Christopher Alkenbrack Monday, November 30, 2010


Honorable Maureen MacDonald

Health Minister for the Province or Nova Scotia

RE : 2nd reading or Bill 80 – Multiple Sclerosis Liberation Therapy Act
November 24, 2010


Honorable MacDonald,

As a patient having lived with Multiple Sclerosis for the last 18½ years, I have followed the media reports around the new area of research into

Chronic Cerebrospinal Venous Insufficiency, and kept up with the

research being done in this area quite extensively. I listened with

great interest as you presented during the Debates and Proceedings

session on Wednesday, November 24, 2010 during the second session of the

Nova Scotia Legislative Assembly.

I commend you for the fact
that you have committed some of your time in the demanding schedule that

you lead to look into the issue of “liberation therapy” and into the

understanding of Multiple Sclerosis as a disease and how it affects more

than 3000 Nova Scotians.

THE MISLEADING USE OF THE TERM “LIBERATION”

Before
I continue, I wanted to raise an issue with terminology used during the

presentation of this bill. As a patient having undergone the

“liberation therapy treatment” in Poland on May 18th, 2010, I believe

that it is more appropriate to state “angioplasty” or more precisely

“venoplasty”, since the intervention was a simple day-type procedure

performed on my jugular veins. Zamboni himself has stated publicly, and

in medical conferences that he did not coin the phrase “liberation”, and

that this simply makes reference to “liberation” or freeing up of the

blood flow caused by constricted veins, or impaired blood flow. It was a

popular media slant that the misleading term “liberation” was

interpreted as “liberating” people from the life-long disease of

Multiple Sclerosis. Though I have had the angioplasty treatment, I

cannot confirm that I do not have Multiple Sclerosis. I have been

“liberated” from impaired blood flow problems, but not from Multiple

Sclerosis.

THE QUESTION OF SCIENTIFIC EVIDENCE – CONSULTATION WITH INTERNATIONAL EXPERTS

During
your speech to parliament, you stated, and I quote “I and members of my

government, have said that we will participate in clinical trials if

and when the scientific evidence to do so is there”. (4:45 p.m. Page

3972, Assembly Debates, Wed. Nov. 24, 2010). A few moments later you are

quoted as saying, “I`ve spoken to practitioners who are specialists in

this field as well as had presentations from vascular surgeons and other

people with experience and expertise around diagnosis, radiologists and

what have you, to try to understand all of the dimesions of this

issue….”.

Once again, I commend you on your research, and
seeking answers from the experts – as any competent Health Minister must

do to keep up to date in the dynamic and ever-changing field of

medicine. From your position on the issues, I can only assume that you

have spoken with experts from the field of neurology, most who are

opposed to this new theory, despite the vascular component of Multiple

Sclerosis that has been suspected for over a century.

If you
truly take your position of Health Minister “very, very seriously” as

you state in your own words, I would strongly encourage you to speak

with the emerging experts in the field of Chronic Cerebrospinal Venous

Insufficiency, or CCSVI, as it has been commonly coined. (See Annexe 1 –

List of Experts and their Professional Designations). You will discover

that there are many doctors, researchers, and scientists who are

actually going forth with clinical trials elsewhere. If you have limited

your consultations to Canadian and American specialists in Multiple

Sclerosis, you have one view of CCSVI, but not the experience of people

who are actually doing the studies.

I whole-heartedly agree with
you that this is probably the most extensive and controversial issue

that you will have to deal with as Health Minister, yet your

responsibility is to the citizens that you represent; therefore it is

your duty to research the question by consulting some of the people who

are already doing the research, even if you must go beyond the borders

of our country. As a tax-payer of this province, large sums of money can

be saved by consulting with the experts in the field who are doing the

actual research and intervention.

Contrary to what is being
stated in the current media, follow-up is being offered at many of the

clinics offering treatment for CCSVI, but unfortunately many people who

have already spent thousands of dollars for this treatment must

voluntarily refuse this follow-up as it means travelling back to the

country where the treatment was offered. This is a financial burden for

the majority of people with Multiple Sclerosis, many who can no longer

provide for themselves and their families because of their actual state

of health.

THE VIEWPOINT OF NEUROLOGISTS AND THE MULTIPLE SCLEROSIS SOCIETY OF CANADA

As
for the validity of the expert advice that you have already received, I

can only state that, to my knowledge, no single member of the

neurological community has ever spoken in favour of this hypothesis,

except for Dr. David Hubbard, neurologist in San Diego, California. From

coast-to-coast patients have seen refusal from their neurologists and

doctors to be scanned for CCSVI. How then can you state publicly that

you have sought the advice of experts, when surely you have not

consulted some of the Doctors and Researchers that I have provided in

Annexe 1 ?

