Weekly Cover Story 7/02/02
from the New
Orleans Gambit Weekly
Test for Life
Raising a cry against hepatitis C
By Kandace Power
to Wail founder Timothea works tirelessly to bring information
and medical services to people infected with hepatitis C.
Local singer Timothea doesn't know exactly when she contracted
hepatitis C. She suspects it was during her younger years when
she injected street drugs. But it's equally likely it entered
her system through blood products she received in transfusions
during two cesarean sections and a hysterectomy. She remembers
vividly, however, the incident that led to a positive diagnosis
and has worked tirelessly every since to help others affected
by the liver disease.
"I was working
in Florida and came home for a visit," she remembers. "I
went to the Maple Leaf bar to sit in with Rockin' Dopsie and
was outside on a break when I saw (musician) Walter Washington,
who is a friend of mine. He grabbed me around the waist and
tucked me under his arm. It really hurt; I thought he had cracked
The pain persisted
and Timothea went to the doctor for an X-ray, which showed no
damage to her bones. The doctor took additional tests and the
singer went home.
"Then I got
the phone call and the positive diagnosis," she says. "The
pain had not come from my ribs, but from a swollen liver. That
was a blessing for him to pick me up that night."
The hepatitis C virus
(HCV) attacks the liver and can lead to cirrhosis, liver cancer
and organ failure. The Centers for Disease Control reports hepatitis
C is a major cause of liver transplants in the United States,
accounting for about 1,000 transplants a year. As many as 4
million Americans of all ages, and some 180 million people worldwide,
are infected with hepatitis C, but because the blood-borne virus
can remain in the body for literally decades before producing
visible symptoms, many people don't realize they are infected
and may even spread it unknowingly.
Timothea, now 51,
was diagnosed three years ago but believes she may have been
infected when she was as young as 18. "I was using (needles
to inject) drugs back then ... heroin and other things,"
she says. "But you don't get it just from sharing needles.
You also can get it from snorting cocaine and sharing the straw
with someone who has the virus." Recreational drug use
isn't the only means of transmitting the virus. Because there
was no test to detect HCV before 1992, people who received transfusions,
organ transplants, hemodialysis and blood products before that
year are at risk, as are military personnel, health-care workers,
and children born to hepatitis C-positive women. It also can
be spread through body piercing and tattooing, sharing shaving
razors or toothbrushes, even sex, although the CDC says that
doesn't happen very often.
The prevalence of
hepatitis C and the fact that no vaccine has been developed
to prevent the disease has caused alarm in the health community
and has spawned public education campaigns aimed at having at-risk
populations tested. The problem is that it is a disease that
can build itself up in the body silently and still carries that
stigma of being predominantly associated with illicit drug use.
does still exist," Timothea says, who experienced it first
hand. About the time she was diagnosed, the singer was hired
as a regular singer at a nightclub in Florida and was moved
to that state by her employer. Because her custom had been to
enjoy a couple of glasses of wine after her performances, a
curious bartender kept inquiring as to why she no longer drank
alcohol. She finally told him she had hepatitis C, and the next
day she was fired.
"A lot of people
still believe you can get hepatitis C from casual contact; they're
afraid," she says. "It's the same stigma that used
to be attached to AIDS. We need to break that stigma."
To that end and with
an eye toward helping those who have the disease or are at risk,
Timothea founded Siren to Wail to raise money to help distribute
information about hepatitis C and how to navigate the medical
system. The now-national non-profit organization staffs a 24-hour
hot line (891-4164 or toll free 866-891-4164), initiated a support
group that starts today, provides low-cost HCV testing, counseling,
medical referrals and stages awareness and outreach activities.
Timothea's ultimate dream, however, is to set up a HCV clinic
where all the services from testing to counseling are available
under one roof.
"It's in the
works; I'm looking for a place, gathering the doctors and looking
for commitments," she says.
Another part of her
mission is to disseminate information by lecturing at schools
and to other groups.
is just as important as testing people," she says. "If
they're going to get tattoos or piercing or other things, then
we need to teach them what to look for in the beauty salons
and tattoo parlors. Another part of my message is not to be
ashamed, that it's a blood-borne disease and the ways you can
get it, and that you should get checked."
