Philip Christopher Baldwin talks about living with Hep C in the gay community

Shortly after my diagnosis, when a friend confided in me that he had Hep C, I did not have the courage to tell him that I had Hep C as well. I was frightened.

I felt touched that he trusted me, yet guilty for not sharing my secret with him. I hated lying and wish I had been able to support him better. I thought that people would gossip about my Hep C. My own fear manifested itself in paranoia. There were no role models in the media for co-infection with HIV and Hep C, which made it harder to be open. I had fought so hard to be an out gay man, and now I was hiding something that was inextricably linked to my sexuality, to my identity and to my core sense of who I am.

 


I was diagnosed with Hep C a week after my initial HIV diagnosis in 2010. I caught both from the same sexual partner. Each diagnosis was traumatic and came as a massive shock. I still felt numb and confused as a consequence of the HIV diagnosis when I was suddenly informed that I was also Hep C positive. From the beginning I discussed my HIV status broadly in the gay community. I have only rarely experienced HIV stigma. Regarding Hep C, the story is much more nuanced. There is a lack of knowledge
and uncertainty. I felt shame on many different levels.

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I was not as candid regarding my Hep C status with other gay men and it was a number of years before I felt comfortable discussing this openly beyond my immediate circle of friends. Having been diagnosed at the age of twenty-four was hard. I was petrified I would no longer be perceived as sexually desirable. At this age I drew a lot of validation from sex. I was frightened of losing the intimacy and affection of other gay men. My HIV was easier to assimilate into my identity than my Hep C. It is a wonderful reflection of how inclusive and empathetic the gay community is that people living with HIV are increasingly accepted. My Hep C left me feeling remote from many of the people around me.

“I drew a lot of validation from sex. I was frightened of losing the intimacy and affection of other gay men.”

There was uncertainty regarding my treatment. In 2010 NHS policy was that, if diagnosed within a few months of contracting the virus, a course of interferon be commenced at once, the success rate for interferon higher if commenced in the initial period following infection. However, my diagnosis was probably longer than six months after initial infection. I tested positive for Hep C in January 2010 and had last been tested in the first half of 2009. In 2010 I was told that there was only a sixty per cent chance that a course of interferon would eradicate my Hep C. Patients treated with interferon are often left feeling sick and weak. My doctor and I decided I should not do the lengthy course of the drug, approximately nine months, as I was worried about the implications this could have on my career. This was a pivotal moment in my life and I did not want to destroy this opportunity with one of the world’s leading law firms.

Between 2010 and 2015 there have been incredible advances in treatment. My doctor and I periodically reviewed my health. In 2013 I once again considered interferon, but medical developments were taking place so rapidly that NHS policy was not to treat unless an individual was at immediate risk or they fell into the initial infection category.

I am lucky to have the support of an amazing doctor. I try to abstain from alcohol, which is the most dangerous factor regarding Hep C progression. For the first two years after my diagnosis I did not drink alcohol at all. My doctor and I discussed this in 2014 and he said that I could drink seven units a week without significantly damaging my liver. This was an approach that I could safely take and my liver is very healthy.

I now live happily with HIV and Hep C. I received the news last week that an incredible new treatment will be available, probably by the end of the year. It lasts only twelve weeks, has few side effects and is over ninety per cent effective. This has already been available to those with advanced Hep C for a few months. The NHS is currently negotiating pricing options with pharmaceutical companies, the expectation being that the price will fall significantly. Hep C treatment now has a shorter duration, fewer side effects and better success rate.

My advice? Take charge of your health and get tested at least every six months.

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1 COMMENT

  1. I was diagnosed with hiv in 1998 despite adopting safer sex. After the initial shock, I was drawn into the wilder side of gay scene barebacking and rough sex with lots of partners with no hiv discussions. In 2007 I was diagnosed with hep c. Hep c diagnosis was far worse to deal with. On a personal level, it reflected my irresponsible wrecklessness and having to face ineffective treatment. Outwardly, it is also associated with rough sex, needles, etc. I agree the fear and stigma of hep c in the gay community is far greater than hiv. One could almost wear the badge of hiv with pride as with a biohazard tattoo but not a hep c badge.
    Fortunately, I was able to enter an NHS research and was on 12 week oral medications with sofosbovir. As horrible as the medications were, I responded and was ‘cured’. My hiv and hep c remained undetectable.
    Now I no longer have any form of sex for the fear of another hep c infection or something else. I feel I have been given my third chance. Besides, I only like wild bareback sex and anything else is not really worth having.

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