What can we do to address the obstacles to HCV treatment?
by Larry Buhl
Hepatitis C (HCV) is a “silent killer” in more ways than one. It is a sneaky disease that can leave its victim asymptomatic for many years while doing massive damage to the liver. And too often it’s not talked about, due to stigmatization of the disease. But the alarming statistics regarding hepatitis C are causing more in the medical community to talk about it: Liver cancer, which is often driven by HCV, is the most rapidly rising cause of death in those infected with HIV.
While some are talking, Lynn E. Taylor, MD, an HIV specialist focusing on HIV and viral hepatitis coinfection, is shouting. “We’ve been losing the battle [against HCV]. I’m tired of going to funerals for people who have survived having HIV only to die of complications from hepatitis C,” she tells A&U.
In addition to her private practice, Dr. Taylor directs the HIV/HCV Coinfection Program at Miriam Hospital, a major teaching hospital of Brown University. The program provides multidisciplinary care to HIV/HCV and HIV/HBV coinfected people. Dr. Taylor is principal investigator of the Lifespan/Tufts/Brown Center for AIDS Research (CFAR) pilot study to develop, implement, and evaluate a screening strategy for acute hepatitis C virus infection among at-risk patients in an HIV clinic. Through her research and direct work with hep C-infected patients, Dr. Taylor has identified five barriers that the medical community must break down in order to halt the alarming rise in HCV infection.
1. National screening guidelines. Right now it’s up to the doctor and the patient to determine whether to check for HCV. “Typically patients usually receive one hep C test when they first test positive for HIV, but they’re not tested after that. Doctors are under no obligation to test.” Taylor recommends that HCV tests be automatic, and done every year. “It should be a standard test. Too many doctors are missing hepatitis C because they are not diagnosing it early.”
2. Make wiser decisions about using interferon. Pegylated interferon is a standard treatment for hepatitis C, but it is toxic and often leads to debilitating side effects. Because of this, many doctors resist putting their patients on it. Furthermore, interferon doesn’t directly attack hepatitis C. New drugs in the pipeline, including protease inhibitors such as telaprevir (covered in the October 2010 issue), offer some hope that interferon may be retired. But until then, interferon therapy, when used, must be made safer for patients. One of these ways, according to Dr. Taylor, is a new FDA approved screening test to help predict which patients are most likely to benefit from chronic hepatitis C therapy. “With this test you can see how sensitive the patient is to interferon.”
3. Better hepatitis education for doctors. Taylor believes that a lot of good doctors don’t understand HCV well enough. “When you compare HIV and hepatitis C, it’s much easier to find out what’s going on with the patient who has HIV,” Taylor says. “If I know the CD4 count and T cells, I have a good idea of how it’s progressing. Hepatitis C is a puzzle. Even with ten different blood tests, a physical exam, and sometimes a liver biopsy, which is invasive and many patients don’t want, it’s tricky to tell what’s really going on in the body. Unless they’re hepatitis experts, doctors don’t know how to interpret all of these tests. People are referred to me all the time with severe liver scarring, and their doctors didn’t know it was going on.”
Dr. Taylor tells A&U that the Infectious Disease Society of America needs to become more involved in promoting training for doctors.
4. Government funding for research and prevention. Last year the Obama Administration overturned the federal ban on needle exchange, which is a good start in prevention. But there are no federal funds for hepatitis C research and needle-exchange programs, so this must come from the states. And in this prolonged economic slump, many of the states are broke.
Beyond funding needle-exchange programs, there needs to be a strong effort to research several aspects of this murky disease. The CDC needs to research how and why hepatitis C is so deadly among those with HIV, for example.
5. Public awareness. Just as doctors are not trained in treating HCV, at-risk populations don’t have enough information to prevent the disease and to understand treatment options. “[HCV] is spread through blood, and it’s a disease that’s been stigmatized and the at-risk population is underinsured and often marginalized. And we’re finding out that IV drug use is not the only risk factor. There is a dramatic rise in cases of sexually-transmitted hepatitis. We need to know why, so we can direct our prevention efforts there.”
Dr. Taylor has a palpable frustration with the slowness of the government and the medical community in responding to HCV, although she does have hope that awareness is growing. “We have to remember that hepatitis C is the only virus that is completely curable. We should be doing a much better job of curing it.”
Larry Buhl is a freelance journalist and screenwriter living in Los Angeles.