Former hep C patient, Bideford, Devon
I was diagnosed with hep C in 1993 during treatment for cancer. For several years, I refused the dreaded interferon/ribavirin hepatitis C treatment when it was offered because of the awful side effects.
Eventually, in 2004 my excellent hepatologist persuaded me to undergo 48 weeks of treatment, but I only lasted 14 weeks before my blood counts dropped scarily low. My viral load (the level of the virus in my blood) began to climb again and I was pulled from treatment.
I then focused on holistic ways of staying well, along with a lot of hope, while I waited for new, interferon-free therapies. I felt well, though tired, and seemed to be on a bit of a roll. But hep C is silent and stealthy. About 15 years after my diagnosis, I began to notice muscle aches after yoga and I began to feel more and more fatigued. My appetite reduced and food intolerances grew.
I only had mild liver fibrosis so far, but I knew that the hep C would cause more and more damage, and without treatment, further down the road lay possible cirrhosis and liver cancer.
Finally in 2014 I had the good fortune to be invited to take part in a trial my consultant was running. The drug combination was Epclusa (a mix of sofosbuvir and velpatasvir), which was first sold by Gilead for $74,760 in the US, and is even now rationed by insurance companies over there.
Epclusa wasn't available in the UK at the time, but when it was approved the company Abbvie offered cheaper drugs, so those were the ones favoured by the NHS at first - but all treatments were still rationed for those with over stage F3 liver fibrosis (the worst stage being F4). Having only F2 fibrosis I doubt I would have been offered treatment even now.
Thanks to this trial I am finally cured of hep C. However in my work as an admin of a large support group, Hepatitis C Family and Friends, I constantly see people across the globe struggling to get access to the cure because of the high price of treatment. Many people in the UK resort to buying generic versions, which while safe when bought from trusted suppliers, are not generally monitored by liver specialist teams, so self treating can be risky and scary. We need big pharma to cut their prices if we are to see hepatitis C eradicated.
We need to put pressure on big pharma to make treatment accessible to all. If they won't reduce their prices we need them to relinquish their patents, which may mean fighting them as some countries have, or we need generic versions of these drugs to be approved and routinely monitored by liver centres. Ideally the NHS would be allowed to buy in generics for few hundred pounds per course rather than the £30,000 or so they cost now.
It's important we defend patients both ethically and practically. Hepatitis C is a curable disease, that, if picked up early, with routine screening, is unlikely to have far reaching health consequences. However if left, it can lead to liver cancer and many other health issues, and eventually to liver failure, costing far, far more than the cure in every sense.