Funding trials of CCSVI: Can the MS Society do better?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Funding trials of CCSVI: Can the MS Society do better?

Postby Chrystal » Fri Apr 16, 2010 5:30 pm

I thought Dr. Brandes' article below deserved to be posted as a new topic... ... etter.aspx

Funding trials of CCSVI: Can the MS Society do better?

April 16, 2010 13:41 by Dr. Lorne Brandes

The good news emanating from this week’s American Academy of Neurology (AAN) meeting in Toronto was that, although skepticism abounded, Dr. Paulo Zamboni and CCSVI were not ignored by “the establishment”. Far from it, judging by the conference’s special session devoted to debating and discussing his controversial new theory that MS is primarily a disease caused by blocked neck or chest veins.

In addition to Dr. Zamboni, a panel of MS experts, a large crowd of neurologists, and more than 4,000 patients from around the world attended the event on line... surely a first for any medical meeting, and indicative of the pivotal role that the Internet has played in galvanizing an MS community enthralled with the Zamboni hypothesis and unhappy with currently-available immunosuppressive therapies.

Now the bad news: despite a willingness of investigators to move forward, there appears to be a major stumbling block in obtaining the monies required to fund the human clinical trials needed to learn whether blocked neck and chest veins cause MS, and whether unblocking them will truly benefit patients with the disease.

For example, in the absence of public funding, Dr. Robert Zivadinov, head of the largest CCSVI study at the University of Buffalo, requires patients to pay several thousand dollars to be tested.

In Canada, ambitious clinical trials planned at UBC, McMaster and the University of Saskatchewan have been delayed for lack of funds. They remain on hold pending the results, expected in June, of a special MS Society-sponsored grant competition. But, as reiterated in a report on CTV’s W5, successful applicants will receive a maximum grant of only $200,000 over two years.

"I am quite convinced as a result of the excitement, the mobilization, the media attention, the process of discovery is going to be much accelerated," Yves Savoie, the president of the Canadian MS Society, told W5.

Much accelerated? By awarding each needy centre (how many, we do not yet know) a total of $200,000 to carry out these sophisticated, expensive and highly important studies? Is he kidding?

As one involved in laboratory and clinical cancer research for over 35 years, I must tell you that, given the costs required for any type of human investigation, especially one as complex as a study of the potential relationship between CCSVI and MS, this is a paltry sum, by any standard. A strategy that spreads small amounts of money among many investigators will accomplish very little at the end of the day.

Can’t the MSS do a lot better than this? Indeed, how much of the money they raise each year actually goes to funding research?

To answer this question, I obtained a copy of the Society’s most recent financial statement, audited by Price, Waterhouse, Coopers, LLP.

Here is the bottom line: for the year ended August 31, 2009, the Canadian MSS took in revenue of $33,677,000. Of that amount, $28,503,000 came from donations (including $1,197,000 from the United Way) and fundraising events.

The amount spent on research? Twenty-two cents out of every dollar collected, for a total of $7,324,000.

As for how the rest was allocated:

• $10,495,000 was spent on services to patients
• $889,000 to help fund MS clinics
• $2,806,000 for chapter and volunteer support and development
• $4,086,000 for public awareness and education
• $1,570,000 to cover “government and community relations”.

So here is my question to the Canadian MSS: could you not spend less money educating people about a disease of which they are already well aware, and stop spending over $1.5 million on government and community relations (whatever form that may take)?

By making those specific budget cuts, you might easily free up several million dollars to help Canadian centres move ahead with their CCSVI trials without jeopardizing patient care, or taking away from other funded research projects.

Given the importance of this issue, I hope you will give serious thought to this suggestion.
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Postby Brightspot » Sat Apr 17, 2010 4:09 pm

Thanks for posting this Chrystal.

So great to read a well researched and clearly articulated assessment of the situation from someone in the medical community!!

I have written to him asking if he could review the MS Society's CCSVI ïnformation sessions (for example the one from Calgary which can still be seen on the itnernet) and provide his opinion as a physician regarding

1/ the quality of the information provided
2/ any apparent bias on the part of the presenters
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