If you have not yet read Anne Kingston's article on how Canada has failed people with Multiple Sclerosis, published this week in Macleans, please read it here:
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The damning facts regarding the CIHR's response to CCSVI research are found in e-mails Anne Kingston compiled and published; thanks to her investigative abilities and the access to information (ATI) request of Macleans. Many of the e-mails have been redacted, sections blacked out by the CIHR to protect the names of those involved--but as you read through the e-mails, it is easy to see that the CIHR was more concerned with how they appeared to the public, and coordinating a "message" about CCSVI with the MS Society, then actually pursuing research in earnest for people with Multiple Sclerosis. This has been a tragic failure. Reading these e-mails gives us a glimpse into the inner workings of a bungling bureaucracy (ala Terry Gilliam's Brazil) It is especially heart-breaking to see a health dept. employee refer to Multiple Sclerosis as "muscular sclerosis."
There was precious time wasted in obtaining medical papers regarding CCSVI on PubMed--it's really not that difficult, and shouldn't take several people to figure it out. Marie purchased dozens of papers through PubMed for her book. I've puchased them too, as an individual, for my own research pursuits as a layperson, and linked them on this site. I'm sure many of our readers know how to do this. How could the CIHR not know how to get papers from PubMed?
Why did the CIHR never contact Dr. Zamboni regarding his research? All of his CCSVI peer-reviewed publications are available on his website, Hilarescere Foundation, in toto and for free. How come the CIHR couldn't figure this out? These papers were online since the first conference in Bologna in 2009. That's how I had the links up on this page in 2009. A quick google search would show them the articles are here:
link to publications
The most terrifying information was seeing in print what we have been hypothesizing for three years---that the pharmaceutical industy is involved in creating national MS policy --this was confirmed by the e-mail published on page 12a.
link to pharma mention here
The Health Minister's office was contacted directly from an EMD Serono official--"The Director of Government affairs for EMD Serono"-- wanting to discuss CCSVI. EMD Serono felt they had the right to ask for a meeting with the Health Minister to discuss a vascular condition. They also wanted to discuss their new oral drug, Cladribine--a drug that has since been abandoned- when it couldn't meet FDA requirements.
As Marie wrote tonight-was anyone else struck with the knowledge that there is a person whose job it is to be "office of government relations" at Merck? Like how much business goes on between the government and a pharmaceutical company that they have an entire office and staff devoted to that? is the sole purpose of this office to influence policy?
We know about lobbyists in the US--paid employees whose sole job is to affect legislation and health policy. What is concerning is to see that these pharma lobbyists are interested in discussing a vascular disease. An area outside their expertise. Why?
Here's the gentleman who was Director of "Patient Access and Government Affairs at EMD Serono" during 2010.
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Especially egregious is the e-mail to CIHR president, Alain Beaudet from Christine Fitzgerald--coordinating a message on why Dr. Zamboni was not consulted, nor asked to participate in any discussion or meeting regarding CCSVI. Dr. Zamboni discovers a new disease, creates a diagnostic protocol, treats patients with angioplasty, documents his results, and the Canadian government does not think speaking with him is a good idea. Why? Fitzgerald suggests this reply in an e-mail, to see if he thinks it will satisfy pwMS in Canada.
"Inviting Dr. Z would be highly inappropriate- the scientists will be discussing how one could best evaluate his work. What do you think?"
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It's now 2012. Over four years since the publication of Dr. Zamboni's first CCSVI papers. Over three years since Jeff and Marie were treated at Stanford. Over two years after Dr. Peter Liu recommended large, multi-center clinical trials in Canada for treatment for CCSVI. Time marches on. Thanks to Anne Kingston for all her hard work for Canadians with MS---(and that stands for Multiple Sclerosis, Gary.)
Joan
