Canadians Write a letter to a politician about CCSVI today!

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

More letters please!

Postby Brightspot » Tue Mar 16, 2010 11:37 am

My next plan is to ask to meet with my MLA to hand deliver some letters from friends and neighbours. I will ask if she would like to receive the letters at her office in Vancouver or in Victoria on the steps of the legislature. Also calling out to any one who would like to meet with their MLA. I am more than happy to go along for support.
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Postby PCakes » Tue Mar 16, 2010 1:26 pm

The B.C. Ministry of Health is replying to all e-mails with a form letter stating that "to date CCSVI diagnosis and therapy is unproven. The Ministry of Health relies on direction from Neurological community regarding anything to do with M.S.".. basically they are doing nothing. In my opinion this further substantiates our need for proof that MS is not the only concern with CCSVI.
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Postby SoberSandy » Wed Mar 17, 2010 7:01 am

Hello PCakes - thank you for your information. I think it might benefit us to seperate the CCSVI from the MS at this point in time. This might make it easier for the Min of Health and help them see that Neuros are not the guiding light for Vascular Abnormalities. To fight for CCSVI tests and treatment only (although this will be a lot) will be a more likely step to achieve. I have found some information from a Doctor in England who states that CCSVI is a congentital condition. Perhaps the BC Ministry of Health needs some education. I hope this will help. Here is the quote from Dr. Tom Gilhooly:

It has now been established beyond any doubt that CCSVI is a definite clinical entity. The uni0n of International Phlebologists which represents 47 countries, unanimously endorsed this as a new condition at their conference in Monte Carlo in 2009. They decided Professor Zamboni had established “proof of concept” for this new condition. The papers from Zamboni and most recently from Buffalo University in New York have also established that there is a definite association between CCSVI and MS. It has also been established that CCSVI is a congenital disorder and precedes the development of MS.

Please check out his web site which contains a monthly newletter:
Essential Health Clinic CCSVI News <ccsvi@essentialhealthclinic.com>

Could you please post the email you received from the BC Min of Health. I am in the middle of a email conversation with my MPP staff regarding CCSVI testing and treatment and she keeps asking for my mailing address which I have not given her. I do not want her to mail the standard letter to me. I want to try to give her more information so she will come to see that this needs to be brough up properly to the government. I am in Ontario and I will let you know how this turns out.

I think it might be a good idea for all of us to put any ideas we have together so we can get past these road blocks.

CCSVI is a vascular condition and the Neurological community has nothing to do with it - it is the domain of the Cardiovascular community. I really think if we seperate the vascular condition of CCSVI from MS we will get further. Keep it simple and clearer for them.

I find it discouraging and it angers me but I believe persistant, polite education of those in power is the only way to go.

This is the response I just got from my MPP office:

This treatment is still in the experimental stage. Trials are taking place in different countries, I have heard that some Canadian/Ontarians researchers are planning to also embark on clinical trials. The MS Society would have more information, I believe they've set up a dedicated page on their website.
The Ministry of Health and Long Term Care does not itself conduct clinical research. The Ministry is committed to ensuring that Ontario's health care system is supported by the best research. The ministry's Research Program does not support clinical and biomedical research as its mandate focuses on health services research to inform policy decision making. Two main sources of research funding for clinical research are the Ministry of Research and Innovation (MRI) (http://www.mri.gov.on.ca/english/about/default.asp) provincially and the Canadian Institutes of Health Research (CIHR) (http://www.cihr-irsc.gc.ca/e/779.html) is the major federal agency responsible for funding health research in Canada. The ministry does uptake clinical, applied, population, health services, etc. research as does the LHINs who would provide the treatment for multiple sclerosis

Let me know what you think of their answer - Thanks.
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Postby PCakes » Wed Mar 17, 2010 10:32 am

Gday s.s... I'm just peeking in from my office.. and will post the Ministry reply e-mail, along with comment, as requested from home later today.
Till then, in brief, I am in complete agreement with your comments regarding plan of action... and would be happy to work with you on this.
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Postby SoberSandy » Wed Mar 17, 2010 6:43 pm

Hi PCakes - looking forward to hearing from you - looking forward to working together with you also.
Here is the reply I sent to my MPP this afternoon and the reply I got back from her:

Hello:

Thank you for your response. It is always good to know where the government is regarding important issues in people's lives - especially life-improving and/or life-saving issues. I will spend more time looking at the websites passed on to me so I will get a clearer understanding of the Ministry of Health's stance.

I do have a few questions regarding CCSVI research. I hope you will be able to pass these questions on to the Ministry of Health and Long Term Care for further discussion. There are a lot of people looking for answers regarding this. I understand the Ministry of Health and Long Term Care does not conduct research themselves but approving CCSVI testing and treatment would be within their jurisdiction, would it not?

