All around the world the resistance by the medical “Establishment” to generic treatment of Hepatitis C is being slowly eroded by the reality of results, of cure rates.
I recently met two students in London who are studying a post-grad course in social change at one of Londons most prestigious universities. For their final project they are studying inequality relating to access to healthcare - they are specifically interested in Hep C and access to generic treatment in the UK and around the world. What happens in the situation when people can’t access Hepatitis C treatment on the NHS (or via their public health service in countries outside of the UK).
They’ve asked me to put it out that they would be grateful if anyone reading my blog would be willing to complete the short questionnaire about their experience with generic Hep C treatment. This questionaire can be done completely anonymously and the information won’t be sent on to any third party.
This is a really important project with global long term implications so if you have done generic Hep C treatment, are presently doing generic Hep C treatment or are considering doing it please use the link below and fill in the form. This is not only for people from the UK but for everyone everywhere doing generic Hep C treatment.
Meanwhile in the UK things are slowly moving along. I had a couple of emails from folk in the UK this morning. Both have just completed generic Hep C treatment.
I just wanted to check in with you since I have not been in touch since I started my generic Harvoni treatment in March, which you kindly facilitated for me.
The treatment itself was pretty rough since I seemed to have a cold, gum infection, cough or various aches and pains throughout the 12 weeks and my energy levels were all over the place. The note on your blog about taking time out to rest was very helpful advice since it does not usually occur to me to do that.
Two positive bits of news; firstly that I had results back last week from a blood test I organised privately which showed the virus was undetectable after 10 weeks and I just hope it stays that way this time.
Also, I had an appointment with my NHS hepatologist at one of the big London hospitals just before the end of my generic Harvoni treatment. I decided tell him then that I had been taking Harvoni. (Based on what I read on your blog I had not told him when I started, since it seemed to me it could compromise him and potentially affect future NHS support for me).
He is a good guy though and was very supportive; he knows about the Buyers Club which he said was completely reliable. He mentioned that several patients of his were already using the generic approach and that ‘of course’ he wished everyone would - although I assume he is probably not allowed to directly recommend it by law.
He immediately agreed to continue monitoring me for the next 12 weeks and has booked me in to his special clinic for what I guess may be the first wave of UK generic Harvoni treatments.
I thought you would be interested in this information, which may encourage some of the HCV (Genotype 1) sufferers in the U.K to take the initiative…
Thanks and best wishes to you
Long time no speak.
Was waiting to get the final results from my Doctor yesterday before emailing you.
Finally i got the news i was hoping for. HCV viral load undetectable at the end of week 13 after finishing treatment.
Thank you again for all your help in making this happen.
For all hiv+ people out there, living under the shadow of their HepC diagnosis, i would strongly advise to take matters in their hands and get treatment asap. Generic drugs DO work.
As a 50 year old gay man I have a relatively healthy lifestyle. I am a non smoker and i very rarely drink alcohol, i exercise a lot and have a very healthy diet.
I was diagnosed with Hepc (Genotype 4) 10 years ago on top of the hiv diagnosis 5 years prior to that. When i was first diagnosed i was given straight away the option for treatment with Pegylated Intrerferon/ Ribavirin. Unfortunately it didn’t work.
As the years went by i was becoming more concerned about treatment. To my despair nothing was available. The only thing that my Doctor could do was to monitor my health. Even though physically i was in good condition, mentally it was becoming very hard to deal with.
During a routine hospital visit last year, i enquired about treatment on the NHS.
I was shocked to find the cost involved. It was becoming obvious that my chances of getting treatment on the NHS were almost non existent. At that point my consultant suggested i should look into the generic drugs that were becoming available on the Indian pharmaceutical market.
Having looked online i was completely overwhelmed. Not only by the amount information but also about the risks and dangers involved in ordering online. Considering this is not something you can discuss openly with others, i wasn’t sure where to find a reliable source. That is until i stumbled across your blog. After reading it several times i decided to get in touch with you. Your reply and information you provided was very reassuring.
My next step was to have a discussion with my consultant. Having decided that the best course of treatment, in my case was 24 weeks of Sofosbuvir - Ribavirin, i went ahead to order the meds. I was impressed how quickly the delivery was. For the last 12 weeks of the course i also added a course of 12 weeks of Daclatasvir. The cost of treatment was just under £2000. Compared to the risks involved in having to wait treatment on the NHS, i would advise anyone to go for the generic drug option.
I consider myself lucky to have had the full support of my consultant at the Hospital. Once i started the medication the results were very encouraging. The 2nd week blood tests revealed the viral load was already undetectable. Even though Ribavirin was hard to cope with i managed to get through the 24 week course. Despite my Hemoglobin was 110 at its lowest i still carried on cycling to work and the last 2 months of the treatment i also went to the gym on a regular basis.
Yesterday my Cd4 count was 1100, Hemoglobin 144, ALT 16 and HCV undetectable.
Today i don’t have to worry again about HepC for the rest of my life. I hope it works for you too
Thank you again for all your help.
All the best