Telling People

To Tell or Not to Tell?

When you first learn that you have Hepatitis C the issue of whether or not to tell people is a big one. After I learned that I had Hep C it was the next thing for me to consider. It was a vexed question because according to the Hep nurse most people kept their infection secret due to a perceived stigma associated with Hep C infection and its connection to drug use and jail time.
My wife and I discussed it and initially decided that we would tell only immediate family because there was that very small chance that they might have contracted it.

However trying to keep the disease a secret seemed problematic to me simply because I regularly had a glass of wine with friends in various social situations I would have to decline the wine and that would naturally lead to an inquiry as to why I was not drinking.

Here I could either tell a lie or tell the truth.

I decided it was much simpler just to tell the truth so the next time I was with friends and the bottle of wine came around I explained that I had Hep C and could not drink alcohol. Some people knew about Hep C and some did not, so there was a period, for the next couple of weeks, when I did a lot of explaining. In the explanation section I explained that it was almost impossible for me to transmit the virus to anyone in a social situation and I also decided, when the question was asked “How did you get it?” I would simply say that I used intravenous drugs when I was 19 and 20. Really the truth is the simplest and easiest course.

Once that period of telling and explaining was over I settled down to drinking bottled water and no-one seemed to have decided to ostracize me or condemn me and  my social life went on as usual. The only real change was that I was always the designated driver!

In the mean time one of my sisters contacted me to tell me that a mutual friend, T, had been diagnosed with Hepatitis C a few years back. He had kept it secret, telling only a few very close friends. My sister told me that he had managed to get onto a trial of a new anti-viral drug that had no side effects and a 98% success rate. He had affected a total cure after a three month treatment. She gave me T’s phone number and I rang him immediately.
T had moved to another city and, whilst we had been close friends for many years, we had not spoken for quite a while so after a bit of friendly banter I said, “So I hear you had a bout of Hep C.”

There was a stunned silence on the other end of the line, then,

“How did you know that?”
He thought his infection was a very well kept secret, which I suppose it was. I explained to T that I had recently been diagnosed with Hep C and that my sister had passed on the news of his cure. After the initial shock T loosened up and was very understanding of what I was going through. He ran me through the process of his disease and cure. The new drug was called Sofosbuvir, a drug manufactured by the USA based pharmaceutical giant named Gilead. Sofosbuvir had been approved for use in the USA and K had heard about trials being carried out in Sydney’s Saint Vincent’s Hospital to get it listed in Australia. He had managed to get onto the Sofosbuvir trial and told me that it involved taking just one tablet each day and that he had experienced no side effects at all.
T explained that the drug was available in the USA but very expensive. A treatment would cost about $90,000 and that it had not been approved by the PBS (Pharmaceutical Benefits Scheme) for a government subsidy that might make it affordable for the average person.
He suggested that I contact the doctor running the trial, Dr C.
T said he had heard there was another trial coming up specifically for people with Hep C genotype 2. He told me to try to get on that but if I couldn’t get on that then to get onto any trial that was going. He emphasized that it was hard to get on the trials because there were more than 250,000 Australians with Hep C and they all wanted to get the new drug.
T said I would need to convince the doctors that I was reliable and not going to engage in any behaviour that would re-infect me. He said that because a lot of the people with Hep C were or had been addicts there was the chance they would have a relapse and start injecting again which would screw up the results.

The big problem was that I lived in Tasmania and the trials were in Sydney.

Then one day a friend, a journalist, called me to say that he had some very interesting news. It was all 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.

And here I would also make the point that because I did not hide the fact that I had Hep C from my friends and family people were able to help me.

All these new bits of information came to me because people I knew shared information that was helpful to me.

Never underestimate how much people care about you and how much they will want to help you… if you give them the chance!

People that you know who reject you because they discover that you have Hepatitis C were never true friends and are not even worthy to have as acquaintances

So my next move was off to Doctor 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 750,000 of those will die each year of complications arising from their Hepatitis infection.)

However GILEAD moved fast and began giving Indian companies non-exclusive licenses 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 Pharmaceutical manufacturers would pay it a royalty. No-one knows how much the royalty is 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 $2 for each tablet that would give GILEAD $2,400,000,000 clear profit just from sales in India.

