Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
A lot has happened since I last had time to write anything as the flood of emails has not abated and that consumes most of my computer time. Some very good things are happening but I want to start off with a theme I have discussed previously. The desperation of people with Hepatitis C.
I would like to start of with a metaphoric story:
A person is in the desert dying of thirst, they struggle on searching for water until one day they come upon a man with a water cart. What relief! Water and plenty of it… the suffering is over.
“Please give me water,” the dying person begs.
“You must pay me for it first,” replies the water man, “This is my business and I need to make a profit.”
” I am happy to pay,” replies the thirsty, dying person, “I need about two days of water to get out of this desert. How much would that cost?”
“That would be $120,000,” answered the water man.
Dismay and anguish swept across the dying person’s face.
“But that is impossible, I do not have that amount of money. I am dying of thirst, surely you can spare me enough water to save me? I will give you all the money I have!”
“No,” answered the water man, “This is business, you must pay my price or you must die, it is your choice.”
The thirsty, dying person begged and pleaded but the water man refused.
“Buy or die,” was his only response.
Eventually the dying person died. The water man covered the body with some sand so it would not offend other potential customers and, pouring himself a large glass of cool water, he returned to waiting for someone who would pay his price.
And so it is. Every day I get emails from anguished and desperate who are dying of a disease that they know can be easily and simply cured, who are dying because they do not have enough money to pay the waterman’s price.
Every week I get at least two emails from people who tell me that they have been contemplating suicide because of the overwhelming burden of the Hep C virus. The social and personal stigma of it, the debilitating hopelessness of it.
I am pleased and humbled to be able to offer some hope to these people, the cure is there and it is accessible and affordable. There is light at the end of the tunnel. There is hope. There are other water men.
The New Medicines Are Now Available
There are essentially four available non-Interferon based treatments that effectively treat all Hep C genotypes. There are other treatment options but these one are all available as some form of generic now. They are:
Sofosbuvir + Daclatasvir
Sofosbuvir + Ledipisvir (Harvoni)
Sofosbuvir + Simeprevir
Sofosbuvir + Ribavirin
According to the 2015 EASL Report Hep C treatment summary these combinations, or mixes of them, will give a cure rate of above 95% on all Hep C genotypes. The duration of the treatment and exact combo will vary according to the individual’s liver condition as cirrhosis will extend the time of treatment and may require the addition of Ribavirin.
But the fact is that these are all available now.
Sofosbuvir and Ribavirin are available as tablets from India now.
Ledipisvir, Daclatasvir and Simeprevir are all available as API concentrates from Mesochem in China.
If you live in Australia Simeprevir is also available on the PBS and can be purchased from the chemist with a prescription from your doctor.
Please use the link below to reach this simple but accurate diagnostic tool
Hepatitis Australia and the Issue of Drug Companies Sponsoring Advocacy Groups
You may have noticed that I have been grinding an axe about the issue of Hep C advocacy groups taking sponsorship from the big Drug Companies. I use Hepatitis Australia as an example because they are the peak Hep Advocacy group in Australia and because I know that they get about $240,000 p.a. in “sponsorship” from the drug companies and I believe that this large amount of money greatly influences their policy decisions. It might not but it appears to me that it does.
Here is an example in an email I received today from a leading Australian Liver Specialist.
I was just curious about how you felt about Hepatitis Australia…. I wrote a tiny article for that site (that I had contributed to with advice fairly extensively over the years) suggesting that generic DAAs may become more generally available (and was quite specific and deliberate about NOT mentioning any methods of obtaining them or who might be supporting the acquisition of the DAAs or the patients who elected to take them) and very promptly got “you are permanently banned from using this site” in reply.
Given the desperate positions of some of the people reporting their situations on the site I thought it a little odd.
Now what does that suggest about where Hepatitis Australia’s loyalties lay?
Another angle on the same theme. Why do half the Liver Clinics in Australia support patients who choose to use Indian generics to treat their Hep C and why do some liver clinics refuse to support their patients.
