July 9-14, 2000
"Clearly the problem of HCV will require a responsible partnership of public and private organizations. . . . If we are to make progress against this perplexing epidemic, careful and disinterested voices must prevail."1
"Despite the wide publicity about hepatitis C in the media, and the numerous educational conferences and publications in the medical literature, and the dissemination of the NIH consensus statement on hepatitis C, there are significant deficits in the knowledge of primary care physicians regarding hepatitis C."2
My appreciation of and desire to study hepatitis C virus (HCV) 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 HCV to TAG's OI Report because it was well known that many individuals with HIV are also coinfected with HCV. Approximately two years later, it seems laughable that one could simply write a "short chapter" on HCV. It has become apparent to me that there is a need for a thorough study, review and critical analysis of HCV research.
Many 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 virus. In my two years of researching HCV, I found that there were only a few HCV treatment advocates, yet none had created one text that contained a complete overview of the virus, analyzed the research, and offered important and sound HCV treatment information as well as policy recommendations to move the field of HCV 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 HCV, as well as on hepatitis and HIV coinfection. People with HCV deserve the same tools as those with HIV so that they can become experts about their virus.
I quickly realized that people with HCV were not the only ones who needed to become experts. I found that many primary care physicians lack a complete breadth of knowledge of the epidemiology and clinical management of HCV. 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 Michigan2. 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 HCV; 43% overestimated the likelihood of a sustained response to a course of interferon therapy, while 29% had no idea what the sustained response rate was; 38% would not a refer an HCV antibody-positive patient to a gastroenterologist even though they had no experience in treating HCV patients on their own. Another study by Villano and colleagues from Johns Hopkins found that a majority of the intravenous-drug-using patients in their natural history cohort tested HCV antibody-positive their first time on study yet were under the care of clinic or primary care physicians3. This striking lack of awareness by health care providers about HCV epidemiology, risk factors and clinical management is unacceptable. Let us hope that this report gets into the hands of the physicians and patients who need it.
I also wrote the report in an attempt to quell the mass hysteria about HCV created by major weekly news magazines as well as by the obnoxious "get tested, get treated" HCV advertising campaign of a greedy pharmaceutical company. The push to immediately treat everyone who tests positive for HCV made my blood boil, because that is often the same message given to those who initially test positive for HIV. For HIV, we have only clinical endpoint studies documenting a survival advantage to starting potent, combination antiretroviral therapy before a patient's CD4 count drops below 200 cell/m3, yet with both viruses, we still have not fully answered the question, When should one initiate antiviral therapy? (i.e., "When to start?").
This HCV 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 HCV. 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 HCV research.
This large report -- which will grow still larger in version 2.0 to include an analysis of the research and treatment of hepatitis viruses A and B (HAV and HBV) -- is a collaborative effort. Jeffrey Schouten was a great partner who worked with me over these two years, and he wrote selected HCV chapters and the section on hepatitis and HIV coinfection. 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.
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 HCV.