The Canadian Government – A silent killer
One family’s journey to CCSVI liberation treatment for MS
By: Dave Stearman
Most Canadians have not been exposed to what one can see as widespread bureaucracy of our medical system. Health care is designed, or at least should be designed to meet the needs of the population. As most of us have heard but relatively few have experienced, there is a dark side to our health care system, a side where people are discriminated against by age, class, and illness. While we are a nation that leads in fields such as medical research, funding, awareness, aid, etc. Canada’s health care system is a too often flooded by corruption, deceit, and convoluted ethics. Those who suffer from many ailments, such as Multiple Sclerosis can attest to feeling let down by a system that should be aiding in improving the life of all Canadians.
Before I begin to explain what is occurring behind closed doors, please note that the motivation for this article was not
because of a political agenda against our current healthcare paradigm. It was because someone close to me has been forced to battle a system which rejected their needs based solely on having status as a person with MS. As the day-to-day darkness became worse, it became obvious that she was going to suffer from being labelled as a person inflicted with a terminal illness. I have taken it upon myself to describe the reality of both my mother – a sufferer from Multiple Sclerosis for 8 years, and of my father, a husband, but also a caregiver. This story will merely scratch the surface of a world where the rabbit hole declines into a woven scenario of medical professionals, NGO’s, public officials, and global delegates. Hopefully one may be able to garnish the rash impacts of what this systematic discrimination has done to our family, our community, and our country as a whole. Multiple Sclerosis patients are facing a fight which is resulting in diverse oppression and floundering opportunities for the opportunity to live a longer and healthier life.
Often when I converse about CCSVI (Chronic Cerebrospinal Venous Insufficiency), within Multiple Sclerosis, people tend to react either with their undivided attention, or pass the conversation off as it holds no reference to their current situation. Conversely, many relate with someone close to them who also struggles with MS, but has never heard of CCSVI liberation. To those suffering from Multiple Sclerosis, who are being denied their right for treatment, I write this article for you. I write it on behalf of my mother: a sufferer of MS since 2003. This is to the many others who struggle to find an answer to their illness. It is out of this hurt, this passion, this desire to help in anyway I can. It is necessary to expose the truth being kept behind closed doors. This story has in no way been written to denounce the success or relevance of Canada’s health care system. Throughout I will merely elaborate on the facts that are clearly illustrated in the medical process of seeking CCSVI liberation treatment for MS (Multiple Sclerosis). It is my intention that you will be left with the realisation that there is in fact forms of discrimination occurring within our system, leaving us to question the various people we have come to place our life and trust.
Chronic Cerebrospinal Venous Insufficiency, also known as CCSVI, is a reflux of blood from the veins to the brain and spine and it has been found in tests performed on Multiple Sclerosis patients. Surgical procedure length can take less then an hour but it depends on how many narrowed veins and blockages the patient has. It is simply just an angioplasty: the opening up of narrowed or blocked veins allowing blood to drain from the brain and spine. The results from this procedure vary based on the individual, as the high majority of patients who have received the treatment have shown positive results.. The word “positive” in this case cannot be stressed enough, as these immense improvements, seem more prevalent the more a patient is suffering. These “improvements” but rather miracles include patients walking again - who have been disabled for 5 years in a wheel chair; medium changes like feeling objects, heat, eyesight - alleviated from the numbness in their senses, are just some of the examples of what CCSVI helps. Typically, MS has always thought to have been directly related to the neurological and autoimmune part of our body (nerves connected to our brain); however a Doctor by the name of Pablo Zamboni has provided evidence to suggest otherwise. Because the procedure of CCSVI is basic and pre-existing (for other neurological disorders), the controversy surrounding it has resulted in an unprecedented overturn in what we know as common treatment for Multiple Sclerosis. Typically an MS patient would find themselves suffering the remaining duration of their life with the loss of sensory perception, fatigue, various illnesses, resulting in an excruciatingly painful life. A small percentage of patients even seek medical assisted suicide by travelling to Switzerland – a sad reality amongst MS patients. The research of how to prevent this debilitating lifestyle is paramount to those who suffer from the disease, and also to the family and friends of the individual.
