I alighted, walking the final few hundred metres to the Grahame Hayton Unit at the Royal London Hospital. This is where I see my HIV and Hep C specialist. It was a warm November day. There were no clouds in the sky. My HIV and Hep C specialist called me into his consultation room. I sat down in a chair, at a right angle to his desk. The curve of my loafers caught the sunlight from the window. He smiled.
“It turns out we’ve almost finished treating everyone with severe liver problems associated with Hep C. Everyone with cirrhosis has now been treated. We’re working our way through the other patients now. We should be able to treat you with sofosbuvir in the second half of 2016.”
I am co-infected with HIV and Hep C. There are 215,000 people living with Hep C in the UK. 103,700 people have HIV in the UK. Nine per cent of those living with HIV are co-infected with Hep C. Hep C is a viral infection which causes inflammation of the liver. Advanced Hep C results in the liver developing fibrosis and ultimately cirrhosis. Left untreated, Hep C can reduce the lifespan of the patient to between 20 and 40 years after transmission. Hep C can develop at a faster rate in patients who are HIV positive. Developments in the treatment of Hep C have been incredible. Previous treatments were interferon-based and lasted 24-48 weeks, with varying degrees of effectiveness. The NHS has started to make the new treatment available, beyond clinical studies, over the last year.
It’s now only four months until I commence the new Hep C treatment. After five years of living with Hep C, I will soon be cured. The new treatment, using a medication called sofosbuvir, lasts 12 weeks and is almost 100 per cent effective. Hep C is the first virus that doctors have been able to cure. It is possible that Hep C may be eliminated in the UK within the next decade.
I was diagnosed with Hep C within a year of transmission, but many patients are diagnosed late. Only half of those infected with Hep C are diagnosed. There’s a substantial difference between the straight and LGBT communities in terms of awareness and testing. Men who have sex with men are more likely to be tested for STIs. At the Hepatitis C Trust’s conference last summer, I was saddened to hear accounts from people who, for years, did not know what the cause of their ailment was. I heard the anguish in a beautiful lady’s voice, as she told of years of platitudes from her GP, before her Hep C was finally diagnosed.
My story is so different. My Hep C was diagnosed in January 2010. I cannot have been Hep C positive for longer than a year before my diagnosis. I tested negative for HIV, Hep C and other STIs in the early part of 2009. I attended regular sexual health screens from the age of 17, twice a year. I am going to be treated for Hep C before my body displays any symptoms. Hep C has had no impact on my long term physical health. Straight or gay, people should get tested for Hep C. No one should have had to endure cirrhosis or Hep C related liver cancer.
In the LGBT community, re-infection is a big issue, which we cannot shy away from. Between 2004 and 2012, 858 gay men, co-infected with HIV and Hep C, were successfully treated for Hep C at the Chelsea and Westminster Hospital. Of this group, 191 cleared the virus, but were subsequently re-infected. This is a re-infection rate of around 25 per cent. At the moment the NHS is offering the new treatment to people only once. If you clear the virus using sofosbuvir and become Hep C positive again, you cannot be treated a second time with sofosbuvir. This policy will, ultimately, have to change if we are to eliminate the virus.
My HIV and Hep C specialist may retire when he has cured all of his current patients of Hep C, which he anticipates may be within a year or two. I have overcome a virus which I feared would reduce my life expectancy. My story with Hep C has taught me the nature of hope. A journey full of uncertainty has had a bright ending.
Philip Christopher Baldwin is a human rights activist living in London. His website is www.philipchristopherbaldwin.com and his Twitter account is @philipcbaldwin. This post was originally published on the Huffington Post and is reprinted with permission.
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