7th October 2016
Great News From New Zealand
One of the things that I have found is part of my job is to discuss and expose those things that are blocking people's access to getting treatment for their Hepatitis C.
This does involve focusing on negative things, which is really something I would rather not do. Scams, corruption, government incompetance, bad laws and so on.
I would would much rather just write about all the good things that are happening, because there are many.
In New Zealand a number of people began putting pressure on the New Zealand government to improve treatment options for people in New Zealand with Hep C. This included using the powerful tool of the news media and lobbying poiliticians and medical people.
To use the news media involves that people have to go public with the fact that they have Hepatitis C, this requires a degree of courage and personal honesty. It also needs people to open themselves up to the public and explain the issues that surround Hep C clearly and honestly.
A number of people, including patients and medical professionals, came together to do this in New Zealand this time last year after one of New Zealand's top Current Affairs programs did a story on what I and Dr Freeman were doing in Australian.
Now , a year later, the work of these people has borne fruit and things in New Zealand have changed in a BIG way.
Below is the story of one of these people who wrote to me a few days back. She and her friends have brought about these changes in her country; will you be the one who brings about these changes in your country????
I have been reflecting it is exactly a year today since I saw your story, and followed up, right when I thought I would have to sell my house to be able to buy Harvoni as recommended by my doctor.
Whoo hoo what a year! I have lost 25 kg. I have way increased cognitive ability and physical stamina, and feel amazing. And you know that even if the Harvoni had cured me, I could never have gone back to University this year because I would have had to go back work to survive. Just this week the Dean of the Law School, man held in universal esteem, has enthusiastically offered to supervise me (even though I am only 2nd year) for a research project for a summer job.
I am living the life I was meant to live!
I am proud to be able to contribute and support the work of you and the other generic rebels as an admin on Without Borders, and I thank you for the chance to do so as it is really satisfying to be able to assist others.
I was surprised that by going public in the news media and giving away my privacy I have found a strange freedom.
I thought I would hate it, however is actually really empowering, and I believe that it is safer to be visible than to try and be subversive in the shadows. I guess now that they will never hire me for a big corporate law firm when they investigate me online, which is actually a relief.
So thank you again!!!! I wanted to share this news I got this week- again, how far things moved in a year. And think of Australia!
So in New Zealand we now have the free V-Pak+ riba for for people here with Genotype1’ and the roll out of that is for Oct 1st. The NZ Hepatitis Foundation has been training doctors to monitoring people of the V-Pak. I found out yesterday those training sessions are training for the V-pak. But the really interesting thing is that these doctors are told that if your patient doesn’t qualify for the V-Pak then, inform them about Fixhepc and generic medications. This is run by the NZ Hep Foundation.
As you know they have a tainted reputation from their activities last year and that they were very anti-generic, but that has all changed now and the people running it are new faces, fresh blood and new attitudes- I am impressed that they have made that change!
Also, (and this blew me away), New Zealand Hep C treatment guidelines that have been written by Prof. Ed Gane and Dr Catherine Stedman; again says to New Zealand doctors to inform patient of the generic treatment option and has a live link to Fixhepc:
This means from now, in the public system (except for Dunedin hospital, but this should change that) on Prof. Ed Gane’s recommendation, all patients will get either free Hepatitis C treatment or information about generics. I can’t ask for much more than that. The pressure we have applied in NZ has paid off big time- NZ's government agency Pharmac said they were responding to public pressure by introducing this medical regime. What now needs to happen is for that network of doctors to efficiently cover the country, and we have resolved the entire Hep C situation in New Zealand. As you predicted would happen way back in January.
On a more personal level I have some very good news for people with Hep C who have F4 level cirrhosis
I was first given F4 diagnosis 18 years ago and the cirrhosis was confirmed with 2 biopsies and countless scans. So by now you can imagine the condition of my liver.
Last year exactly, my KP on our Hospital's cool new Fibrascan machine was 40, which is why getting treatment was urgent for me. So yay for you and Dr James Freeman who cam to the rescue. THanks to you and Dr Freeman I did 24 weeks treatment.
I am really happy to share that at end of treatment, the good news was that the KP level had halved to 22. Now, as I am coming up to SVR24- (I really can't believe it) my Fibrascan KP rating was 9.2!
