As we explore the stigma that still faces gay men living with Hepatitis C in our new October issue, LGBT+ activist and Stonewall Role Model Philip C Baldwin opens up about his experience of living with the disease…
2010 was a turbulent year for me. I had been diagnosed with both HIV and Hep C at the beginning of that year. I experienced fear, shame, denial and resentment. The anxiety of my diagnoses left me feeling like I wanted to vomit. Coming to terms with being co-infected with HIV and Hep C was difficult. This was made harder by the stigma and lack of awareness around Hep C that I found amongst gay men.
The stigma of Hep C is much worse within the gay community than that of HIV. HIV stigma in the UK does remain very real. According to the findings of the Stigma Index’s 2015 report, one in five HIV positive people in the UK has considered suicide in the last year. I did experience stigma from other gay men on account of my HIV, but my Hep C left me feeling isolated in a way that my HIV didn’t.
Gay men are far more informed about HIV than Hep C. Telling gay men that I was HIV positive was comparatively straightforward. Discussing my Hep C left me feeling vulnerable. I was afraid of rejection from other gay men, particularly around my Hep C. I was worried that I wouldn’t be able to have long-term relationships. I thought that other gay men would no longer perceive me as sexually desirable.
I went from being an out and proud gay man to feeling ashamed and insecure. Following my diagnoses, I was worried that HIV negative gay men would not want to date me on account of my HIV and I was worried that HIV positive gay men would not want to date me on account of my Hep C. I felt so alone.
I found it very hard, at first, to disclose my Hep C status. I was waiting to be treated for my Hep C and, although healthy, was dealing with a lot of uncertainty myself. I had to gain self acceptance around both my HIV and Hep C before I felt comfortable talking about being co-infected. One year after my diagnoses, an HIV positive friend confided in me that he had Hep C. I didn’t have the confidence to tell him that I was Hep C positive as well. I was paranoid that other gay men would gossip about my Hep C. I thought that they would say that I was dirty or a slut. I had heard HIV-positive gay men talking about gay men with Hep C in this way. I was confused. I felt awkward. I didn’t know what to do.
Once I had the courage to talk openly about my Hep C, I had mixed responses from gay men. No one ever rejected me sexually on account of my HIV, but my Hep C was problematic. I told one gay man that I was both HIV and Hep C positive, he rejected me and then, the following day, he sent me a text apologising and asking me out on a date. Some gay men congratulated me on being so open about my Hep C status.
I cleared my Hep C at the start of this year. What is wonderful is that since my diagnosis in 2010, there have been amazing advances in Hep C treatments. I did the new direct acting antiviral (DAA) treatment, which lasts three months, from December 2016 to early March 2017. The DAA treatment is effective and I found it to be side effect-free. I was surprised when my HIV and Hep C specialist offered me the treatment, as I had previously been told that access to the treatment was being restricted by the NHS. He explained that in some regions waiting lists had been cleared, allowing his London clinic to treat more people. I know some gay men who are still waiting for treatment, but the situation is improving.
I would encourage all gay men to test regularly for Hep C and, if you are currently living with Hep C, continue to raise the issue of treatment with your specialist. Hep C is now 100 % curable. We need to apply pressure to the NHS to ensure that everyone receives the new DAA drugs, but should also remember that this is the first blood-borne virus science has been able to cure.
This is a moment of great hope. We must shatter the stigma of Hep C and continue to raise awareness around Hep C, the new DAA treatments and HIV.
Follow Philip Christopher Baldwin on Twitter @philipcbaldwin.