This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. Brandes is still advocating for us. Here is his latest Open Letter to Canada's Minister of Health, posted on CTV website. Dr. Brandes is an oncologist, but he continues to speak out publicly about CCSVi. Thank you Dr. Brandes.

Here's the letter and the link to the website:

Dear Minister,

I am going to be a little more direct in my remarks than the writer of last Friday’s Globe and Mail editorial. With respect, I believe that you, and ultimately, Canadians living with MS, were poorly served by your advisors.

Your staff (and, ultimately, you) appear to have left the decision solely up to the Canadian Institutes of Health Research (CIHR) and The MS Society of Canada, as to who was included in the panel of experts that met in Ottawa on August 26th to advise you on whether to conduct a national clinical trial of venoplasty for the treatment of CCSVI.

No one can say that the invitees were not all pre-eminent physicians and scientists. They were. However, the problem that I, and many others, have is that, to the last individual, these experts represented just one side of this important and complex issue.

As a result, the negative answer you received was certainly predictable.

As you well know Minister, the rules of debate require the participation of two sides. Similarly, the courts demand that the prosecution and defense be given equal time. On that basis, where were those who could have presented the case for CCSVI clinical trials?

For example, had Dr. Sandy McDonald been invited, he could have reviewed for the other panel members his now considerable experience in the diagnosis of venous abnormalities in patients with MS, as well as discuss and update the outcomes in his six patients who had venoplasty procedures many months ago. Although limited, Dr. McDonald’s findings point to the possibility that some people with progressive forms of MS may indeed derive a durable benefit,from venoplasty, contrary to Dr. Zamboni’s results. That is something you needed to hear but did not.

If Dr. Mark Haacke had been asked to participate, he could have presented the results of his most recent findings using 3-dimensional magnetic resonance venography (3D-MRV) to assess the highly abnormal vein anatomy which he now believes is present in almost all patients with MS. He also could have elaborated on his specialized MRI studies that show a significant increase in iron in MS plaques, consistent with Dr. Zamboni’s hypothesis.

And what about the University of Buffalo trials that now include performing venoplasty on patients with proven vein stenosis? Was a single member of the Buffalo group invited to Ottawa to present its latest findings? No.

But, you may answer, the work of all these individuals, as well as that of Dr. Zamboni, was thoroughly reviewed by the CIHR panel. Minister, that’s the same as saying, “Were my worthy opponent present, he/she might argue…, but since he/she isn’t….”.

That such back and forth discussion could not, and did not, happen is a great tragedy.

As another example, how would those currently opposed to CCSVI treatment trials have responded if someone from the “other side” had been present to point out that, in the early, remitting-relapsing (RR) stage of MS,British studies show a worse outcome with beta-interferon and glatiramer acetate (Copaxone) than no treatment? Yet these highly expensive drugs continue to be prescribed to patients with the RR form of multiple sclerosis as though this troubling finding did not exist.

Given that fact, how do the same neurologists on the panel, who continue to prescribe immune-modulating drugs of questionable efficacy and significant toxicity, justify their current refusal to recommend a trial of unblocking veins in patients with progressive forms of the disease for whom there is no effective therapy?

Finally, Minister, you may wish to reflect on the response of Saskatchewan’s premier, Brad Wall, who has stated that, despite your acceptance of the CIHR panel’s recommendation to not proceed, he and his government remain committed to funding a clinical trial of CCSVI treatment, even if the outcome proves negative.

As I have stated previously, in matters of health Saskatchewan has historically led the way. Minister, it’s not too late for you and your government to change course and follow Saskatchewan’s example.

http://healthblog.ctv.ca/post/An-open-l ... CCSVI.aspx

A great feet to the ground view of the situation that normal people and us as patient can understand. Our Ministers can't seem to grasp the interaction needed to listen to the two sides needed to explain fully as Dr Brandes said.
Thank you Dr Brandes and Blaze in bringing this to light.

NormB

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In a perfect world, my Neuro would like to be a vascular specialist.
'92 diag RR - '05 SP

Yes this Doctor is on the right side and the right track. I am certainly hoping that he did in fact "SEND" this to the Hon Agluqakk and that it's not just a blog with the title "An Open Letter". Anyone have an idea ??