Saturday, July 31, 2010

Mary's Letter for us with M.s. and people who care

Posted by Mary Berukoff on July 30, 2010 at 1:53pm
The Saddest, Maddest Letter you will ever read!!( in reply to Canada’s Health Minister)

Dear Honourable Leona Aglukkag:

My name is Mary Berukoff:
   I am not a doctor or politician. So why am I commenting on your recent letter in reference to new evidence relating CCSVI (Chronic Cerebrospinal Venous Insufficiency) and Multiple Sclerosis?
   First, I have twin brothers, 49 years old, with families, who should be in the prime of their working lives but who have been diagnosed both with MS and CCSVI.
  Second, I am a teacher with a lifelong career in how to process information using critical thinking skills to move from generalities to specifics in non-judgmental ways.
  Critical thinking is logical, open-minded reasoning which moves past one’s own subjective views to seek out all possible answers even if it is different than what was originally thought.
  So your reply on July 15 makes me very SAD because I wonder if you even read the previously sent material (May 26) because not a single reference to any statement was made. How can any person read 35 pages of material from doctors and politicians and not make some kind of observation? It makes me very MAD because your standardized answer, read before from other politicians, shows a one-sided, non-critical miscomprehension of how the real issue is affecting Canadians. But there is also HOPE with compromise and equality, once the semantics are clarified.
  This letter is also addressed to ALL Canadians who may be aware of buzz worthy headlines but not the underlying facts. This information will undoubtedly make them very sad and very mad, too, if they care for basic human rights.
   There is a profound discrimination and conspiracy raging in our country and, too many times, the details are omitted. Political agendas are being mixed with health issues best left to qualified doctors to deal with new medical evidence and advancement. Right now, there are some Canadians with diagnosed blockages in their veins who are denied treatment while others can receive it. As MS patients, we demand equal health care, to stop this medical negligence...and so will the rest of Canadians once they better understand a few details why this terrible injustice is happening.
  Let me reply to your letter with deductive reasoning to show how important it is to explain what you say. First, your words will be stated (italicized) followed by a few specific details and a conclusion. If, in your opinion, your government’s role in any of these conclusions is inaccurate, please make the necessary corrections. Unbiased dialogue has never been more essential.
YOUR STATEMENT:the government ..2008 -2009 invested 5.3 million for MS
…through the Canadian Institute of Health Research (CIHR). Since 2000 CIHR has invested 45 million MS research.
1. Who is the CIHR…council includes neurologist, health management consultant, 2 professors of pharmacology, 2 psychiatrists, 2 molecular biologists, a director of pharmacy, Vice President of Pfizer Canada, 2 cardiologists, a surgeon and a deputy Minister of Health with no medical qualifications.
2. For 2008, MS studies included MS pediatrics, sleeplessness and depression with MS, TH17 lymphocytes and lesions, how to deactivate parts of the immune system, and leg braces to facilitate walking. The cause of MS is still theoretical only.
3. Since 2000, research grants have largely focused on neurotransmitters, molecular biology, neurophysics and even stem cell replacement. Stenosis was not a viable topic. What were the long term research benefits based on this Autoimmune Inflammatory Label… certainly, none for my brothers.
A: When it is obvious that the balance and focus of CIHR is neurology, immunmodulatory drugs and chemotherapy for MS research, can anyone really expect that somehow they would shift status quo, mid-stream, to verify a physical intervention to improve proper blood flow that just might render previous research irrelevant? What would happen to their jobs, their salaries, their credibility? Of course, their establishment is understandably impervious to change, but professional credence must be given to other specialists and progress of scientific discovery.
YOUR STATEMENT: I have asked Dr. Alain Beaudet, President of CIHR, to provide advice to the government on how to advance research in this important area (treatment and diagnosis of CCSVI)…CIHR in collaboration with the MS Society of Canada will convene an international meeting of top scientists to identify research priorities…
1. Dr. Alain Beaudet is a neurologist who would need to change his 60 year old theory that MS is an auto immune disease not a vascular problem. How likely will he welcome studies involving biological mechanisms such as physical correction of reflux of venous blood back to the brain that just might alleviate the autoimmune process. He could be typified as an electrician trying to do a plumber’s job.
2. CCSVI is already an identifiable syndrome unanimously recognized by an expert international body (47 countries) in which blood flow from the brain is compromised and is a disease state that by itself must be treated every time it is found with angioplasty. (Exception to the rule...if you live in Canada and have MS, but it is permitted if you don’t have MS.) No MS Canadians can receive this simple treatment locally, either under their provincial health plans or at their own expense...but they can cosmetically lift their brows or breasts.
3. An angioplasty, where a balloon opens constrictions on veins, is not controversial and is often considered more safe and effective than drugs. They have been performed elsewhere in the body as a standard of practice – both with and without stents – for more than a decade. Connection between blocked veins and MS symptoms was identified in the 1930’s and hundreds more research articles and testimonials have corroborated many positive results.
Therein lies the main controversy between neurologists and vascular surgeons. Neurologists call for more research to find a causal link as to why there are such a high number of MS patients with congested veins. Vascular specialists are able to diagnose and dilate narrowed or blocked veins and improve blood flow and, with it, balance and walking, reduce dizziness, fatigue, muscle spasms and incontinence. A scan and angioplasty in a public hospital setting is estimated bout $1500.
YOUR WORDS …in collaboration with the MS Society
1. Who are these directors of the MS Society and what are their medical qualifications that warrant competent appraisal of research grants? Oddly, for trustees asking for public money, the National MS Society would not disclose their biographies, but here are similar qualifications from directors in the BC /Yukon MS Chapter: sales/training, Brain Injury Society C.E.O, Chartered Accountant, self-proclaimed "passion pusher" fundraiser, director of a scrap-tire recycling program, human resource leader, lawyer,. News Director and morning news announcer, radio and television host and producer, assistant professor of the Faculty of Medicine (Neurology), civil engineer for metro planning, sheriff, and the director of the UBC MS Clinic and Clinical Trials Group.
2. The Medical Information and Education Assistant VP for the MS Society of Canada, Ms. Aprile Royal, has several glowing reports about new exciting (and expensive) medications in the drug pipeline on YouTube. A request for a brief biography was never received, but she is not a Dr. Royal.

