how to get OHIP to fund CCSVI treatment

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

how to get OHIP to fund CCSVI treatment

Postby Cece » Sat Feb 11, 2012 10:21 am

http://www.ottawacitizen.com/health/Ott ... story.html
Langley acknowledged that not all treatments funded by OHIP go through double-blind testing first. But that only happens if the medical community proposes funding a procedure, he said. To this point, "there has been no proposal made in Ontario to OHIP to publicly fund CCS-VI for MS."

We need the medical community, which would be the IRs, to make a proposal to OHIP that CCSVI treatment for CCSVI be funded.

Dr. Hugh Langley is the medical adviser to the general manager of Ontario's OHIP.

I propose that the Canadian members of SIR put together such a proposal. The question would be why CCSVI treatment should be funded prior to going through double-blind testing. Compassionate exemption and precedence of treatment of central venous stenosis come to mind.

Here is the medical community that OHIP is currently listening to:
With a handful of exceptions, Ontario's medical community remains hostile to the treatment. In an email, one Ottawa neurologist labelled the response to it by MS patients "mass hysteria" and likened its proponents to a cult.

IRs can speak to the fact that blood flow is of importance and that outflow obstructions obstruct outflow, and has an established fix in angioplasty. When it comes to matters of blood flow, their opinion weighs more than that of the neurologists. This is not about brain lesions but vein lesions.
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Re: how to get OHIP to fund CCSVI treatment

Postby mangoflo » Sun Feb 12, 2012 5:28 pm

I was a witness for Judith Butcher at this hearing. It was mentioned that CCSVI is a treatment and not a drug. Double blind studies were developed for drugs not treatments. It was mentioned, and a number of examples were given, that other treatments did not have to go through double blinded studies. I can't think of any good reason why this treatment should not be funded by OHIP.
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Re: how to get OHIP to fund CCSVI treatment

Postby jackiejay » Mon Feb 13, 2012 5:59 am

this could be huge....if it goes through...they might want to look at reducing costs...how about doing procedure in Ontario for around $1,500.00...I think that is what I read it costs here....most people are paying $7,000.00-$10,000.00 to go to the States or abroad.....money could be motivating incentive for government to approve...?...
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Re: how to get OHIP to fund CCSVI treatment

Postby Hooch » Mon Feb 13, 2012 7:51 am

I live in Ottawa and went through the same process after my angioplasty in Sep. 2010. However mine never got as far as I felt I could not win and could not afford to hire a lawyer to help me.

I have written a letter to the editor in support of Judy Butcher - I just hope they publish it.
If anyone else has tried this approach please let someone know as it is so hard to do battle with OHIP.
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Re: how to get OHIP to fund CCSVI treatment

Postby Cece » Mon Feb 13, 2012 9:04 am

I think Dr. Langley is basically saying to patients that they're not going to win. To even have a chance at convincing OHIP, we need a proposal from the medical community.

What is the opinion of the Canadian IRs, specifically in Ontario? Is there a consensus among those IRs that outflow obstructions benefit from treatment, and that the treatment of choice is angioplasty?
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Re: how to get OHIP to fund CCSVI treatment

Postby jackiejay » Mon Feb 13, 2012 9:13 am

have never heard of an opinion from any Canadian IR's but there could well be some....?....
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Re: how to get OHIP to fund CCSVI treatment

Postby DougL » Mon Feb 13, 2012 9:36 am

Cece wrote:

What is the opinion of the Canadian IRs, specifically in Ontario? Is there a consensus among those IRs that outflow obstructions benefit from treatment, and that the treatment of choice is angioplasty?



i doubt i will get an asnwer but i emailed them and asked the question. a search of the website shows no results for CCSVI. perhaps we need Dr. S to contact them.


