How MSSC Advocated 4 Tysabri Funding

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

How MSSC Advocated 4 Tysabri Funding

Postby Chrystal » Sat Aug 07, 2010 8:09 pm

FYI. How the MSSC & their Medical Advisors advocated for Tysabri Funding

Read the letter they sent below, signed by CEO Yves Savoie & Dr. Mark Freedman, and copied to Dr. Paul O'Connor.

One of the very i-n-t-e-r-e-s-t-i-n-g lines in their letter:

"The MS Society is also cognizant of the worries concerning the long term treatment with natalizumab (Tysabri). Nevertheless, until new recommendations regarding its safety are available, we do not feel that this should further delay the availability of natalizumab for all of our patients."

Hmmm. They threw caution to the wind when it came to a drug treatment...not so protective of us patients when a drug treatment was concerned, were they? And notice their sense of urgency in getting this drug treatment to a patient.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

http://www.msdurham.com/treatments/tysa ... ackground/

Tysabri Approved for Funding: Background

January 25th, 2010 | Author: MS Durham

Tysabri, a fifth disease modifying drug (DMT) for MS, had been approved by provinces of Quebec , Alberta and now Saskatchewan (as July 1, 2009) for reimbursement by provincial drug plans. Due to the expense of the therapy ($40 000 per year) some conditions were included by the various provincial funding plans before funding was approved. Mostly these conditions consisted of failure under 2 previous uses of currently approved drugs was required before Tysabri could be approved in these 3 provinces.

The advocacy occured with MPPs all across Ontario . In Durham Region letters were sent to all 5 Durham MPPs with this additional information and a letter (see below) to lobby Honourable David Caplan, Minister of Health and Long-Term Care, requesting that the Committee to Evaluate Drugs (CED) approve funding for reimbursement the Ontario Trillium Drug plan.

The letter included was from Yves Savoie, President Ontario Division and from Mark Freedman, Director MS Research Ottawa Hospital and internationally renowned research neurologist, requesting funding approval with no conditions be attached. The gist of the letter is neurologists should be allowed the freedom to prescribe what they feel is the best therapy for their patients. A copy of this letter is provided at the very end of this article.

Finally, approval was given by the Exceptional Access Program on September 30th for individuals whose condition worsens after 6 months while under treatment with one of the other EAP approved drugs for MS. The Ontario Drug Benefit Program will approve an initial treatment period of 6 months for patients requiring the administration of Tysabri for the treatment of Rapidly Evolving Severe Relapsing-Remitting Multiple Sclerosis (RES-RRMS) with renewal upon application by patient’s neurologist.

RES-RRMS means 2 or more disabling relapses with incomplete recovery in previous year, failure to improve with one other DMT (like Copaxone or Rebif) over a period of 6 months and MRIs showing lesions on the brain or increasing number lesions on brain compared to a previous MRI.

The following is from a letter dated December 16, 2009 from Deb Matthews, Minister of Health and Long Term Care giving more detail about its approval process for Tysabri:

In response] to your letter to the Honourable David Caplan, former Minister of Health and Long-Term Care, regarding coverage of the drug Tysabri used in the treatment of Multiple Sclerosis.

I am pleased to tell you that Tysabri may be considered for funding under the Exceptional Access Program (EAP) according to specific criteria for the treatment of Multiple Sclerosis.

As you may know, Ontario has an established process for reviewing requests for drug funding under the public drug program. For manufacturer initiated submissions, the ministry's expert advisory committee, the Committee to Evaluate Drugs (CED), reviews and considers the drug's clinical value and conducts a thorough assessment of the scientific and clinical evidence contained in the manufacturer's submission, as well as the impact on health services compared to existing treatments.

The CED then makes a recommendation to the Executive Officer on whether or not the drug should be listed in the Ontario Drug Benefit Formulary or considered for funding on a case-by-case basis through the EAP. The Executive Officer will make the final decision as to whether a drug should be funded based on the CED's recommendation, the overall budget and public interest.