The number of cases
of hepatitis C has caused grave concern in the medical community
and led former U.S. Surgeon General Dr. C. Everett Koop to release
a public warning addressing the problem. Calling it "one
of the most significant preventable and treatable public health
problems facing our nation today," Koop called on individuals
at risk to have themselves tested and spread the word to others.
"Hepatitis C already infects three times more people than
does AIDS," Koop wrote. "It is responsible for more
than one-third of all liver transplants. And by the turn of
the century, it will kill far more people than AIDS."
Dr. Robert Perrillo,
director of the Section of Gastroenterology and Hepatology at
Ochsner Clinic Foundation, takes a less doom-and-gloom view,
emphasizing that early detection and treatment are becoming
"We can cure
40 to 50 percent of the cases," says Perrillo, who was
honored along with the director of Ochsner's transplant center,
Dr. James Eason, for his work with hepatitis C at a recent Siren
to Wail gala. "If we can cause the virus to become non-detectable
in tests, the liver will stabilize. It's an eradication of the
virus as much as we can detect."
include the antiviral drug interferon and interferon combined
with ribavirin. The CDC reports that interferon alone works
in 10 to 20 out of 100 patients and the combination therapy
works in about 30 to 40 out of 100 patients. Side effects include
flu-like symptoms early in treatment such as fever, muscle aches,
chills, headaches, heart palpitations. Those may lessen over
time, but later side effects can include tiredness, anemia,
hair loss, depression and trouble concentrating. More severe
side effects such as seizures, organ failure and hearing loss
are reported in about 2 percent of patients. One of the problems
with treatment, and a major obstacle to developing a vaccine,
is that HCV mutates freely, even within an infected person,
which allows it to evade the immune system and causing other
complications with therapy.
"There is no
one treatment that's right for everyone," Perrillo says.
"Each case needs to be judged on an individual bases. When
you do a liver biopsy and despite two to three decades of illness
their liver is functioning or if they're elderly, you may choose
to do nothing" in terms of drug therapy. Those patients
may better tolerate lifestyle changes such as a halt in alcohol
use, more attention to nutrition, avoid starting new, herbal
or over-the-counter drugs without talking with your doctor and
get vaccinated against other hepatitis genotypes, particularly
A and B. "Very seldom do you see people who reject treatment,"
the doctor says. "They're usually people who feel it will
be disruptive to their active lives."
For her part, Timothea
has chosen for forego interferon treatments and their side effects
and control her infection, which has caused cirrhosis of her
liver, through healthy living. "I don't recommend what
I do for everybody," says Timothea, who sings only three
nights a week now to reserve energy for Siren to Wail. "If
you take the medicine, it can keep it from getting worse. Some
people have been on it and cleared the virus. It's very individual
how it works."
Patients also should
stay in close touch with their doctors, as researchers learn
more about the disease and develop new therapies. "We're
making progress," Perrillo ensures. "The next phase
of drug therapy will be polymerase inhibitors (an enzyme HCV
uses to replicate itself), but it probably will only be used
in combination with interferon."
The disease is so
prevalent, Perrillo says, because although there is a steady
decline in new cases, health officials are seeing the end result
of cases people contracted in the '60s, '70s and '80s. The situation
will linger, he predicts, until there is a vaccine available.
"I don't think we'll ever eradicate the hepatitis C or
hepatitis B (another blood-borne form of the disease) in our
generation, even though we have the vaccine for hepatitis B
... because people don't accept they could be at risk."
Perrillo says. "We're less likely to be prevention-based
Both Timothea and
Perrillo, who plays guitar, sings and produces music CDs as
a hobby and for benefits, agree that there's a long haul ahead
in the fight to bring HCV under control. Timothea, a petite,
compact ball of energy, says she's pleased she can use her passion
for music to help promote public health education. As for her
own battle with hepatitis C, she remains focused.
"I feel good,"
she says. "But I drink a lot of water, eat a certain diet
and you've got to get exercise and take care of yourself. I
have some bad nights; a good attitude helps. I believe in God
and have him to look after me. He's led a lot of people to me,
and I don't think he'll let me go too soon."