This is outrageous that non-medical personnel can debate or override the credentials, training and experience of vascular doctors or that some “talking head” at the MS Society eagerly provides drug information about necessary long term studies. Frankly, only doctors should be able to give this advice.
The MS Society really has had a very close tie to Big Pharma for decades, and as long as nothing changes, the talking heads that address the media and advise Government, will still promote the drugs and fight against a simple angioplasty treatment to correct CCSVI.

MS Society of Canada and the National MS Society (USA) announced on June 11, 2010 that they are committing $2.4 million to fund 7 CCSVI research identify the best methods for screening for blockages.
1.CCSVI has been described as dangerous and invasive by the neurological
Community and MS Society based on the main opposition that there are no randomized prospective trials. But, they say it’s alright to only take anatomical pictures and study vein irregularities for 2 years.
2. Not one of the projects is focused on problems with venous blood flow return or improving intervention techniques. Not a single vascular doctor, or other experts, were accepted. Angioplasty is NOT innovative, experimental, or dangerous and has been appropriately evaluated for decades! Proper blood flow matters!
3. The small sample size (200 clients) itself creates a problem because of the danger of sample bias. Double-blind control groups only make sense when testing drugs with one active ingredient to monitor. But MS is a multifaceted disease and it would be near impossible to find subjects who have similar backgrounds, vein malformations, blood flow and MS symptoms, Two years of comparing vein pictures will be inconclusive and reason enough to discontinue this research, as has been suggested.