In March and May 2009, the CED reviewed a submission from the manufacturer of Tysabri. The CED reviewed the clinical evidence contained in the submission and noted that Tysabri appears to have an effect in the treatment of Rapidly Evolving Severe Relapsing-Remitting Multiple Sclerosis (RES-RRMS). The CED also recognized that RES-RRMS is a very debilitating disease where there is limited alternative therapy available. However, the CED was concerned with the true cost-effectiveness of funding Tysabri as there were many limitations to the economic analysis provided in the submission. As a result, the CED recommended that Tysabri be considered for funding on a case-by-case basis through the EAP for Multiple Sclerosis.

For your information, as part of the background for this article, the following is the letter sent as part last summer’s advocacy by Social Action Directors from Yves Savoie, President, Ontario Division, and Mark Freedman, Director MS Research Clinic Ottawa Hospital

As well two very clinical papers supporting this proposal were sent as well but are not included here due their length and technical nature.

~~~~~~~~~~~~~~~~~~~~~~~~

Here is the actual letter they sent:

April 23, 2009

Ms. Helen Stevenson

Assistant Deputy Minister & Executive Officer

Ontario Public Drug Programs Division Hepburn Block, 9th Flr. 80 Grosvenor St Toronto ON M7A1R3

Dear Ms. Stevenson:

We are writing on behalf of the Multiple Sclerosis Society of Canada, Ontario Division. We are writing on behalf of the Multiple Sclerosis Society of Canada, Ontario Division. We are aware that you and your officials are considering the inclusion of natalizumab (Tysabri) for reimbursement by the Ontario Drug Benefit Program.

The MS Society is very pleased this review is underway. We believe that this new therapy should be available to people with MS who may benefit from it as soon as possible. As you are aware, Health Canada approved Tysabri in September 2006. In February 2009, the Canadian Expert Advisory Committee of the Common Drug Review recommended that publicly funded drug programs add Tysabri to their formularies, under certain criteria.

The MS Society welcomes the CDR recommendation. However, we would like to point out that the treatment of MS is highly individualized, and people with MS and their physicians need to have the widest choice possible to manage this often disabling disease. We note the CDR recommendation requires, among other criteria, that people not qualify for reimbursement of Tysabri until they have failed on treatment with two other disease-modifying therapies.

The definition of “failure” has been a difficult one, prompting Canadian neurologists to adopt a different definition of “sub-optimal” response to therapy (please see the attached papers published in the Canadian Journal of Neurosciences, 2004; 31: 157-168 and 2008;35: 127-129). In the CDR recommendation, failure is based on two criteria. The first is the appearance of “disabling” relapses; however, “disabling” is never defined. Second, failure is described as the appearance of new MRI activity. This is problematic given that adequate access to MRI scanning is an ongoing issue in Ontario . This approach to “failure” within the CDR recommendation defeats, to a large extent, the otherwise cautious and responsible recommendations of the CDR.

Leading MS neurologists generally agree that early intervention with effective therapy to control the disease poses the best chance for long term benefit. Delaying access to effective therapy could result in potentially avoidable disease progression and disability. Most MS neurologists consider there to be a “window of optimal anti-inflammatory based therapy” based on time, and once people with MS advance beyond the window, such treatments become less effective. There is little evidence that a person otherwise tolerating a first line disease-modifying therapy (i.e. interferon-beta or glatiramer acetate) who experiences a significant “sub-optimal” response will respond to a different first line therapy. The concern is that these people with MS might be advancing quickly out of their “window”, and the best treatment might very well be a course of therapy with natalizumab.

Currently the alternative, escalating treatment for people with MS who are no longer responding to interferon-beta or glatiramer acetate, is chemotherapy such as mitoxantrone. Delaying this “escalation” by requiring another 6-12 month treatment period with another first line agent could easily put people with MS into a situation where the escalation therapy, when it is finally used, is ineffective at staving off disease progression.

