| This virus is the most common blood-borne illness in the United States. It is the most common cause of liver transplants. And it kills up to 10,000 Americans each year--a number expected to triple in 10 years.
This virus is not HIV. Rather, it's the hepatitis C virus, also called HCV. The National Institute on Drug Abuse (NIDA) reports that about four million Americans are infected with HCV--about 1.8 percent of the country's population. But among people who start injecting illegal drugs, 50 to 80 percent get infected with HCV within one year. Most of them are young, aged 20 to 39. And most will not know they are infected, because symptoms of infection can go undetected for 20 years. Because they remain clueless about HCV, these people can easily infect others. Today thousands of people with HCV have clear symptoms of the illness. Due to the way that HCV infection spreads, many of them are already recovering from addiction to alcohol and other drugs. And in the spirit of Step One, these people are telling the truth: that they live with a chronic illness and that the Twelve Steps light a path to sanity and sobriety in the face of HCV.
HCV targets liver Among people who contract HCV, about 15 percent are able to clear the virus naturally from the bloodstream, according to NIDA. The rest adjust to HCV as a long-term condition--one that increases their risk of liver damage, including cirrhosis and liver cancer. Few people consider the importance of their liver until disease makes it falter. This organ is the body's "detox" center. It neutralizes germs, bacteria and toxic chemicals. It produces natural chemicals that help the body resist infection. The liver also controls the production of cholesterol. Other viruses, including hepatitis A and B, can also damage the liver. Yet these viruses rarely lead to long-term infection. And while we have vaccines to prevent hepatitis A and B, no vaccine exists for HCV. HCV is far from a guarantee of liver disease. Among people with HCV, 80 percent remain free of cirrhosis after 20 years of infection. About 1 to 5 percent develop liver cancer. However, people with HCV often live with symptoms that cloud their moment-to-moment health. Imagine having the flu most of the time--feeling nausea, fatigue, and loss of appetite. That's a common way to experience life with HCV. "It's like you're moving in slow motion and the rest of the world's moving at a normal pace," says Bob, an HCV survivor. Also imagine living with the symptoms of advanced liver disease, which include jaundice, abdominal swelling, and easy bruising. The longer a person lives with HCV, the greater the chance of those advanced symptoms.
Behavior spreads HCV HCV differs from HIV on one crucial point: People are far less likely to infect each other with HCV when they have sex. NIDA estimates that sexual transmission accounts for less than 20 percent of HCV infection. Among people who remain in long-term monogamous relationships with an infected person, less than 5 percent find themselves diagnosed with HCV. However, the risk of spreading HCV through sex is still present, especially when sex results in blood exposure. Having multiple sex partners also increases the risk. Before 1992 there was no way to screen blood supplies for HCV. Some people got infected with HCV through blood transfusions. Today that's rare. There are a handful of other ways to spread HCV. Pregnant mothers with the virus can infect their infants, especially when the mothers have HIV and HCV. People who share straws when they snort cocaine can spread HCV. So can people who share razors, toothbrushes, and other items that can pick up a person's blood. Finally, there's a possible risk from body piercing and tattooing, though existing research is unclear on this point.
