18th March 2016
At the moment about a third of my work is helping people from the USA access affordable medicines. Every day I get around 30 emails from desperate people in the USA asking for assistance or advice. Some are happy to fly to either India, or Australia or Thailand to buy the medicines they need there. Others, for what ever reason, prefer to have their generic Hep C treatment shipped to the USA.
It is a sad irony that in the world's largest economy hundreds or thousands of US citizens are suffering because they are not able to access an affordable cure for an easily curable disease... Hepatitis C.
It is also ironic that a person from a small island off the southern tip of Australia is helping some of those people to access affordable generic Hep C treatment from either India or Australia.
Anyway life is strange and that is what is happening. The upside of the US situation is that I love getting emails from people in the USA who have started or completed their generic Hep C treatment and are excited to share the good news that follows.
I think that yesterday I got one of the best news stories I ever received from the USA about Hep C treatment.
It was from a guy in the US who purchased Indian generic Harvoni. There were a couple of minor dramas during the delivery process and the FDA got hold of the medicines and wanted to know why he needed them.
Fortunately this guy had a supportive doctor and after week the FDA released the generic Harvoni and it was delivered.
(I should add here that these dramas are VERY rare but when they do occur I am totally available to assist and at this stage we still have a 100% success rate of generic Hep C meds being delivered to patients in the USA)
Of course even with the good outcome the whole thing made a pretty stressful week for my friend and there were a few phone calls back and forth as we worked through the FDA thing.
My friend was very anxious to start treatment and pretty worried because his viral load had recently climbed from 9 million to 12 million and he was thinking that major liver damage was around the corner.
Anyway when he got his meds delivered he was then worried as to whether they were fake or not, so he went and had full blood test, including a viral load test, five days after starting treatment!!!
Yes five days into treatment.
Now to this day I have never heard of anyone getting these tests done that early. Even I waited until day eleven into treatment before getting my first bloods done, and I'm a very impatient patient.
So he phoned me as soon as he got his test results. There was a happy voice on the other end of the telephone...his viral load was down from 12 million to undetected in five days.
Added to that there were great improvements in his liver enzymes.
What a fantastic story. These new Hepatitis C drugs are truly miraculous... what a pity such greedy bastards run the companies that control the patents.
But thank God that we have access to generic Hep C treatmentn from India!
20th of March 2016
Today will be an interesting day for me because a television show about the Hepatitis C situation in New Zealand will go to air on NZ TV's highly regarded Sunday current affairs program.
NZ television sent a crew over to Tasmania to film and interview Dr Freeman and myself about our work helping people access generic Harvoni and Daclatasvir and other generic Hep C medicines. In a couple of hours the program will go to air and it will be interesting to see what form it takes and how they portray the situation and the key players.
Here iis the link to the piece. It turned to be the best production yet on the Hep C situation.
Fortis Hospital in India: A Review.
Over time I have had a lot of feed back about different hospitals and doctors in India from people who have decided to not only go to India to buy generic Hep C medicines but also to undergo treatment and testing. This is a good option for many people as Indian medical services are of a very high standard. The doctor I saw was trained in the UK and also practiced there as a specialist for many years before returning to India.
As well as highly trained doctors tests and procedures are much cheaper in India than most other places, often one tenth or less the cost of Western countries.
Of all the feedback I have received the Fortis Hospital, about five hours drive north of Delhi is consistently the most highly regarded. I have never had one bad comment and many, many people have written about the high standard of treatment and care.
Below is recently received report:
I hope this email finds you in good health and spirit.
I am writing to update you on the progress of obtaining the Harvoni medication for my husband. It's been two months since I last communicated with you and am pleased to inform you that the medicine has been successfully purchased in India.
After contacting all the contacts and recommendations you gave, we had chosen to go with Dr. Mohinish Chhabra of Fortis Mohali, Chandigarh, Punjab, India. Initially, we had wanted to go with Global Hospital, Chennai but the doctor recommended my husband to undergo a liver transplant, which was not an option for my him (for many obvious reasons; surgical risk, invasive procedure, challenge in finding a suitable donor, etc.). Our communication with Apollo Hospital did not produce satisfactory result. The doctor did not offer much opinion or advice apart from agreeing to meet with us. While the other pharmaceutical representatives were very responsive, we felt more comfortable to meet a certified doctor who can prescribe the medicine.
Dr. Chhabra and his team of staff from Fortis Hospital were an obvious choice in the end. They were extremely responsive and efficient. We even managed to schedule a skype consultation and Dr. Chhabra was able to offer his advice and opinion after reviewing my husband's medical results which were sent to him via email. We were able to obtain the answers for all our query quickly; travel arrangement, booking of appointment, cost of the medicine, letter for visa application, etc.
Although Fortis Mohali is situated about 5 hours away from New Delhi (north of Delhi, in the Punjab region) via road, the hospital provided good service throughout the way and ensured I got there on time for my appointment. I had gone to the hospital without my husband because Dr. Chhabra advised my husband not to travel due to his condition (by that time, he has severe irritable bowel syndrome and lethargy). I was picked up from the hotel in New Delhi in a comfortable MPV (about 6000 rupee/US$89) directly to the hospital.