AND I DON"T HAVE CIRRHOSIS! I AM F2-3!
I feel like l have lost another part of my identity. First I don't have Hepatitis C, now this, my cirrhosis has gone. I expected to get a bit better but I never expected to go under F4, and my specialist was amazed- this is the biggest change he has seen so far. Also my Spleen, which has been enlarged for about 5 years,is now normal. Also my portal vein etc, are now normal. Yes I am very happy.
thanks and best wishes
Some Good News From Italy
Despite my tendacy to rant and rave about the corruption in government and other civil organisations associated with the global Hepatitis C situation there is also a lot of good news, really good things happening around the world.
Some people might have thought that I am anti-Italian because of my recent "Italian Story" series however this is not the case.
One of the interesting things about Italy is that whilst the laws are bad and there are problems with Italy's Hepatitis C advocacy groups the Italian medicial professionals, doctors, nurses and hospitals, have been amongst the best in the world for supporting people choosing to do generic Hep C treatment.
The story below was sent to me today from an Italian guy who has completed his treatment and is sharing his insights into the whole process. It highlights many important aspects of doing treatment and also how good the Italian medical people were in supporting him.
As you asked I have written the story of my journey to being clear of Hepatitis C. I hope that it will be helpful to others thinking of following a similar path.
I'm a 58 year old married man with son and daughter, living in Milan, Italy with a steady job: basically just a normal family man.
I found out I had Hepatitis C in the early 90’s, shortly after the virus was discovered; before I learned I had Hep C I knew I had tested positive to Hepatitis B antibodies back in the early eighties. I was never felt acutely sick, but my mum used to comment on how I had a greenish complexion and always looked under the weather. During that period in the 80’s I was also messing around with drugs.
I got clean in 1991, and did 15 years of total abstinence of any kind of intoxicants, no drugs, no alcohol. After that period I relaxed a little and the next 10 years was a "fairly clean" lifestyle. That is to say I might have a glass or two of wine for dinner, 3 or 4 times a week. Occasionally a joint. During these last 25 years I've been going for yearly visits to the Hepatology department of the San Paolo hospital in Milan, Italy.
My liver tests actually gradually improved over those 25 years, and I was feeling quite well, with liver enzymes just within the normal range (30/40 something), and liver stiffness measured by the fibroscan test varying from 6.5 to 4.5. Virus Genotype was G4, a variety that is quite common in Italy.
Because my health was pretty good: I was too healthy to justify the Italian National Health system spending tens of thousands of Euros for a costly cure which was not essential. With my hepatologists at the San Paolo, in the years of interferon, we had agreed that it was not worth doing a treatment on me. When news of the new anti-viral medicines started coming out, we discussed these too: according to them, it would be years before I could be eligible for the treatment under the Italian National Health system. But there was also the risk that my Hepatitis C could start doing damage to my liver.
In December 2015, I asked my hepatologist how much it would cost me to buy the treatment privately: she told me 60,000€! It was around that time that I started googling the internet: so I came across Greg Jefferys, a Tasmanian activist writing Hep C blogs and on Facebook. So I decided to email him… Friday 11th of December 2015 was the date of that email.
With Greg, I exchanged quite a few emails in December and January: I found out that I had a lot of options for getting treated, and at a fraction of the 60,000 Euro cost! A little over 1000€! Greg also gave me valuable advice about the legal aspects; I was surprised that he had knowledge of the Italian situation. I saw my hepatologist again at the Hospital in January and told her I intended to get the meds from India: she had no issues with this, and told me that the hospital would support me during treatment.
So you might wonder why should a guy who basically has no symptoms and is generally quite fit decide to do this?
In my case, I had read that the positive effect of treatment was actually greater in people with the liver in good shape. Another fact which influenced my decision, was that Hepatitis C often manifests itself decades after infection. Also, most articles I had read on these medicines, talked of negligible side effects. So I decided to do it with an Indian generic "Harvoni", named Ledifos, manufactured under licence from Gilead, by Hetero Labs. 12 week treatment.
I chose to go to India myself and get the medicines directly from a person recommended by Greg in Mumbai. It seemed to me safer than having it shipped by courier, and I didn't mind the idea of a holiday in India. So, I booked the return flight 3 weeks after the outbound flight. I met the person in Mumbai on my first day and on the second day I had the medicines. Then I went for a holiday at the seaside for 2 weeks. I decided that I would not start taking the meds until I got back to Italy. Whilst in India, I kept the meds in my beach hut: the temperature inside the hut was generally around 27/28 °C, so ok for the meds.