Treatments target HCV Interferon and ribavirin can have serious side effects, including fatigue, and not everyone is a candidate for treatment. People with HCV may delay medication until they have clear evidence of serious liver damage. This is a reasonable option because liver disease often progresses slowly and can be closely monitored. "When you take interferon, the chief drug used to treat HCV, it knocks the heck out of you," says Dan, who is HCV-positive. "Nearly everyone I know reports feeling depressed, fatigued, and scared when taking interferon." In a famous phrase, Bill W. described alcoholism as "cunning, baffling, and powerful." Those adjectives apply with equal force to HCV. Some people find that the virus multiplies as soon as they stop treatment. Others find that their symptoms remain, even when they test negative for the virus. Other medications are on the way. "There are a variety of new antiviral medications that are in clinical trials now that may be used with other drugs down the road," says Michael Demask, PhD, associate professor in Hazelden's Graduate School of Addiction Studies. "But we don't have any vaccine for HCV, and we're not expecting one anytime soon. It may be years before there's anything that works." Coleman Smith, MD, a hepatologist with Minnesota Gastroenterology in Minneapolis, says that new forms of interferon could be combined with ribavirin and cure half of the people with HCV. "But we've still got a way to go," he adds, "and we'd like to be at much more than 50 percent. The prospects are good that we're going to do better, but I'm not sure when and with what agents." People with HCV need to be monitored for the presence of liver disease and should reduce or stop their use of alcohol. Given the mixed results of interferon and ribavirin, some people with HCV choose alternative treatments such as acupuncture and herbs. This choice aligns with a trend in our culture as a whole. One group of researchers surveyed Americans' use of alternative medicine between 1990 and 1997 and published the results in the Journal of the American Medical Association (1998, Vol. 280, pp 1569-1575). During that period, Americans made more visits to alternative practitioners than they did to primary care physicians. "Western medical techniquesthose that produced interferon and ribavirinare the only treatments that I've seen that produce any clinical evidence for suppressing HCV below any detectable limits and can keep it that way for years," Demask says. "But that's not to minimize the potential of alternative techniques that lower the viral load in the body consistently and give the liver a chance to rehabilitate."
HCV takes emotional toll Fears of HCV exist even among health care professionals. Dan, an HCV survivor, recalls a visit to his former chiropractor. "She was doing an adjustment . . . and she was pregnant at the time. I casually remarked, having seen her previous times, that I had HCV. As soon as the words were said, she dropped her hold on me and jumped back out of the way, scared to death that I had infected her. I had to remind her--someone who likes to be called doctor by the way--it's not infectious unless she drinks my blood or other body fluids." There's an emotional fallout from reactions like these. People with HCV can feel anger, fear, grief, and loss--all accented when they live with HCV infection and addiction. Those feelings are not only related to HCV diagnosis but to the physical limitations of the illness, which often require lifestyle changes. Individuals with depression and anxiety issues often experience an exacerbation of symptoms when diagnosed with HCV and once HCV treatment is initiated, says Sue Hoisington, PsyD, executive director of Hazelden Mental Health Centers. "Individuals in addiction recovery with HCV often times have difficulty finding appropriate support," says Hoisington. "Sponsors and other Twelve Step group members frequently have little or no knowledge about HCV. They need education about the illness in order to provide support. Understanding the relationship between HCV diagnosis and treatment and recovery is critical. Living with HCV in isolation leaves chemically dependent individuals vulnerable to relapse." HCV can impact personal relationships. The lack of understanding about HCV by family members and friends can cause fear and a break down in communication, adds Hoisington.
Steps target HCV Another tool is the traditional Twelve Step message that there are no solos in recovery--that connection with people and conscious contact with a Higher Power are lifesavers. "I have been treated four different times with interferon," says Dan. "And what I have learned, if anything, is that it always gets the best of me. In that way I need supportive people around me, people who will allow me to be cranky and down. It's hard to get that. Because people with HCV don't look sick, people have trouble believing that they are." "What works well with addiction and alcoholism certainly works with this chronic illness too in terms of acceptance and powerlessness," says Bob. "All the Steps are applicable, especially in terms of trying to find peace through a relationship with a Higher Power. That's one of the things that has been strengthened in my life as a result of having hepatitis C. It's much easier for me to have a relationship with God when I'm talking to Him on His terms rather than my own." Bob lives with HCV one day at a time: "I try to focus on the glass being half full instead of half empty. At the same time I can take action steps, including carrying the message that having hepatitis C is not a death sentence and that you can achieve quality life with the illness." Resources for learning about and living with HCV
Published in The Voice, Summer 2001 The Hazelden Voice is published twice yearly by Hazelden. Direct your inquiries to email@hazelden.org or call 1-800-257-7810. All material copyright by Hazelden Foundation. |
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