These new licenses 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 Sofosbuvir. Incidentally 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 Hep C treatment would cost $90,000 and countries where Hep C treatment would cost about $1,000 (not the $500 first quoted because 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 hepatitis cC 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!

April 2015
We are attending the annual croquet day, a day of silly hats, serious croquet and much merriment ( and wine). I bump into a friend I have not seen for a while. He notices I am not drinking and I do the tell/explain thing. He knows about Hep C and tells me a mutual acquaintance, Z, has had it for years and had done the Interferon treatment without success. He tells me Z keeps his infection secret but he is telling me because he believes Z will be interested in hearing about the India thing. I tell him to let Z know what I’m doing and to drop in and have a chat. But I never see Z.

May 2nd
We went up to Byron Bay to stay with my mother and sister and brother-in-law for ten days before I leave for India; after ten days of surf and sunshine I am feeling pretty good but I can definitely feel the virus in me now, feeling a bit bloated in the torso and somehow just aware that things in my body are not quite right. Glad to be heading home to Tasmania and glad that I have initiated the India trip and will be able to do something proactive to try to kill the virus off.
The flight back to Tasmania is long and tiring and we know that immediately we get back home we will only have time for a quick rest and then off to the annual Poetry Night, of which I am the MC.

I am to read a poem in honour of one of our close friends who I mentioned earlier who had liver cancer. He has died.

We stop at the fruit shop on the way home from the airport and bump into Z’s wife, who I have not seen for years.
A strange coincidence.
She immediately wants to talk about Z’s hepatitis C. She tells me that M told them about our conversation at the Croquet Day and she and Z had been talking about it. She say that Z (unlike me) has no idea how he got Hep C and that (unlike me) he never shot up drugs. She gave me the impression that she thought the less of me for having been a drug user 40 years ago, but that might just have been my imagination?

She mentioned that Z did not want anyone to know that he had Hep C and asked that I respect this. She then went on to explain that Z had undergone the Interferon based Hep C treatment some time ago and that the side effects had been terrible “like Chemotherapy” she said. The worst thing was that after almost one year of treatment at the end the treatment Z still had Hep C.
She also told us that she had not contracted the virus even though they never used protection during sex, which confirmed what the nurse had told my wife and I.

May 4th
Only ten days before I leave for India. Now I start to worry, wondering if I have done the right thing? Have I just wasted $3,000? What if I get to India and cannot get a doctor to prescribe the drug for me? What if I go to India and come back with fake tablets? It happens often enough.

I went to my GP today to get a final blood test and have a chat. He was very supportive and reaffirmed how important Indian pharmaceutical companies had been in reducing the cost of HIV drugs in the 1990’s. My GP worked in an AIDS clinic in Africa during the early 1990’s and he told me how, because of the high cost of the HIV drugs then, getting HIV was basically a death sentence for most of his patients. Then the Indian government had decided to ignore the patents on HIV drugs and started manufacturing and supplying cheap HIV drugs for India and also its African neighbors. My doctor said that all of a sudden his clinic was able to help people with HIV. This continued for a couple of years while the big multi-national drug companies put more and more pressure on India to stop supplying the cheap drugs. Then pressure was put on the particular African country my GP was working in. The government was told either it stopped using the Indian generic brands or all its funding from the World Health Organization would be stopped. So the generic brands were stopped. Suddenly the Clinic had no access to the cheap Indian drugs and people started dieing again.
According to my GP thousands and thousands of people died before pressure from powerful individuals and organisations reversed the process and the India generics were allowed back into Africa.

By strange coincidence, again, as I was walking to the doctor’s surgery for my final blood tests I bumped into Z’s wife again. That was too weird, to bump into her twice in three days when I have not seen her more than four times in the last seven years.

I had been thinking about Z as I drove in, thinking about his situation and I mentioned this to her. I told her I would be happy to bring back an extra treatment pack for Z if I could but she told me that he had seen the doctor last week and been informed that Sofosbuvir was going to be approved by the PBS in June and that Z should be able to be treated because his health was pretty bad and because the Interferon treatment had failed. I hope she has got the correct information.

