21st of June 2015

Well today might mark a new stage in the whole Hepatitis C treatment narrative. Our local newspaper The Sunday Tasmanian has done an in depth story on my journey with Hep C and the whole frustrating treatment dilemma facing folk with Hep C. The medication is out there but too expensive for most folk to access.

I am hoping that the Sunday Tasmanian story will get some traction in the National and International news media and that it will stimulate some serious debate about prices and access to the new generation of Hepatitis C drugs and treatment options.

And hopefully that will cause the big international pharmaceutical companies to re-think their pricing policies and make the drug available to everyone who needs it.

http://www.themercury.com.au/news/tasmania/liver-patients-given-a-shot-at-life
24th June 2015
Well I have not written anything here since Sunday because I have been so busy answering emails. I am getting 50 or more emails every day from people wanting to find out more about getting the Indian generic Sofosbuvir. I have made it my task to answer every email personally rather than just sending out a pre-written response. Occasionally I miss an email so if you do write to me and do not get a reply please just write again because I do occasionally miss an email through the day. I will write back.

Today I received my first email from someone who had followed my path into India and returned home with his medication. He wrote that he spent 8 days in India and returned home with the medication with no problems! Below is an extract from his email.

Hi Greg,

Just got back from India. I was there for about 8 days. I Brought all the medicine back without a problem. I did find out though from the Fibro Scan that 48% of my liver was damaged. The Doctor wanted to put me on Peg Interferon along with the Solvaldi and Ribavirin.   However, I didn't want to do the Peg Interferon. The side effects seemed to intense.

He understood my concern and said that he preferred that I do the triple therapy - due to my level of Cirrhosis.  By not doing the Peg Interferon I have to go at least 24 weeks.

I hope I made the right decision.

Due to the damage in my liver, I also had a liver CT scan done to make sure that there was no Liver Cancer. I was clear, but he wants my Doctor here in the US to monitor the levels in my blood and test to make sure it doesn't appear -- just in case it was to small to detect.

So I have to do the Sofosbuvir and Ribavirin and then I plan to go back for more test and to get the Harvoni which I will need to take for another 12 weeks, whew.

He said in quite a few cases the Hep C did return after the initial treatment without the Peg Interferon. Which is why he wants me to come back for Harvoni. Which may become available in India within the next 3 to six months. It is the better option for Genotype 1A  plus less side affects.

The cost of all my blood tests was around a little over $100 US in India compared to $1200 in the USA and it took 2 hours for the results instead of the 2 weeks it took here in the USA to get those same tests back.

The cost of the CT Scan was $120 compared to over $1200 in the US.

The whole trip cost about $4,500 compared to the $170,000 for the medicine in the USA not including the blood and liver tests.

I took back  MyHep plus Ribavirin.   The Ribavirin is calculated by weight.

I went to Fortis Hospital Mohali in Chandigarh (North of Dehli) for all my test and the doctor there was great. His name is Dr. Mohinish Chhabra. One of the leading Doctors in the field. There is a You Tube video that is attached here: http://www.youtube.com/watch?v=dmMfEUuQNKM

One of the reasons I went to Chandigarh is because it is a very clean city, well planned city and is comparatively easy to get around. When booking hotels its better to go to the Hotels directly for the best prices.

I think it is imperative for people, if they can afford it to get the FibroScan done before treatment. It was affordable in India.

BTW, I don't know how I got Hep C.   I have been a vegetarian for 31 years and do not smoke, drink or use drugs

Lets get healthy, all the best and all love,

Jim

Please use this information to help others.

P.S. Thanks for your blogging it really did help me in my decision to go to India for the treatment.

Jim has kindly offered to help anyone who wants to replicate his trip, particularly residents of the USA. Please email me and I will forward you his email address.

Ultra Sound Scan, Fibrascan, CT Scan.
Being a novice in the world of liver scanning I am a bit confused about the Fibrascan verses the other scans.
I went and had my liver scanned by ultra sound this morning. I have yet to read the doctor's report by the actual operator of the scan said that apart from some minor calcification nodules there was no sign of any problems with my liver, no lesions or tumors. Yet my fibrascan said I was borderline F4, meaning very close to cirrhosis. The CT scan agreed with the ultrasound, not the Fibrascan.
Yet there seems to be a lot of reliance on the Fibrascan as an accurate diagnostic device. I don't know!