CONCLUSION D…to be open-minded, research and treatment cannot be exclusive. CCSVI diagnosis and treatment as a non MS-specific therapy has enough current evidence and observation to proceed in fair and equal funding and clinical trials.
YOUR STATEMENT: Our government will continue to work with the MS Society of Canada and CIHR to encourage researchers to apply for funding to further the knowledge of CCSVI and MS.
1. Guess how much of your donations to the Multiple Sclerosis Society go to administration fees..58%... ranked # 2 for charity work drawn from your donations.(I knew it was bad but this is disgusting.)
2. T-3010 forms filed by the Multiple Sclerosis Society of Canada show that the 10 highest paid administrators at the MS Society of Canada make the following salaries plus full benefits:
5 people make from 80,000 to 119,999
2 people make from 120,000 to 159,999
3 people make from 160,000 to 199,999
3. Rather than “working together” on government policies, you must start examining this “advice” from the MS Society, their research foundations and educational consortiums which receive heavy funding from pharmaceuticals. In fact, many such charitable organizations are sometimes referred to as trade associations or opinion makers for drug companies. M.S. Society has not taken one single step or made any effort to interview patients who have already had the procedure, to better understand or investigate the results
 It is clear that “working” with the MS Society will only endorse well entrenched medical models where new data is being ignored (or camouflaged as images without context) and primary spokespersons are well funded and strongly resistant to change. They would face massive layoffs because of the lack of ability to no longer siphon a large portion of donations and use it for Administrative fees. Pharmaceutical companies would have large financial losses because their very expensive meds wouldn’t be the only source of proven “treatment” anymore.

Put these conclusions A, B, C, D, and E, together… and you have a conspiracy and the basis of great unwarranted discrimination with no regard for patients’ rights outside of old theories with very limited positive testimonials.

CIHR has no track record for MS as a vascular condition.
(Canadian Institute for Health Research)
The point is neurologists in their Neurology Annuals can defend their rights to practice old autoimmune drug-based paradigms…but they MUST NOT drag along MS patients who want a second opinion to try something else.
MS Society Directors are rich in advocating for their status quo with no personal disclosures and no medical qualifications.

The point is they MUST NOT override qualified surgeons and their research on congested veins where MS is not the issue.

Dear Honourable Minister, you can see why your letter without these critical components has made us very SAD…and probably many others who endure this devastating disease. What about tax payers who pay this heavy burden of health care? Once informed with facts, why would anybody choose to pay $30,000 of more annually for drugs per patient with limited effects when a simple angioplasty has resulted in so many positive results.
But I AM MAD...VERY MAD because I can see, every day, the toll price my brothers and their families are paying for lack of critical honest information. Your government policies have put so many MS citizens into untenable positions.

Time to think deductively again.

