I wrote to them too. It's wordy, but gosh-darn it, Parliament loves words...
My name is not really Johnson. I am a Canadian male, 48 years old, and have suffering what has been heretofore known as Multiple Sclerosis (MS) since 1993. I can now see that I had some symptoms indicative of "MS" as long ago as 1972 - when I was 10 years old. I have some grave concerns regarding the positions of the various governing bodies in Canada regarding the diagnosis and treatment of Chronic Cerebro-Spinal Venous Insufficiency (CCSVI). I appreciate any indulgence in considering my submission to this Subcommittee.
I became aware of the CCSVI theory in November of 2009, as so many else did. I understand that there is a great deal of interest (on the part of "MS" patients, Vascular Surgeons, Interventional Radiologists...), and a great deal of controversy (on the part of neurologists, Colleges of Physicians and Surgeons, the pharmaceutical industry (who direct research with funding), and the MS Societies - who do likewise. The theory made sense to this layman immediately. I am not certain that it is the end of "MS", but it did prompt me to have colour Doppler ultrasound, and an MRV, which I paid for at a private clinic - as I was unable to gain a requisition or referral in the public system. I paid a total of $2350 (keep in mind that I am unable to work, and these funds were taken from my wife's meagre income). I have no strident objection to that, as it was - at that time - not clearly indicated that such testing was warranted in people with "MS". Of course, the BNAC study (US) has shown preliminary indications of a 62% correlation. Dr. Marian Simka, et al (Poland) have documented an approximate 95% correlation, Dr. Zamboni, et al (Italy) - 100% correlation, the Kuwait initiative is very strongly correlative as well (>80%). It is to be noted further, that Kuwait has undertaken to screen and treat all Kuwaiti citizens with "MS", for CCSVI. Meanwhile Canada mutters and mumbles about clinical trials and patient safety. I wonder how many Canadians with "MS" will die of the condition, become permanently disabled, or commit suicide while waiting. That is some "patient safety".
There ought to be little doubt as to whether treatment for inhibited cerebral drainage is warranted, endorsed, and publicly funded - especially for Canadian citizens who have a greatly diminished quality of life, and to whom no other treatment has been advised, or offered. I have not worked for over 10 years, and previous to that, I was dismissed from a number of jobs because I could no longer perform my duties satisfactorily. Prior to that, I was an entrepreneur with two fledgling businesses that died along with who I had been before "MS". I was 31 years old. Occlusion of the hepatic vein can cause Budd-Chiari disease, which is ultimately fatal if a liver transplant is not possible. The same outcome is expected in the case of a renal venous occlusion. These conditions are routinely, and urgently treated. Occlusion of the femoral vein in the leg can lead to tissue death, and ultimately, amputation of the leg. An occluded carotid artery, coronary artery, etc., is readily treated by angioplasty, as the outcome otherwise, is also death. Neuro-radiologists go so far as to perform procedures within the brain itself in the cases of some stroke patients, as otherwise, extreme disability and/or death can be expected if no action is taken. Somehow, resolving compromised venous drainage of the brain has to go through rigorous double-blinded clinical trials before it can be accepted that it can, and does cause extensive neurological damage, physical disability, and ultimately, death
In my own screening for CCSVI, it was determined that;
- My Internal Jugular Veins (IJVs) are severely constricted bilaterally (>90%), have faulty valves, turbulence, and reflux.
- My IJVs do not collapse while sitting or standing, but remain engorged with putrefying blood, which re-fluxes into my brain - poisoning it, -causing brain damage.and disability.
- There is an "extraordinary number" of collateral veins from my thyroid.
My biggest problems are cognitive dysfunction, balance problems, visual problems, and extreme - and accelerating - weight loss. My MRV scan shows that thyroid vein collaterals are trying to drain into blocked jugular veins. I was referred to an Interventional Radiologist in BC for selective venography, but after performing two very successful balloon procedures on the jugular veins of two people with CCSVI, he was halted, and my referral deferred. In this case, I was denied treatment because I belong to a group of society that has a disability. This not only contravenes the Charter of Rights and Freedoms, and the Canada Health Act, it is in contravention of common morality, and human decency.
I believe that I will soon die from weight-loss if my thyroid cannot drain stale blood effectively. I can feel my brain dying - in my diminished ability to mentate, and in my disability to function bodily. I need help, but I am repeatedly referred to the neurology department at UBC for my venous issues. There is a break down in the system, and I am being refused treatment because I have a dis-ease of unknown aetiology (though it has been studied by neurologists for at least 6 decades). I do not expect to be sent to a neurologist for venous issues any more than I expect to be sent to an Otologist for a skin rash, but this is what is happening to me, and ~75,000 other Canadians.
I have now been compelled to seek treatment abroad, as the treatment is being denied of me here in the Canada - where my taxes pay for a public medical system - staffed by tax payer funded clinicians. How will I acquire follow-up care when I return? Will I be refused treatment again? Will I have to return over-seas? Will I be allowed to die because I have "MS", and jugular vein occlusions are not proved to be related to "MS" by double-blinded clinical trials? It will cost me $10,000 for treatment in Poland. It will cost a further $10,000 to fly myself, my wife, and our three years old son to Poland and back. My wife will additionally lose approximately $2,500 by taking time off to accompany me. That is $22,500 - without considering any of the incidental costs of travel, and I have no income. I am obliged to pay the British Columbia Medical Services Plan $1,368 per annum, but I am refused treatment (which would be billed to BCMSP at the sum of about $1,500). In the 17 years that I have had "MS", I have paid about $20,000 in MSP premia, but have never been sick - other than with "MS". There is a breach of the "social contract" occurring, but I have no recourse. I am deeply offended to "have to" pay taxes. I have no pension or retirement fund as I approach retirement age. I do not own a home. Instead, I will be in debt for ~$25,000.
The Government of Canada is not the Conservatives' government, it is not Steve Harper's government, it is MY government, and that of my wife, my child, my extended family, and my friends. We demand immediate attention and funding to the matter of CCSVI. We demand compassionate care and treatment. I will demand re-imbursement, in the Courts, for my costs to be treated in Poland. My family, and I, refuse to accept that an inexpensive, minimally "invasive" procedure is denied to me (and ~ 75,000 other Canadians) because neurologists cannot understand venous pathologies, and how they might affect the brain. I refuse to accept that I have to die a nasty death because the "powers that be" cannot understand that arguably the most important organ in my body needs proper circulation of blood. Even a Grade 10 biology student can figure that out. My wife, my sister, and anyone can have breast implants. Minister of Finance Flaherty can have botulism toxin injected into his face for vanity's sake (and I wonder if OHIP paid for that). People can engorge themselves on garbage food, become obese, and receive treatment. People can harm themselves through lifestyle choices and receive treatment. If I am an alcoholic, or injection drug user, I can receive treatment, and even receive free needles to inject said drugs into my veins, but a routine procedure for an affliction that I was born with is denied me.
I beseech all governing bodies in Canada to act on this now - not after I have become bed-ridden, or have killed myself in despair. I do not want my son to suffer the same fate. We are out of time.
Thank you for accepting, and entertaining this: my written submission to this Parliamentary Subcommittee on Neurological Health.
Johnson (not really)
Indian Arm, BC