of the clinic's 300-plus patients and makes the 1
1/2-hour drive to Portland each month for a check-up. After two
other treatment attempts failed, she is nearly finished with an
11-month regimen and hopes to be rid of an illness she believes she
got from her ex-husband, who abused intravenous drugs.
"I know some people would be afraid to find out," said McLamb, a
child behavioral specialist. "But what's the better way - to find
out years and years later when it's too late to be treated . . . or
do something about it while you can and get rid of it, if
possible."
Hepatitis C is not a death sentence. It progresses slowly in the
liver, the body's largest internal organ that is integral to
digestion, metabolism and detoxifying alcohol, drugs and other
substances harmful to the body.
Some infected individuals may lead a seemingly healthy life,
never knowing they have the disease. But up to 85 percent of people
will experience chronic illness and the constant fatigue that comes
with it, and as many as 20 percent may develop cirrhosis - or
scarring - of the liver, which can cause serious health
complications and lead to liver cancer, even death.
It's impossible to predict who falls into this category. That's
why medical experts urge at-risk individuals to be screened for
hepatitis C so that if they test positive, they can begin to monitor
the progression of the disease and cut out unhealthy behavior such
as drinking.
"Two or three drinks a day increases cirrhosis risks," said Dr.
Alan Kilby, the gastroenterologist at the hepatitis C clinic at
Maine Med. "If all they did was stop drinking, it would make a huge
difference."
For many patients, hepatitis C was a disease that happened to
other people.
Joelle Leeks, a sales representative from Cape Elizabeth,
received a huge blow last May when the American Red Cross wrote to
tell her that hepatitis C had been detected in blood she had
donated.
"I was pretty much shocked - I hadn't done anything to put myself
at risk," said Leeks, 36, who eventually pinpointed a blood
transfusion after a car accident in 1987.
She started to research treatment options and learned that they
weren't for everybody: a weekly shot of interferon plus daily doses
of the drug Ribavirin can leave patients feeling sick with the flu,
and often depressed. And a cure is not guaranteed: Only 40 to 50
percent of people get rid of the disease, although chances of
getting cured are greatly improved when dealing with weaker strains
of hepatitis C.
With these odds, some people put off treatment, especially if
they have other chronic diseases that pose a greater health risk at
the time, or if they don't have a support network to help them deal
with the drug's side effects.
While Leeks had experienced only minimal liver damage, she was
ready to take on the challenge of treatment. What she found to be
more difficult was dealing with the stigma around hepatitis C.
"My son's best friend was not allowed to come over to my house,"
Leeks said. "My son was absolutely mortified . . . It wasn't bad
enough we had to go through treatment; we had to go through that,
too."
It's the same kind of paranoia that dogged HIV and AIDS patients
two decades ago. While medical experts discourage hepatitis C
patients from sharing personal hygiene items such as toothbrushes,
nail clippers and razors, there is no evidence that the disease can
be contracted through hugging or kissing. Nor can it be spread by
coughing or sharing utensils or drinking glasses. There's no reason
for anybody to be excluded from work, play or child care.
To get the word out, a new generation of
patients-turned-advocates has emerged.
Leeks and other members of her support group are organizing a
grass-roots education campaign and hope one day to see a hotline for
primary care physicians who have questions for hepatitis C
specialists.
Liz Delano, a 50-year-old patient advocate and a paramedic from
Portland, has been giving lectures about living with hepatitis C to
others in her profession since she was diagnosed 1 1/2 years
ago.
"I'm pretty well-known in the EMS community," said Delano, who
thinks she may have contracted hepatitis C on the job. "So people
say, 'If Liz could have it, I could have it, too. "'
Patient advocates hope hepatitis C patients will enjoy the
extensive support network provided to the more than 1,200 people
living with HIV and AIDS in Maine. But they're discouraged by an
apparent dearth of funding for hepatitis C projects.
"There isn't money," Delano said. "A lot of us have gone on-line
looking for stuff. "
Resources for hepatitis C are scarce all around. Last year, the
state used $32,000 in federal block grants and $15,000 in private
funding from the Maine Health Access Foundation to provide free
hepatitis C testing at 22 sites around Maine. In addition, the
federal Centers for Disease Control provided about $110,000 to pay
for the state's viral hepatitis coordinator, as well as other
program activities.
In comparison, the state last year budgeted about $1.9 million in
federal and state funds for HIV prevention activities and about
$350,000 for sexually transmitted disease control and prevention.
Health care experts say funding may flow toward hepatitis C
efforts as more cases are diagnosed, and more research appears.
"The knowledge about hepatitis C has expanded," said Beckett, the
state's assistant epidemiologist. "Nobody knew what to do about it
early on, and that's changed very dramatically in the last five or
six years. "
McLamb wishes medical advances had come sooner - hepatitis C has
scarred and inflamed her liver - but now she's focused on getting
well.
"The fact that I'm on treatment makes me feel good," she said.
"And the fact that I could be virus-free makes me feel good."
Staff Writer Josie Huang can be contacted at 791-6364 or at:
jhuang@pressherald.com