One of the highlights of my day is when I get emails from people who I have not heard from for a while and who take the time to write to me and let me know how they are going with their treatment.
Below is an email I got today from a lady in the UK who I exchanged a lot of emails with and who eventually decided to buy the API’s from Mesochem and make up her meds herself into capsules.
A lot of people still do this because it is the cheapest way of buying generic Hep C treatments and, from all the evidence I have, is just as effective as any other form of treatment. That is to say that APIs have the same cure rate as branded Harvoni and the same cure rate as licensed generics and they are about a third the price of the tablet generic meds.
So a full 12 weeks treatment with Mesochem APIs will cost you about US$400 including shipping.
Of course you have to be confident about putting the APIs into capsules however I have never heard of anyone going down that path who did not get cured. Who knows maybe self encapsulated APIs are actually better than any other treatment???
Anyway here is the email:
Firstly let me say how much your work is appreciated.
I am one of those who you steered in the right direction (to Mesochem) and as a result I am now SVR12, thank you.
You may feel like the work that needs to be done is a bottomless pit (and it is) but be assured that to every person who becomes SVR 12, you’ve given them their life back, which is better than the crown jewels.
I am in the UK and recently had discussions with my hospital’s Hep C consultant who didn’t monitor my treatment.
Despite that he’s a good guy and his team is good too, but their hands are tied by the NHS bureaucracy . I suggested to them the following 2 things:-
1. Set up a national test centre for everybody to bring their self-bought drugs for testing. That way the doctor and patient are covered for bad drugs - which seems to be the doctor’s biggest fear.
2. Produce a transparent policy for monitoring people taking generics so that the patient does not have to fear getting a negative reaction from their doctor, or putting him/her in a compromising situation.
These suggestions were largely agreed with by the people in the hospital but again the doctors are powerless to follow through on them, again because of the NHS bureaucracy.
They asked me to go to my member of parliament and suggest these things to him but I’ve already been there once already.
In addition, you may have heard that there is a drug in the HIV community which prevents people catching HIV. My doctor was all concerned about how the administration of this drug is going to be monitored. The logistics are huge.
The HIV lobby is so much more vocal than the HCV community.
I just wanted to tell you that this issue is putting the NHS monitoring services front and centre in the UK at the moment and perhaps there is an opportunity in it for HCV people.
All my best wishes,
The points that this lady brings up are important and the one that stands out for me is how the HIV community is so vocal and so effective at lobbying and getting things pushed through the bureaucracy and red tape and the HVC community is not so united and effective.
In my mind there are a few reasons for this. First and foremost is the fact that many of the major Hep C lobby groups are funded and/or manipulated by Big Pharma and its agents.
So rather than pushing for the obvious game changer, that is full access to affordable generic treatment, these advocacy groups pussy foot around and push for the governments to fund Big Pharma’s products.
Of course there is not a government Health Service on Earth that could fully fund a fair and accessible Hep C treatment at the prices Gilead and that lot of vultures want. This results in access being triaged and people having to wait years to become sick enough to qualify for treatment.
The other reason the the HIV community is more vocal and effective is that it has had a number of high profile, celebrity supporters, patrons if you like.
Think Princess Diana for a starter. All these high profile HIV supporters both lifted public awareness of the issues around access to treatment for people with HIV and also lifted the stigma that was previously associated with the disease.
Where are the high profile, celebrity supporters of Hep C?
Well I can’t think of any at all!
Of course there are plenty of celebrities who have had Hep C but they have all quietly gone and got themselves treated and cured... or died quietly without admitting that they had Hep C.
So this is one of the things that the Hep C community lacks a few celebrities with the courage to stand up and say;
“I had Hepatitis C and I am cured because I could afford the medicines but there are hundreds of millions of people who can not afford the medicines and they need to be helped!”
Sadly most celebrities are selfish twats who lack both the courage and the moral fibre to do anything unless their is something in it for themselves.
So really all we Hepsters can do is put pressure on the people who run our so-called advocacy groups to represent the best interests of the people with Hep C rather than the best interests of Big Pharma.