Additionally, as mentioned, there is inadequate access to MRI, particularly with gadolinium enhancement, in many parts of the province of Ontario . Thus, requiring access to ascertain the status of MRI activity in patients may add yet more delay. We feel that putting natalizumab in the hands of our experienced neurologists to be used as an important treatment option is imperative. The MS Society is also cognizant of the worries concerning the long term treatment with natalizumab.

Nevertheless, until new recommendations regarding its safety are available, we do not feel that this should further delay the availability of natalizumab for all of our patients.

The MS Society therefore urges you to move quickly to include Tysabri among the MS therapies that are reimbursed, and that criteria for reimbursement be developed based on input from our expert MS neurologists. Specifically, we urge that expert advice be sought on the CDR recommendations based on “failure” so that patients who experience a sub-optimal response to first line therapy have available to them natalizumab for use at a time when it is apt to have its maximal benefit.

In addition, we urge the criteria include people who are currently doing well on Tysabri and have to move from an employer-paid extended benefits plan to the publicly-funded drug program because of reasons outside of their control. This would ensure that these individuals need not discontinue treatment due to financial circumstances.

In a clinical trial of two years' duration, (the AFFIRM study), 942 individuals received either Tysabri or inactive placebo. The treated group experienced a 42 percent reduced risk of progression of disability, a 68 percent reduction of clinical relapses, and an 83 percent reduction in the development of new or newly enlarging MRI-detected brain lesions. Tysabri also reduced the mean number of enhancing (active) MRI lesions by 92 percent after the first and second year. These results were published in The New England Journal of Medicine 2006;354:899-910.

In addition, it is important to note to date, all countries in Western Europe, many in Eastern Europe , Australia and the United States (through Medicare and Medicaid) have agreed that Tysabri should be reimbursed as an appropriate treatment for multiple sclerosis. Quebec has also agreed to reimburse the cost of Tysabri under certain criteria.

In a country with one of the highest rates of MS in the world and internationally recognized and experienced MS clinicians leading the way in MS research it is imperative that physicians have in their hands all the options necessary to optimally treat people with MS and that includes the choice of therapy and access to proper imaging. All provinces, including Ontario , should strive to make these options available to people with MS.

A representative of the MS Society will follow up with you to schedule a meeting at your earliest convenience.

Yours sincerely,

Yves Savoie
President and Chief Executive Officer Director, MS Research Clinic

Mark Freedman, MD, FRCP(C)
President, Ontario Division Ottawa Hospital

Cc Paul O’Connor, MD, Scientific & Clinical Advisor, Multiple Sclerosis Society of Canada

Enc. The Use of Disease-Modifying Agents in Multiple Sclerosis

Treatment Optimization in Multiple Sclerosis
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Postby sbr487 » Sat Aug 07, 2010 8:15 pm

I hope one day a letter like this will form noose around the neck of guys like yves ... what double standard :evil:
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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Postby orion98665 » Sat Aug 07, 2010 10:16 pm

"Good catch Chrystal..!"
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Postby Motiak » Sun Aug 08, 2010 2:46 am

My uncle's on tysabri and they think he just got PML. I can't imagine ever taking tysabri myself.
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Postby oreo » Sun Aug 08, 2010 4:10 am

Sorry folks, this is a case of looking for a conspiracy where there is none.

When MSSC wrote that letter they were doing their job. They were advocating for patients who:

1) did not have private medical insurance,
2) had limited financial resources, and
3) whose doctors wanted to prescribe a drug approved for use by Health Canada.
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Postby Chrystal » Sun Aug 08, 2010 7:37 am

Hello Oreo,

There will be many who see one side or the other.

I don't see a conspiracy. I see wholehearted advocacy (from the MSSC & their medical advisors) for a drug treatment.. and not only a lack of advocacy, but active advocating against a non-drug treatment and the wishes of so many MS patients.