I was told by one person who went to a liver clinic in southern Queensland that when she asked for a prescription for Indian generics from the specialist there the specialist sneered and said “If you want to use Indian drugs go to India and get treatment there.” Nice doctor that one! Charming, full of compassion (not).
Here is another email from a person who brought in Chinese APIs, Sofosbuvir and Ledipasvir to make an Harvoni equivalent.
I have had great results after only 8 days of using the meds.
All my liver functions are now back to normal.
I have not done the viral load yet, next week I’m due for another blood test so might ask the nurse to include that test.
St. ###### Hospital (Sydney) have been really horrible so I moved to Prince of Wales under the care of the Head Nurse ##### who is really wonderful.
She mentioned she had been in contact with you.
I have been quite active on MedHelp website under the name ####### espousing the virtues of Mesochem.
I have not referenced your blog, or you by name, so was wondering is it OK for me to reference you and your blog.
I have found it dumbfounding that some medical people are actually deterring people from seeking help.
Makes me wonder who they truly are?
Why would you tell people who might have months to live, or scheduled for liver transplant, to wait for 6 months or more when the cure is available now? Dumbfounding!
The pharmacist ####### made the meds into separate capsules; one of Sofosbuvir, the other with Ledipasvir. So I take the 2 capsules daily.
Thanks once again for pointing me to Mesochem, and hopefully SVR.
So we have some clinics and doctors giving fantastic support to their patients and the patients getting fantastic results and getting cured and then we have doctors and clinics refusing to support patients, refusing them life saving treatment.
What if going on here????
Are these people so lost in their prejudices and egos that they no longer care about the health of, the lives of, their patients?
What are they thinking?
One last thing….. my email account is now secure.
5th September 2015
Pressure on Mesochem to restrict access to Hep C APIs
The many people who are waiting for Harvoni rather that using the Sof/Dac or Sof/Sim treatments that are available now should take note of this important event.
Until Friday last week Mescochem was shipping the API form of medicines such as Daclatasvir and Ledipisvir etc around the world no problem. Send the order and the money and you got the meds within a few days. Treatment began, healing began and everyone was happy.
As of Friday Mesochem refused to send meds to anyone unless they were a drug manufacturing company or part of a research project.
This shows us how much pressure Big Pharma can exert, even in China. A lot of people who were in the process of organising their treatment using a Mesochem API as a component are now being told that they can not have it.
However there is a way around this… for the moment anyway. (I know that even as I write this piece Big Pharma follows my blog and will be aware of what I am about to tell you before you are)
I am running a research project compiling the results from people using generic Hep C meds and Chinese APIs. I invite you to be part of this project by sending me copies of your test results as you get them as well as the type of meds you are using and dose rates etc. I will be compiling these results and writing a paper for publication in a medical journal. So if you do this you are part of a research project.
I stress that this is a genuine research project. I am currently doing my PhD and also have a Master’s Degree.
So when you write to Mesochem to order your API please make it clear that you are taking part in a research project. This will work for a while but I would expect that Big Pharma will find a way to close this down eventually… their greed and cruelty knows no bounds!
I even encourage people to begin their own research projects or ask their doctor or specialist to initiate a research project. The subject of generic medicines vs branded medicines is an important one and deserves many research projects
Get Well and Stay Well
7th September 2015
A new website has been launched by Hobart GP Dr James Freeman. Dr Freeman had had the Chinese APIs and the Indian Sofosbuvir analyzed by the National Association of Testing Authorities, Australia. The results confirm what we all already knew. Check it out!
National Association of Testing Authorities, Australia
8th September 2015
Here is an email I received yesterday from one of the first people to start using Indian Sofosbuvir combined with Mesochem Daclatasvir. He is a Cambodian student studying in Sydney whilst his father lives in Cambodia and was very sick with Hep C and had no hope of getting treatment there in Cambodia.
Just an update from my dad in Cambodia. It is now week 6 since he took the med. He just went for a blood test last week and the results are marvelous. Apart from the difficulty to get to sleep (which is now getting better with some good diet), he said everything else is great – he is having more strength and can jog for hours! He told me to say thank you very much.
