1st Canadian Patient Summit Toronto (March 28 & 29)

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

1st Canadian Patient Summit Toronto (March 28 & 29)

Postby Chrystal » Wed Mar 24, 2010 7:20 am

Hello Everyone,

Just posting a notice I saw on http://www.facebook.com/ccsvi.ms.toronto.canada

"First Canadian Patient summit in Toronto . Open to the public -- MS Society is attending. Links below to registration, media release and government website, full agenda, with options to submit your feedback online if you can't attend:

http://www.canadianpatientsummit.ca/

CANADIAN ASSOCIATION OF WOUND CARE | The First Canadian Patient Summit

www.newswire.ca

Patients want a say in government decisions about their health TORONTO , March 22 /CNW/ - More than 100 patients living with chronic medical conditions will share their solutions for ensuring that patients are part of government…

Keynote Speaker on March 29 – Hon. Deb Matthews, Minister of Health, Ontario
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CHECK OUT THE SPONSORS..MERCK FROSST, PFIZER, MS SOCIETY

Postby Brightspot » Wed Mar 24, 2010 1:54 pm

Thanks for your post Chrystal

I went to the site and was extremely alarmed to see that amongst the sponsors are Merck Frosst Canada, PFizer Canada Inc. and the MS Society of Canada.

I am a Canadian patient with MS.

None of these organizations represent my interests. They do not speak for me, and I am convinced that they speak against my interests.

Does any body know if there will be a representative there for all of us MS patients who, according to 2 important studies are at risk for a serious vascular condition and are being refused testing and assessment, based on the fact that we have MS?

We do not need to know what causes MS. Cause of MS is not the issue here. Persons with MS have been proven to be at risk for a serious vascular condition. We ought to have access to testing, and to assessment by specialists qualified to assess vascular conditions. Anyone with a vascular condition which can compromise their health has a right to have that condition treated, whether they have MS or not!!
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Postby babiezuique » Wed Mar 24, 2010 2:22 pm

This is it! We are not searching for links... we want to be treated like other people with vascular issues!
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other sponsors eli lilly and glaxosmithkline

Postby Brightspot » Wed Mar 24, 2010 2:29 pm

Wanted to get this out for people`s attention and did not notice on my first browse that Eli Lilly and GlaxoSmithKline are also sponsors.
I cannot yet find any information on the website, as to how to register or what it costs to attend.
Will look further and perhaps email the organizers.
I am hoping somebody from the area will be able to attend and speak out on our behalf.
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Postby iggy » Wed Mar 24, 2010 3:14 pm

Well said, Brightspot.

At a recent visit to my GP I was asked to fill out a short questionnaire with 1 question - Are your concerns being addressed here at the clinic? which I filled in with an emphatic 'no'. There is a follow-up online survey that I haven't seen yet.

The more venues where we can express our concerns and requirements, the better!
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Postby Chrystal » Wed Mar 24, 2010 4:12 pm

Hello Brightspot, Babiezuique and Iggy,

Thank you for your replies.

Regarding registrations for this summit: I sent an e-mail to the contact address: info@canadianpatientsummit.ca asking if the summit was open to all patients and expressing interest in attending as an MS patient for over 15 1/2 years. I received a welcoming response with a registration form and a waiver form to fill out and return, which I have done. The contact person said that there is no charge to participants.

I really want to attend, so will be doing plenty of resting up before to ensure I have the energy.

If you read entries from patients in the section "Your Story", you'll notice that these are patients with a variety of illnesses, so this summit is geared to patients with any illness.

I did see the list of sponsors, yes - the MS Society and many other advocate agencies are sponsors, as well as pharmaceutical companies. In attendance will be a number of MPs as well as the Minister of Health.

Have a look at the website and the agenda. From the following quote on the website's home page, it appears that this first-ever Canadian Patients Summit is a most timely event considering what we MSers are going through at the moment with regard to CCSVI - and accessing testing and the procedure locally. On the 29th at 10:30am, the Panel will be speaking on "Is the patient voice heard in Canada today?" And at 12:30, George Smitherman speaks on "Can local governments support greater patient involvement in living well?"

"Living with a health condition means we see first-hand the challenges of accessing health in Canada today.

Yet our perspective – that of the patient voice – is rarely heard by health policy decision-makers.

March 28 & 29 we are coming together to explore ways our patient voice can be heard. We want to make a difference so that healthcare meets the needs of all 32 million Canadians."

Another quote: "More than 100 patients living with chronic medical conditions will share their solutions for ensuring that patients are part of government decisions on the future of Canada's health care system."

I think this would be a wonderful opportunity for any of us who are able to attend. My hope is that at last, maybe patients and our loved ones (our true advocates) can really have a voice that is not only heard, but listened to. We have been writing to the various MPs, etc., and I'm hoping that in this forum the ones attending will take into account our feedback and our votes.

If anyone from here is attending and you would like to meet up, please let me know.

Take care and God Bless,
Chrystal
chrystalgomes@rogers.com
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Postby SoberSandy » Wed Mar 24, 2010 6:47 pm

Hello: I will be attending the Patient Summit - Lets work together to formulate the best questions to present (if there is an opportunity - a question and answer time).
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Re: CHECK OUT THE SPONSORS..MERCK FROSST, PFIZER, MS SOCIETY

Postby PCakes » Wed Mar 24, 2010 11:23 pm

Brightspot wrote:Thanks for your post Chrystal

MS patients who, according to 2 important studies are at risk for a serious vascular condition and are being refused testing and assessment, based on the fact that we have MS?

