The rules are simple at Monday’s lunchtime hepatitis C support group in the Oasis Clinic: Only one person speaks at a time, people’s stories don’t leave the room, and you can’t have more than two slices of pizza.
Larry Gonzalez (not his real name), a former injection drug user, tells the group he’s nervous about his upcoming yearlong course of treatment for hepatitis C. “Some people breeze through the treatment and some people really struggle,” says Gonzalez. “But given my M.O., I’ll probably struggle a lot,” he says with a sheepish grin that draws chuckles from around the room.
Twenty people sit in a loose circle on tan folding chairs in the no-frills lobby of the clinic in downtown Oakland, California. They come together here at least once a week to talk of their experiences with a potentially deadly virus that has infected up to 3.9 million Americans, according to the Centers for Disease Control and Prevention. That’s about four times as many people as are currently infected with the HIV/AIDS virus in this country. Still, support groups for those with HIV are everywhere, while groups for hepatitis C sufferers remain scarce.
“There absolutely are not enough support groups for hepatitis C out there,” says Barry Clements, a physician’s assistant who served as medical director of the Oasis Clinic at the time of my visit. Perhaps, he says, support groups are hard to find because hepatitis C is still largely a silent epidemic. Or maybe, he suggests, it’s because of the lingering prejudice against the disease’s sufferers, many of whom are or were users of illegal injection drugs.
“It’s incredibly important for these people to have a place to go where they can get their questions answered, where they can get support, and where they won’t be judged,” says Clements.
The Oasis Clinic’s support group is unique in that it offers patients the option to come together, see the doctor, and get a free lunch all at the same time. In addition, a clinician who is well-trained in hepatitis C diagnosis and treatment always moderates the groups. Getting together in groups ensures that patients get accurate information about hepatitis C and its treatment, Clements says.
The less you know, the scarier it is
On this particular day, the group moderator is Erica Miller, who fields a question about whether you can stop your treatment and then start it up again. The answer is no.
Why can’t you? Because the virus can come back even stronger if you stop treatment before you should, and because the medicine is very expensive. “You should be sure you’re in a place in your life where you’re ready to stick with the treatment before you begin,” Miller stresses.
During the break, 54-year-old Tim Maginnis says that this group saved his life. When he first found out he had the disease three years ago, the Oakland resident was still using heroin and drinking heavily. The doctor who diagnosed him put it bluntly: Maginnis had two choices — change his lifestyle dramatically or simply “go home and die.” Luckily, he stumbled upon the support group at Oasis and eventually found Alcoholics Anonymous and Narcotics Anonymous as well. Maginnis has been clean and sober for more than two years and has gone through treatment for hepatitis C.
“The less you know about the disease, the scarier it is and most people don’t know much about hepatitis C,” says Maginnis. Even though his disease was rather advanced (he has cirrhosis of the liver), Maginnis turned out to have a type of hepatitis C — known as genotype 2 — that responds better to treatment than the more common genotype 1. After six months of taking interferon shots and ribavirin pills, he says his system was completely cleared of the virus.
During treatment, Maginnis relied on group meetings to get through the often-miserable side effects caused by interferon. “I got really depressed, I’d break down crying all the time, I couldn’t concentrate all the usual stuff,” Maginnis says with the air of someone who’s been through it all. But it paid off for Maginnis. Before treatment, he says, he was lethargic and had gained considerable water weight (edema) due to his malfunctioning liver. Today he is trim and energetic, and he continues to attend the support group to offer inspiration for other hepatitis C sufferers.
Miller continues around the room asking people to introduce themselves and say whatever they want about why they’re there. For privacy reasons, a few of them decline to use their real names. Martha*, in her 10th month of a 12-month treatment course of interferon and ribavirin, says she’s sick and tired of the way the drugs make her feel. “The treatment seemed to be getting easier, but now, with just two months to go, I can hardly stand it again,” she says, looking exhausted and near tears. “My feet feel like lead,” Martha continues, and at least once a day she now has a spell in which her heart races, she can’t catch her breath, and she feels nauseous.
Another group member, James*, tells Martha the same thing happened to him when he was in treatment, and when it did he would sit down, eat a cracker, and drink some water.
“How do I know what stage of hepatitis I’m in?” asks Sally*, a newcomer who has just been diagnosed with hepatitis C. Hands shoot up around the room, but Miller takes the first stab at answering her question: a liver biopsy. Others chime in to say the procedure really doesn’t hurt, even though most people think it will.
“And why is it important to know which stage you’re in?” Miller asks the crowd. She reminds them that the stage they’re in determines whether or not you need to start treatment. Most people are surprised to find out that many people with hepatitis C never need treatment.
Portia Hunter-Roberts, 49, attends the support group even though she’s only in stage one of the disease, is not undergoing treatment, and has no symptoms. Although the Oakland resident thinks she got hepatitis C about 11 years ago, the disease has not yet advanced beyond the first stage. Hunter-Roberts, Miller points out, is a good example of someone who may never need treatment: If the disease continues at its present rate of progress, she’ll likely die of old age before her liver is seriously damaged.
Being in the support group comforts Hunter-Roberts, even though others are grappling with far more serious problems than hers. “We come from all kinds of different worlds, but we are all here in the same boat,” she says.
* These names have been changed.
American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038
(800) GO.Liver (465-4837) or 888.4HEP.USA (423-7872)
To find a support group in your area, contact the American Liver Foundation chapter in your area, and/or try calling the clinics or doctors who specialize in treating hepatitis.
A national Web site that lists support groups by state as well as hundreds of articles about hepatitis.
520 27th St.
Oakland, CA 94612
Interview with Barry Clements, medical director of the Oasis Clinic in Oakland, California
Interviews with Larry Gonzalez*, Ted Maginnis, and Portia Hunters-Roberts, hepatitis C patients who attend the Oasis Clinic
Centers for Disease Control and Prevention. Hepatitis C Statistics. Retrieved March 2017 from https://www.cdc.gov/hepatitis/statistics/2014surveillance/commentary.htm#hepatitisC
US Census Bureau. Home Page. http://www.census.gov
C. Everett Koop Institute. Hepatitis C: The Facts. http://www.epidemic.org/theFacts/theEpidemic/