Canadian Interventional Radiology Association
1370, Notre-Dame W.
Montreal, Qc
H3C 1K8

(E) info@ciraweb.org

(T) 514-282-2744
(F) 514-282-4292



edit - i stand corrected. there is a paper on it.

quote - CIRA Endorses SIR Position Statement on Interventional Endovascular Management of Chronic Cerebrospinal Insufficiency in Patients with MS. The Society of Interventional Radiology (SIR) has published a Position Statement on Interventional Endovascular Management of Chronic Cerebrospinal Insufficiency in Patients with Multiple Sclerosis. The Canadian Interventional Radiology Association (CIRA) endorses this Position Statement, that states among other elements that "SIR (and CIRA) strongly supports the urgent performance of high-quality clinical research to determine the safety and efficacy of interventional MS therapies, and is actively working to promote and expedite the completion of the needed studies."
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Re: how to get OHIP to fund CCSVI treatment

Postby Cece » Mon Feb 13, 2012 10:05 am

That's right, the SIR statement!
http://www.sirweb.org/news/newsPDF/SIR_ ... t_JVIR.pdf
Unfortunately the SIR statement is saying that it is inconclusive whether CCSVI is a factor in the development or progression of MS and whether angioplasty is an effective treatment. The SIR statement is from 2010, so it could be getting dated.
I think it is important to discuss CCSVI in the context of CCSVI, and not MS, if it can be done.

I have been trying to find out how a proposal can be made to OHIP, by medical professionals and not by patients. What does a proposal look like, how many authors would it normally have? Dr. Langley has acknowledged that double-blind testing is not required. But a proposal from the medical community is required. I wonder if there are IRs from Ontario who will be attending ISNVD? They might be sympathetic to this.
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Re: how to get OHIP to fund CCSVI treatment

Postby 1eye » Mon Feb 13, 2012 3:22 pm

I could be going in exactly the wrong direction, but it seems to me that a lot of the difficulty is that anybody connects all CCSVI symptoms with MS. There could be some others! My grandfathers and one grandmother died of heart disease, on my mother's side, both at a young age (50 and 66). The other grandmother debilitated by stroke for her last decade. Diseases of the circulation (my mother with vasculitis, father with strokes) affect nearly every member of my family.

With me, and the brother who had hydrocephalus, it has more been head circulation, but I have already had one heart attack. I think a cogent argument can be made for this, not only as a treatment to alleviate symptoms for which MS could be blamed, but to improve pathological circulatory problems which can be fatal in other ways. They probably have a genetic component which is much easier to trace than MS alone.

Two family members of mine have Chronic Lymphatic Leukemia, another disease of the blood. One doctor of mine said they may be two sides of the same coin (their cancers and my MS). I think much suffering, and probably some deaths, can be avoided and delayed by this treatment. Moreover, people like the surgeon on The Nature of Things, can go back to their jobs! The great body of anecdotal evidence, not on the Internet, but in the hands of many doctors today, along with potential re-employment of sidelined workers, should be enough to justify the practice, and the funding, by both private and public insurers

However, the treatment is road-blocked because of its effect on improving the lives of MS patients. I believe with all my heart that I have the nervous problems, immune symptoms, pain, and psychological difficulty which are common in MS patients. I also know to be true, the things I have said about the odds against the healthy survival of my circulatory system.

It is not enough for a few well-connected doctors to reply that if I just ate better, and got more regular exercise, that should be enough, or that collateral veins should be sufficient to provide for my brain's needs, and drugs are all we have for the rest. I think, besides the duty to avoid harm, doctors have a duty to treat suffering, when they know they can do so with very low risk. The risks of this procedure are known, and manage-ably low. I would say the grounds for doing it under our public health care system, strained as it is, are much more than humanitarian gestures for people with faint hope.

This is 2012, not 1970, and people are more than ready: doctors, patients, and loved ones alike. The barriers here are much less formidable than the disease itself, and those who can help are already doing as much as they are allowed to by legal, political, and yes, financial interests. People need to stop saying no, and get to yes. Everyone can still win.

Modern medicine is a juggernaut, heavily invested in the drug industry and the status quo. I don't want to be a hostage of somebody else's inertia anymore. I have given my share to the drug industry, and to science. I want something in return.

The procedure has benefits, so the task now should be to work towards maximizing them, and minimizing risks. Dr. Sclafani has shared some valuable experiences. He has shown that, in a complex area where each patient is unique, with much less radiation, a very thorough investigation can still be done, using IVUS. More work of this kind needs to be done as soon as possible. We cannot do it by sitting on our hands.