I told him to do another check probably at the end of week 8 (like what you did)…
Thanks for all the updates on the blog.
All the best,
12th September 2015
A bit of house keeping first.
The Mesochem API issue.
As mentioned last week, until Friday the 4th of September, it was a very easy process to get APIs from Mesochem. You sent Rachel an email and then the payment and you had the API in your hands within 7 days.
That changed and for a few days there were no deliveries. Then we figured out that the requirements demanded by Mesochem to get the APIs had changed and now one had to be either a drug manufacturer or a person taking part in a research program.
So now when people write to Mesochem to purchase and API they write words to the effect of this:
“I am aware that the Daclatasvir is an API and a concentrate. My treatment will be supervised by a doctor and the API will be made into doses by a qualified pharmacist. I am using this API as a part of a research program.”
For the moment this is working and people are again getting their Daclatasvir etc.
What is an API?
API stands for Active Pharmaceutical Ingredient. The pharmaceutical world is divided into companies that make consumable tablets or capsules in dose amounts and companies who make APIs which they sell to the companies that make the consumables. For example it is my understanding that the API for Sovaldi (Sofosbuvir) is made by a manufacturer in Jordan and tabletised in Ireland. So I have been told.
Mesochem and Chinese APIs
China makes a large amount of the world’s APIs and these are sold to many major international drug companies around the world. Mesochem is a well established manufacturer and supplies APIs to many medical tablet makers in the USA and Europe.
Mesochem’s Daclatasvir has been tested twice by Australian doctors and found to be 99% pure and is about to be tested again by one of Australia’s leading liver experts.
The ongoing debacle of doctors refusing to prescribe Indian Generics.
In Australia now about 30% of doctors and about half of the liver clinics will either prescribe Indian generics or support patients who are using them. When a patient has been battling with this disease for decades and have failed Interferon treatment they are elated when they get support from their doctor or clinic for using the Indian generic treatment for their Hep C.
Conversely when they have been battling for years, feeling sick and even feeling their liver dieing within their body while being offered no support or viable options of Hep C treatment other than being told to wait and see if they might possibly qualify for treatment next year, then patients get angry or depressed, even suicidal. Doctors are supposed to care foremost about their patients’ health and well being and be informed of the latest treatments.
I share this example of the type of email I am getting very regularly
Hi Greg it’s ###### my GP did not want to know about the Indian generic treatment, he said “No I can’t support that, I’ll refer you to the liver clinic here.”
I told him to forget it …. he made me so angry when he said that he wouldn’t give a prescription but then he told me how many people with Hep C get liver cancer and die.
I walked out furious!!!
Last night I emailed Rachel from china and got the of 6 grams of dac and 35 grams of sofosbuvir so that’s the way I am going to go.
Their dac is 99 percent pure and on their web site it says their sofosbuvir is too so I have sent the money through western union. When I get it I will get it put into capsules by our local chemist and then start my Hep C treatment and in a couple of months I will go back to my GP and just show him what I have done and how it has worked.
For all your help I thank you
This person has now started treating his Hep C and is on the road to recovery. I applaud him for making positive and proactive choices and getting on the road to healing rather than waiting around for the new Hep C treatment drugs to be offered on the PBS or for Gilead to suddenly become a compassionate corporate citizen.
The same problem of an uninformed or unsupportive GP is again reflected in the email below. This lady contacted me and after we had discussed her son’s situation, which include the fact that he had tried the Interferon treatment but had such a strong adverse reaction that he was removed from that treatment after a couple of weeks. After we had discussed options her son wen to his GP, who knew his Hep C history, and asked for a prescription and for the GP to supervise his treatment. The GP out and out refused to write a script or supervise the treatment even though there were now no other treatment choices.
Fortunately I was able to direct mother and son to a supportive specialist who wrote the script and is supervising the treatment.
HOW ARE YOU?
HAPPY TO LET YOU KNOW THAT MY SON STARTED TREATMENT WEDNESDAY LAST WEEK. SO IT HAS BEEN A WEEK AND ONE DAY NOW.