May 6th
A week until I leave for India. Jan and I worrying a bit about whether we had made the right decision as the fare and other costs will have eaten most of our savings. I’ve only booked to stay a week there and we worry about if that will be enough time to find the right doctor, the right pharmacist and get the script. I guess it’s buyers’ remorse because really there is no other choice. The Abbott government is cutting back on medical subsidies of drugs, so a lot of people with cancer and other chronic health issues are going to suffer because they are not going to be able to get the latest, most effective medication. At least, thanks to the Indian government having enough balls to stand up to the Big Pharmaceutical companies, I have a choice, an affordable choice. I know Z’s wife said that if he could not get on the Sofosbuvir program soon they might have to sell their house to get the $90,000 for Sofosbuvir. I told her she should just get over to India but she said she had heard that the Indian option was not reliable. That’s certainly the opposite of what I heard.

May 7th
Went over to the pub for dinner tonight, there was a good crowd of locals there and the word had got around that I’m off to India next week. Everyone wished me well and hoped that everything worked out. I find it interesting that so many people are scared or ashamed to admit that they have Hep C. Everyone I know knows that I have it and how I got it and everyone has been really supportive and kind. It’s great living in such a supportive community.

May 9th
Been battling with exhaustion the last few days and having to an hour or two of sleep mid morning. I can feel that damn virus inside me, slowing me down. I bleed a lot easier from any little cut now, bleed easier and longer. I’m also getting nose bleeds now. Every time I blow my nose I end up with a glob of blood in the handkerchief. Jan reminds me that my blood is dangerous and that I have to be certain I clean it up. She uses bleach on my handkerchiefs.

Glad that I have got the trip booked and there is a good chance I will be rid of this thing in a few months.

One of my neighbours told me that there was a big advertisement in the local newspaper about Hep C while we were up in Byron Bay. I’ll have to see if I can find it

May 10th

I’m really noticing that I am bleeding too easily now, the slightest scratch just bleeds and bleeds. Glad I am booked for India this week.
Last night I spend a bit of time Googling along a few different keyword lines and came across an Indian site called This is a company based in Mumbai that sells all of India’s generic Sofosbuvir drugs, mostly those licensed by GILEAD. They sell them mail order and they can be purchased by anyone with a prescription. You can also just visit their office in Mumbai and buy the Sofosbuvir over the counter for cash but again one needs to have a prescription with them.
Their prices, US$1,500 for a 12 week course, seem a little higher than the “street price” but that is only on here say because I have not been to India and don’t know the actual price. Even at US$1,500 its a lot cheaper than the $90,000 that the same 12 week course would cost in Australia or the USA. I guess if one can get a co-operative doctor in India to write the script there would be a way of doing the whole transaction without having to fly to India.
I guess I will have a lot more answers this time next week.
(Please note: since writing this I have received information that is not to be considered a reliable supplier and I do not recommend them. Because I have received emails from many people in countries where the income is such that they can not afford the trip to India, but could afford to purchase the Sofosbuvir by mail order, I am trying very hard to identify a reliable and trustworthy mail order supplier. I am advised that they do exist and should have more details soon. I will post when I have this issue resolved)

May 11th
I have just read a report on the annual costs to the Australian health system of Hepatitis C. At least $300 million per annum, over ten years this is $3 billion minimum.
As there are about 300,000 people with Hep C in Australia the Government could save at least $2 billion dollars by setting up an easy way for people to buy their medication from India. It would not take a lot of imagination to figure out an effective vehicle through which this could occur. It simply needs a couple of doctors hired in India to write prescriptions for their Australian patients, whose details they could receive by email and then have a Skype consultation then write the prescription.
Then a couple of people to buy the generic Sofosbuvir from one of the companies manufacturing it there and organise it to be shipped direct to each individual person with Hep C. Apart from the savings to the Australian health system it would also very quickly end the suffering of 300,000 people now suffering the effects of Hep C.

For the rest of this story please go to My Diary link on the home page.


Please Note: Greg Jefferys Blog is not intended as medical advice but is a record of Greg Jefferys’ experiences in treating his Hepatitis C with Generic Sofosbuvir acquired in India