Yesterday I received a comment on a recent post from my Blog that was a little distressing. This blog post of mine was shared in a Hep C Facebook book group that I am a member of and one of the group members got rather cranky and accused me of using the group and my blog to further my “business” of supplying generic Hepatitis C medicines.
Looking at the offending post I can see how, at first glance of that post, a person might see it as me “self-promoting” and take that position even though if one looked a little closer at what I do they would easily see that this is not the case.
Anyway the comment was a little upsetting so I thought I should explain my position in more detail and more clearly so there will be fewer misunderstandings of this type.
Firstly I would like to make clear that I do make an income from helping people access reliable generic Hep C medicines. I make this income by charging an optional fee for facilitating the whole process from initial enquiries to delivery. Part of that deal is that I make myself 100% available to people throughout the treatment period in case there are any issues that they need to discuss during treatment; issues that my general knowledge might them help with.
Apart from actually organising the supply of generics I also supply general information about accessing Hepatitis C treatment and will happily discuss various options that will work for people in different countries. For example if it is easier for a person to travel to India or Thailand or Australia or some other country to buy their treatment then I give them contact details of reliable suppliers, good hospitals and even good hotels.
I do not charge anything for providing this information or general discussions about treatment options, which represents about 50% of all emails I get.
Another thing I have been over the past year doing is working with doctors, academics and other activists to generate data sets for scientific papers that compare the cure rates of generic treatment with treatment by branded names. This has resulted in several published papers and will have profound effects over the next 12 months. Whilst I am not the prime mover in these projects I do spend about one day every week working on these projects.
I also work with other Hep C activists around the world figuring out ways of improving access to generic treatments for people in various countries where the government makes access to generic medicines difficult.
I also do quite a bit of work trying to get Hep C stories into the main stream news media to increase local and global awareness of the issues that surround Hepatitis C and its treatment.
And then I write my blog, which I hope provides useful information to people with Hep C around the world.
Because I am not sponsored by Big Pharma, like the World Hepatitis Alliance and many other activist groups, I do not get a wage or other financial help. But I am independent, my opinions are my own and I have no biases (I hope).
All in all I spend more than 40 hours per week working on Hep C related projects.
As I write this I am on a week’s holiday with my son but every day of two I must spend at least 4 or 5 hours at an internet café keeping up with emails.
So I charge a fee so that I can survive.
But it is an optional fee. I explain this fact on my website and in all the information sheets I provide. If a person is in a difficult situation financially then they only have to ask me and I will remove the fee.
Simple as that.
Because I believe in transparency and honesty I will also make completely clear the details of the fee I apply to my work.
Depending on the exchange rate of the day my fee is about 20% of the cost of the meds.
So, for example, at the moment generic Harvoni out of India costs AUD$1,000 for a 12 week treatment, including shipping, then I add my fee of AUD$200, so the total price, including delivery and all other required documentation, will be AUD$1,200. From what I know about pricing of Hep C generics around the world this is a fair price.
If you add to that the fact the having me facilitate the whole process gives a 100% assurance of the quality of the medicines and the integrity of the supply chain then it is a fair thing.
And as I said if a person is tight for money then they only have to ask me and I will remove my fee. I do not know that I can be fairer than that.
I would love to be able to supply the generic treatments for free, but it is not possible.
So yes I guess you might call it a business, or you might not. Not many businesses give their customers the option of removing the profit margin from the cost of a product.