THE DIFFERENCE ON HIS FACE WAS AMAZING AFTER THREE DAYS OF TAKING THE MEDS. HE IS TAKING SOVOSBUVIR AND DATACLATIVIR..
THANK YOU AGAIN.
HE WILL FIND ANOTHER GP BECAUSE IT WOULD BE STRANGE TO RETURN TO SOMEONE WHO KEPT TELLING YOU NOT TO USE THESE MEDICINES, NOT TO GO AND SAVE YOUR LIFE.
HE SAYS HE DOES NOT FEEL “FLIGHTY” ANYMORE. I THINK HE MEANS HE IS LESS ANGRY IRRITABLE.
GREG YOU HAVE CLEANSED LOTS OF KARMA ….. YOU MIGHT GO TO HEAVEN…
TALK TO YOU SOON…. IF THERE IS AN WAY I CAN HELP LET ME KNOW… I AM TELLING PEOPLE ALL ABOUT IT.. SO IF ANYONE NEEDS TREATMENT. THEY CAN GET IT.
(I hope I am cleansing some karma! I do have a lot of cleansing to do in that department but I’m not going to go into that here.)
In Australia we are lucky because, now, about one in four doctors will write a script for hepatitis treatment using India generic Sofosbuvir in combination with another drug. In the USA and the UK about one in every two thousand GPs will support their Hep C suffering patients, while the rest suggest Interferon based treatment with all its terrible side effects and low cure rate.
It is like prescribing blood letting to cure the flu.
Another Liver Specialist Supports Hepatitis C treatment with Indian Generics
West Australian Liver Specialist Dr Richard Sallie, based in Nedlands in Perth, has been supporting people with Hepatitis C who have decided to treat their disease using generic Hep C medicines.
As a result of his intelligent and compassionate approach to Hepatitis C treatment Dr Sallie is seeing fantastic results with his patients and is pretty heavily booked but if you wish to make an appointment with him on this is his email address:
Doctor Sallie’s position is that people with F3 or worse HCV related fibrosis really can’t afford to delay treatment so he is in the process of emphasizing his practice’s HCV work. He will soon have a website up which I will provide links for when it is up.
Please do not bombard Dr Sallie with general questions about generic Hep C medication, he is a busy man. I am more than happy to help you with general enquiries. Just email me and I will always reply within 24 hours.
Here is another email from someone reporting on their progress, his viral load dropped from being over two million for years to under 50 after just 15 days of treatment. This result immediately takes the pressure off the liver and allows it to begin healing itself.
Just an update on my viral load count.
Blood test on 27/05/15 HCV RNA IU/mL = 2,233,739
Blood test on 01/10/14 HCV RNA IU/mL = 3,900,190
Blood test on 18/12/08 HCV RNA IU/mL = 4,800,000
Treatment with 400mg Sofosbuvir and 90mg Ledipasvir daily sourced from Mesochem.
After 15 days of treatment:
Blood test on 08/Sept/15 HCV RNA IU/mL = 46 (not a typo)
Couldn’t’t be happier.
I know it is early days, but at least things are heading in the right direction.
With God’s grace, I hope this blood polluting virus’s days are numbered.
I will keep you apprised of my scheduled week 4 blood test results.
Keep up the good fight Greg.
And another one, this guy’s viral load was at 40 million and after six weeks of treatment it was less down to less than 250; he had been very sick for a long time but now he is feeling heaps better.
Find attached the latest viral load test. I know it is not the right test which measures down to 15 so I will get another one but this one says less than 250. I think I am now into my sixth week and didn’t get this test done before as I was in Samitivej Hospital in Bangkok undergoing a quadruple bypass. I guess these things catch up with you as you age.
Anyhow this looks like good news and I will keep you posted. As I said I am going to pay for the more sensitive test as I never imagined I would be this low yet.
Seems to be working bro and I am very happy !
