Back at home, a few weeks went by during which time I got over the disappointment and made the decision to focus on disease management until something new came up. Good diet, plenty of fresh air and exercise. Tasmania was a good place for all that.

Then one day a mate called me to say that he had some very interesting news. It was hush hush but he had been speaking to a doctor who told him that the Indian government had refused to grant GILEAD a patent for Sofosbuvir and that the Indian pharmaceutical companies were going to manufacture a generic Sofosbuvir which would be for sale in India for around $5 a tablet (not the $1,000 per tablet GILEAD charged), or about $500 for the three month course.

Suddenly things were looking up. Off to Google again to find out what was happening.

The Indian government’s patent office had declared that Sofosbuvir did not include enough new or innovative concepts to warrant a patent. They stated that it simply used a different configuration of known anti-virals. Indian pharmaceutical companies could copy Sofosbuvir easily because all the IT was in the patent and easily available.

(The World Health Organisation estimates that about 12 million people in India have Hepatitis C. Globally there are about 150 million people infected with Hep C. About 350,000 of those will die each year of complications arising from their Hepatitis infection.)

However GILEAD moved fast and began giving Indian companies non-exclusive licences to manufacture Sofosbuvir. This would have appealed to the Indians because it meant that they did not have to figure out any of the manufacturing technology, GILEAD would supply that. And it suited GILEAD because the Indian Pharmas would pay it a royalty. No-one knows how much but I guess it would probably be about one or two dollars per tablet. As India has over 12 million people with Hep C and if the average treatment used 100 tablets and GILEAD got just $1 for each tablet that would give GILEAD $1,200,000,000 clear profit just from sales in India. These new licences would extend to 91 countries, basically all third world countries, but no first world countries. This meant GILEAD would access about one third of the Earth’s population through India’s cheaper versions of Sofosburvir. Incidently this is also the portion of the world’s population that has the highest Hep C infection rates.

The result of this is that the world’s Hep C sufferers are now divided into countries where the treatment would cost $90,000 and countries where Hep C treatment would cost about $1,000 (not the $500 first quoted becaue the royalty deal with GILEAD pushed up the generic Sofosbuvir prices),

First world countries whose politicians and/or health and government bureaucrats had better negotiating skills soon began to put the squeeze on GILEAD so ( as I understand it) some, like France and Germany negotiated a price of around $20,000 per treatment while other countries (like Australia and the USA) still pay $90,000. Can you figure that out??

It would appear we need to get some new negotiators in the Health Department.

India Calling

So I started to research how one got the drugs out of India. It turns out that Australian law allows an Australian to bring in a three month supply of a prescribed drug from India. The drug must be prescribed by a medical doctor and the prescription must be with the drug when you bring it in.

The problem is that an Australia doctor can not write the prescription. I looked at various options including buying it on-line but it soon became clear that the easiest, fastest, safest way to get my Sofosbuvir was to go to India.

Buying drugs on-line is full of risks and a mine field of scams

I tried to find out if anyone had done with before, they probably had, but I could not find any information, hence the reason I am writing this. I was also worried, multi-national drug companies being what they are, that GILEAD would be working hard behind the scenes to plug this leak and take control of the global market and make it more difficult, or even impossible, for anyone to get cheap Sofosbuvir out of India and into first world countries. So I moved as fast as I could and booked a flight to Chennai.

Now here I will be totally honest. The trip will end up costing me around $3,000+. I have paid for that with my credit card because I do not have that kind of money hanging around. A couple of friends also helped me out a bit (thanks again).

But what are the alternative options???

Like most people I could not afford the $90,000 for the treatment. I now knew I was not going to get onto a trial and I was not going to get the treatment through the government health system. So what do I do? Do I wait around until I develop liver cancer or severe cirrhosis and get sick enough to get treatment? Or do I go to India and (hopefully) get it sorted that way? It seemed like a no brainer to me.

My symptoms were definitely getting worse. My concentration and mental abilities were showing signs of being effected. I was getting bad muscle cramping in my legs and hands, some nights laying in bed, my legs would take turns cramping up. Then there was the fatigue. But I was a long way off being at the level of sickness needed to get government treatment, and I knew that there were lots of people a lot worse off than me... but I did not want to get worse.

And to anyone reading this who is worse off than me, and I know there will be a lot, I do hope you can get some kind of treatment and that it works for you. For those of you who can not get treatment through conventional channels, I hope this story will prove helpful for you!

This entry was originally published on My Hep C Diary. Reprinted with permission.