Here is more of what I saw, in bold.


Time is clearly an important factor to consider when drug treatment is involved, as per this quote from the MSSC letter. They emphasize a “window” of opportunity here, but do not recognize a “window” of opportunity where CCSVI is concerned.

“We believe that this new therapy should be available to people with MS who may benefit from it as soon as possible.” And another quote: “Leading MS neurologists generally agree that early intervention with effective therapy to control the disease poses the best chance for long term benefit. Delaying access to effective therapy could result in potentially avoidable disease progression and disability. Most MS neurologists consider there to be a “window of optimal anti-inflammatory based therapy” based on time, and once people with MS advance beyond the window, such treatments become less effective. There is little evidence that a person otherwise tolerating a first line disease-modifying therapy (i.e. interferon-beta or glatiramer acetate) who experiences a significant “sub-optimal” response will respond to a different first line therapy. The concern is that these people with MS might be advancing quickly out of their “window”, and the best treatment might very well be a course of therapy with natalizumab.”

When drug treatments are involved, the MSSC and their medical advisors do take notice and actually reference other countries that are utilizing the treatment because this strengthens their own pro-drug treatment case (as per the following quote from the MSSC letter). In the case of CCSVI, the MSSC CEO was “not aware” of the International uni0n of Phlebology Consensus Document signed by experts from 47 countries, classifying CCSVI as “ congenital and preceding MS lesions”, and the MSSC is not tracking any of the many Canadian MS patients who have already received treatment in other countries.

“In addition, it is important to note to date, all countries in Western Europe, many in Eastern Europe , Australia and the United States (through Medicare and Medicaid) have agreed that Tysabri should be reimbursed as an appropriate treatment for multiple sclerosis. Quebec has also agreed to reimburse the cost of Tysabri under certain criteria.”

Following is a touching quote from the MSSC letter (concerning Tysabri), stating that in order for physicians to “optimally treat people with MS”, the physicians need to “have in their hand all the options necessary… …and that includes the choice of therapy and access to proper imaging.” So why, when it comes to CCSVI, has the MSSC actively recommended and advised that treatment and even testing be denied?

“In a country with one of the highest rates of MS in the world and internationally recognized and experienced MS clinicians leading the way in MS research it is imperative that physicians have in their hands all the options necessary to optimally treat people with MS and that includes the choice of therapy and access to proper imaging. All provinces, including Ontario , should strive to make these options available to people with MS.”

The MSSC and their medical advisors are forgiving to a fault when arguing the definition of “failure” in relation to a drug treatment. "Sub-optimal" response, they call it. They should remember this when harping on the possibility of veins re-stenosing after balloon angioplasty...sub-optimal response.

“The definition of “failure” has been a difficult one, prompting Canadian neurologists to adopt a different definition of “sub-optimal” response to therapy (please see the attached papers published in the Canadian Journal of Neurosciences, 2004; 31: 157-168 and 2008;35: 127-129). In the CDR recommendation, failure is based on two criteria. The first is the appearance of “disabling” relapses; however, “disabling” is never defined. Second, failure is described as the appearance of new MRI activity. This is problematic given that adequate access to MRI scanning is an ongoing issue in Ontario . This approach to “failure” within the CDR recommendation defeats, to a large extent, the otherwise cautious and responsible recommendations of the CDR.”

WHOA! When it comes to drug treatments, the MSSC and their medical advisors are most willing to throw caution to the wind (as per another quote from the MSSC letter) rather than protect MS patients from dire outcomes which have occurred in a significant number of cases.

“The MS Society is also cognizant of the worries concerning the long term treatment with natalizumab. Nevertheless, until new recommendations regarding its safety are available, we do not feel that this should further delay the availability of natalizumab for all of our patients.”