As for the position of the Multiple Sclerosis Society
of Canada, on the morning of November 23, 2009, after the airing of the

W5 presentation on Zamboni`s theory, the MS Society of Canada issued a

warning on their website to patients. It was less than twelve hours

later, after an unprecedented outcry, that they changed their position,

and offered a call for research proposals. I find it suspect that the

Society that exists because I am sick would not be more interested in

finding a solution to offering some of the 75,000 Canadians a better

quality of life. I have seen several theories on Multiple Sclerosis, and

have considered many forms of “off label” treatment, but have never

once given in to any of them. I also find it interesting that the MS

Society of Canada, and its neurologists, have never been so outspoken

against other treatments for MS. They have overtly stated that they do

not promote one treatment over another, yet they advocate for the use of

pharmaceutical products and their reimbursement by provincial medical

plans. Many of them are actually paid consultants for large

pharmaceutical companies which you will find in Annexe 2 of this

document.

THE INFLUENCE OF THE MS SOCIETY OF CANADA ON POLITICAL DECISIONS IN CANADA
Mr.
Yves Savoie, the current CEO of the MS Society of Canada, with a panel

of Canadian experts, formed a committee that provided advice as to the

starting of pan-Canadian trials on MS patients. The basis of your

decision to hold of a treatment arm of trials in Nova Scotia, was surely

influenced by the decision of the Canadian Institutes of Health

research. Yet, the expert committee formed was at best questionable.

Even Dr. Lorne Brandes, a Canadian oncologist, questions this decision

when he writes to the honourable Canadian Minister of Health: “No one

can say that the invitees were not all pre-eminent physicians and

scientists. They were. However, the problem that I, and many others,

have is that, to the last individual, these experts represented just one

side of this important and complex issue. As a result, the negative

answer you received was certainly predictable. As you well know

Minister, the rules of debate require the participation of two sides.

Similarly, the courts demand that the prosecution and defense be given

equal time. On that basis, where were those who could have presented the

case for CCSVI clinical trials?” You, honourable MacDonald, state that

you have consulted with the experts, yet if you only consulted with

those who are against this new emerging hypothesis, then your viewpoint

on this important issue will be biased, and single-sided. Not consulting

with those who are already doing a research arm will potentially affect

the lives of thousands of Canadians living with Multiple Sclerosis. As

an MS patient, I have lived enough devastation in my lifetime, and only

hope for others to experience relief of their symptoms, as I have

experienced since that day on May 18, 2010.
THE AUTO-IMMUNE THEORY OF MULTIPLE SCLEROSIS

As
you are well aware, the province of N.S. reimburses the total cost of

all MS medications despite family income or financial situation. If half

of the 3,000 MS patients in Nova Scotia take the disease modifying

medications, then this would translate into a cost of approximately $

30,000,000 (thirty million) annually (calculated at a cost of $20,000

per patient X 1,500 patients). This is a phenomenal expense to the

province considering that the immunomodulatory medications are only

helpful in staving off disability in about 30% of patients. In Many

other provinces require a co-pay based on family income, but not Nova

Scotia. Also, the auto-immune theory of Multiple Sclerosis has never

been proven. Not one single pharmaceutical company can state with

certainty that MS is entirely an auto-immune disease. Not one single

neurologist can state with 100% certainty that MS is an auto-immune

disease. Much of the science behind the understanding of MS is

interpretation based on symptoms experienced by MS patients. I am not

suggesting that Multiple Sclerosis does not have an immune system

component, but it is probably more than the immune system.

If
indeed there is a vascular component to MS, which has long been

suspected, then the research must be carried out by vascular

specialists. I would challenge you to cite one area of science where we

would permit specialists from one field to take over and lead the

research in another field; yet this is exactly what is happening here.

And as Health Minister, it is your responsibility to investigate these

issues in an open-minded, impartial manner.

THE CURRENT STATE OF MULTIPLE SCLEROSIS TREATMENT – QUESTIONABLE STUDIES AND COSTLY FAILURES

I would like to refer you to a recent study that was published in the British Medical Journal in June of 2010 (http://www.bmj.com/content/340/bmj.c1672.full).
For credibility purposes, this is the same medical journal where

world-class neurologist and MS specialist Dr. Jock T. Murray has

published papers, such as the article The Diagnosis and Treatment of

Multiple Sclerosis in March of 2006 and also the article entitled Timing

of Birth and risk of multiple sclerosis: a population study in December

of 2004.