Currently, the Canadian Healthcare system refuses the right to individuals who choose to seek this liberation treatment. They claim that there is just not enough evidence to support that this treatment really has an everlasting effect. Despite medical tribunals, patient testimony, and the physical proof from the thousands of scans, tests, blood charts, policymakers still see no sign that this treatment should be covered under our current paradigm. Government funded study’s have now begun, and the estimated time of conclusion now sits at 8 years plus. The deplorable outcome is that our family and friends must suffer without the option to obtain this very simple procedure – on their home soil. Without reluctance, MS’ers from all around Canada have now packed their bags, and have been travelling around the world seeking CCSVI treatment.
The multibillion dollar question then becomes; is the life of an MS patient really worth saving? Morality should dictate that an individual, no matter their health, race, or gender, should be granted the same fundamental freedom as everyone else. Regrettably, the answer to this question is left not into the hands of individuals such as ourselves, but rather the heads of our government officials, corporate CEO’s, and members of the public who volunteer for NGO’s. People, who desperately need to utilize our system in a time of dire need, are too often given the cold shoulder. Currently Canada stands as the nation with the highest population of MS suffers with over 55 to 70 thousand alone. I implore the philosophy which tells me that denying CCSVI treatment to MS patients is yet again another example of how capitalism has corrupted the reality of thousands of people in need, and their families. The following is an account of my mother and fathers journey to liberation, and has been reiterated by my father (a caregiver for my mother – a patient of MS).
“At the very early stages of diagnosis we immediately noticed that there were no options for support. Sure there were groups we could contact, however nothing concrete to point us in a positive direction. Plan of care for us was ‘If today is a good day enjoy it. If tomorrow is a good day, enjoy that too.’” – John Piercey. Immediately upon diagnoses, my mother was being discriminated against by insurance companies, as no insurance company is willing to ensure someone with a terminal illness, unless they pay a hefty premium. While common knowledge tells us this is generally the case with many other types of deadly illness – my family reluctantly accepted it as our new reality. After six years of relatively no activity with my mother’s MS, the doctors had told her that she simply wasn’t sick enough for her to partake in any studies. In short, her doctors passed her off as just another number of the disease and offered little to no assistance in helping her fight this disease. After six years of relapse and remitting MS, her symptoms started appearing again, with signs of sensory loss, and fatigue. At this time, the neurologist then offered the possibility of drugs, but gave the ultimatum that these drugs will make other symptoms worse, and could even cause death. Being a mother of 3 children, all of whom were still young and in school; her decision at this time was to not pursue the medication, as the symptoms were not worth the financial burden (50,000 dollars), or medical complications.
On a cold winters night, in the depth of a relapse of her MS, my mother, and our family sat down to watch a W5 special on CTV about a miracle treatment called CCSVI for MS patients or “the liberation treatment”. It was like seeing fireworks for your first time as a child. Immediately the idea that something so simple could impact our life at such a low cost (comparatively) with such drastic effects was like a miracle. The next day our family began the research, flocking to the internet struggling to find out more information. Within a matter of weeks, there were studies being performed around the world, with patients everywhere signing up to be the next one liberated. However, it wasn’t until the government, and neurologist started getting wind of this, that the movement was instantaneously diminished. From their point of view, it appeared as though things were spinning out of control way too fast for them to manage. So, within a day – a request was sent to any surgeon who was performing this procedure, to immediately stop performing angioplasty on anyone suffering from MS. If found that any doctor was performing these tests and procedures for this purpose, their licence would be revoked, and a strict fine would be placed on them and their practice. From our point of view, it was if the government was saying “you may not take your own well being into your own hands. You do not have the right, or the education to make such decisions, because you are simply not in a position to do so.” Despite these orders, our movement still persisted. At this point, my mother was in the stages of collecting every piece of information she could find about the procedure, and identifying for herself whether or not this procedure would benefit her. Upon a routine check up, my father and mother went to see her neurologist to discuss the possibility of having the CCSVI procedure. “The neurologist laughed at us and told us not to bother as it was a procedure with no proof. Returning to our family physician we discovered that the neurologist had forwarded our conversation to our family doctor (a breach of confidentiality) and he simply repeated the advice that the neurologist had forwarded to him. We were left to research and advocate on our own as The MS Society had no advice for us at all” – John Piercey. After extensive research performed on my mother’s behalf, she then decided she was going to ask for a referral to have a Doppler ultra sound (test to see if she had narrowed or blocked veins). Her family doctor denied this request. The next appointment with the family doctor, my father attended. He then sat and watched as the doctor lecture my mother about how CCSVI was a quack procedure in regards to MS. She was told by the doctor “I am not concerned about the test, but what you decide to do with the results”. Despite having yet again more resistance from someone who was not medically qualified to make this decision about my mother’s life; she had the test done and was found with altered blood flow. She met the criteria for CCSVI according to Dr Zamboni’s protocol. The Doppler ultrasound does not tell you where the blockages are but does monitor the blood flow. Within weeks the procedure was booked, and my parents were heading down to Clearwater, Florida to a clinic there called Advanced Imaging and Interventional Institute or “AI3”.