I left at 8:30am and arrived at Fortis Mohali around 1:30pm.
I stayed at Fortis Inn (the hotel at the hospital which costs 4,400 rupee/US$65/night for a modest twin-bed deluxe room with en suite shower) which was very convenient. The liaison person, Ms. Kiran was just amazing and assisted me to check-in and meet Dr. Chhabra around 2pm (my appointment was 3:25pm). Dr. Chhabra was easy to talk to. He was a good listener and wrote his opinion and recommendation for me to take to my husband's doctor in ######.
I like the fact that he did not even ask me to buy any other medicine other than what I had come for although he suggested that I should consult the doctor in ###### on the other recommended drugs (to address the IBS, acid reflux, blood pressure, etc.) By 2:30pm, I was done and all I had to do was wait for the medicine which was brought to me by the Mylan representatives.
My consultation with Dr. Chhabra including registration fee was only 1100 rupee (US$16) and I paid the Mylan person a total of 171,600 rupee (US$2,559) for six months supply of Ledipasvir+Sofosbuvir (generic Harvoni) and Ribavirin (6 tablets/day). The Harvoni itself costs 150,000 rupee (US$2,237)
My trip there was a lot smoother than what I had anticipated. It had taken me less than 3 days to sort everything out. I would highly recommend Fortis Mohali to anyone seeking to buy medicine for hep C. They were professional in every step of the way and I literally have no complaint about them (if there is any shortcoming, access to wifi at Fortis Inn was the only problem).
My husband has started on the Harvoni pill on Monday, along other meds like spironolactone (to overcome edema and hypertension) and propranolol (blood pressure to prevent the rupture of his aesophagus). He has decided not to take the ribavarin after consulting his doctor in Malaysia. We were informed that the side effects of Ribavirin (low haemoglobin count which could result in hemorrhaging) outweighs the increase of up to only 2% success anti-viral rate when combined with Harvoni for Genotype #. Dr. Chhabra concurred and said that if the side effects of Ribavirin is too much, he can stop taking them.
We are yet to see any physical improvement (according to Dr. Chhabra, he sees a huge improvement on one of his patients who has similar condition as my husband - decompensated cirrhosis, after 4 weeks) although I think there is an improvement in his spirit. So, keeping fingers crossed.
I hope this information is useful for you and you may share them with other patients who are in similar situation and would like to consider Fortis Mohali.
I wish you well and thank you for all your help. Without them, we wouldn't know how to start.
22nd March 2016
Hepatitis Genotype 3: Sofosbuvir and Daclatasvir
This is a brief but important post about recent results examining relapse rates in people treating Hep C genotype 3 with the combination of Sofosbuvir and Daclatasvir, with or without Ribavirin.
There is a strong and growing body of evidence that people with Genotype 3 should be having a treatment period of 16 weeks minimum to clear the Hep C virus completely and avoid relapse.
Results of a survey of a large group of people treating Hep C G3 with Sofosbuvir and Daclatasvir show that for people doing only 12 weeks treatment the relapse rate is every much higher than for other genotypes.
The research suggests that people G3 and without cirrhosis should do a minimum of 16 weeks of Sof+ Dac whilst people with Hep C G3 with cirrhosis should do a full 24 weeks of treatment using Sofosbuvir 400 mg and Daclatasvir 60 mg.
The results of this research are yet to be published but it confirms my own observations based on feed back from people with G3 who had relapsed. Of the people who I know who have relapsed (total of five) 80% of all relapses were from people with G3 who did 12 weeks.
Of course I am not a doctor and you should get professional medical advice when making Hep C treatment decisions.
23rd March 2016
Information for People from China with Hep C
Every day I receive a few emails from folk in China who have Hep C or whose relatives have Hep C. Most people think of China as a great wealth generating machine but there are hundreds of millions of Chinese who live in relative poverty and who have little chance of accessing affordable Hep C treatment. Even Indian generics are extremely expensive for them.
When people contact me for help or advice, depending on the person's circumstances, I will either help them to organise shipping from either India or Australia or I will put them in contact with a reliable supplier who I believe will be able to help them.
The email below describes in Chinese charactors the experience of one man dealing with my friend Parag Jain from Mumbai. Parag has helped many people access generic Hepatitis C medicines in India and is one of the most honest and honourable people I have ever had the pleasure of dealing with.
确保只订购84片。一个治疗。中国海关将拒绝任何超过一个疗程的个人用药入境 ! ! ! !
28th March 2016
The problem of access to affordable Hepatitis C treatment crosses all borders and the curse of the greed of companies like Gilead drives many people to dispair. Fortunately there are people of good will and sincere hearts who will do all they can to help combat the evil of greed that is expressed by companies like Gilead.
In my work of helping people access generic Hep C treatments around the world I have been fortunate to meet many good and kind people and we have established networks where by we are able to provide the most appropriate options to meet people's various needs.