This same journal published the above-mentioned
article in which it calls into question the long-term outcomes of these

medications, and deems that the disease modifying therapies for MS

patients is a “costly failure”. As a steward of public funds, you are

responsible to all tax payers of Nova Scotia to make sound decisions

with the hard-earned money of the those who contribute to the public

coffers of this province.

THE STUDIES BEING PERSUED BY THE MULTIPLE SCLEROSIS SOCIETY OF CANADA

One
other objection to the information that you presented during your

speech on the 2nd reading of bill 80, are the many references that you

have made to the studies being funded by the Multiple Sclerosis Society

of Canada as being reliable in the advancement of scientific

understanding of CCSVI. First of all, may I point out to you that the

only reason why the M.S. Society made a special call for study proposals

on November 23rd, 2009, was because there was a public outcry from

Multiple Sclerosis patients, and not because there were any neurologists

or MS researchers interested in these studies. If there had not been a

patient outcry, I fully suspect that this hypothesis would have been

buried in the history books.

I have read the research proposals,
and remain sceptical that they will advance the theory in any way. It

is well known that in order to prove or disprove a theory, the

experiment must be founded upon the same scientific framework as the

original study. None of the studies funded by the MS Society of Canada

even remotely meet this criteria. I`ll expound upon the studies to which

you referred during your speech.

The study lead by Dr. Brenda
Banwell at the Sick Children`s Hospital will look into the question of

Cerebral Venous Hemodynamics in Pediatric Multiple Sclerosis. This is a

very interesting proposal, and will answer many important questions on

the beginnings of CCSVI in children. Yet this study will not help the

hundreds of people that will be diagnosed with progressive forms of MS

over the course of the next few years. Nor will it bring relief to the

hundreds of people who will move on from a relapsing remitting course of

the disease to a secondary progressive stage, which eventually leads to

greater disability, and a greater burden on society as many of these

people are forced to leave the work force and depend on government

programs for their basic needs.

As for the other Canadian
studies, I will summarize in stating that only one study that I found

does not contain neurologists and scientists who have not overtly

denigrated Dr. Zamboni and his hypothesis in the media. Some have made

statements as “this is a hoax”. How then, do you expect the science to

advance when there are panel members on these studies who have a bias

against the CCSVI hypothesis ? Furthermore, the expert panel of the

Multiple Sclerosis Society of Canada, the Medical Advisory Committee, is

made up mostly of neurologists, of which 11 out of 13 of the present

members have awarded themselves subsidies to fund their own research

interests or those of their assistants. How can your government accept

expert advice from neurologists on vascular issues ? Dr. Sandy

MacDonald, a cardiothoracic and vascular surgeon from Barrie, Ontario,

actually treated 6 MS patients from his hometown. He too submitted a

proposal, yet it was not funded by the MS Society. When I requested a

list of projects from the MS Society of Canada that did not receive

funding, this information was refused me by “Rob” the person in charge

of the MS Society of Canada web page. As a former chapter president for

the Annapolis Valley MS group, I was always lead to believe that the MS

Society of Canada was forthcoming in the information that they provided,

yet it was in the course of a media interview that I learned that Dr.

MacDonald`s research proposal was rejected. Other proposals from leading

researchers in the area of CCSVI were also rejected.

I can only
suppose that one of the experts from the MS Society that you consulted

with was Dr. Virender Bahn, Director of the Dalhousie MS Research Unit.

Dr. Bahn was himself part of the International Committee of experts that

made the decisions as to which of the project proposals to fund. I find

it interesting that many of the projects accepted were from the leading

researchers already funded by the MS Society of Canada. Since they are

not, and would have not pursued the research without the pressure for MS

patients, I find it suspect that they now make research proposals into

areas which are outside their field of expertise and are unrelated to

their prior research.

THE CASE OF TWO NOVA SCOTIANS

As I
mention the names of two Nova Scotians in this section, I do so, having

received their consent and having discussed with each of them personally

the content of this letter. They have permitted me to cite their names

and the information about their medical history.

In a recent
meeting with several MS patients, you personally denied access to the

angioplasty on a compassionate basis to an MS patient from xxxxxxxxxx,

Nova Scotia, by the name of xxxxxxxxxxxxxxx. xxxxxxxxxx has an

aggressive form of MS, and was offered no medical treatment for xxxxxx

MS, as none exists. xxxxxxxxx had the angioplasty procedure performed on

November 20th at a private clinic in New York. xxxxx has already showed

improvements that I will not enumerate at this time. I would invite you

to make contact with xxxxx, since you already have xxxx contact

information. Time will tell if this treatment offered xxxxx

long-standing improved quality of life – something that does not usually

exist for progressive MS patients.

