I turned right out of the hospital complex and walked around the southern edge of the building. Confusion, disbelief, and a sense of fatigue washed over me. I approached the main road. I walked a little further down, but there were no buses or taxis, just relentless congestion. I sat down on a bench, breathed deeply, and tried to collect my thoughts.
I was diagnosed with HIV and Hepatitis C in 2010 and had been informed at the end of last year that I would start the Hep C treatment this summer. I was finally commencing treatment for my Hep C after years of waiting – this was a massive relief. Sofosbuvir, the new treatment, lasts only three months, has no side effects and is almost 100 % effective. It replaces treatment with interferon, which took up to 18 months, had many side effects and was often ineffectual. I had prepared questions to ask my HIV and Hep C specialist about the treatment. I assumed my appointment with my specialist would be quite straightforward. Instead, I was told my treatment was going to be delayed because the NHS is restricting access to the new and costly treatment. My specialist tried to break the disappointing news to me gently, but I was very upset.
I am saddened by the delay in the provision of Hep C treatment in the UK. Of the 103,700 people living with HIV in the UK, nine per cent are co-infected with Hep C, many of them gay men. It is unfair that we have to cope with Hep C without help. We have a treatment which can cure Hep C, but the treatment is being withheld by the NHS for funding reasons. I think this is disgusting. The NHS needs to come up with an effective plan for treating the 215,000 people living with Hep C in the UK. Those who are diagnosed with Hep C need to be treated quickly. Prompt treatment improves quality of life and prevents onwards transmission. Eliminating Hep C in the UK is a real possibility, but only if the NHS confronts Hep C head on.
The NHS is limiting the number of patients who can access sofosbuvir. The National Institute for Health and Care Excellence (NICE) provides national guidance on healthcare matters. The NICE Guidelines contain a clause that patients should be treated with sofosbuvir only where there is an acute need. NHS England has used this as the basis for rationing sofosbuvir. The NHS is no longer prescribing interferon, except as part of a treatment combination for those who have Genotype 3 Hep C. My Hep C is Genotype 1, where the recommended treatment is sofosbuvir.
The UK has been split into over 20 Operational Delivery Networks (ODNs). ODNs manage treatment decisions on Hepatitis C, including how sofosbuvir will be prescribed within that ODN. The ODNs were established and developed at different rates, but the aim is to provide uniformity in the treatment of Hepatitis C nationally. The Grahame Hayton Unit at the Royal London Hospital falls within the North East London ODN. Each specialist within this ODN has been told that they may only treat three patients per month with sofosbuvir, those with cirrhosis or fibrosis going to the front of the queue. Patients can be prioritised, where there is not cirrhosis or fibrosis, only in exceptional circumstances. For example, my specialist was able to treat a female patient with sofosbuvir because she was going to undertake fertility treatment, but had to get sign off in discussions held at ODN level for this. Generally, being co-infected with HIV, which causes Hep C to accelerate, is not urgent enough to trigger treatment.
I am not going to be treated this year and it may be as long as several years before I can commence the Hep C treatment. My specialist currently receives more than three new patients, co-infected with HIV and Hep C, per month, meaning that the queue is getting longer. There is no plan for working through the patients who do not have cirrhosis or fibrosis. If I was working my way up a waiting list at least I would have some certainty. Furthermore, if other specialists within the North East London ODN have a high number of patients with cirrhosis or fibrosis, my specialist may lose some of his three monthly slots, as they may be distributed amongst other specialists in the ODN.
I am once again in a treatment limbo. The view of my specialist is that the three patients per month quota will increase, but this is not guaranteed. For most people it is not an option to undertake the treatment privately in the UK, the treatment costing in excess of £30,000. It is a temptation to do the treatment abroad, where it is a fraction of the cost. It is sad that the NHS is letting down patients living with Hep C and, in particular, gay men who are co-infected with HIV and Hep C. NHS England tried to restrict the provision of Pre-Exposure Prophylaxis (PrEP), which can prevent the transmission of HIV, in March of this year. Limiting access to sofosbuvir seems like another policy which is ill conceived in light of the health needs of gay men.