So the results are flowing through, every day I hear of people whose health is improving rapidly, some who began their treatment early are reaching SVR and are feeling great after feeling sick for so many years. It is fantastic to hear all this good news and tragic that so many people are being prevented from being cured of their disease by their doctors!!!! Seriously how absurd is it that people are being blocked from accessing these life saving medicines by their doctors??? What are these doctors thinking? This is particularly the case in the UK and the USA where the medical profession is under the powerful influence of the mega-wealthy drug companies.
14th September 2015
Well its almost one month since I finished my treatment. One year ago I was so weak that I often spent most of the day in bed.
Yesterday I went trout fishing in my kayak up the Huon River. I carried my 25 kilo kayak down a steep bank to the river then paddled about 3 kilometers upstream against a strong current, got out of the kayak and fished from the rocks amongst the rapids, paddled across the rapids and then fished for a couple of hours before carrying my kayak back up the bank and putting it onto the roof racks of my ute.
A year ago my nose bled spontaniously several times a day, the slightest bump caused blotches to appear under my skin, the slightest scratch caused me to bleed. My legs often cramped up so baddly it was hard to straighten them out.
A year ago my liver was swollen and my liver function tests caused two liver specialists to believe that I had liver cancer and my viral load was around one million.
A year ago I could not think clearly and my memory was faulty. I was in “the fog”.
Today I am starting back on my PhD, my nose has not bled for two months, my mind is clear, my liver function tests indicate my liver is in premium health, ultra sound scans show no sign of liver damage or cancer or cirrhosis. My viral load have been “undectable” for more than 8 weeks.
Yes I am cured and it was easy and it was quick. Thanks to Hep C treatment using Indian Generic Sofosbuvir and Ribavirin and my GP who happily supervised my treatment and the nurse at the Hobart Liver Clinic who was extremely supportive. No thanks to Gilead, no thanks to our government, no thanks to the liver specialist who told me I should wait for the new drugs to become available on the Pharmaceutical Benifits Scheme (they are still not available).
Thanks especially to India.
Right now around the world people with Hep C are desperate to access these new medicines, desperate to cure themselves. The cure is there now, it is accessible and it is easily affordable for many people (saddly not all).
Yet a large number of narrow minded or ill informed doctors are telling their patients to wait, telling their patients not to trust Indian generics while offering no logical reason why Indian generics can not be trusted. Offering no alternative solution for a cure for their patients.
Fortunately there are a growing number of enlightened and informed doctors, specialists and clinics who are supporting their patients and prescribing these life saving drugs. If your doctor will not support you then find another doctor, one who is up to date and actually cares about your long term health.
If you want information on how to get generic Hep C medicines from India or China just email me. I offer this imformation completely free for the benifit of all people with Hep C.
I wish you good health.
15th September 2015
A request from Médecins Sans Frontières (Doctors Without Borders)
Médecins Sans Frontières (Doctors Without Borders) is currently increasing its focus on the diagnosis and treatment of Hepatitis C in the ‘developing’ world. This includes looking at how patients and governments can affordably access the new Hep C drugs that are emerging such as sofosbuvir, declatasvir etc
However MSF is also critically aware of patients in the ‘developed’ world who are unable to access these newer DAAs, and are actively searching for other options to get Hep C treatment.
To supplement and strengthen our advocacy work, we frequently use patient stories that illustrate the human impact of lack of access, either through articles or videos. We are therefore looking for strong stories from people either from so-called developing or developed countries who might be willing to share their stories, either on camera, in print, or to journalists that we engage with.
Ideally, we are looking for people who are willing to be named (as this makes for a stronger story) but can also arrange for anonymity where requested. Our communications people work to strict standards, and will only ever use information that has been cleared in full by the person.
If you would like to share your story or would like more information about this request, please contact Kate on firstname.lastname@example.org. Please note that MSF is not in a position to provide or arrange direct access to treatment, provide medical advice, or engage in lobbying for treatment on behalf of individuals, so we won’t be able to respond to such requests. Thank you
And Another Great Week Four Report:
Woohoo.! Results from 1 month blood tests. No detectable virus. Just a
reminder as I know you are swamped with people contacting you. Sof and Dac. Genotype 3. Forever grateful to you. Will keep you posted on further tests. Thank You so so much for your help. Cheers.