As for the treatment itself, I started on the 19th of March 2016 and ended on the 10th of June. I was a slow responder, still detected at 8 weeks, these are the results of my viral load blood tests:
Start of treatment (19-mar-2016): 1,100,000 UI/ml detected
2 weeks 12 UI/ml detected
6 weeks <12UI/ml detected
8 weeks <12 UI/ml detected
12 weeks: undetected (EOT)
12 weeks post EOT: undetected (SVR12!)
Those 12 weeks of treatment, and even more so the following 12 weeks, were an unexpected emotional roller-coaster for me. I had expected to breeze through it: but it was not to be.
During my first month of treatment, I was still drinking and having the occasional joint. I stopped that when I saw I was still detected at 4 weeks, and kept abstaining until 3 months after the end of treatment.
I had mild physical side effects, but quite strong psychological side effects. I was emotionally very susceptible for 6 months: I put some relationships under strain. The physical side effects I had were: weight loss (about 5kg), fatigue, dry and sore mouth, tingling in the liver area, low blood pressure, perpetual need to drink water.
The side effects, both physical and emotional, lasted long after the end of treatment: about 3 months, during which, I also had the sneaky feeling that all these symptoms were due to the virus having come back. So the SVR12 results were a great relief. It is now 4 months after end of treatment, and I can now finally say that it is definitely getting better and that I feel confident it will continue to do so. My liver function tests are much better than they have ever been since the 1980s.
During my last visit to the hospital, the visit in which they congratulated me for clearing the virus, I mentioned that in the early 80s I had had Hepatitis B. The doctor was quite angry that nobody in the hospital had ever tested me for Hep B. So they got me tested, and I have some positive antibodies, but not sure what they mean yet, but I am fairly laid back about it since my liver function tests are good.
In retrospect, I think I was a little precipitous in making my decision, I underestimated the possible side effects of these medicines. I was a bit naive in expecting to breeze through it, and expecting a "new me" after being cured: healthier and more energetic than the "old me". Also I had totally overlooked the danger of Hepatitis B reactivating with the clearing of Hepatitis C. My advice to people considering the generic option is to be thorough in their research, and discuss in depth with their hepatologist before making the decision.
I am now very glad that I decided to do it: I'm free of the virus, sleeping well, and feeling better as time goes on: not yet the totally healthy and energetic "new me" I had imagined, but I believe and hope I'm on track for a better and longer future.
I am grateful to all the people on the web who supported me over these 6 months: especially to the members of the Facebook group "Hepatitis c treatment w/o borders" who were an invaluable source of knowledge and emotional support.
17th October 2016
Generic Hep C Treatment in Sweden
One of the interesting aspects of the work I do is that it is global, meaning that on any given day I will usually communicate with people from 20 or more different countries.
However there are some countries that I never get emails from and some countries I occasionally get emails from and some countries that I regularly get emails from.
This is because there are some countries that it is easy for me to organise for people to get generic Hep C treatment, some countries where it is difficult, but possible, to organise sending generics to and some countries where it is just impossible.
For example Japan, Canada, Sweden, Germany and Argentina… these places are impossible to send medicine to by courier or mail and so I rarely get emails from Sweden or Argentina, never from Japan or Germany.
These countries, if they were people, would be called ‘control freaks’. That is to say the governments of these countries seek to control almost all aspects of their citizens’ lives.
Interestingly this month I did get a couple of enquiries from Sweden. I have already helped some Swedes to get generic Hepatitis C treatment so I knew that Sweden’s rules were very anti-generics because I investigated the Swedish government’s regulations regarding importation of medicines for personal use. As it turned out importation of medicines for personal use into Sweden was prohibited and so these Swedes needed to travel to another country to get the meds. I successfully assisted them with this process and both are now cured of Hep C.
But with both these new enquiries from Sweden I thought I would give the ‘mail order’ option another try because both of these Swedes told me that they would find travel difficult, one due to the costs involved and the other due to ill health.
So after discussing options with them I asked my friends in India to do a test shipment of Daclatasvir to Sweden using a little postage ‘trick’ that I had used successfully with some other countries where importation of pharmaceuticals is frowned upon.
