Past MS Society of Canada Board Chair calls for action

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

Past MS Society of Canada Board Chair calls for action

Postby happy_canuck » Wed Nov 03, 2010 12:44 am

Lynn Hunter gave me permission to distribute her letter to the BC government. She makes a good case about BC's MS population. By rights, we should see $20 million in funding if we match Saskatchewan's commitment.

It's refreshing to see MS Society executive members lending their voice to help us out.

~Sandra

Link to letter on Facebook (cut and paste into browser -- sorry!): http://www.facebook.com/note.php?create ... 8864617733

p.s. I'll copy the text across for those not on Facebook tomorrow -- it's late and past my bedtime :-)
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby garyak » Wed Nov 03, 2010 10:02 am

It's when people who have MS or a family member with MS who have connections to the MS society or neurology ( Dr. Hubbard's son, Devin ) these positions are adopted. We need more MS society brass with family members having MS to have the balls to write these letters. Well done Lynn Hunter!
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Postby welshman » Wed Nov 03, 2010 10:20 am

This letter by a Past President of BC & Yukon MS Society Chapter is extremely confusing. The MS Society of Canada is one of the major problems in getting acknowledgement of CCSVI as a contributor to the MS Disease progression; at both the Federal & Provincial levels of Government, the MS Society of Canada has advised that nothing should be done until there has been full trials of the correlation of MS and CCSVI - like that hasn't been shown already by all the studies and procedures from around the World - they have together with the Canadian Institute of Health Research put a block on the Federal Government getting involved - they are advising Provincial Governments that it is too early to fund any full clinical trials - the Canadian & US Societies are going to waste $2.4 million on studies which have already been done around the World and fund researchers who will not have been trained in the Zamboni Protocols and who have admitted they really don't know what they are doing.

And yet, here we have a letter written on MS Society of Canada paper which suggests that there really is a connection between MS and CCSVI, that it may in fact provide relief and improve quality of life.

How can this be, has the MS Society of Canada changed its Policy or is it that the B.C. & Yukon Division have come to their senses ??

Like I said I'm confused so perhaps Sandra you could ask Lynn Hunterr to explain this stance. I fully support everything she says, but where does the MS Society of Canada and its BC & Yukon Division fit ninto this ?????
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Postby happy_canuck » Wed Nov 03, 2010 3:25 pm

The BC & Yukon division may be more supportive than is broadly known. I am in Victoria (as is Lynn Hunter) and my local branch of the MS Society has supported CCSVI in several ways, including:
- handout of US clinic and doctors' names offering treatment
- no fewer than 15 newspaper articles on CCSVI on main bulletin board (I counted them today), lots of pre/post stories and calls for access to treatment
- in May, this chapter loaned us a table and other equipment for our May 5 rally on the legislature
- in August, this branch distributed our CCSVI meeting announcement to their mailing list, resulting in over 275 people attending
- they also loaned us video equipment for our Aug 9 CCSVI session

So, Lynn Hunter may be not as out of step with BC/Yukon division as she seems with National. If I get the chance, I will ask her. Stay tuned!

We're dealing with the resignation of our BC Premier today, so I think Lynn's call for action will have to wait, unfortunately.

In the meantime, here's the text of her letter:

October 27, 2010

Honourable Kevin Falcon
Minister of Health Services
Room 337, Parliament Buildings
Victoria, BC V8V 1X4

Email: kevin.falcon@gov.bc.ca; kevin.falcon.mla@leg.bc.ca

As the Past Chair of the Board of Directors of the MS Society of Canada, BC and Yukon Division, and a parent of a person with Multiple Sclerosis (MS), I know firsthand how desperate people are to find effective therapies for this debilitating disease. My 34 year old daughter was diagnosed with MS over twelve years ago. She has tried to attack her disease with good humour, a positive attitude and whatever her doctors suggest to try...daily injections, exercise, handfuls of pills, chemotherapy, steroids and even blood transfusions in the hope of some relief...and it is not working. As a young person living with this devastating condition, she feels she has no other options in Canada so she is currently fundraising so that she can go to the USA for the CCSVI procedure.

