30th June 2015
Well my little flu based rant yesterday annoyed a few folk, some of whom I did not mean to annoy; but I do confess that I can be an annoying person. I guess one should not write when under the weather... Oh well I did and I have to apologize for an inaccuracy, which I have corrected in the text from yesterday.
Hepatitis Australia has written to me pointing out that they did reply to a Facebook post I made on their Facebook page in May. They replied with quite a long email, which may or may not have been a “form” reply. When I did send them an actual email in reply Hepatitis Australia did not answer me. So I am sorry to Hep Australia, I guess I did not think of a Facebook post as an email, my error.
I got another serve from another Hep C advocate who I have a lot of respect for. I responded in some detail about the reasons for my rant. I include an excerpt from that email below:
I have nothing but praise for your organisation and yourself however my comments were the result of a long ongoing conversation with a guy with Hep C in Canada who was actually given false information about bringing generic Sof/Rib from India into Canada by both of Canada’s main Hep C groups. He was told it was illegal, that it would breech Canada’s patent laws and that he would risk jail.
This guy is pretty tenacious and, after we talked about it, he did some digging around. He contacted the relevant government bodies and was given written assurance that he could bring the Indian generics into Canada, not by courier but only on his person and only with a prescription. He did further digging around and found that one Hep C group received $20,000 p.a. from Gilead and the other $10,000. I have no problem with people getting and needing funding however it should be transparent. It is the same in politics, people rarely donate to
political parties without expecting some favours in return. Some politicians can resist the pressure for favours, others can not.
On a related but similar theme I have received a number of emails from people (in Australia) who have approached their doctor for a prescription to get the generics and have been told by their doctor that it is illegal. In Australia this is so totally not true. Now I am not saying that the doctors are lying, they are just misinformed. There is a lot of misinformation floating around and a load of bad advice.
The realities are simple. Indian generic sof/rib treatment is safe, affordable and reliable IF it is purchased from a reputable supplier and made by a licensed manufacturer. Advocacy groups should be aware of their particular country’s laws for importation of medicines for personal use and have an information sheet providing clear guidance on this. Not advocating that people should do it but making it clear for people who decide to follow that path. They
should also have an information sheet of Gilead licensed and FDA approved manufacturers with contact details. Because there are rip off merchants out there and desperate people are going try to get the meds that will save their lives and if we can steer them away from the fraudsters and toward reputable suppliers we are providing them a good service.
Even if Hep C advocacy groups do not feel that providing such information is in
their brief they should NOT be spreading false or misleading information and generating fear.
On that line I would like to add my own experience with ’donations’ and politics. Some years ago, when I had a lot more money than I have now, I donated cash to a local politician. He was a good man and I gave him the money because I liked him. I did not expect any favours... but I did get them. I was able to get meetings with government ministers who I could never have met otherwise. I had access to him more or less when ever I wanted. There was nothing illegal but if someone gives you money you will do them favours, they will have your ear. If they take you to lunch a few times a year, or pay for you to go to a convention in Europe you can bet they have got your ear. I mean no disrespect to anyone and I am sure most people in the Hep C world work with great dedication and have great convictions and ethics and could not be bought off by Big Pharma at any price.
