I am writing this next instalment of my blog sitting in the back seat of a taxi driving from Udaipur to Jaipur in India. The driver artfully uses horn and steering wheel to weave his way through the traffic. Brightly decorated trucks, motorbikes carrying four or five people, tractors pulling massive loads of chaff, sacred cows wandering aimlessly across the four-lane highway bringing all traffic to a halt. With the driver’s favourite Indian music playing he gives me the promise that we will stop for lunch in an hour.
So I have pulled my laptop out and will use this time to reflect again on the events of past year and recent months.
Last night, sitting beside the sunset smeared lake in Udaipur, I learned that the trailer for the documentary that was filmed last year in Mumbai was now on the internet. It seems that this yearly cycle is still in full force as the documentary was expected to go to air at the end of 2017 but now, in April 2018, the trailer is up.
The documentary is called “Drugged” by Foxhound Productions, a USA based documentary company. As I mentioned earlier this doco focuses on Big Pharma’s activities in the USA rather than the global situation. My involvement was because they decided to use the Hepatitis C situation as a good example of how Big Pharma makes its pricing policies and to what lengths Big Pharma will go to remove competition.
USA presidential candidate Bernie Sanders concludes the trailer with the comment “Big Pharma owns Washington.” He says this because it is true. Big Pharma has the resources to do whatever it wants, when ever it wants. Big Pharma can buy politicians and other people, easily. It can infiltrate social media groups, orchestrate smear campaigns and manipulate the news media.
Big Pharma is a powerful beast and I will be interested to hear about the reason for the long delay in the documentary being aired on television in the USA… I would be betting the Big Pharma has tried to block it!
So; speaking of blocking let me tell the story of how I was blocked from a Facebook group I was instrumental in creating.
Taking up from what I wrote in my last post; things went along pretty well for a few months after my website was destroyed. I built a new website that was more secure than the previous one. I thought I was pretty safe from further attacks but it was not long before the next cyber-attacks occurred. Not hacking attacks but attacks via social media, where a lot of my work takes place. Trolls and professional manipulators.
These were very well-coordinated attacks… three strikes one after the other in rapid succession, all hitting me within a 24 hour period.
The first two attacks were on my Facebook presence.
Hepatitis C and Facebook
A lot of my work is about disseminating information about Hepatitis C treatment options. For this I use whatever form of media I can access. Facebook is a very good forum.
Whilst Big Pharma thrives on mis-information and censorship, my belief is that the truth, the dissemination of factual, truthful information, is always the best option. I am against secrecy, against scheming and backroom deals. I am against lies, falsehoods and half-truths. I am for transparency and openness.
So you see I am diametrically opposed to Big Pharma and the various groups it supports.
When I first went to India to buy generic Sovaldi a journalist friend strongly suggested that I should write a live blog of my experiences. So I wrote a blog on my website where it was seen by US based Hep C activist/nurse named Lucinda Porter. Lucinda asked permission to copy my blog onto the Hep Mag blog site where it immediately attracted a large following as so many people were interested in more information about the generic Hep C situation.
At this early stage I also began to post on the US based Facebook Hep C support group Hepatitis C Family and Friends. At that point in time Family and Friends was the largest Facebook based Hep C group. However it was strongly aligned with the World Hepatitis Alliance (a Big Pharma funded “advocacy” puppet organisation) and was extremely anti-generics. Very quickly Admins from Family and Friend banned any discussion that involved suggesting or discussing the option of generic Hep C treatment.
A few weeks into my treatment, when I had received the test results that proved my generic treatment was working because my viral load was already undetectable and my liver functions had all returned to normal levels, I got into heated conflict with the Admins of Family and Friends because I argued strongly that information about generic treatment was critical to giving people a complete picture of all their available treatment options.
Three other members of Family and Friends also took a pro-generic position and after having number pro-generic posts deleted we four grouped together and decided to create our own Facebook group.
So the co-founders of Hepatitis C Treatment w/o Borders were Giten Khwairakpam, Jacki Chen, Alexander Macrae and myself. Giten suggested the name, Jacki created the actual page and I created the artwork for the group’s profile.
To cut a long story short from its formation in late 2015 the W/O Borders group grew rapidly until by February 2018 Hepatitis C Treatment w/o Borders had over 7,000 members, 2,000 more members than Family and Friends.
During the years between 2015 and 2018 we added a few more people as Admins to share the work load, including prominent New Zealand based activist Hazel Heal. It also seemed that we had reconciled, to a degree, with Family and Friends. But things were going on behind the scenes.