~~~~~~~~~~~~~~~~

And here is just one of who knows how many letters the MSSC sent to MPPs regarding CCSVI...

http://www.facebook.com/ccsvi.ms.toronto.canada

From:Natasha Mistry [mailto:Natasha.Mistry@mssociety.ca]
Sent: June 30, 2010 4:46 PM
To: Clark, Steve
RE: MS Society's Positionon CCSVI
June 30, 2010
Mr. Steve Clark, MPP
Suite101 100 Strowger Boulevard
Brockville,Ontario
K6V 5J9

Dear Mr. Clark:

In recent months, your office may have received inquiries from constituents regarding chronic cerebrospinal venous insufficiency (CCSVI). I am writing to provide you with details of the position of the MS Society of Canada with respect to CCSVI as it relates to multiple sclerosis.

I am sure I need not tell you of the importance of robust medical evidence being available before new treatments are reimbursed by our public health system to improve the health of Canadians. In May the Ministry of Health and Long-Term Care solicited the advice of the Ontario Health Technology Advisory Committee (OHTAC), which recommended that:

The initial reports on intravascular interventions to remove blockages in cranial veins in MS patients are encouraging. There are however, several key areas for investigation. These include clarifying the relationship between CCSVI and MS, particularly as some of these vascular anomalies have been reported in healthy control subjects. There are also uncertainties about the appropriate imaging investigations to diagnose CCSVI, the vascular and anatomic properties that define CCSVI, the indications for angioplasty and/or stenting and the safety, effectiveness and durability of these procedures.

·OHTAC has undertaken a preliminaryevidence examination of the safety and effectiveness of endovascular treatments for chronic cerebrospinal venous insufficiency in patients with multiple sclerosis and is unable to make any recommendation at this time due to the paucity of available evidence.

·OHTAC regards this treatment asexperimental at this time.

·OHTAC will continue to closely monitor new evidence and will provide its recommendation when more published peer reviewed evidence is available. In the interim, OHTAC recommends that patients with MS desiring these investigations be encouraged to participate in clinical trials.

It is important to note that while some of the research that has been done-to-date on CCSVI as it relates to MS appears to be promising, research continues to evolve including the publication of results that conflict with those of the original study.

As it is the province’s role to makedecisions regarding which medical services will be insured through OHIP, the MS Society has approached the Ministry of Health and Long-Term Care to better understand the level of evidence required to publicly insure treatment of CCSVI in people with multiple sclerosis.

For over 60 years, the MS Society of Canada has provided help and hope for people with MS across Canada. One of our seminal values ensures that we protect the right of people with MS to make their own decisions about living with MS. It flows from this that we honour and respect the choice of those who seek experimental treatment before robust evidence is available to warrant public reimbursement of those treatments.

The decision to seek treatment of any kind is a personal one. The role of the MS Society is to provide the best information and evidence available to assist the people that we serve in making decisions about their lives, their health and well-being, and their personal choices to pursue or not pursue various treatment options.

The need to accelerate the collection of robust and confirmatory evidence is of highest priority for the MS Society of Canada and other MS societies around the world. To this end, the MS Society of Canada has worked closely with the National Multiple Sclerosis Society of the United States and recently announced over $2.4 million jointly to examine the potential relationship between CCSVI and MS. In addition, the MS Society is working with the Canadian Institutes for Health Research (CIHR) to explore potential new research avenues into this area.

The CIHR has invited investigators whowish to conduct clinical trials on treatment of CCSVI in individuals with MS to submit funding proposals. All of the MS Society’s research competitions now being administered are open to requests from researchers interested in CCSVI. Information about the full range of our research programs is available athttp://mssociety.ca/en/research/researchfunding.htm

If and when the evidence required for public reimbursement is established, the MS Society will ask provincial governments to insure the procedure and to make it readily available. This approach is in keeping with the MS Society’s position on access to drug therapies and other treatments, which requires that these treatments be found to be safe and efficacious as determined by relevant regulatory bodies.

I have enclosed a backgrounder on CCSVIthat you may find of interest. We will keep your office informed of new information on CCSVI as it relates to MS. Should you have any questions, please contact Kim Steele, manager, Ontario government relations and communications at 416.922.6600 416.922.6600 416.922.6600 416.922.6600 ext. 3170 or by email at kim.steele@mssociety.ca .

