I was so excited to learn that there is a cure for HCV October 2014...and by January 2015, thought treatments would begin in UK. I have cirrhosis now..treatment naive, genotype 1b. As my health declines (neuropathy, fatigue, etc...) every month I call my liver specialist nurse to find out when my treatment begins and told to call back next month...my last call was really depressing because now the commissioners, in their wisdom have decided that my genotype should be treated NOT with Harvoni but Abbie Vie Pak plus Ribovarin...this is like a form of slow torture for me...all because of a .5% improvement on the cure rate, and it is cheaper, so, I have to under go more blood tests for Ribovirin(used to treat Ebola, some patients have to have blood tranfusions due to dangerous drop in RBC) and take 540 pills over 90 days..side effects cause a 2% drop out rate...Harvoni side effects cause a 0% drop out rate -90 pills over 90 days..
And the liver specialist nurse cannot give me any idea of when I might be treated...as they have not hired any more staff to handle the uptake in treatment...but the NHS has enough money to pay loads of commissioners who will offer a cure but at their determination and when they say, and to save money...this is world where the patient is actually the last to know what is going on regarding their own care...and why. That is very damaging to the patient.
My best care would be to receive treatment within a reasonable framework of time..(that time has passed already)...and be advised when this will happen and given a choice of treatment that will be most successful from the start.
My excitement at this new found cure is replaced by anger at the total lack of communication and compassion shown to all HCV patients made to wait in a queue because of NHS lack of foresight and greedy pharmalogical companies.