In a space of a week in January 2010, Philip Baldwin had to wrap his head around both a HIV and a hepatitis C diagnosis.
He was just 24 at the time.
Now, a healthy 37-year-old, he wants to raise awareness of the stigma around hepatitis C – a blood-borne condition that, in the majority of cases (90%), can be treated and cured.
But in the 12 years that have passed since Philip’s diagnosis, public perception of the virus hasn’t progressed very much – and this is what he hopes to change.
The campaigner and charity trustee tells Metro.co.uk: ‘I experienced shock, shame, anger and even grief when I found out I had HIV and hepatitis C.
‘I felt like I had thrown my entire life away. During my late teens and early twenties, I had grown into an out and proud gay man.
‘The HIV diagnosis pulled the rug out from under my feet.’
During his first HIV clinic appointment, a nurse walked in and said he also had hepatitis C.
‘I can’t remember much about the appointment after that,’ he says. ‘This double-whammy was completely overwhelming.
‘Afterwards, I left the hospital and sat in a café. I felt confused, lost and alone. In retrospect, I’m not sure how I got through the rest of the day.’
It’s estimated around 118,000 people in the UK had hepatitis C in 2019, and slowly rates have been declining.
However, the average person tends to know less about this blood-borne virus than HIV – so Philip wants to ensure people don’t ‘forget’ about this illness.
Philip himself knew ‘nothing’ at all about hepatitis C when he was first diagnosed, which contributed to his feelings of isolation.
He says: ‘Sex and relationships education at my school was minimal and did not prepare us for the real world, so I knew little to nothing about HIV and hepatitis C.
‘Being co-infected created many problems. Back in 2010, my doctor advised me that the hepatitis C, combined with HIV, could potentially limit my life expectancy.
‘He estimated 20 to 40 years from the diagnosis, although he emphasised that this was dependent on a range of lifestyle factors.
‘He said that the best thing I could do, in terms of the hepatitis C, was to limit my alcohol consumption to protect my liver.’
Straight away Philip went sober for three years, but still struggled emotionally.
At this time, existing treatments for hepatitis C were less than 50% effective and had debilitating side effects.
In 2011, he connected with peer support groups and says meeting others living with hepatitis C helped to change his perspective.
Still, fighting the dual stigma left him incredibly lonely and isolated.
He remembers: ‘The stigma of being co-infected with HIV and hepatitis C was devastating.
‘I came out as gay in my late teens and telling people about my HIV and hepatitis C was like coming out a second time.
‘The diagnoses meant that I was in the closet again, but about HIV and hepatitis C rather than my sexuality.
‘I felt alienated from other gay men because of the HIV, and alienated from gay men living with HIV because of the hepatitis C.’
Philip reveals he even waited two years to tell his parents and employer – after a romantic relationship reminded him that he still ‘could be loved’.
Then, in 2016, he encountered that stigma in the most aggressive and hurtful way.
‘I was on a second date with a guy, in a bar full of people, and the guy knew that I was living with HIV,’ he says.
‘We were chatting and I mentioned the hepatitis C and he flipped out.
‘He called me a “dirty slut” and began shouting at me.
‘I just tried to laugh it off, but something like that obviously really impacts you though. Later that night I cried myself to sleep.’
Following effective treatment, hepatitis C had no physical impact on Philip, as it didn’t cause any lasting damage to his liver.
But he stresses the emotional elements were a ‘burden’.
‘There was so much uncertainty in my life. It caused me much more concern than the HIV,’ he continues.
‘Although I was functioning, following the dual diagnoses I experienced a period of anxiety and depression and there were even moments where I contemplated taking my own life.’
Around five years into his diagnosis, a new treatment for the condition emerged that was 95% effective with minimal side effects – but it was rationed by the NHS.
Philip campaigned for it to be more widely available for LGBTQ+ people.
‘The silence within the LGBTQ+ community was deafening,’ he says.
‘At one point it was estimated that, in London, as many as one in 12 gay or bisexual men living with HIV were also co-infected with hepatitis C.
‘There was really a mindset that if you were living with hepatitis C you should hide away and be ashamed – and if you were living with hepatitis C you definitely shouldn’t talk about it. I wasn’t going to do that.’
He received mixed messages of both abuse and applause for his campaign work – but, ultimately, this persistence resulted in wider availability for the new treatment.
Continuing that work, he says: ‘Now, it’s all about continuing to raise awareness around hepatitis C, finding people who are undiagnosed or who have fallen out of treatment pathways and getting them cured.’
Philip himself was cured in 2017 after accessing the once-restricted treatment – an oral medication taken for 12 weeks.
He says: ‘I was finally able to move on. Living with both HIV and hepatitis C dominated the second half of my twenties.
‘It is such a relief not to have to think about hepatitis C any longer in the context of my own health.
‘It’s only with hindsight that I realise how life-changing that was. It ended a period of uncertainty in my life.
‘I know that, as long as I take my HIV medication, I can expect to have a normal lifespan.’
With hepatitis C treatments now readily available, it is considered to be ‘largely eliminated’ amongst gay and bi men in the UK – but the emotional side to the illness is still in need of healing.
‘There continues to be a lot of stigma surrounding hepatitis C because of the lack of awareness,’ Philip says.
‘It’s impacted many traditionally marginalised people, from gay and bi men, to intravenous drug users and people in prisons.
‘For too many years people living with or impacted by hepatitis C have been ignored – and this is finally changing.’
Find out more from The Hepatitis C Trust.
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