Professional insecurity or is it pride or is it fear or is it ignorance?
I have been getting a lot of feedback from folk who have either started their treatment with Indian generic Sofosbuvir or are planning to. What is interesting is the amount of negative feedback some are getting from some health care professionals, which contrasts with the very strong support others are getting from other health care professionals. The reoccurring theme is the concern that the medications are fake or flawed. Some people in the medical fraternity do not seem to realise that about 40% of the meds that they prescribe every day are made in India and the rest are probably made in either China or Brazil.

25th June 2015

The cost of Hepatitis C.
Tomorrow I should get my viral load results back. Of course I am hoping for a great result, even though I am not certain what a great result would be. As I wait I am kind of reflective. The newspaper article got a little national news attention but not much. The papers and the politician both are more interested in suspected terrorists lurking in dark shadows than a disease that will kill about 1,000 Australians every year and cost the Australian government more than $500,000,000 every year. And all that without even considering the personal cost to 250,000 Australians who have Hep C, the debilitating suffering that chronic Hep C brings. Loss of employment, loss of health, loss of energy. And yet today the disease could be utterly wiped out within a year or two, faster and cheaper than the removal of TB or Polio. The medications are  available and accessible. The only thing preventing the eradication of Hep C in Australia is the will to do so by our government.
For some reason the media is just not interested in Hepatitis C even though it is killing one thousand Australian each year.

25th June 3 a.m.
I woke about 2 in the morning and lay in bed trying to get to sleep, thinking about the dream I had just had. I dreamed that I was at a party being given by the public relations director of Gilead. It was a jolly time and everyone was having fun. At the end of the party he gave everyone one full bottle of Harvoni tablets. I walked away looking at the bottle. I had no need for these because I was Genotype 2 and pretty much cured. I thought of all the people with Genotype 1 who have contacted me over the last month and wondered who I should give it to. I figured (in the dream) that if they did 24 weeks of Sofobuvir and Ribavirin and finished off with a month of Harvoni they would certainly be cured. Who should I give this jar of life saving tablets to? Eventually I narrowed it down to a Bosnian man in his early 30's. His wife had been writing to me since I first arrived in India. They had just conceived a child and she was a few months pregnant when they found out that he had Hep C. Neither had been drug users but they had both lived through the horrors of the Serbian / Bosnian war in the 1990's. She explained to me that there was blood everywhere in those days from the Serbian artillery that rained down on their city. They were sure that was where he had picked up the Hep C. I decided I would give the Harvoni to them. Ah if only it had not been a dream. If only I had a thousand jars of Harvoni to give to good deserving people who needed that drug so badly. If only I had ten thousand jars of Harvoni! One million jars! Even ten million jars would not be enough!
How can the drug companies hold onto these drugs, that could ease so much suffering, all in the name of PROFITS. How do the people who run these companies sleep at night?



26th June 2015 V Day

I woke with a mixture of excitement and anxiety this morning. My appointment to see the doctor to get my viral loads and other blood test results was at 8.45 a.m..
I had had a terrible night's sleep. The whole family is down with the flu and I was coughing and sniffing all night. Combined with the Ribavirin insomnia it meant I did not sleep well.
At the pathology clinic, where they took my blood samples, they had told me that the results could take up to two weeks to get through to my doctor. I had made my appointment at 9 days after that, who can wait two weeks???

So I got out of bed at 7.30 this morning, had some breakfast and drove into see my doctor. He had been away for two weeks so he was interested to see the results of my earlier bloods and the new ones.

First he pulled out my liver function results: ALT down from 464 two months ago to 20 last week. Gamma GT down from 222 to 67 and ALP down from 98 to 68. He shook his head and smiled. "These are fantastic result!"

Yahoo

Next: the viral loads.
I held my breath as he read through the results on the computer screen then turned to me with a really big smile and said, "No detectable virus load." He smiled and shook his head again.
I almost cried. I could feel tears welling in my eyes, I do again as I write this. It has been a long, hard, rapid journey. Until this moment in the back of my mind I was worried that something might go wrong, that the virus would still be there. But no it was gone..... well not really totally gone, just at undetectable levels. I will have to keep taking the meds for another 2 months and then get a couple of viral load tests over the following months to confirm that it is completely gone. But everything is looking rosy now... everything is as good as I hoped it could be.
Below is a copy of the test results. I have removed a few identifiers such as my doctor's name for privacy reasons.



Next the Ultra Sound Results

After all that good news I was not too interested in the Ultrasound results however they were there and we looked at them.
The preamble was extensive but conclusion was pretty simple and satisfying;

" Normal liver apart from one small calcified granuloma in segment 8 Otherwise a normal study"





26th June
Even though I am stuffed up with the flu I had a good night's sleep last night knowing that the Hep C virus is in serious retreat. I know that a "non detectable" result does not mean that the virus is completely gone. It means there are so few floating around in my bloodstream that even 21st century technology cannot find them. But they are there and I will keep taking the medication for another seven weeks to kill off ever last one of the little bastards!

