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August 2000

Striking Lack of Awareness

“People with hepatitis C infection deserve the same tools as those with HIV so that they can become experts about their virus,” explains Michael Marco in the introduction to TAG’s latest analysis of hepatitis C research and treatment. The complete report can be accessed here. What follows is a taste of what’s contained inside.

This report is a collaborative effort. Jeffrey Schouten was a great partner who worked with me over these two years, and he wrote selected hepatitis C chapters and the section on hepatitis and HIV coinfection. Version 2.0 of this report, already in production, will include an analysis of the research and treatment of hepatitis viruses A and B. Expert hepatitis researchers-including Marion Peters, Thierry Poynard, Teresa Wright, Jay Hoofnagle, Leonard Seeff, and Douglas Dieterich-went out of their way in varying capacities to help me, an AIDS treatment advocate they had never met.

My appreciation of and desire to study hepatitis C virus research is something new. It started off as mere curiosity during my research of AIDS-related opportunistic infections (OIs) when I thought about adding a short chapter on hepatitis C to TAG’s OI Report because it was well-known that many individuals with HIV are also coinfected with hepatitis C. Two years later, it seems laughable that one could write a short chapter on hepatitis C. It has become apparent to me that there is a need for a thorough study, review, and critical analysis of hepatitis C research and treatment.

Over the years, AIDS treatment advocates have critically analyzed the numerous facets of HIV clinical and basic research with great aplomb. They have produced a wealth of patient-readable HIV treatment information so that people with HIV/AIDS can become experts in understanding their disease. In my two years of researching hepatitis C, I found that there were only a few hepatitis C treatment advocates, yet none had created one text that contained a complete overview of the disease, analyzed the research, and offered important and sound hepatitis C treatment information as well as policy recommendations to move the field of hepatitis C research forward. Since I have been well-trained and mentored in researching and writing such documents on HIV-related complications, I felt I would initiate TAG’s Hepatitis Project and write a report on hepatitis C, as well as on hepatitis and HIV coinfection. People with hepatitis C deserve the same tools as those with HIV so that they can become experts about their disease.

I quickly realized that people with hepatitis C were not the only ones who needed to become experts. Many primary care physicians lack a complete breath of knowledge of the epidemiology and clinical management of hepatitis C. This was blatantly obvious in the 1999 Hepatology article, “Current Practice Patterns of Primary Care Physicians in the Management of Patients with Hepatitis C,” by Shehab and colleagues from Anna Lok’s group at the University of Michigan. In a survey of over 400 primary care physicians from the Detroit area, 20% and 8%, respectively, considered blood transfusion in 1994 and casual household contact as significant risk factors for hepatitis C infection. Forty-three percent overestimated the likelihood of a sustained response to a course of interferon therapy, while 29% had no idea what the sustained response rate was. Thirty-eight percent would not refer an individual with a positive hepatitis C antibody test to a gastroenterologist — even though they had no experience in treating hepatitis C themselves.

Another study by Villano and colleagues from Johns Hopkins found that a majority of the intravenous-drug-using individuals in their natural history, cohort-tested hepatitis C, antibody-positive their first time on study — yet were under the care of clinic or primary care physicians. This striking lack of awareness by health care providers about hepatitis C epidemiology, risk factors, and clinical management is unacceptable. Let us hope that this report gets into the hands of the physicians and people with HCV who need it.

I also wrote the report in an attempt to quell the mass hysteria about hepatitis C created by major weekly news magazines as well as by the obnoxious “Get tested, get treated” hepatitis C advertising campaign of a greedy pharmaceutical company. The push to immediately treat everyone who tests positive for hepatitis C made my blood boil, because that is often the same message given to those who initially test positive for HIV. (For HIV, clinical endpoint studies have shown a survival advantage to starting potent, combination antiretroviral therapy only once a person’s CD4 count has dropped below 200 cell/mm3. Yet with both viruses, we still have not fully answered the question, “When should one initiate antiviral therapy?”

This hepatitis C report attempts to answer that question and documents what we know and what we don’t know about the epidemiology, natural history, diagnosis, and treatment of hepatitis C infection.

After an exhaustive analysis of peer-reviewed articles, over 40 researchers, clinicians, primary care physicians, government heath administrators, industry representatives, and patients with viral hepatitis were interviewed.

Research and treatment policy recommendations have been issued and will need to be implemented in order to carefully find answers to the many basic and clinical science questions in hepatitis C research.

More collaborative and concentrated efforts on the part of industry, physicians, government, and the hepatitis community alike are needed if we are to effectively challenge, overcome, and cure hepatitis C infection.

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