There are approximately 8,000 people in BC with MS and their families who are anxiously seeking the best treatment options for their disease. They want answers and access now. Many British Columbians are spending thousands of dollars to seek the CCSVI treatment abroad as they see this as their only hope to improve their quality of life. Not only are they spending their life savings, they are taking considerable risks travelling to other countries. It appears that Canadians are spending millions of dollars to seek this treatment, all outside of Canada.

The MS Society of Canada, BC and Yukon Division recently received information from MOHS regarding the Ministry’s position on CCSVI. The statement that your Ministry will be “paying close attention to the results of the studies funded by the MS Society of Canada and the US“ is disappointing. Though we appreciate your interest in these studies, it is critical that we continue to advocate for comprehensive and expedited research on the best treatment options for people with MS.

Earlier this month, the Government of Saskatchewan announced it is investing $5 million to fund clinical trials for the Multiple Sclerosis CCSVI liberation procedure. The MS Society of Canada applauds the Saskatchewan government’s commitment to accelerating CCSVI and MS research. This $5 million funding announcement represents a significant contribution towards helping the MS community come closer to answers on this important topic.

The Alberta Health Minister recently announced the formation of a provincial government committee to review all aspects of service for people with MS including analyzing the implications of approving and funding CCSVI. Manitoba recently pledged $500,000 to fund CCSVI clinical trials. The MS Society of Canada, along with the National MS Society contributed $2.4M to fund diagnostic clinical trials on the relationship between MS and CCSVI as well as committed $1M for future therapeutic trials.

However, during the years it takes to set up and fund a study, patients are not getting treatment. Many, like my daughter, don’t feel they have the time to wait. It is essential that clinical research is funded and carried out now, not in two years, so that people with MS do not have to assume personal and financial risk by pursuing treatment by providers of uncertain ability in remote locations and who do not provide follow-up care.

To the best of our knowledge, no one is tracking how many people from BC are travelling to other countries for this procedure nor monitoring the outcomes of people who have sought CCSVI treatment internationally to accurately know the impact. Research studies in these areas are desperately needed.

It is now the Government of British Columbia’s turn to step up. By committing to funding CCSVI research now, BC will demonstrate this province’s commitment to supporting and improving the quality of life for people with MS.

Our province is known to be a leader in Canada however BC has not demonstrated leadership on this issue. Canada has a very high incidence of MS and it is incumbent upon our province to ensure that those affected by MS receive the very best treatment options available.

On behalf of the thousands of people with MS in BC, I am asking that your Ministry match Saskatchewan’s commitment of $5M to CCSVI research. Considering Saskatchewan has about one quarter the population of BC, this is a reasonable request. Our request is that you set aside funding now so that when therapeutic clinical trials take place, BC can respond quickly in order to expedite the process. At the very least, BC should convene local experts to form a BC MS Task Force as Alberta has done. It is time to show that BC cares about the quality of life for people with MS.

I also ask for you to convene a meeting which would include you, Ministry personnel and representatives from the MS community to further discuss this issue. I will follow up with your office in mid November to make these arrangements. I can be contacted via email at hunterlynn@shaw.ca or through Janet Palm, President, MS Society, BC and Yukon Division at janet.palm@mssociety.ca or 604 604 3217. Thank you in advance for your prompt attention to this important issue.

Sincerely,

Lynn Hunter
Past Chair, BC and Yukon Board of Directors

cc.

Janet Palm, President, MS Society of Canada, BC and Yukon Division
Adrian Dix, Opposition Critic for Health
John Dyble, Deputy Minister of Health Services
John Bethel, Assistant Deputy Minister, Stakeholder Relations
Val Tregillus, Executive Director, Primary Health Car
Elisabeth Wagner, Executive Director, Corporate Policy Research & Library Services
Fraser Randall, Ministerial Assistant
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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