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
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 email@example.com
or through Janet Palm, President, MS Society, BC and Yukon Division at firstname.lastname@example.org
or 604 604 3217. Thank you in advance for your prompt attention to this important issue.
Past Chair, BC and Yukon Board of Directors
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