Warmest regards,
John Clifford Chair, Ontario Division Board of Directors
cc:Deanna Groetzinger, VP, government relations and policy
Encl: Backgrounder onCCSVI
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Postby scorpion » Sun Aug 08, 2010 7:44 am

Should this be in the tysarbi forum?? This really has nothing to do with CCSVI.
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Postby sbr487 » Sun Aug 08, 2010 8:13 am

oreo wrote:Sorry folks, this is a case of looking for a conspiracy where there is none.

When MSSC wrote that letter they were doing their job. They were advocating for patients who:

1) did not have private medical insurance,
2) had limited financial resources, and
3) whose doctors wanted to prescribe a drug approved for use by Health Canada.


I think, Oreo, the point difference between approach to a drug and the ccsvi ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Chrystal » Sun Aug 08, 2010 6:53 pm

Yes, sbr487, thanks for pointing that out. That's why I posted the letter from the MSSC on this CCSVI page, and not on the Tysabri page.
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Postby 1eye » Mon Aug 09, 2010 4:24 pm

scorpion wrote:Should this be in the tysarbi forum?? This really has nothing to do with CCSVI.


mis-spelling will get you nowhere.

Obviously this is about the denial and advocacy against Liberation, while simultaneously advocating for a dangerous drug to be paid for by the province, even with its usurious cost.

The so-called DMD drugs that are currently paid for, have been deprecated, as being so ineffective the manufacturer should be paying the province to use them.

That, if anything, should be the justification for Tysabri. But the excuse that Liberation is not a 'proven' treatment will not stand long, and some will fall with it.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Chrystal » Tue Aug 10, 2010 6:16 pm

Exactly, 1eye!

Excuse the delicate subject, but I just want to illustrate how wrong I find the MSSC's interference in our/my ability to access appropriate health care for a vascular condition. I write the following in jest, frustration, anger and despair over our predicament.

I suffered from gynecological problems for many years, even before my first MS attack and subsequent diagnosis. After I did get sick with MS - whenever these problems surfaced they actually aggravated my MS, causing a flare-up of symptoms.

A few years ago, further testing indicated I had a condition, and I was given the option of surgery to correct this problem. No one had a say in my decision for testing (ultrasound) or my operation other than my GP, the gynecologist and me.

Since the surgery, I have been free from the flare-up of symptoms that happened every time my condition acted up, and the condition itself has been relieved. I thank God the MSSC didn't hear about my g condition at the time or, judging from their reaction to the vascular condition CCSVI, they would have:

1. Immediately posted a notice on their website recommending and advising against gynecological testing and treatment of MS patients until further research and studies were done to establish whether there was a link between this delicate area and MS.

2. Had their medical advisors speaking out - no doubt calling my condition and the already-established procedure that is performed all the time for women suffering from this condition regardless of any other illness they may have, "gyno junk science”, “hoax".

2. Discounted my pain and suffering since I am the only MSer I know of with this condition (although there undoubtedly are others), saying they require larger numbers to study in order to establish that this is a real condition with real suffering and a real link to MS.

3. Said they are very excited about this new theory, but they need "robust" evidence to determine whether the g condition causes MS or vice versa…and let me suffer for years while they had their neurologists study this.

4. Would have held a Gynecology Information Session with the male MSSC CEO, a male Neurologist and a male patient on the Speaker Panel speaking in authority.

I would have still been suffering from this condition and the flare-ups it caused now. Thankfully, the g condition was recognized and treated as a stand-alone condition. Our vascular condition should be recognized and treated as such as well. Run research and studies to determine linkage to MS, etc. alongside, but do not withhold an already established procedure from patients just because they have MS when you can relieve their symptoms now and hopefully stall further progression.
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Postby Chrystal » Tue Aug 10, 2010 6:50 pm

Just read this wonderful letter posted by a fellow MSer from Saskatchewan who has already been treated...

http://www.travelpod.com/travel-blog-en ... /tpod.html

Regina, Saskatchewan, Canada
Tuesday, August 10, 2010

I sent this letter to newspapers across Canada.