  Here are our rational choices. What option would you choose if you truly understood the devastation of this disease, personally and economically?
wait five to seven years for research ratification via MS Society who support a drug pushing' monopoly on treatment options
1. Continue to accept a doctor telling you that there is no evidence that possible blockage in your Internal Jugular Veins 'doesn't matter really'.
2. Continue to take your recommended drugs with the belief that it is much better for you than good blood flow. Ignore recent studies that suggest that the so-called CRAB drugs have no statistically significant long-term effects ( Copaxone, Rebif, Avonex, and Betaseron,) These standard drugs are administered by injection and cost up to $30,000 per year covered by Pharmacare and taxpayers.
3. Continue a crippled day-by- day existence because neurologists say unproven and vascular doctors are shut down.
 become patient activists and seek physicians with catheter skills and begin these treatments
1. If we have a vascular problem...let us be treated for the vascular problem first.
2. The fact that clinical improvements occur cannot be disputed. Although
the placebo effect cannot be ignored, some of the anecdotal positive results have been impressive. Patients are experiencing undeniable benefits, clearly unmatched by any know MS medication. Even before leaving the procedure room, patients describe improved cognition and a return of sensation and reduction in neuralgia within minutes.
3. 47 other countries approve this treatment and Canadians are forced to spend as much as $10,000 abroad without the benefit of protocols or follow-up care. It also seems that more and more American Interventional Radiology and Endovascular Therapy Clinics and doctors are opening their hands to help. Approximately 1,000 successful liberation treatments done to date around the world should be enough to encourage the Canadian health-care system to allow the treatment as an option to patients – even if on a pay-per-service basis
Call to Hopes and Actions as the Honourable Health Minister of Canada.
1. Note the immediate red flags that come up with a little bit of research…expecting CIHR doctors or MS Society directors to find critical and logical answers and displace decades old theory…highly unlikely. They have milked the potential cash cows for the MS drugs industry and MS charity industry for decades.
2. The M.S. Societies are not acting in our best interests and many patients now are loudly informing media, government and public donors that they are not buying their statement that “ the MS Society endeavors to change government policies, private industry practices and public attitudes in ways that will benefit people affected by MS.” They show rude discourtesy in not answering questions and lack credibility in delivering any medical competence…out of 15 Government relations committee and staff only one person is a MD.
3. Embrace the good news that you already have considerable enthusiastic support of both the Liberal and NDP health critics at the federal level. With your federal financial support, changes at the provincial level may be faster coming. Take a direct role with Provincial Health Ministries and their advisory panels. Demand that they watch the videos and talk directly to individuals who have already been diagnosed and treated. We do not need them to conduct more studies, just investigate the evidence that already exists. Tough economic times require you to be more fiscally responsible in your health budgets. Imagine how quickly the upfront cost would be recovered as use of MS drugs became less common.
4. Initiate real research into blood flow anomalies that will include neurologists, vascular specialists and interventional radiologists working together! Debates about widespread applications should not displace patients’ rights who FIRST need proper clinical trials with diagnosis, treatment and follow-up research. Angioplasties must be allowed whether you have MS or not. Invite specialists like Dr. Sandy McDonald or Dr. Maggisano to initiate a full -scale research trial. The government should fund CIHR to immediately facilitate a registry that will capture the patients accessing CCSVI around the world to determine any change in neurological and vascular symptoms…true CCSVI research.
5. Stop the greatest health travesty of all by anticipating non-medical personnel at the MS Society to define parameters of advocacy or research. Our health decisions and futures will not be handled by fundraisers, accountants and scrap metal dealers, amongst others! In fact, it is time to review and start new legal standards where professional fundraisers with no medical background should have no right to request millions of Canadian tax payers money to fund their special interest research projects or when the Board of Directors refuse to publicly state their expertise. (Example, the current CEO of MS Society of Canada who recently requested $10 million dollars of government money for their interpretation of CCSVI.)
6. Welcome MS citizens as informed and intelligent, who understand the risks if any, and who do not need a paternalistic establishment to protect them behind a science façade of “controversial treatment.” We are NOT desperate, vulnerable, or overwhelmed by unproven unsafe therapies. We know that “hope” doesn’t equate to empirical data…but there is nothing else with so much potential…6 weeks after receiving a one hour angioplasty in Egypt, a MS sufferer for 33 years is now learning to play golf again “because the ground isn’t rocking any more!” We read evidence everyday of other improvements in quality of life that no drug treatment with vast pubic monies has even come close to emulating. Please respect and honor the right of individuals to seek second opinions and make decisions as it relates to our personal health.
7. Canada Health Act and Medicare System will continue to be renowned for high moral and ethical standards and can be on the leading edge of CCSVI testing and treatment. Imagine the benefits that would accrue not only to MS patients but to society as a whole without the need to pay for their MS drugs and accommodate their incapacities.
  Finally, let us particularly listen to doctors who have lived the MS experience and treatment successfully…
  I believe that when a new treatment has practically only minor possible complications (as reported by Dr. Zamboni with venogram and angioplasty) and a good potential for benefits, as opposed to pharmacological treatment rich in side-effects, the need for rigorous scientific double-blind trials is unethical nonsense. We need a few more vascular surgeons and radiologists to start treating vascular anomalies (strictures of the jugular veins) on their own merit, not mentioning MS. (Dr. Campalani, 35 year career cardiac surgeon with MS, also treated for CCSVI with much improved quality of life.)

Honourable Minister, there are thousands of MS patients in our great and humane country who have been told that their symptoms have nothing to do with abnormal blood flow around the brain. For those who believe differently that there is enough research and evidence, give them their liberty in making their own decisions. Liberate the hands of skilled Canadian surgeons so we don’t have to travel at high expense and worry.

For many of us there are no other choices versus a young life being stolen from our families …rapidly losing the ability to walk, to look after their children, homes, gardens, even personal self-care.
Help us leave a better legacy for the Canadian Health Care System.

Mary Berukoff, on behalf of Matt and Dan and families.
PS:   Read the enclosed article How to Stop MS Bullying and Start MS Compromise…it’s all about compromise at this stage.
PPS:  CONGRATULATIONS to Saskatchewan’s Premier Brad Wall to help fund clinical trials of this promising therapy for multiple sclerosis patients...his vision will be shared by the remaining premiers if they are critical and compassionate thinkers as well

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