1) Will our Canadian researchers have to repeat all the research that has already been done elsewhere or can the researchers use completed research from other countries as a foundation? If research from other countries can be used I have included some websites which will take you to various medical papers showing the results of CCSVI research. See list below.

2) I have been informed that CCSVI has already been scientifically, medically declared a congenital condition and that opening up the veins has medical benefits to the patient. Why does the Ministry of Health state that regarding CCSVI , the research is only in the experimental stage? We are getting different information from different sources. Please see the following quote from Dr. Tom Gilhooly:

"It has now been established beyond any doubt that CCSVI is a definite clinical entity. The uni0n of International Phlebologists which represents 47 countries, unanimously endorsed this as a new condition at their conference in Monte Carlo in 2009. They decided Professor Zamboni had established “proof of concept” for this new condition. The papers from Zamboni and most recently from Buffalo University in New York have also established that there is a definite association between CCSVI and MS. It has also been established that CCSVI is a congenital disorder and precedes the development of MS."

3) Other countries have accepted the completed research and are therefore offering CCSVI testing and treatment. CCSVI is a proven medical fact according to these countries. Why has Canada not come to the same conclusion and thinking we are still at the experimental stage? We have so much research information that convinces us CCSVI is a congenital condition that requires treatment.

4) What do you suggest to the united people of Canada (who have read most of the research and who are convinced CCSVI is a medical congenital condition which needs treatment) do in order to expedite this concern through the necessary formal channels in order to help the truth about CCSVI be revealed and dealt with. We have a lot of people many of which have time to help and all of which have a strong desire to help this cause. What can we do to help? We want to work together with you!

Please forgive me if I am sending this information and requesting help from the wrong area of government. If this is so please let me know where to and who to send this request to. We really want to get the answers.

Websites containing research on CCSVI, for your consideration:
(followed by about 50 websites containing various CCSVI research papers)

My MPP's response to my email:
Please forward your full mailing address so that I can send a formal letter to the Minister and request a formal response with your further request for answers. Thank You.
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Postby PCakes » Wed Mar 17, 2010 10:28 pm

Hi SS... I'm finally home and back online.. past midnight for you... First.. the response from your MMP, although non-commital, unlike mine, had some useful info in it... links to other areas that might serve you/ us better especially the CIHR. I'll be using that one!
Your response and keeping the dialogue alive is great. I'll be anxious to see where this takes you.
As far as shifting the focus of CCSVI.. I completely agree with you on this one. I declared myself as 'a person living with CCSVI' on this site a long time ago. Gonna be tough.. CCSVI is already linked to MS in most doctors minds. Yes, we have The uni0n of International Phlebologists declaration, what we don't have is a connection, professional acknowledgement, documented proof that any or all of our symptoms are a result of this disorder. Once sourced I think we will have the ammunition we need to demand treatment. Cheerleader attempted this with Dr Scafani. No luck. The vascular surgeon I saw, although very interested, felt his hands were tied by the code of ethics. He could not offer treatment until he was certain of a problem as well as certain of the corrective therapy.
This catch 22 is one of the downsides of the Canadian Healthcare System. There is no room for risk takers.
okay..enough of my chatter.. time to write some more letters...:)

Here is the e-mail response I received.. I made no reference to MS in my original e-mail..

From: Health, HLTH HLTH:EX [mailto:HLTH.Health@gov.bc.ca]
Sent: March-15-10 4:07 PM

Dear,

Thank you for your email of January 29, 2010, regarding the “Liberation Treatment” for Multiple Sclerosis (MS).

The MS Society of Canada still states that Chronic Cerebrospinal Venous Insufficiency (CCVI) has not been proven to be the underlying cause of MS. Dr. Joel Oger, a Vancouver MS clinician and researcher, has cautioned patients to wait until the entire approach is investigated further.

Research into the “Liberation Treatment” is considered experimental. According to the General Preamble A.9 of the Medical Services Commission’s (MSC) Payment Schedule, the Medical Services Plan (MSP) does not insure experimental treatments.

The Ministry of Health Services relies on the expertise of the Section of Neurology of the British Columbia Medical Association to determine if a given treatment is an accepted standard of care in British Columbia (BC) currently. This ensures BC tax payers are funding proven therapies.

As MSP is not a funding source for research, such funding would come from facilities such as the University of BC, the MS Society of BC and MS clinics.

