Recognizing National Hepatitis Awareness Month
The month of May is recognized to bring awareness around those living with viral hepatitis. The awareness effort encourages people to get tested for hepatitis and to evaluate treatment options. According to the Centers for Disease Control and Prevention (CDC), an estimated 3.2 million people in the U.S. with chronic Hepatitis C (HCV) are unaware of their condition. But for the bleeding disorders community, the call for increased awareness and rapid treatment is not entirely ‘on target.’
We Know Our HCV Status
Our community is unusual in the very high level of knowledge about HCV status, liver disease progression, and treatment options. That’s because the problem is both well-recognized and pervasive. From its first availability around 1968 through the early 1980s, clotting factor products were contaminated with HCV through the blood supply. An estimated 20% of those exposed beat the virus off (just like how we fight off colds). The remaining 80%, many of whom have died, are affected by symptoms that often start fairly modestly with GI disturbance, but progress toward serious, even grim, problems due to an increasingly clogged and dysfunctional liver.
Symptoms of HCV
Health effects of particular importance to the bleeding disorders community have to do with bleeding and co-infection. Advanced liver disease clogs blood flow through the liver, causing hypertension in the portal system (which drains the blood supply to the GI tract). In turn, portal hypertension may cause stomach and esophageal bleeding, and it may cause swelling of the spleen and a consequent decline in platelets. In more advanced stages of liver disease, production of clotting factors may be reduced.
HCV is often more virulent in persons who have other health issues. Co-infection with HIV (common in our community) increases the virulence of HCV infection. On average, HCV disease progression among co-infected patients is more rapid and treatment is less effective.
What Treatments are Available Now?
The current Standard of Care (SOC) for HCV is Pegylated Interferon (p-IFN) and Ribavirin (RBV). Cure rates, particularly for people with long-standing disease and co-morbidities, are mediocre. Side effects are frequently nasty, including flu symptoms, anemia, and depression. Treatment timeframes are long (6 to 11 months, depending on the HCV genotype).
Neither p-IFN nor Ribavirin directly target the HCV virus. The first is an immune modulator, and the second is a broad spectrum antimetabolite. The first generation of drugs that do target the HCV virus include Telaprevir (Incevik) and Boceprevir (Victrelis). Both were approved in 2011. Disappointingly, the drugs cannot produce a cure by themselves, so they must be added to the SOC cocktail. The enhanced SOC cocktail does improve the cure rates, but it also is associated with sharply increased side effects.
Maybe Rapid Treatment Isn’t Always the Best Idea
The current therapies for chronic HCV involve taking up to a year of a powerful drug cocktail. Some do very well on this therapy, and many are cured, a wonderful outcome. However, for the most common variety of HCV most are not. The U.S. Food and Drug Administration (FDA) is aware of this and supports the development of improved therapies.
The current interferon-based therapies are not only mediocre in terms of cure rate, but many find therapy a very debilitating experience. Some literally cannot tolerate these therapies due to the physical and mental side effects. The technical literature contains many claims that current therapies are “well tolerated,” but this is a misleading statement.
A minority, but growing, expert opinion has it that the current treatments for chronic HCV may often be worse for many patients than no treatment at all.
If Not Immediate Therapy, Then What?
Hopeful waiting. Three years ago, advanced curative therapies for HCV was an unproven concept. That’s no longer the case. We are not far from commercial availability of much better curative therapies. For those who have lived fairly well for decades with HCV, at least one reasonable option is to do this is simply to take care of yourself. Avoid stressing your liver with a lot of alcohol or Tylenol. A lot of people take alternative treatments such as milk-thistle. Help is coming. Over a dozen agents are in clinical testing for new therapies.
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Mark Antell is an HFA board member representing the Hemophilia Association of the Capital Area (HACA). Mark is an educated layperson who is affected by hemophilia and chronic HCV. He advocates with anyone involved in HCV drug development, approval and availability, for the earliest possible access to advanced therapy for our community.
