Canada gave the world insulin, mobile blood transfusion, and the Montreal procedure, a surgical treatment for epilepsy. Back then, the barriers were the frontiers of medicine. Today they're between the specialities of medicine. We are up against myths and self-serving practices.
Fortunately, there's a solution. Venograms and venoplasty are already insured services under the Canada Health Act, so let MS patients have access to them now.
My name is Rebecca Cooney, co-founder of MS Liberation, a group of 350 MS patients. Thank you for hearing our concerns and solutions.
All Canadians with vascular problems can be tested and treated in Canada, unless they have MS. Since I've been diagnosed with CCSVI, my family doctor has recommended that I see a vascular specialist, but none will see me without a referral from my neurologist, who in turn won't do it. Why is that?
The treatment of CCSVI is held to the myth of risk-free medicine. What's the reality?
In 2007 the British Medical Journal analyzed 2,500 common medical treatments and found that only one-third had proven benefits. The Montreal procedure for epilepsy was implemented without double-blinded trials. Without clinical trials, angioplasty was accepted as the safe and economical way to treat coronary disease. If I had heart disease, I could get angioplasty without a neurology referral. Why is CCSVI held to a different standard?
There is also the myth that the treatment of CCSVI is experimental. In fact, venoplasty is used for thrombosis of the jugular vein and sigmoid sinus.
Another myth is that there are conventional drugs for people with progressive MS. There are no drugs.
Still another myth: Why fix something that is not proven to help MS? The plain answer is that better blood circulation improves health, whether there's MS or no MS, and the goal is to treat the patient, not to research MS.
I am not a medical doctor. But I do have an MBA and 15 years of experience in risk assessment. Before deciding whether to wait or act now regarding CCSVI, we need to assess three things: risks, costs and benefits.
The risk of venoplasty is minimal. It has been performed very safely for many years on thousands of people. Conversely, the medical risks of existing drugs for MS are well known.
The costs to test and treat CCSVI are minimal. It's estimated to be $1,500 per person, less than the cost of one month of drugs for a patient with relapsing-remitting MS.
The benefits of venoplasty are the most encouraging yet for MS. Venoplasty actually improves the condition of some patients, which is something that MS drugs rarely do. It stops the progression of the disease in some patients, which is something that no MS drug does. For people with progressive MS, it is the only safe option available. There are no drugs for progressive MS.
Resources must be deployed strategically. The MS Society has asked for $10 million. Since their competition does not cover researching the treatment of CCSVI and only covers the testing, I have serious concerns that I will leave unsaid.
What I will stress is that immediately the Government of Canada can, one, declare CCSVI diagnosis and treatment to be insured services under the Canada Health Act, two, require that all CCSVI data be documented in a nation-wide clinical trial, and, three, ensure that treatment of CCSVI and clinical studies are done in parallel, not in sequence.
Four years ago, multiple sclerosis ended my career. Here are some of the things the future holds in store: a wheelchair, incontinence, debilitating headaches, the inability to swallow, dementia. However, the e-mails I receive from all over the world remind me that I am not alone.
For every patient, there are scores of friends, family, and relatives deeply affected. One e-mail from a mother stands out:
The only thing worse than not having a treatment for your child's MS is knowing that there is a treatment out there, but you are denied access to it by your own government.
Ladies and gentlemen, you can change that. For that, I thank you in advance.