How much do you know about hepatitis C? You might know it’s a virus spread through infected blood, and that it’s associated with liver damage. But did you know there are now highly effective treatments, which mean hepatitis C often can be cleared in weeks?
This has all happened in relatively recent years, making hepatitis C treatment one of the major breakthroughs in modern medicine – yet awareness remains low.
“It’s really this massive success story, which very few people know about,” says Philip Baldwin, an LGBTQ+/HIV activist and writer from London “People are still generally very surprised when I tell them how easy hepatitis C is to cure.”
Getting this message out there is vital. Thousands of people could potentially benefit (it’s estimated around 215,000 people in the UK are living with hepatitis C; Public Health England suggests around 80,000 of these live in England, with 70% unaware they’re infected). Plus, as Baldwin adds: “The stigma around hepatitis C evaporates once people become aware of the new treatment.”
Tackling the stigma
It’s an issue close to Baldwin’s heart. Now 36, he was diagnosed with both HIV and hepatitis C in 2010, aged 24. Often symptomless at first, left untreated, hepatitis C can eventually cause chronic symptoms such as fatigue, ‘brain fog’ and abdominal pain, and lead to scarring/cirrhosis and failure of the liver. It takes years, sometimes more than two decades, for this process to begin – but Baldwin knows how terrifying that uncertainty can feel.
Back in 2010, hepatitis C treatments were interferon-based and, Baldwin explains, the therapy usually lasted “12 to 18 months, was awkward to administer, had multiple debilitating side-effects and was only 40-50% successful.
“My doctor advised me to wait and not commence the treatment, because they thought the side-effects were too severe.
“By 2015, new treatments emerged,” he continues. “These were at first rationed by the NHS and only offered to people with cirrhosis. At the end of 2016, I was offered the new anti-viral treatment. It took only 12 weeks, was taken orally, I found it to be side-effect-free and it has success rates of well over 95%.”
By spring 2017, Baldwin’s hepatitis C was cleared. While this was a monumental relief, his diagnoses had still impacted him immensely. The former city lawyer is now a full-time activist and campaigner around LGBTQ+ issues, human rights, homelessness, asylum and faith inclusion (Baldwin is a proud gay Christian). As well as doing a lot to help HIV awareness over the years, he’s now on a mission to do the same for hepatitis C.
A big lack of awareness
“I never experienced any physical symptoms. For me, the impact was largely psychological. When I was diagnosed, I knew a little about HIV, but nothing about hepatitis C. I found telling people about my HIV was more straightforward,” Baldwin explains.
“When I told people I was HIV positive, they normally had some idea what I was talking about. But with hepatitis C, I often had to completely start from scratch and explain everything – and that was very difficult because I’d had to learn about the virus myself, and I was effectively reliving it every time I explained it to someone.
“That was particularly challenging when it came to romantic relationships,” says Baldwin, who admits he felt “alienated” and “very vulnerable, ashamed and insecure… I was worried no one would love me again.”
Despite encountering stigma, Baldwin did eventually find there were supportive and accepting people out there. He recalls a “turning point” with one early relationship, where he “really learned how to love again, and that I could be loved in return”. Although it took a few years, he also found acceptance within himself, and says peer support was especially helpful.
“A number of the HIV and hepatitis C charities offer peer support, which is really important. Being able to talk to people who have faced the same challenges that you have, and overcome them, can be really empowering.”
Treatments are available
When he first got into campaigning, a key motivation for Baldwin was being “a visible example of someone who was living happily and healthily” with HIV and hepatitis C. As medicine advanced, he shifted his focus “to advocating for better access to the new treatment on the NHS.”
Thousands of people have already benefited from the new treatment – but there’s still a long way to go. Also, Baldwin knows he was fortunate to have been diagnosed early (he’d routinely been going for sexual health screenings twice a year).
“Some people are not so lucky, and their hepatitis C is only diagnosed when they have cirrhosis or liver disease,” he says. “There are also people who may have been diagnosed in the past but are out of the treatment pathway because at the time, the options were so bleak. They may be unaware of the medical advances that have taken place, they might not trust healthcare professionals, and many myths still remain around hepatitis C.”
Anyone can potentially contract the virus if they come into contact with infected blood, however there are groups which may be more at-risk – including gay and bisexual men, people who inject drugs, who received a blood transfusion prior to 1992, and who’ve had contact with unsterilised tattoo and piercing needles.
Baldwin’s message? Regular testing (you can ask your GP or a sexual health clinic about tests). And whether you are newly diagnosed or have been living with it for years, treatments are available which could help eradicate the virus – and the stigma.
“Every patient’s perspective and lived experience is unique,” says Baldwin. “However, I am sure the fear and uncertainty I encountered will be reflected to some extent in the experience of everyone who’s received a diagnosis. We need to empower people living with hepatitis C, raise awareness of the effective treatment, and find people who are undiagnosed.”
Philip Baldwin is an LGBTQ+ and HIV activist and writer (philipchristopherbaldwin.com). For more information and support about hepatitis C, visit hepctrust.org.uk