And I should make it clear here that yes I will, and do, use tricks and whatever other means I am able to use in order get around the rules and regulations created by governments who seek to prevent their citizen accessing generic Hep C treatment.
Also, because of the risks involved, I told the person in Sweden who I was organising this for that I would take all the risk of the shipment and if it was seized then I would bear the loss and refund his money.
So last week we shipped the generic Daclatsvir and a few days later discovered (via the tracking service) that the parcel had been blocked by Swedish Customs and was being returned to India. As you see from the photo above of that parcel we did get the Daclatasvir back, which was a relief.
So now Sweden is officially a no go zone for shipping generic Hepatitis medication. My little ‘trick’ did not work and I cannot afford to try again.
So where does that leave people in Sweden who have Hepatitis C?
Well Sweden, like most Western European countries has a very good free public health system; however like other countries the cost of treating all the Swedes with Hepatitis C is beyond the capacity of the Swedish Health Service budget so, like other countries, the Swedish system triages people with Hepatitis C and offers treatment based on how sick the patient is.
Until this year Swedes with Hepatitis C were only offered treatment if their fibrosis level was F3 or above. Recently this has been reduced to a fibrosis score of F2, which is a good thing but it still means that more than 75% of all Swedes with Hep C must wait until there is significant damage to their liver before they can access treatment.
Of course this significantly increases the chance of liver cancer and other health problems.
And naturally no-one wants to get sicker before they get treatment so, because of the Swedish government’s prohibition on the importation of licensed generic Hepatitis C medication, Swedes who want treatment will have to leave Sweden, travel to some other country, buy the meds and return to Sweden.
And whilst many Swedish doctors are prepared to monitor patients doing generic Hep C treatment the ban on generic importation has two effects, it discourages Swedes from seeking treatment and it increases the cost burden of getting generic treatment.
Swedes needing generic Hepatitis C drugs will need to travel to another country; either to a country in Europe or to India, Bangladesh or Thailand.
Fortunately, because of a network of volunteers in different European countries I am able to organise the shipment of generic Hep C medicines to countries where such importations are possible.
So next week the Swedish person to whom we send the parcel of Daclatasvir will fly to a European country that does not smother its citizens with paternalism and pick up a 12 week treatment of generic Sofosbuvir and Daclatasvir and by Christmas he will be cured of Hepatitis C.
19th October 2016
Hepatitis C Treatment in Serbia
The situation in Serbia for people with Hepatitis C is very unfortunate.
Like Sweden the Serbian Customs devotes a lot of time and energy and resources to stopping generic Hepatitis C medicines reaching Serbian people with Hep C.
Unlike Sweden Serbia does not have a public health system that can afford to treat Serbs with Hepatitis C regardless of whether they are F2 or F4. On top of this the general economic situation in Serbia is so dire that most Serbs earn below 100 euros a week and often much less than that.
For example last week I received an email from a Serbian woman with Hepatitis C who is a single mother who supports herself and her child on an income of 50 euros per week. She has no chance of getting treatment from the Serbian Public Health service and of course she has no way at all of affording the 60,000 euros that Gilead wants to charge her for Harvoni. Indeed she has no way of affording generic treatment, even if she could get it past the Serbian border guards.
So in Serbia there is a situation where the government cannot afford to offer any effective treatment to its citizens and yet goes to great expense to prevent those that can afford to from importing generic treatment. The effect of this is that Serbians who have severe Hepatitis C just get sicker and sicker and eventually must be hospitalized, thus costing the Serbian health system, the Serbian economy,
The first enquiry I ever got from Serbia was from a man with a young family who lived in rural Serbia. He (like many Serbs) contracted Hep C from a blood transfusion. He was desperate for a cure but was certain that there was no way I would be able to send the meds to him. I tried but they were stopped at the border and, thankfully, returned to India.
After much discussion we agreed that the best option was for him to fly to India however this was an extreme financial burden for him and furthermore he suffered from extreme claustrophobia which made flying to India impossible.
Knowing her father’s predicament his teenage daughter volunteered to do the trip to India and to reduce the cost of the trip a friend who also had Hep C offered to pay 60% of the airfare in return for the daughter bringing back two lots of generic Harvoni, one for her father and one for his friend.