Below is an email I received related to one of those good people Prag Jain in Mumbai (who is also mentioned in the Chinese post above).
I would like to tell you my experience of buying a generic Harvoni from India.
After reading a lot of posts on many forums on HCV treatment, particularly with generic drugs from India, and a number of e-mail consultation with you, because you were the only man who I felt I could trust with confidence, at your suggestion I contacted via email firm Bull Pharmachem and immediately received an offer from Mr. Parag Jain to send me via DHL requested medication (Ledifos) at a fair price.
Once again I consulted you and you gave me all the recommendations of Mr. Parag Jain.
Then I came across the problem of imports of drugs in my country by mail, in fact, I had to get a prescription from a local doctor who'd shown when taking medication. They did not want to give prescription drugs because they are not registered in my country.
It was an option that I personally go to India and get medication, but I live in Europe, I'm moving in a wheelchair, for me it was impossible for such a long journey.
I explained the whole situation to Mr. Parag Jain and he told me that he will try to find a solution. After a few days Parag contacted me and said that there is a possibility that his friend from Europe who often reside in India takes drugs for me.
It was finally realized ... Parag's friend, a lovely and sensitive person full of understanding, brought me medicines.
I would like Greg that this my email sharing with other people, especially as my gratitude to all of you great people who helped me to get the necessary treatment.
Special thanks to Mr. Parag Jain ... great man and a professional !
I wish you all the best in life!
Bosnia and Herzegovina
Evil thrives when good people do nothing
1st April 2016
An American Tale: My journey to get generic Harvoni
I happened upon Greg Jefferys blog while online - researching Harvoni appeals in the US. I have been denied by my insurance twice in 2 years. I'm 61 years old, have treated 3 times unsuccessfully, but because I'm not "sick enough" my insurance won't cover the cost.
Once I discovered Greg, I did some reading and researching and decided he was my best hope at getting treatment. I didn't even realize generic Harvoni was out there. I downloaded his book and read about his own journey to India to obtain generic sofosbuvir, KNEW in my heart that Greg was put in my path for a reason. Many emails and weeks later, I wired him money, against the advice of my bank who was certain I was being duped. Sending money to a total stranger across the world took a huge leap of faith, one that most of us aren't used to making. This is the story of my journey to obtain my medicine.
Greg emailed to say that one of the suppliers he knew in India (PJ) had an uncle who was traveling to the US and offered to bring a 3 month supply for someone, and would I like that method as opposed to mail order. I said yes because I was sure it would be easier than dealing with customs & the FDA. And then everything went sideways for a bit!!
We flew from Denver to LA on 3/21 to meet the Uncle from India. Uncle and wife were to arrive the next day. But the next day we received word that their flight was cancelled due to the bombing in Brussels as they were in Paris at that time for their layover. Now they were put on an Aeromexico flight due to arrive in LA on 3/23, which was our scheduled departure day! So I moved our flight to the latest one out for that day so we would still have time to meet up with Uncle before catching our flight home! Meanwhile PJ in India was wonderful through all of this, losing much sleep as we were in constant communication via WhatsApp so he could keep us up to date on Uncle's whereabouts. Uncle FINALLY arrived in LA but without luggage, which was lost in the shuffle!! ��Of course the generic Harvoni was in the luggage!
About that time we got notification that our return flight scheduled for that evening was now cancelled due to a freak spring blizzard in Denver which closed the airport, a very rare occurance!! I had to sit and laugh for a bit as it felt like the universe was conspiring against me getting that generic Harvoni!!
As we had no clue when the lost luggage would appear, I purchased a prepaid Fedex mailer and went to meet Uncle. By now Uncle was not overjoyed to meet me, to say the least! I'm sure he thought this crazy chain of events was because he carried the meds which he was reluctant to do in the first place!! I explained that he just had to pop them in the box, seal it and give to concierge and they would call Fedex. It was all I could do, & hope for the best.
There were no flights at all to Denver now for the next 3 days so we rented an SUV for the cross country drive. My husband had a cold through all of this and with the cold medicines he was taking he was a less than reliable driver (or navigator as I soon discovered!) So 2 days and 1200 miles later, me driving the whole way, we arrived home! By then one piece of Uncle's missing luggage had arrived in LA, but not the RIGHT one.
Then on Saturday I got a message from PJ that the luggage had arrived in LA and appeared intact & the package was on its way!!!
And today (Tuesday 29th) it was delivered! PJ & I celebrated over WhatsApp!!
I'm chomping at the bit to begin, but I have developed a sinus infection which I am treating with antibiotics before beginning treatment!
Through all of this one thought stream is resonating with me. Although I live in a country of many freedoms & privilege, Harvoni was not accessible by me due to the greed of Gilead without regard for life. And because of the pure goodness & altruism of strangers from Australia & India I am now able to treat my HepC with this miracle drug. And today, as I sit and write this, Uncle called to ask if I received my package! Wow! I am humbled and so proud to call these once strangers my friends! Thank you Greg, PJ & Uncle!!