On that same day,
xxxxxxxxxxxx of xxxxxxxxx, Nova Scotia, had the angioplasty procedure

performed in a different hospital in New York, by Dr. Salvatore

Sclafani, former head of interventional radiology at Suny State

University in Brooklyn, New York. The two doctors who performed this

intervention are not neurologists, and know little about Multiple

Sclerosis, other than that patients are finding relief of their symptoms

after undergoing an angioplasty-type procedure. Upon xxxxx return to

Canada, xxxxx sought follow-up treatment and was refused a prescription

of blood thinners from a xxxxxxxxxxxxx at the MS Clinic in Halifax.

Luckily xxxxxxxx had a caring doctor who agreed to prescribe the blood

thinners and to do the follow-up blood work required for a venous

condition. xxxxxxxxxx informed me in a telephone conversation on Friday,

November 26th, 2010, that during xxxxx angioplasty procedure, performed

by an interventional radiologist, they were able to remove a

life-threatening blood clot that was discovered. As a Nova Scotian,

xxxxx life could have been endangered by the refusal to provide

follow-up care from a member of the MS Clinic. This type of

discrimination must be stopped before an innocent life is sacrificed

uselessly.

WHILE WE PLAY THE WAITING GAME

For many MS
patients, the waiting game has started. Caught in the cross-fire of a

medical dispute, many await answers. I can tell you, honourable Minister

MacDonald, that I know of several patients who have developed rare

brain infections, and others who have died from complications due to MS.

It is true that there have been complications due to the “liberation”

procedure, and many of them have been because stents where implanted in

their veins, something that Dr. Zamboni does not approve of.

Dr.
David Hubbard, an American neurologist recently stated in a CCSVI

symposium on July 27, 2010 in New York City, that “Forty years and

billions of dollars of research into MS has yielded nothing; viral and

autoimmune theories of MS remain unproven”. For an unproven theory, many

billions of dollars are being compromised worldwide, as MS patients

wait for some ray of hope – a ray of hope that you, honorable MacDonald,

can bring to MS sufferers in your province.

Knowing these
links, you can sit back passively and wait for more patients to die or

become more disabled – patients that suffer every day from this

devastating disease. Or you can act responsibly and question experts on

this new area of research – experts that believe that there is more to

MS than the autoimmune theory.

I challenge you to rise to the
forefront and move forward and to represent ALL Nova Scotion with MS in

their fight to remain productive, tax-paying citizens of the province

that you represent.

Christopher Alkenbrack
XXXXXXXXXXXXXX, Nova Scotia


c.c. Honorable Alfie MacLeod, Deputy, Cape Breton West
Honorable Jamie Baillie, Cumberland South
Honorable Karen Casey, Chester North
Honorable Romona Jennex, Kings South

Several members of the Canadian Press

Annexe 1 – List of Experts and their Professional Designations

The list continues to grow, but these are a few of the main scientists interested in the area of CCSVI

DAKE, Dr. Michael, Chief of Cardiovascular and Interventional Radiology, Stanford University School of Medecine, California

GROZDINSKI, Dr. L, MD, PhD, Specialist in Angiology, Phlebology and Ultrasound, Sofia Bulgaria

HAACKE, Dr. Mark (PhD), Imaging Specialist, McMaster University, online biographical information http://www.mrc.wayne.edu/people/haackecv.pdf

MCDONALD, Dr. Sandy, Cardiac and Thoracic Surgeon, Barrie Vascular Imaging, Barrie, Ontario.

SCLAFANI, Dr. Salvatore, MD, former head of Interventional Radiology, SUNY University, New York

SIMKA, Dr. Marian, MD, specialist in vascular surgery, Katowice, Poland

WEINSTOCK-GUTTMAN, Dr. Bianca, Jacobs Neurological Institute, Buffalo, New York (leading specialist on MS in children)

ZADINOV, Dr. Robert, Director of the Buffalo Neuroimaging Analysis Center, New York State University, Buffalo, NY

ZAMBONI, Dr. Paolo, MD, specialist in Vascular Surgery, Professor of Vascular
Surgery, University of Ferrara, Italy (online link to C.V. http://www.fondazionehilarescere.org/cst/eng/cv_ZAMBONI_eng.doc)

ANNEXE 2 – Summary of the Disclosures of Canada MS Researchers to Large Pharmaceutical Companies

http://www.facebook.com/topic.php?uid=110317832313822&topic=586