But that was the complete end of their money, with the cost of the medicine there was no money left over for accommodation or cab fares or food or anything.
Here my contacts in India were able to assist and I arranged that when this brave young Serbia girl arrived in Delhi that one of my friend would be waiting for her at the airport exit to hand her the meds and she would then return into the airport and fly straight back to Serbia.
And so it was organized. On the day that this girl landed in Delhi, speaking little English and never having left Serbia previously, waiting for her outside the airport was my friend. He gave her the two treatments of generic Harvoni and she thanked him and simply turned around and walked back into the airport. Twelve hours later she was standing in front of her father with the medicines that would save his life (and that of his friend).
I have to tell you I was very glad when I received the email from Serbia saying that she had made it through the Indian Customs and the Serbian Customs and was safe back home with her family.
But it had worked after that I did organise a few of these excursions for Serbs however most Serbs that contacted me could not afford the expense of flying to India.
Then began a very frustrating time. I was regularly contacted by Serbs seeking advice on how to get generic Hep C treatment but could not find a way to get meds to them. A couple of times I was able to send to friends that they had in neighboring countries and the Serbs would drive across the border into Romania or some other country and bring back the meds but all in all there was no reliable way of doing this until I got together with two very creative and dedicated people with whom I was able to work out a system to regularly get meds into Serbia. One was a Serbian guy, a really dedicated and brave person who was prepared to risk anything to get generic hep C medicines to Serbs who needed them and the other was an India guy from Mumbai with whom I had previously done similar work
Obviously I cannot go into details about what we did and how we are doing it but I will say that now we are able to regularly get small numbers of generic treatments into Serbia.
However it is a drop in the ocean. On average we can manage to get 10 or 15 treatments per months across the border. It is a drop in the ocean. Serbia has about 60,000 people with Hepatitis C so 10 or 15 treatments is nothing.
What needs to happen is that the Serbian government MUST allow Serbs to import generic Hep C medicines into Serbia. Right next door Romania allows such importation. In Romania it only requires a Romanian doctor’s prescription and any Romanian with Hepatitis C can import generic Harvoni or Sofosbuvir+ Daclatasvir with no problem at all.
Recently Latvia changed its rules, which were the same as Serbia’s, and now Latvians can import generic Hep C meds.
Serbia must change its rules, if not then the Serbian government is directly responsible for the deaths of thousands of Serbs from Hep C every year, deaths that are completely preventable.
Next week the well know Serbian Hep C activist Dragisa Zekic (himself cured by generic treatment) will organize a large protest outside the Ministry of Health. There the protesters will ask for a change in the law to allow for the importation of medicines for personal use.
Dragisa has also recently written to prime minister of Serbia - Aleksandar Vucic. His message to the Prime Minister of Serbia was that all patients with Hep C should be permitted to import drugs needed to treat Hepatitis C if it is for their own personal use. He makes the point that there have now been many Serbs cured by Indian generics and these cures have been well noted by Serbia’s doctors and that this request to allow the importation of generic treatments has the full support of Serbia’s doctors.
If this change to the law is enacted in Serbia I believe that Serbia will be able cure all of its citizens with Hepatitis C and save the lives of tens of thousands of Serbs.
25th October 2016
On Being a Cured Guinea Pig
This week a friend of mine named Michael, a member of the Facebook group Hepatitis C Treatment w/o Borders, posted the sentence below with a photo of their end of treatment test results, which showed the virus was undetected two weeks after the end of treatment with generic Harvoni from India. He wrote:
Ultimately we all are guinea pigs ....and statistics. Allow me to throw my piece of paper on the pile - 2 weeks since EOT - RNA results - Virus Undetected: Generic Harvoni. Thanks Greg Jefferys and James Freeman for helping me to do this.
This post caused me to think again about the fact that we, the people using these Direct Acting Antivirals (DAAs), are indeed guinea pigs. We are being used to confirm how effective these drugs are and what their side effects are.
To a degree the situation with the release of the DAAs is quite unique. Because there were (and are) so many people with Hepatitis C and because Hepatitis C is such a deadly disease and because the previous existing treatment of Interferon + Ribavirin had such a low cure rate with so many terrible side effects, because of all these factors these new drugs, the Direct Acting Antivirals, were given approval very quickly by the medical regulatory authorities around the world.