Liberation Treatment Should Be a Non-Issue

Is dying better than angioplasty? Is progressively getting more disabled better than angioplasty? Is going blind better than angioplasty? Is lying in bed missing your kids growing up better than angioplasty?

We all know the choices we would make given these alternatives. Here in "democratic" Canada these choices have been taken away from people who have Multiple Sclerosis. Our federal and provincial governments have prevented doctors who want to help people from fulfilling the oath that they took when they became doctors.

Angioplasty is a well known, standard medical treatment. It is not a drug and clinical studies are not needed to prove that it is safe. The approximately 1,000 successful liberation treatments done to date around the world should be enough to encourage the Canadian health-care system to allow the treatment as an option to patients.

The arguments against the Liberation Treatment are: “it hasn't been proven to help people with MS”; “not all the clinics are using the Zamboni method”; “Stents are dangerous in veins”; “we only have anecdotal evidence of the results”; “we don’t know the long term impact”; “the veins can re-stenos”; “not everyone who has MS has CCSVI”.

If we don’t do the Liberation Treatment and track the results we will never be able to prove anything. There is a global community of doctors that are performing the procedure, sharing their experiences and learning and improving together. We are falling way behind because we are not even in the game! Thousands of dollars are leaving Canada because we refuse to listen. The MS Society is not listening to its members; the provincial and federal governments are not listening to their constituents; the health care systems are not listening to their patients. Brad Wall is the first person in power who has stepped forward to say we need to do this.

Pharmaceutical companies control the medical research that is done because they control the money. This procedure does not need pharmaceuticals so there is no money to do the procedure. Or so it would seem! Many people with MS: take drugs that cost over $20,000 a year – paid for by insurance companies and governments; are on disability – paid for by insurance companies and government; see doctors regularly – paid for by governments; have MRI’s – paid for by governments; don’t work and therefore don’t pay income tax and may be on social assistance – paid for by governments.

If we could change this scenario in just a few of the thousands of Canadians with MS we could easily pay to do the procedure, track the results and become part of the global medical community that is sharing information. We don’t need to do everything ourselves. We don’t need to prove everything ourselves. We could start with the many Canadians that have already had the treatment. Follow them, collect the data about them.

What we need to move this forward is:

- Introduce compassionate legislation so that anyone can get medical treatment for compassionate reasons

· Allow the Canadian doctors who’ve already been trained to start doing the Liberation Treatment

· Allow other interested vascular specialists and radiologists to get the training that is needed to ensure they know how to test for CCSVI and do the angioplasty

· Set up a tracking system to gather data about everyone who is tested and treated.

· Include open minded neurologists to follow their patients before and after treatment

· Connect with the global community of doctors to share information

If governments really feel that we can’t afford to do this, call it an elective procedure and charge a fee for having it done. At least the money would stay in Canada and benefit Canadians.

Most importantly, allow us to make a choice about our life. Don’t make the choice for us because you’re scared, sceptical, or think you know best.

Verna Mang

I’ve had the procedure and I’m improving for the first time in over 14 years.
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Foot on the Accelerator!!

Postby C2010 » Wed Aug 11, 2010 4:34 pm

Foot on the Accelerator

Yves Savioe of the Canadian MSS is fond of saying that when it comes to researching CCSVI; they have their foot on the accelerator.

What a reassuring metaphor.

Why .. In a few short years, they will know if there really is any connection.

A few very short years after that they will have determined whether there is any useful treatment.

A year or two after that, the government will make treatment available.

Some time after that, they will get to every one.

I am already a technical quad, by then, I figure to have lost all of my function.

No, it is not the accelerator they have their foot on.

It is the brake.

Lucky for us CCSVI treatment has a lot of momentum.

The MS Society car will go off the road soon enough.

And we won’t have to listen to this guff any longer.
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