Saturday 28 July marks World Hepatitis Day.
I was diagnosed with hepatitis C in 2010, when I was 24 years old. I cleared the virus in March 2017, when I was 31. The fear that my hepatitis C would develop, as well as the stigma associated with the virus, was a continual factor during the second half of my 20s. This World Hepatitis Day, I am celebrating 16 months of being hepatitis C free. I was cured because of medical advances and was not facing the same future when first diagnosed. I am now healthier than ever and feel like I have entered a new chapter in my life.
It is estimated that there are 214,000 people living with hepatitis C in the UK, with approximately half of these not diagnosed. The new, direct-acting antiviral treatments first became available in the UK to patients with fibrosis or cirrhosis (hardening and advanced liver damage) in 2015. For several years the treatments were rationed and only people with significant hepatitis C progression could access them. As my hepatitis C was diagnosed early on, my liver was very healthy. Finally, at the end of 2016, I was informed that I would be starting treatment.
New treatments last only 8-12 weeks, are largely side-effect free, taken orally and have cure rates upwards of 95%. Previous treatments for hepatitis C were interferon-based, lasted up to 48 weeks, had debilitating side effects, required frequent injections and had an overall cure rate of less than 50%. A deadly virus can now be cured, with medications that are easily deliverable. Now the greatest challenge is finding people who are undiagnosed and living with hepatitis C, or those diagnosed many years ago and lost to follow up.
Hepatitis C disproportionately impacts disadvantaged and marginalised groups, such as people who inject drugs (PWID). It is estimated that two in every five PWID are living with hepatitis C. Hepatitis C can be transmitted not just by sharing needles, but also through shared water, filters or spoons.
Prison populations have high rates of hepatitis C, due to unsafe injecting and tattooing. The national blood-borne virus (BBV) opt-out policy, which includes testing for hepatitis C, was implemented across the prison estate in April 2017, following pilots in 2015. The implementation has varied from prison to prison and whilst relatively high numbers are offered the test, the numbers actually tested are somewhat lower. There is also confusion about hepatitis C treatments, with many PWID and prisoners, in particular, unaware of recent medical advances.
Other groups with high rates of hepatitis C include South Asian and Eastern European populations, with infections often occurring due to unsafe medical or dental care, as well as non-sterile shaving and barbers equipment. A Muslim faith leader, who acted as a witness to a recent Parliamentary inquiry on hepatitis C, stated that within the South Asian community there was the misconception that hepatitis C was only a “drug user’s disease." It was suggested that hepatitis C testing or advice could be offered in mosques at Friday prayers, which have high attendance figures.
I want to emphasise that there are many routes of transmission for hepatitis C. Although some groups are at greater risk, stereotyping is unhelpful. Tattooing and body piercing, especially if this took place abroad, is a potential source of transmission. Men who have sex with men can become hepatitis C positive, due to the greater potential for blood-to-blood contact during sex. People may have become hepatitis C positive via contaminated blood products. Since September 1991 all blood is screened for hepatitis C in the UK, but cases are still emerging from blood transfusions prior to 1991.
When I was diagnosed with hepatitis C I was working as a lawyer, having completed a degree at Oxford a few years earlier. My diagnosis came as a complete shock. Anyone can get hepatitis C. Labels do not apply. I would encourage everyone to think carefully about hepatitis C and consider getting a test. Testing is available from all STI clinics, GP practices and some third sector organisations.
Please reach out to The Hepatitis C Trust if you would like more information. Their helpline is: 020 7089 6221.