This is for all of those on this forum with HCV who are waiting for their treatment as we head into the winter months. If you read the most recent report from NICE, all 80+ pages you will still have no idea when you will be treated.
All I can conclude from this report is that the NHS thinks it cannot afford to treat all HCV patients and NICE thinks the NHS cannot afford not to looking down the road further. It is all about investment and staff capacity to manage our treatment...neither is in place as far as I can make out.
For all of us, who are the ones suffering from this terrible disease and the effects it places on our remaining good health...we sit waiting for our cure to be offered...that email, or phone call...whatever, whenever...while an overstretched, overworked liver specialist staff treat the very sickest of us first throughout all UK. In fact, if you don't have cirrhosis or decompensated liver at the moment the NHS has no obligation to even cure your HCV until NICE publish the final guidelines.
So, I woke up this morning, I still have HCV and cirrhosis and feel...well..like all of us do with this disease....unwell, but still keep going....Its Ground Hog Day for HCV patients in UK...one of the wealthier nations in the world but we might as well live in the poorest...at least Gilead, makers of Harvoni, would treat us there for free.
It would be wrong for me to try and cheer any of us up..and getting angry has little affect on the huge monolithic bureaucratic system that operates the machinery that will eventually treat us..I feel like ' chicken licken'and the sky is falling ...soon they will have to treat all remaining HCV patients for collective depression after being made to wait so long for their treatment.
So, Unless I pay for my own treatment privately I am forced to sit and wait quietly for that treatment.
Finally, like in the movie, Ground Hog Day, I have concluded that while I wait I should try and live my life to the fullest and stay healthy through positive lifestyle choices. One day I will wake up and I will I have been cured. So, on a positive note, I am pleased there is a cure in my lifetime..
Thanks for reading this...another vent from yours truly. Art4949