Apart from the good news about viral loads and the blood results generally yesterday was an interesting day on other levels. Let me explain.
Firstly I was contacted by one of Australia's leading liver clinics. I had helped one of their patients organise Sofosbuvir from India and they had asked him for one tablet so they could test it. It was Cipla Hepcvir. So they tested the tablet and wrote to me to tell me that the tablet was good. It had exactly the correct amount of Sofosbuvir in it and they were happy for their patient to use it.
Next; I received another email from the same clinic, from one of their specialist doctors and he asked if I would mind if his patients contacted me for information about getting Sofosbuvir from India.
So it is great that people are becoming aware of this option of getting their Hep C treatment from India and that they are being supported by their medical practitioners.

28th of June 2015
After being on a high for the previous couple of days the flu really got a hold of me last night. The whole family has it, but it is that rare strain of flu known as Man Flu, which always effects men much worse than women. So I had a terrible night's sleep, coughing my lungs up, blocked nose, the whole package. Poor me!
Another surprise, when I finally dragged myself out of bed and snuck out to steal the neighbor's newspaper, was that the Sunday Tasmanian had run another article about Hep C. This time the article focused on the rejection of Sofosbuvir by Australia's Pharmaceutical Benefits Scheme, meaning that Gilead's Sovaldi will remain out of reach of most Australian Hep C sufferers.
The article also discussed Gilead's response to growing international criticism of its pricing policies.
On that line of discussion I was informed by a well placed and reliable source that Gilead has hired a 'Crisis Manager' to help deal with (suppress?) the growing news and social media backlash against them and the growing interest in getting generic Sofosbuvir from India.
Within days of this crisis manager coming on board there were tangible efforts to influence the narratives on social media Hep C forums. Suddenly there were a raft of people warning about the dangers of buying generic medication from India. There were personal attacks on my integrity. Claims about scams and 'snake oil' salesmen. All designed to create fear.
Of course the truth is a very different thing altogether. The truth is there that are numerous internationally accredited pharmaceutical manufacturers in India who are licensed by Gilead and who produce 100% safe and effective generic Sofosbuvir and Ribavirin that is being used and recommended by gastroenterologists and hepatologists internationally.
So I say again: Take control of your own health, don't give in to fear, grab hold of hope and get yourself healed!!!

Our local paper heard about the good viral load results and the fact that Sovaldi had been rejected by the PBS again and did a story. Here is the link if you want to read it:
http://www.themercury.com.au/lifestyle/india-mission-clears-deadly-virus/story-fnj64o6u-1227418081555

29th June
I guess I should not be surprised that my computer was hacked again last night and access to Internet Explorer blocked. Fortunately, after the previous hacking attack I keep my website hardware and software totally separate and all the net at all times except when downloading an update.
A few interesting bits of information have been brought to my attention. One is that Gilead actually donates to many (not all) of the major Hep C advocacy groups around the world, tens of thousands of dollars to each group and who knows how much to certain people with those groups.
So if you contact your local Hep C advocacy group about getting Indian meds don't surprised if they throw you the "Indian medication is dangerous, fake and illegal." It is all rubbish.
My own experience, since entering the world of Hep C advocacy, is that only one of my local Hep C advocacy groups has ever replied to an email I sent, that was Hepatitis Australia. That applies to mainland Australia and Tasmania.

Hepatitis Australia's email maintains the conventional potion that Indian generic Sofosbuvir is, or might be, unsafe or fake despite the fact that is manufactured under license in TGA and FDA accredited premises.
Hepatitis Australia also holds out the hope that Sovaldi, Harvoni and Dalinza will be approved by the PBS soon and that access would not be restricted by disease stage, which is contrary to advice I have received. Of course I hope that Hepatitis Australia is correct and we can all soon have access to Harvoni and that whole new generation of Hep C drugs soon, however there is no sign of that happening in the near future. And if we do get untriaged access to the new medications I do believe we will be the only country on Earth to have achieved that.

I know this might sound like a paranoid rant but it is my experience, but please make up your own mind what is going on. But think about the billions and billions of dollars Gilead is making from the combined suffering of millions and millions of human beings around the world.










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. Greg Jefferys blog is also intended to record general discussions around  Hep C issues and by people treating or seeking to treat their Hepatitis C infection using affordable generic medicines