Tuesday, June 22, 2010

Letter to Canadian Legislators

In case you didn't see it on the TiMS site, here is a well-written letter from the husband of an MSer who had followed the House of Commons debate on MS that was sent to a long list of Members of Parliament:
Subject: Last Night's Debate on MS

I was one of the few people who was able to stay for the entire debate on Multiple Sclerosis in the House of Commons last night. Unfortunately, and no doubt despite an incredible stake in the matter, the MS patients in attendance simply did not have the physical stamina to last the entire session.

I’d personally like to thank each and every MP who attended or spoke during the session especially those whose personal stories and passion were so evident. For the most part I was pleased to see that a non-partisan cooperative consensus was reached that “everything possible must be done to expedite and fast track helping Canada’s MS patients.” For what it is worth I will provide what I believe to be a few key observations that I hope are worthy of your further consideration.

We certainly appreciate the funding that has been made available and believe that this contribution is vital to accelerate the search for answers. To some extent I think we understand the constraints that the Federal Government is faced with under our Constitution and the Canada Health Act and thus we recognize that there is only so much you can be held accountable for. Having said that there is an incredible sense across Canada that Government bureaucracy, strong stakeholder lobbies (MS Society, Provincial Medical College’s, Neurologists) and the Canadian conservative culture might easily squander precious time and money.

From a political perspective Canadians are incredibly frustrated with the waste associated with duplication, intergovernmental jurisdictional squabbling and bureaucratic time horizons. We get that issues have political subtleties here but it would seem that this issue is a real opportunity for politicians to show Canadians what can be done with the right leadership and will.

I thought that Hon. Mauril BĂ©langer (Ottawa—Vanier, Lib.) properly emphasized one of the key opportunities “One should never underestimate the power to convene.” I would like to suggest that this power can be further augmented provided:
  1. Time horizons are measured in days and weeks not months and years.
  2. There is a detailed attention to the makeup of the invited attendees – those of us who are spending a great deal of time in review of the issues here are quite concerned that the MS Society and Neurologists may have bias fuelled by the status quo. Please ensure other voices are heard.
  3. Even though we believe that the issue here is one of equality under the Canada Heath Act (why would MS Patients be subjected to a different standard than others with Vascular problems) we recognize that the issue has become one of a risk assessment. Given that we know that the risk associated with angioplasty is low enough to be indicated for those with a whole range of vascular problems we must assume that there is a perceived need to further asses the risk that MS Patients would bear an additional burden associated with the possible mental breakdown associated with false hope. Hopefully those setting the terms of reference and thresholds for the risk assessment can give MS patients the respect they deserve – yes MS Patients have their hopes up but we do not require state protection here. We are capable of assessing the risks of a letdown vs. the possibility that the procedure might halt our debilitating disease.
  4. The process and decision framework for any collaborative meetings must be designed with care to ensure that all options remain open. In my mind this should not be a situation that deteriorates into and either or scenario (either we study more or we open up the floodgates) but one where simultaneous tracks can safely coexist. It seemed clear to me that the Hon. Leona Aglukkaq (Minister of Health, CPC) position was pretty entrenched in the “study more” camp. Given that there is a rapid deterioration for many MS patients day after day we would respectfully suggest that risk assessments need a low threshold. When is enough evidence enough evidence? Is there really a potential harm requiring more study here or might a dual approach be considered that simultaneously studies the results in a post operative longitudinal study?
  5. At a time where PST/GST and G20 issues infuriate Canadians it would seem an opportune time to divert some national attention to a story most people can get behind. Do what you can to convene one meeting (not 13 meetings) of Provincial Health Ministers and show Canadians you can understand the issues, work together, cut through red tape, save us all some money and protect our health ideals.
Once again I’d like to thank all of those who participated in last night’s debate. We know that you have many priorities but will never-the-less be watching very closely to see if you can indeed make a real difference.

Thanks again!


PS. My wife has MS and we are watching her deteriorate very rapidly at this moment.

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