It is hard to decide whether I should even be on this forum, when many of my symptoms may turn out to have been what is demonstrably a circulatory problem. (Maybe there should be a "ThisIsNotJustMS"?) For that and some more personal reasons, you may not see much more here from me. I think you are all dedicated, smart and brave, and I do wish you all the best. Unless I come back, in which case, you can always stop listening to me :-)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: how to get OHIP to fund CCSVI treatment

Postby mangoflo » Tue Feb 14, 2012 4:29 pm

Just heard that there will be a letter to the editor published in the Citizen tomorrow or Thursday about the MS/CCSVI Debate .
This is in response to the Judy Butcher article in the Saturday paper.


If Judith Butcher appeal is denied she may have other routes to take. I was a witness at this appeal. What would have helped is having a medical doctor under sworn testimony stating that this treatment is acceptable practice in Ontario. We need to get behind anyone going through these appeals to make sure they have the necessary support. Once one appeal is accepted it will be a precedent for others. If Ontario starts doing the procedure others will follow. We need to put pressure on the powers that be in every way possible.
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Re: how to get OHIP to fund CCSVI treatment

Postby Cece » Tue Feb 14, 2012 5:29 pm

Did she try to find a doctor to testify, and no one was willing?
It can be so frustrating. Yes, if one appeal got through, it would be an excellent precedent. I am sure OHIP is aware of that as well.
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Re: how to get OHIP to fund CCSVI treatment

Postby jackiejay » Tue Feb 14, 2012 5:40 pm

what kind of doctor would she need to testify that this is an acceptable procedure?....someone like Dr. McDonald or do you mean an IR?
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Re: how to get OHIP to fund CCSVI treatment

Postby mangoflo » Tue Feb 14, 2012 9:27 pm

It is difficult to say who the appeal board would consider an expert. Likely only a medical doctor.
Dr. Hugh Langley is not an expert in MS nor is he an IR, he simply read the research in the area and selected what he wanted to make his points. Whomever Judith would have presented as an expert would have been challenged. Had there been a lawyer for Judith he/she could have challenged Dr. Langley's expertise. I learned a lot and would have a better idea of what to do the next time. It is not uncommon for people with MS to have limited money, resources and energy. Who can afford a lawyer and/or to pay the expenses for a doctor? What should be done and what is possible are two different things. If this appeal is not successful, which is likely, there may be another action she can take. I have told Judith that I will do all I can to help with the next step.
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Re: how to get OHIP to fund CCSVI treatment

Postby mangoflo » Wed Feb 15, 2012 7:48 am

Penny Setterfield letter to the editor in today's Ottawa Citizen:
Re: Ottawa-area MS patient battles to have OHIP cover 'liberation therapy,' Feb. 11.
I am writing in connection to the hearings underway in Ottawa of Judy Butcher versus OHIP.
I too have had this therapy (by Dr. Siskin in Albany, New York in September 2010). I also made written inquiries to OHIP and also contacted the Ombudsman of Ontario to have my procedure expenses paid for. I decided not to pursue the matter when it became clear that I would need a lawyer to defend me.
I was told that the therapy was experimental for multiple sclerosis patients. I believe that the problem here is that chronic cerebral spinal venous insufficiency is not being considered as a separate disease syndrome. If it can be linked to MS, it can fall under neurology.
More and more studies are showing that slowed blood flow is extremely detrimental to brain health even being likened to having a slow stroke. We all need oxygen and nutrients to feed our brains.
Penny Setterfield, Nepean
© Copyright (c) The Ottawa Citizen
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Re: how to get OHIP to fund CCSVI treatment

Postby Hooch » Wed Feb 15, 2012 9:26 am

I am Penny Setterfield - out in the open at last!

My reason for writing this letter is not only to support Judy Butcher but to sow a seed in the minds of the general public as to how CCSVI has to be taken out of the neurology context.
It is written in a fairly easy to understand format but I am a little upset that the part about the stenosis of veins and malformation of neck vein valves was not put in - apparently a late letter from a cabinet minister took up lots of space!
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