The reason for the fast tracking of approval DAAs was that there were hundreds of millions of people with Hep C and, as mentioned, the existing treatment was so ineffective and so dangerous, there was nothing to lose by allowing the wide spread use of DAAs without extensive trials.
So the FDA in the United States and other regulatory authorities granted approval for Sofosbuvir and Daclatasvir and other DAAs based on relatively small samples of trial results.
And so we, the people who have now completed their treatment using DAAs were guinea pigs.
My comment/reply to Michael’s post that I referred to above was this:
“Yes we are all guinea pigs and there were side effects that I had not expected, that were not in the literature, but none of the side effects was as bad as having advanced, chronic Hepatitis C.”
And this is true. My treatment was Sofosbuvir + Ribavirin for 12 weeks. During treatment I experienced insomnia, occasional headaches, occasional extreme irritability (Riba-Rage) and a few minor aches and pains. At the end of treatment I had mild anemia and a few problems with coordination and some cognitive issues. For example my typing skills, which had been excellent before I started treatment, went to pieces and I would often do weird things like typing the same word twice or spelling words in reverse.
All these sides settled down over time so that now, more than 12 months after the end of treatment, my typing skills are back to their pre-treatment levels and I do not have “Sofosbuvir dyslexia”.
None of the literature mentioned side effects like the ones I had but because I wrote about them in my blog quite a few people contacted me to report that they had similar effects.
So we are guinea pigs. We, this first batch of people to complete treatment using DAAs, have shown that the Hepatitis C virus can be defeated and can be cured. That the cure rates are very high and the side effects are minimal for most people.
Occasionally people contact me because they are concerned that the pills are not working because they have experienced no side effects at all. Most people report minor side effects such as mild headaches, insomnia or nerve pains. Sometimes (very rarely) people contact me who are having very intense side effects and they are freaking out. Particularly unpleasant is severe depression which seems to be an issue with Harvoni. I guess one in every two or three hundred people has the depression issue. In all the cases I have been involved with this problem has cleared itself after about 2 or 3 weeks. And in all the cases I have been involved with the people have completed treatment and cleared the virus.
As guinea pigs we have also shown the value of online communities for support and sharing information. Online Facebook groups like Hepatitis C Treatment w/o Borders, Hep C Nomads, Livercom etc can both provide support for people with Hep C and share information on a personal level. Thousands of people who have been through treatment and understand the whole process and who are happy to share their experiences and insights with others going through similar things.
So we are guinea pigs, but we are smart guinea pigs who can help each other. We are guinea pigs who have been cured and who are happy to help others also be cured.
8th November 2016
The Business of Generics
Yesterday I received a comment on a recent post from my Blog that was a little distressing. This blog post of mine was shared in a Hep C Facebook book group that I am a member of and one of the group members got rather cranky and accused me of using the group and my blog to further my “business” of supplying generic Hepatitis C medicines.
Looking at the offending post I can see how, at first glance of that post, a person might see it as me “self-promoting” and take that position even though if one looked a little closer at what I do they would easily see that this is not the case.
Anyway the comment was a little upsetting so I thought I should explain my position in more detail and more clearly so there will be fewer misunderstandings of this type.
Firstly I would like to make clear that I do make an income from helping people access reliable generic Hep C medicines. I make this income by charging an optional fee for facilitating the whole process from initial enquiries to delivery. Part of that deal is that I make myself 100% available to people throughout the treatment period in case there are any issues that they need to discuss during treatment; issues that my general knowledge might them help with.
Apart from actually organising the supply of generics I also supply general information about accessing Hepatitis C treatment and will happily discuss various options that will work for people in different countries. For example if it is easier for a person to travel to India or Thailand or Australia or some other country to buy their treatment then I give them contact details of reliable suppliers, good hospitals and even good hotels.
I do not charge anything for providing this information or general discussions about treatment options, which represents about 50% of all emails I get.
Another thing I have been over the past year doing is working with doctors, academics and other activists to generate data sets for scientific papers that compare the cure rates of generic treatment with treatment by branded names. This has resulted in several published papers and will have profound effects over the next 12 months. Whilst I am not the prime mover in these projects I do spend about one day every week working on these projects.
I also work with other Hep C activists around the world figuring out ways of improving access to generic treatments for people in various countries where the government makes access to generic medicines difficult.
