Hepatitis C is the most common blood-borne infection in the U.S., and one of the most common worldwide. One in 50 Americans is infected. It accounts for more than 50 percent of all cases of end-stage liver disease and 50 percent of cases of liver cancer, and it is the reason for more than 50 percent of liver transplants. Yet it remains severely underdiagnosed. It's estimated that upwards of 75 percent of those infected remain untested and undiagnosed, as compared with 25 percent of those with HIV. More people now die from hepatitis C than from HIV.
Those of us who struggled through the early period of AIDS understand the meaning of "Silence = Death," the motto used by the AIDS activist organization ACT UP. So when hepatitis C began to emerge among MSM (men who have sex with men), the silence that ensued seemed eerily familiar. When I first started reporting on hepatitis C in gay men nearly a generation ago, the disease was already being called "the stealth epidemic," in part because of the typically long, silent progression of the disease in its chronic form, sometimes taking 20 to 30 years from acute infection to cirrhosis of the liver, but also because of the public silence about it. If people had the disease, they mostly didn't know it, and if they did have it and did know it, they didn't go public with it. Nor did those with the disease often seek treatment, which had the reputation of being prolonged, difficult and of mixed efficacy. Since the principal risk group for the disease was injection drug users, the public wasn't exactly clamoring to know more or be more involved. There was no megacelebrity out there to help galvanize public interest and support who would admit to having hep C the way that Magic Johnson came out as having HIV. How much has changed in the intervening years?
Despite newer and often highly effective treatments that are essentially curative, not much has changed in terms of public awareness and indifference. Hepatitis C remains a stealth disease. Public health officials have long resisted the call to sound the alarm for hep C as an STI (sexually transmitted infection), citing the weak transmissibility of hep C sexually. For years, they didn't even urge that the partners of those who were hep C-positive be tested. Granted that HCV hasn't shown itself to be nearly as transmissible sexually as HIV, I expressed my concerns about what seemed to be excessive cautiousness around testing recommendations -- in the gay press, for New York magazine as well as in a public health forum co-hosted by the CDC in Atlanta.1, 2 I argued that there needed to be greater awareness of and testing for hepatitis C as an STI, especially among MSM. As the call-out in New York put it, "Hepatitis C infections are spreading beyond high-risk groups, causing a few physicians to call for widespread testing. But the medical establishment is stalling. Sound familiar?"
Why was this so controversial? Why not just test everybody who might be at risk, even if that risk were "small"? The reason I was given by CDC epidemiologists and other public health officials was that urging everyone to get tested for hep C, even all MSM, could create unwarranted alarm and would be an unjustifiable expense in view of the relative minority of cases. Also, despite the increasing numbers of cases in gay men/MSM, those numbers remain "small," and it wasn't clear that other undisclosed risk factors such as injection drug use weren't responsible, since increased rates of sexual spread weren't being observed among heterosexuals.
So where do we stand with all this now? Amidst growing reports of new cases among clusters of gay men/MSM, especially in Europe, and growing numbers of cases in MSM generally, the latest review and recommendations from USPSTF (U.S. Preventive Services Task Force) from June 25, 2013, include the following:
The Task Force reviewed recent research studies on screening for and treatment of hepatitis C infection in adults. The final recommendation statement summarizes what the Task Force learned about the potential benefits and harms of screening: (1) Adults at high risk for hepatitis C infection should be screened for the infection. (2) Health care professionals should offer 1-time hepatitis C screening to adults born between 1945 and 1965.
And who are they designating as being at "high risk"?
The most important risk factor for hepatitis C infection is the use of injection drugs. Other risk factors include having had a blood transfusion before 1992, having multiple sex partners, and getting a tattoo with an unsterilized needle.
OK, so there, they've said it: "those having multiple sexual partners." But that recommendation is absent from their final, summary recommendations. There, they define those at "high risk" to be as follows:
People who use injection drugs now or have used them in the past. Having a blood transfusion before 1992 also puts a person at increased risk. Be screened only once. Some people with ongoing risk factors, such as injection drug users, need to be screened more than once.
There's no mention in these final recommendations of those having "multiple sexual partners," which would include the majority of gay men/MSM, apparently because they are more "at risk" than at "high risk." OK, but then why not designate MSM as "at risk," even if that risk is believed to be low? Clearly, public health advisories re hepatitis C testing for MSM remain unclear.
So where does all this leave us? When it comes to hepatitis C screening, gay men must once again be proactive. If you are a sexually active gay man/MSM, if you've had sex with multiple partners over time, get tested for hepatitis C. If your doctor or health care provider declines to offer the testing based on perceived low risk and unclear public health services recommendations, seek testing from another health care provider.
1. Mass, Lawrence D., "C-Sick," New York, March 29, 1999.
2. "AIDS and Hepatitis C: Lessons from AIDS," from Emerging Illnesses and Society: Negotiating the Public Health Agenda, edited by Randall M. Packard et al., Johns Hopkins University Press, 2004.
Lawrence D. Mass, M.D., is a co-founder of Gay Men's Health Crisis and wrote the first published press reports on AIDS.