Madam Chair, I rise tonight to advocate on behalf of all Canadians living with multiple sclerosis, who not only have the courage to battle their disease every day but also have the guts and the tenacity to take on a new fight, the fight for diagnosis and treatment of chronic cerebrospinal venous insufficiency, CCSVI.
I have personally called, emailed, or met 1,000 MS patients and their families across this country. I have been touched by each and every one, and I am proud to know these extraordinary people.
I understand that this next four hours may determine whether some continue to walk, work, maintain their dignity or remain independent. I hope that everyone who rises tonight truly understands the science, the stakes, the desperation and fear of those living with MS, and the family and friends who watch helplessly.
I am a former scientist. I called for our subcommittee on neurological disease because I knew there were potential MS treatments overseas that were unavailable to Canadians. I have undertaken a comprehensive literature review regarding CCSVI, talked to leading researchers around the world, and I have heard the experts lecture: Dr. Zamboni, Dr. Simka and Dr. Haacke.
I understand that numerous research questions remain. Having acknowledged this, time is brain. Any delay in treatment possibly means more damage. The earlier MS is caught and treatment begun, the better the prognosis. For some patients a delay of a matter of months may mean the difference between working and not working, walking and not walking, or living on their own or in care.
The clock is ticking, and MS patients simply do not have the time to wait. It is time that government officials and bureaucrats take MS out of the equation. We need to explore whether individuals living with MS actually have a vascular problem, and if so treat them. If someone is suspected to have a blocked artery in the heart, he or she is imaged, as is an individual with a blocked hepatic or iliac vein.
Why are MS patients being discriminated against? Why is there such resistance to exploring whether an MS patient might have a blocked jugular vein? Is it the ordering of an MRV? It cannot be, as neurologists order MRIs to image the brain and spinal cord for their patients every day.
Is it the potential waste of human and monetary resources if someone does not have an abnormality? The cost of not picking up a potential abnormality is clearly greater, with potential damage to the brain, loss of function, loss of work and more dependence on the health care system. Whatever the reason, it is patients and their families who potentially suffer when imaging is refused.
What then are the possible impacts of waiting? No one can actually answer this. However, whether CCSVI develops in utero or early in childhood, we know that with age the veins deteriorate. Therefore, for those who have a vascular anomaly, the earlier it is caught the better.
Why then would a well-meaning doctor and a compassionate health care system wait? Is it not the first rule of medicine to do no harm?
No one can yet say whether liberation halts or stops debilitating MS, but it is becoming increasingly evident that it can alleviate some symptoms. MS patients who have had the liberation procedure quickly experience an improvement in brain fuzziness and circulation. Over time they have a marked improvement in the quality of life, sometimes moving from assisted to independent living, and from scooter to walking.
Some will argue there is a lack of evidence to support diagnosis and treatment of CCSVI. However, I would strongly argue there is precedence for moving forward. Doppler, ultrasound, MRI and angioplasty are standard procedures that are used safely every day in hospitals. These procedures are used on the neck, just not if a person has MS.
The question then becomes is there enough evidence to start imaging patients? How long will it take to accumulate good evidence? When will enough be enough? Is it in three months, six months, a year? What does this mean to a patient living with primary or secondary progressive MS?
There is precedence now. Often in medicine, when a treatment shows promise, it is fast-tracked. The most recent example, just last week, is a new device that can suck out stroke-causing blood clots. Twenty-seven Calgary patients have already been rescued from strokes by the device.
The liberation procedure shows promise. We know that poor venous flow can cause inflammation and damage to vessel walls. Poor venous flow can lead to major neurological problems. More than 1,000 people have now been imaged for CCSVI worldwide. It is clear that the majority of MS patients have vascular abnormalities. The angioplasty procedure shows that 80% to 97% of MS patients have vascular abnormalities and, in many cases, more than one major vessel is involved. Surely, 1,000 people is enough to allow for early adoption. After all, many medical procedures used daily in hospitals have never been double-blind tested.
Some patients diagnosed with MS present anomalous obstructions of the veins transporting blood from the brain. Some of these anomalies are serious enough for a doctor to conclude that there is a venous insufficiency depriving the patient of an adequate blood flow from the brain. Some doctors or hospitals decline to treat those anomalies by simply angioplasty on the grounds that it might be seen as a treatment of the MS rather than of the vascular problem and therefore decline even to screen for diagnosis.
It is indefensible that a number of patients are left to an undeserved and harmful limbo of non-diagnosis and, even in the case of diagnosis, non-treatment of serious venous insufficiency. It is in the interest of all Canadians, of MS sufferers in particular and also of the integrity of the Canadian health care system that an end be put to this harmful uncertainty.
I beg the government that no Canadian be deprived of the imaging necessary for diagnosis of venous insufficiency or deprived of the angioplasty indicated by a diagnosis of venous insufficiency in the drainage of the brain, by reason only that this Canadian has also been diagnosed with MS.
I beg that the Minister of Health should convene her provincial and territorial counterparts to a meeting for the purpose of ensuring that no impediment will be placed in the way of diagnosis of venous insufficiency or of treatment by angioplasty on the grounds only that that patient has been diagnosed with MS.
I beg that CIHR funds be made available to assist in the creation of a registry by which it would be possible to collate data regarding the progress of MS patients who undergo venous angioplasty.
I beg that the funds for the MS Society's research proposal be released to allow for that research, which must not be an impediment to patients obtaining diagnosis or the angioplasty and should proceed in parallel to any such treatment.
I would like to use cancer as an example. While only 1% of patients may be enrolled in a clinical study, the remaining 99% are not denied treatment. Why is MS being treated differently by our celebrated medical system?
Finally, I beseech and I implore the government to do the morally right thing and act: image MS patients for venous malformations and treat them if required. Do not make very sick people beg for health care that they have paid into all their lives.
There is no excuse not to image. Imaging is safe. There is no excuse not to treat. Angioplasty is an established practice. Failure to diagnose and treat is discriminatory.
My beloved cuz and patients across the country are waiting, getting sicker and, in some cases, dying. The government must fight for families.