We do not need to know what causes MS. Cause of MS is not the issue here. Persons with MS have been proven to be at risk for a serious vascular condition. We ought to have access to testing, and to assessment by specialists qualified to assess vascular conditions. Anyone with a vascular condition which can compromise their health has a right to have that condition treated, whether they have MS or not!!


Perfect..this is perfect!
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post here if you send your story to the Summit websit

Postby Brightspot » Sat Mar 27, 2010 2:18 am

Re the First Canadian Patient Summit
If people send their stories to the Summit website they might like to remove their identifying information and post them here to share them. Or just a quick post if you submitted a story letting us know if they posted it on their website would be interesting.
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Postby Vhoenecke » Sun Mar 28, 2010 5:29 am

Of course I didn't know what to write so I just jotted something down because I knew it wouldn't be looked at. I will put what I said in bold on this site because people will look at it.

I am a 46 year old woman with RRMS dx Jan 2009. I have been "ill" for a number of years but took a long time to get diagnosis. I am a wife, mother of 2, and teacher. I am unable to work full time and will be going on full sick leave next year. Recently they have found that MS patients have problems with the veins in their neck. This news excited me because I thought finally someone is recognizing the neck problems that I have complained about for years. When I gave my neurologist the symptoms of intense pressure in my neck she told me that was not neurological therefore nothing to do with MS. I responded that this was everything to do with MS. My husband was in the room with me and witnessed me discussing this symptom on at least 3 occasions with my neurologist. Once the news of CCSVI came out I was excited to know that so many MS patients had vascular issues in their neck. Now it finally made sense why I displayed stroke-like symptoms. I thought great they will angioplasty my neck and I will be on my way feeling better. I did not think cured but feeling better as anyone would with a vascular issue that was treated. To my surprise I found out that because I had MS I was not able to get tested for a problem in my neck. This situation very much disturbed me because I thought that in a country like ours if someone had a vein problem it would be at least tested and if treatment was not offered or available I could go somewhere to get it done. I am very disappointed in the medical communities for not testing MS patients in Canada to see how many are having trouble with their veins. If it is 50% with vein problems that is too many and they should be allowed to be treated. What has happened to the health care in our country to virtually ignore a health crisis of at least 75 000 people. We are doctors, lawyers, mothers, fathers, sisters, brothers, sons and daughters. We need help, we need to have our veins looked at are we asking too much?
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Thoughts

Postby fiddler » Sun Mar 28, 2010 6:21 am

Thanks for volunteering to go folks, and carry our message to them. May I suggest one additional thought: I expect that part of the discussion will be (should be) how to make improvements to the health care system affordable. This is where one of the MSers can pipe up and say something to the effect that if CCSVI proves to be one of the greatest causes of MS, then getting CCSVI assessments and liberation treatments done as soon as possible will save Canadians and the health care system directly many billions (less need of expensive drugs, less need for intervention of the health care system) and will save the Canadian economy many more billions (getting people back to work). With so much riding on this, why do the health care and health research systems seem to be sitting there with their thumbs up there a$$es instead of moving on this?

OK, maybe you might not want to say the last sentence quite that way... :D
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby annad » Sun Mar 28, 2010 6:59 am

Good points fiddler! Including your last sentence! No chance of missing that point!
I submitted "My Story" to them.
a
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Postby babiezuique » Sun Mar 28, 2010 8:02 am

I send to them my story fiday night!
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back from Summit..

Postby Brightspot » Tue Mar 30, 2010 11:44 pm

I was delighted to meet up with Chrystal and SoberSandy in Toronto. They are fantastic advocates. Also there making a strong case for our CCSVI screening and treatment in Canada was Brian, an excellent speaker representing msliberation.

We spoke individually at every opportunity, and met to present our case as a team on a few occasions. I believe we increased CCSVI awareness to some extent.

We met with Adrian Dix, opposition Health Critic for British Columbia. He will bring the matter forward for discussion in the BC Legislature. The more letters and email messages he receives from British Columbians in the mean time the more powerfully he will be able to present our concerns.[[/b] Telling your story is a great way to get a politcian to take action on your behalf. Even a brief note sends a strong message.
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MS SOCIETY NATIONAL VP OF GOVERNMENT REALTIONS SAYS...

Postby Brightspot » Wed Mar 31, 2010 1:07 am

I had the opportunity to talk with Deanna Groetzinger, National Vice President, Government Relations, Multiple Sclerosis Society of Canada. She was attending the First Canadian Patient Summit, which she was on the steering committee for. I understood that she had been working on the steering committee for some months . No where on the MS Society website could I find any mention that there was Canadian Patient Summit under developement. It was not posted on any of their websites, and I am told no mention of it was on their official facebook site. Interesting that they would not wish to share information about their involvement in this summit prior to the summit taking place.
When I approached her, and mentioned my interest in CCSVI, Ms. Groetzinger said to me "there has only been one study". It appears from her title that she is representing the interests of MS Patients to our Government. I found this alarming.
To her credit, Ms. Groetzinger did agree to meet with five of us at our request. Chrystal, SoberSandy , Brian (a well spoken representative of msliberation), and young woman who is a university student recently diagnosed with MS, and I sat with her and explained our concerns. I cannot say I am confident that any progress was made.
I did invite the MS Society to make a public statement that on the basis or recent scientific evidence that it would seem prudent for G Ps to screen MS patients to see if they also have a condition of compromised vasculature.
Please do not hold your breath on this one. Your brain needs all the oxygen it can get.
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