For more information about the “Liberation Treatment” for MS, please contact your nearest BC MS clinic at:
...followed by a list of MS clinics...
Do they really think that we don't already know where the clinics are? hmm
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Postby SoberSandy » Tue Mar 23, 2010 2:26 pm

Hello PCakes - sorry for the long delay in getting back to you - I was out of town for a few days. I am really stumped here. I continue to go over your quote, "what we don't have is a connection, professional acknowledgement, documented proof that any or all of our symptoms are a result of this disorder". With all the research that has already been done and all the doctors we have on board how is it that we do not have professional acknowledgement or documented proof? I thought the declaration from the uni0n of International Phlembologists would be enough. What about all the work BNAC has done? I thought the code of ethics states 'to save life at all cost'. I am new to this area of medical decision making so will need guidance as to how to proceed. I want to help as much as I can - any suggestions would be appreciated.
Sandy
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Postby PCakes » Tue Mar 23, 2010 5:43 pm

Hi SS Welcome back..
Agreed again.. all the research and the results are a solid positive reflection of the MS/CCSVI connection. What I am trying to say and what I think is. we need a CCSVI / 'non' MS connection. We need doctors to say " yes, CCSVI is recognised condition (Intnl Phlebs) and it needs to be addressed because _______ " and this would be based on similar defects in other areas of the body and the resulting damage.
We are not getting treatment because they want the MS connection proved. If we can uncover another legitimate effect... how can we be denied?
Thoughts...?
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Postby PCakes » Tue Mar 23, 2010 5:49 pm

I think Cheerleader was trying to get Dr Sclafani to commit to this issue...

Cheerleader quote... "Do you believe other vascular surgeons and interventional radiologists agree with your opinion (and Dr. Dake's and many others) that jugular and azygos vein stenosis/collateral circulation is damaging to the the brain and spine? Why should we be concerned with CCSVI? Even if CCSVI does not affect MS, is this condition harmful on its own?"
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Postby Chrystal » Wed Mar 24, 2010 7:26 am

FYI, posting a notice from 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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MERCK FROSST & PFIZER SPONSORING CANADIAN PATIENT SUMMIT

Postby Brightspot » Wed Mar 24, 2010 1:46 pm

Chrystal
Thank you for the post and the link to the First Canadian Patient Summet

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.

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

SoberSandy
Thanks for your postings. I agree that persistant, polite education is required and I thank you for doing your part.

Pancakes
Thanks for your postings too. We do indeed need to keep a dialogue happening.

We must get our decision makers, and our doctors to recognize that they cannot deny us testing, (and if indicated), treatment for a serious vascular problem on the basis that we have been diagnosed with MS. We do not need to know what causes MS, to recognize that another serious health issue has been proven to be associated with it. The association indicates that we should be tested. If a serious vascular condition is identified in any person, that condition should be assessed and if it has a negative effect on health it should be treated. It is indeed not neurosurgery!!

Does any body know of anyone who will be attending who can speak in an unbiased manner about the interests of MS patients, who have been proven to be at risk for a serious vascular condition and are being denied even testing, not to mention treatment.
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Postby Chrystal » Wed Mar 24, 2010 4:28 pm

Hello Brightspot,

Thank you for your reply.

The MS Society, many other advocate agencies and pharmaceutical companies are sponsors of this summit, and the Minister of Health and various MPs will be in attendance.

Have a look at the website and the agenda. From the quote below 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.

"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."

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?"

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."

Brightspot, 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 and there will be positive change in favour of patients' interests.

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.

Take care and God Bless,
Chrystal
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Postby SoberSandy » Wed Mar 24, 2010 7:23 pm

Hello: I am planning on attending the Patient Summit and am looking for assistance in formulating our most important questions we need answered. I am hoping we can connect to brainstorm, pool our ideas, organize them and create clear questions which demand staightforward answers. Chrystal and I are able to attend - is there anyone else out there? My area of weakness is understanding why, in the face of a massive amount of research, does our government think we are still in the experimental stage. PCakes has written, we need "a connection, professional acknowledgement, documented proof that any or all of our symptoms are a result of this disorder". This is where I am stumped - do not know what to do to get past this.
Sandy
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Postby TFau » Wed Mar 24, 2010 7:33 pm

SoberSandy:

I am so with you on this. That is where I'm stumped: what does it take to get the "experimental" label lifted for OHIP purposes? In addition, it's a surgical procedure and trying to fit it into the double blind/control group seems fruitless. Is there something that would indicate what is placebo and what is real vis a vis the reported improvements.

My only problem is that I don't think that I can make it - I won't be able to leave the kids then (Monday morning, right?). Also, my husband doesn't have the energy to watch the kids on Sunday. I'm in Oakville.
Is it possible that I can conference call in to brainstorm? I'll PM you my home number.

Thanks and good luck!
Theresa
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CCSVI to be discussed at BC Legislature send letters

Postby Brightspot » Wed Mar 31, 2010 12:17 am

]
On Sunday evening Adrian Dix (Member of the British Columbia Legislature and Opposition Health Critic) told us that he will bring the matter of CCSVI screening and treatment before the legislature for discussion. 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 case. Telling your story to a politician is a great way to get them on your side. Even a short note can send a powerful message. He came to the meeting telling us he was aware of the issue as he had received some letters about it.
He listened respectfully to our concerns.

All Canadians might want to write to the Federal Health Minister and Federal Opposition Health Critic.

Let us all, at the very least, cut and paste and send!
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