Giten, Alexander, Hazel and I were regularly on W/O Borders with Jacki only making a show every now and then. He seemed involved in other projects and a little worried about the legal aspects of advocating for generic Hep C treatment in the USA.
I regularly posted information about Hep C and generic treatment options whilst a core group of members created a caring and informed online community. All was going along reasonably smoothly until one day fine day in March 2018, a day like any other, a guy in the USA posted on Family and Friends that he had just learned that he had Hep C, that he had no money and no insurance and that he was freaking out.
I offered to provide him with Sofosbuvir and Daclatasvir for US$350, a price that was below my cost price.
Part of my work is ensure that price is not a barrier to people accessing treatment. So anyone who is short of money simply has to ask me and I will provide the Hep C treatment at my cost or below.
So it was a BIG surprise when this offer was almost immediately deleted. So I posted it again, and the offer was deleted again. So I posted it again and it was deleted again.
Next thing I knew I had been blocked and banned by the Admins of Family and Friends.
Both shocked and surprised I posted about the experience in W/O Borders and promptly received a message from Jacki Chen stating that he did not want me involved in W/O Borders anymore, that it was his group and he was removing me as an Admin and blocking me from the group. He also removed and blocked Giten, Alex, Hazel and the other Admins that had been appointed since 2015.
Jacki was the Big Boss because, by a strange stroke of fate, Jacki had actually made the page. He was the top dog Admin and could boot the rest of us off… Wow, we were all stunned! No-one had seen this coming…. It was a coup… W/O Borders had been hijacked by Jacki!
As with the 2017 attack on my website, which totally removed my internet presence, this attack removed my Facebook presence. In 24 hours I had gone from interacting directly with the two largest Hep C Facebook groups in the world with a combined membership of about 12,000. Now I was now only able to interact with a few of the smaller groups such as Hep C Nomads.
Interestingly immediately after the coup some of the Admin from Family and Friends became Admins on W/O Borders. Go figure that one…
The response to the coup from the W/O Borders membership was interesting. As with the destruction of my website people came quickly to my aid. I formed a new Facebook group named Hepatitis C Treatment Cure and Community. The previous Admins from W/O Borders joined this new group and within a few weeks we had more than 500 members.
Now while all this was happening, in the same 24 hour period, I received my third body blow from Big Pharma.
I was sitting drinking my morning coffee, thinking about the Facebook saga of the previous day when my phone rang and a voice at the other end introduced himself as being an official from my bank. He politely informed me that the bank would be closing my website’s online credit and debit card facility.
I had created this online shop on my website about 6 months previously simply to help those people who preferred to purchase by that method. It had been working quite well and a lot of people were using this facility because it removed the charges that banks made for wire transfers and could be done from the comfort of home.
As I was still dealing with the emotional distress caused by the hijacking of W/O Borders I was a little fragile and this news nearly tipped me over the edge. I was being attacked on all fronts.
As I battled with the shock and tried to stay composed I asked the bank dude why they were closing the online facility. I knew that there had been no complaints from any of the people who had made purchases through it. The bank dude simply stated that he did not know why but that the instructions had come down from his superiors high above him to close it.
Now this guy was actually really embarrassed about being told to do this and kept apologising to me. When I pressed him he said there was nothing he could do, there was no right of appeal and that they would be closing the facility in one month’s time.
At first I got really angry then I let go of it… there is no point getting angry about things you cannot change and I knew that no amount of noise that I could make would make those invisible puppet masters change their minds.
Once again, the corporate giants had wacked me.
In just 24 hours I had received three major blows to my operation. Certainly, these hits slowed things down but I have bounced back. Negotiations are underway with another bank to bring my online payment facility back to life. My new Facebook group is growing rapidly and everything is going well once more. As with any wound it will take me some time to recover … but recover I will.
Of course, I know that even as I write this post for my blog, weaving through the Indian traffic on my way to Jaipur, Big Pharma is working on some other wicked plot; some way to reduce the number of people who can access cheap generic Hep C treatment. What their next attack will be I cannot guess but, unless the next attack involves a bullet, whatever Big Pharma does I will figure out a way around it and I will keep on helping people with Hepatitis C to access affordable treatment.
I would like to end this section of my blog with a quote from John le Carré, author of the novel The Constant Gardener. in the first edition of the 2001 novel he provided both a dedication and a personal afterword. Part of the afterword is reproduced in the closing credits of the film.
“Nobody in this story, and no outfit or corporation, thank God, is based upon an actual person or outfit in the real world, but I can tell you this, as my journey through the pharmaceutical jungle progressed, I came to realize that, by comparison with the reality, my story was as tame as a holiday postcard”.