Prior to leaving, much had transpired throughout the process of flying out. First, the Doppler which was referred to my mother and covered under OHIP was no longer being covered. The test now required a patient to pay 250.00 dollars, as there was no reason for this change provided by the ministry. On top of this, there were stories starting to circulate around MS patients who received the treatment outside of Canada. Some were told that the government ordered doctors to stop follow up treatment for those individuals who sought treatment outside of Canada. This worry was then cured by her our own research as this was not necessarily the case, however after the treatment my parents had found out that if stents were needed; there would be no chance for after care treatment related to the procedure. As with many families, not just MS families, my parents were broke, and needed to rely on the assistance of our extended family, friends, community, and community organizations for support. After donations were raised, and as the days approached; the time had come.
In the first week of November, 2010 my mother was liberated. Once the veins and blockages were opened, my mother could immediately feel warmth pass around her extremities, as sensation pierced throughout her. A supreme angst that this was in fact a liberation in the likes of which she had never felt before. As the procedure finished, and healing time passed, the symptoms which cascaded my mother disappeared. No longer was brushing her hair, taking a shower, walking down a flight of stairs a foreseen doom to her every day activities. Now, more than ever it rests as a vice my parents don’t take for granted.
Post treatment, and the fight still continues. Now more than ever are people flocking to seek information of this treatment, though now more than ever do the powers that be struggle to hush the voices that are screaming both inside and outside. It is now fact that a small number of angry neurologists have pressured the College of Physicians in the following ways.
- No GP is to refer an MS patient to a vascular surgeon
- No vascular surgeon is to treat an MS Patient
- No MRV’s are to be done on MS patients
- No interventional radiologist is to see any MS patient
- No treatment regarding CCSVI is to be pursued
In short if you have a medical license and you want to keep it you will not assist an MS patient in finding treatment for CCSVI. Leaving us to wonder – why? If there is no harm in the procedure, if the procedure is performed everyday on thousands of patients worldwide –who don’t just suffer with MS, but with cardiovascular issues, why is it a problem? The answer my friends can be found in the heart of the industry, in the shadows of neglect. Tell me, why is it that our health minister is in charge, but has absolutely no medical background? She is not a doctor, nor has she ever been one. Tell me why the elected officials who made the decision NOT to allow this procedure were in fact bias subjects who worked as neurologist, when the entire procedure has nothing to do with neurology at all? Is it because the pharmaceutical companies pay our doctors to prescribe their medication? Or is it just common knowledge that 4.1 trillion US dollars is spent globally on health services every year, with 750 billion spent in the pharmaceutical market. Perhaps it’s the supreme realization that 10 to 25% of public procurement spending (including on pharmaceuticals) is lost to corrupt practices. Justifiably, we as the people need to unite and educate ourselves on this injustice. I digress and shall leave you with a quote in which my father has so graciously stated.
“As MS patients and MS caregivers alike, I believe that one of our best weapons may be full public disclosure in regards to the MS experience. This condition causes people to withdraw and suffer in silence. Sharing the total story may in its self be very "liberating", allowing glimpses into what makes for a typical day in the home of an MS patient. However this forces us to face the uncomfortable events in our life. There is no shame in this and pride may need to be set aside, if only for a moment. You see if I stand naked with the defeated dragon lying motionless at my feet, there is no shame in my nakedness; I have fought the good fight. If my embarrassment is my only scar and all the armour that I hide behind has been burned away, let me leave this a better place for those that follow. Leave the dragon without power over us and let the profit driven evil die within”
Sources and sites include my parents: John and Theresa Piercey, MS Caregivers, CCSVI, and the people who suffer every day but are too weak to stand up and fight because of their illness.
This love is for you.