Clare, Just Treatment patient leader, London
"...the high cost of the medicines meant I had to wait three years to be treated. During that time my physical health and my mental health deteriorated. I consider myself to be fortunate that I was able to fight tooth and nail for treatment - a treatment that was successful."
Clare Groves, London
"I had 3 previous treatment failures with interferon and ribavirin, genotype 1. One failure pre liver transplant, which I had in 2006, and two post. I was supposed to be treated with the new drugs (sofosbuvir) around 2014-15, then was told the funding was no longer available, that they were only treating people with significant fibrosis. I finally got treated [...] in December 2017."
Anonymous former patient, now recovered from hep C.
When drug company Gilead’s DAA drug sofosbuvir came to the UK in 2015 it was seen as a revolution in hep C treatment, curing 95% of patients in 12 weeks. Previous treatments took 6 to 12 months with a range of nasty side effects and low success rates. But at £34,983 for a 12 week course of Sovaldi (sofosbuvir), and £39,000 for a 12 week course of Harvoni (sofosbuvir plus ledipasvir), Gilead’s eye-watering prices caused shock and outrage.
Although the drugs were approved by NICE, the body which assesses drugs for NHS use, the NHS took the unprecedented step of rationing treatment as a cost saving measure. Only the most ill patients could access the drugs. Patients like us were told we had to wait to get even more sick before getting access and were forced to fight for the medicines we needed.