Thursday, May 13, 2010

Where does our money go?

Have you ever wondered just how much of your donation to MS charities were actually channelled towards research? It's always been my belief the majority of funds raised were utilized for this purpose. I'm not certain why, must have accepted our society's explanation on faith alone yet this year probably influenced by my involvement as spokesperson it fuelled a desire to dig a bit deeper, what I found was disappointing to say the least.

Ever since being diagnosed in 1994 my spouse and I have solicited our families and friends to raise funds for our MS walk, then there is our yearly Carnation drive etc. etc.. All of this in the hopes that someday the money being poured into research would result in a payoff a benefit for everyone with MS. Perhaps being naïve as to how these funds were allocated it provided me with false expectations. We were, in my opinion led to believe that most of what we raised was directed towards research. In fact very little is allocated for this purpose, reading the financials reminded me of large government agencies where work is basically self generated as a result of internal policies and procedures, the likes comparable to a perpetual motion machine operating on its own negating the need for any fuel or external input of any type.

Looking over the financials for the year ending August 31, 2009 I found the Canadian MS Society took in $33,677,000 most came from donations and various fund raising events. Of this amount a grand total of $7,324,000 was spent on research, that ladies and gentlemen translates to $.22 out of every dollar raised for research. Not exactly what I expected, as a matter of fact it is in my opinion a farce a joke and if you have the disease a slap in the face.
After seeing this I thought for certain there must be some mistake, certainly I must have misinterpreted the data so I decided to take a look at our own province yet unfortunately the findings supported the national financials. How on earth we will be able to find a cure given this type of funding? Short of a miracle we are quite simply out of luck.
If you would like to see the financials all one has to do is Google "MS Canada financials."

Funding research is probably something relatively new for the MS Society, other than handing out a few dollars here and there most if not all of the research conducted in the past were funded by pharmaceutical companies. Recently due to the immense pressure received by the public regarding CCSVI research the MS Society announced funding for several centers to be announced sometime in June for research regarding CCSVI. The maximum grant for each successful application "clinic" is $200,000 over two years, that's hardly enough to pay for a neurologist never mind mounting a study of any kind. Who are they trying to kid with this type of funding could it be perhaps just a way of dealing with the immense pressure after all we wouldn't be able to say they're doing nothing.

It doesn't take a brain surgeon to determine this research will be going nowhere, how can it given this type of funding?
It is also fairly evident that anyone with progressive MS who can no longer walk or those of us who have lost fine dexterity will not be considered for this study. We simply wouldn't meet the standards required by the current protocols in place for evaluating patients during trials.

I'm afraid anyone looking for results may need to take matters into their own hands, yet even that is proving to be difficult as the president of the physician Council in Québec Dr. Yves Lamontange and his colleagues managed to close the only opportunity for people to receive privately funded examinations at the only clinic in Eastern Canada capable of providing these specific Doppler's.
His response when interviewed on television is that they have not stopped the clinic from performing these examinations, as far as the doctor is concerned it was a recommendation only and the clinic must have seen the light by stopping this procedure for people with MS.

Remember these are tests which are not funded by the provincial health-care system and require patients to pay for the procedure out of their own pockets, we can no longer do that?

The sign at the Westmount clinic reads as follows

Please note that we are no longer booking the Jugular Vein Doppler for Venous Insufficiency. We have been advised by the college des medecins to hold off on them until they officially rule on the practice of this exam. We regret the inconvenience this may cause however we have agreed to comply with this request and will not offer this service until further notice.

This is the link to the clinic

I can go get a facelift a tummy tuck even a Doppler providing I do not have MS, if that's not outright discrimination I have no idea what is. Virtually down the clinic in Montréal "the only one in Eastern Canada" which provided examinations to determine the existence of venous insufficiency. The cost for this examination is not paid for by our provincial health-care, fees were paid for from the pockets of patients wanting to know if they suffered from this condition. The interview by Dennis Levesque with Dr. Lamontange went further, at one point when pressured by the interviewer the doctor responded, all they have to do is schedule a Doppler and not tell them they have MS.
I guess this proves that education and intelligence do not necessarily go hand-in-hand.

If I want to have any type of cosmetic surgery done I need no one's approval as long as my finances allow it can be done. If I need to visit a private clinic in order to obtain an MRI or x-ray even to have blood drawn for testing all that is required is the almighty buck. However if I am a patient that suffers from MS I am not permitted "at least in the province of Québec" to pay for the required examination.

The end result is that patients are going elsewhere for the required examinations, there's a clinic in Vancouver and I believe one in Toronto. There is even a doctor in Ontario who has not only performed the Doppler yet has performed the corrective procedure pro bono on half a dozen patients. Others who cannot obtain these tests locally are willing to travel to other countries spending thousands of dollars to have this done.

Personally since I suffer from MS I would certainly like to know if I have this condition that is a given. Anyone who could afford it would probably want the same, so I may be heading to another province, a trip on the West Coast would be nice. As for the procedure the clinic in Poland is booked solid for 2010 and part of 2011 yet I'm on the list hoping that something will develop in Canada before I must make a decision.

Finally, I tried to find a link to the television interview with the doctor yet for some reason it appears to have disappeared from the archives. I wonder why?


Anonymous said...

From what I can gather, it appears that the US National MS Society spends only $0.42 on research for every dollar raised.

MikeH said...

$.42 on the dollar is certainly better than what we are doing yet it's still pretty weak.
I guess that's what happens when you hire executives to run charitable organizations and pay them hundreds of thousands of dollars. From what I understand the head of our MS Society of Canada receives approximately $195,000

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