I also do quite a bit of work trying to get Hep C stories into the main stream news media to increase local and global awareness of the issues that surround Hepatitis C and its treatment.
And then I write my blog, which I hope provides useful information to people with Hep C around the world.
Because I am not sponsored by Big Pharma, like the World Hepatitis Alliance and many other activist groups, I do not get a wage or other financial help. But I am independent, my opinions are my own and I have no biases (I hope).
All in all I spend more than 40 hours per week working on Hep C related projects.
As I write this I am on a week’s holiday with my son but every day of two I must spend at least 4 or 5 hours at an internet café keeping up with emails.
So I charge a fee so that I can survive.
But it is an optional fee. I explain this fact on my website and in all the information sheets I provide. If a person is in a difficult situation financially then they only have to ask me and I will remove the fee.
Simple as that.
Because I believe in transparency and honesty I will also make completely clear the details of the fee I apply to my work.
Depending on the exchange rate of the day my fee is about 20% of the cost of the meds.
So, for example, at the moment generic Harvoni out of India costs AUD$1,000 for a 12 week treatment, including shipping, then I add my fee of AUD$200, so the total price, including delivery and all other required documentation, will be AUD$1,200. From what I know about pricing of Hep C generics around the world this is a fair price.
If you add to that the fact the having me facilitate the whole process gives a 100% assurance of the quality of the medicines and the integrity of the supply chain then it is a fair thing.
And as I said if a person is tight for money then they only have to ask me and I will remove my fee. I do not know that I can be fairer than that.
I would love to be able to supply the generic treatments for free, but it is not possible.
So yes I guess you might call it a business, or you might not. Not many businesses give their customers the option of removing the profit margin from the cost of a product.
9th November 2016
More good News from Romania.
Now days one of my great pleasures is sharing the stories of people who have taken control of their health and their lives and cleared the Hep C virus. It is always potent for me because, in most cases, I have travelled the journey with them.
In the this great Letter 'F' makes that powerful point that people with Hep C should not postpone treatment. The best time to start treatment is NOW!
Below is a story sent to me today from Romania.
As promised couple of weeks ago, when I received the long awaited SVR12 result, I am sending you this e-mail to let you know about how I am doing.
I feel NORMAL!
No more concerns about my liver, no more sleep issues, no more unexplainable fatigue, no more thoughts about what food to eat (I do continue to eat healthy, but I started to eat also food that was forbidden in the past), no more foggy brain.
In addition to this, I started to enjoy living my life again as a normal person and no more in "survival" mode: I am talking more with friends, laughing more, looking with optimism at the future and thinking on long term objectives. For a person who has been healthy their entire life, this is nothing spectacular, but for a person who has had a potentially terminal disease like me it is a completely new and wonderful change in my life.
Thank you so much for all that you did for me and all other HCV patients worldwide whom you are supporting or who have read your blogs and learned about the cure provided by the generics !!!
I hope that soon, although it is very relative to use this word, other people will get well through these medicine and that the stupidity related to the patent laws causing people to remain untreated, to sicken and die, will end.
What I see as being a good thing in Romania, is that more and more doctors became aware that the generic drugs are effective and they support the patients willing to take this path.
What remains as a challenge is to make people aware that if they cannot access the subsidized treatment provided by the healthcare system, they can take the generics.
You know what is interesting? When I started the treatment more than 6 months ago, the major concern of those around me was if the generics really work. Today it looks that the concern switched to "from where to take the real generics" and this shows evolution. People do know that generic works. Also, people around me (few however) no longer ask me whether the generics work, rather they ask me how I did it. And this is the point where I direct them to your blog and Fixhepc.
Despite all this, the war against HCV is far from being won. Winning this war involves on one side politics (on a macro level) and courage, eagerness to research and engaging in communication with others (on an individual level).
On a political level we cannot do much, but on individual level we may always say to whom ever we meet who is in need of help:
DO NOT STAND AND WAIT! HCV GENERIC DRUGS WORK! GET YOURSELF DOCUMENTED AND DECIDE!
That's a message that perhaps people should always see when they browse a forum, website or news about HCV.
I will end this post by thanking you again and wishing you a nice week-end. If I am not wrong, the spring already started in Australia, isn't it? I wish you a beautiful spring.