Gambit Weekly Cover Story 7/02/02
reprinted from the New Orleans Gambit Weekly

A Test for Life
Raising a cry against hepatitis C

By Kandace Power Graves

Siren 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 my ribs."

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.

"That stigma 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.

"Prevention 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 increasingly effective.

"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."

Standard treatments 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 than therapy-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."