Macleans: MSers Screwed by Government, MSSC

Ann Kingston has done another great job of digging up the facts on the CCSVI controversy: see article in today's Macleans.  It's not a big surprise to many of us, but it still makes me sick to know that the Harper government, its lackey bureaucracy and the MS Society administrators seem to be doing their utmost to maintain the status quo.  GRRRRRRRRRRRRRR!!!!!!!!!!

How It Feels To Be An MS Dropout

Here is a very good article by Linda J. Rousay in this week's CCSVI Locator... I think you'll enjoy it:

When MS began to drastically affect my life, I was a wife, mother and career professional with many varied interests. I was active in my church, community and home schooled my children. The first thing to go was my career. Instead of getting paid, I did volunteer work in the same field. People are more forgiving of your physical problems and cog fog if they aren't paying you. Eventually my youngest daughter decided to finish her last two years of high school in the public school system. Actually I think I was more involved with her education than I was before as I volunteered for everything at school also.

By the time my EDSS reached 8.0 there was little of the old ‘me’ left. I went from caregiver to needing daily care myself. I hated the power chair, scooter, transfer table, disabled license plates for the handicap equipped van, support bars, in-home health care and me. I didn't adapt to my situation as well as some of my "MS buddies"; likely because I'm stubborn, opinionated and was accustomed to giving not taking. Though they tried to adapt also, my family seemed to be falling apart before my eyes.

Somewhere along the line I stopped feeling sorry for myself and saved as many *spoons as I could to find ways to feel better physically hoping that emotional strength would follow. Posting online took so much time that I was numb with fatigue. My online friends (some have actually remained friends) pulled me through it all. I searched the web to find adaptive aids to help me keyboard, communicate and make things look bigger so my failing eyes could see them.

The lifestyle diet and drug changes I made would have been difficult for anyone. In my hazy cognitively impaired stupor, it was a gargantuan obstacle. Again my husband, children and MS friends came to the rescue. By the time I heard about CCSVI nothing short of a miracle was going to slow my downward spiral.

The rest is Youtube and Facebook history. There is still a question mark that obscures my sight from the future but I no longer fear the unknown because I’ve mastered it before; always with “a little help from my friends. I get by with a little help from my friends.” (John Lennon and Paul McCartney)

The transition back to normalcy has been bittersweet. I still have to pinch myself when I wake up in the morning and there is no support bar above my head. The van was sold well over a year ago and every adaptive and assistive device but my power chair gathering dust in the garage has been given away or donated.  Much of it I had to fight for from either my insurance company or a charitable organization. . Some people have said I was crazy to get rid of all of those things that took me so long to accumulate because my recovery from MS symptoms could be taken away anytime. Perhaps they are right yet I can’t live in limbo either.

I would like to say that the journey home has been bright and beautiful, and for the most part it has been very positive. As my cognitive functions improved I learned that about 15 years of my MS journey has been time compressed. Though I remember the events of the past decade and a half, there are holes in the tapestry of time that are as hazy as they were the first time around. After the news of Dr. Zamboni’s work exploded in cyber space chaos ensued. The trust I once readily gave my doctors is gone forever. I have formed new medical alliances, but the days of trust and reliance will never again be realized. New friendships have been forged yet cannot replace the ones lost by anger and mistrust. New beginnings are always difficult, sometimes painful. Though I am in communication with others who have had similar experiences, we have all chosen different ways to deal with recovery. The excitement and gratitude for a second chance has been tempered somewhat by the more negative events of the past two years. The diagnosis of MS places a person in a strange club of sorts. There is only one requirement to join this group, but the price is so high that nobody wants to belong. Some who have only residual effects of the condition no longer feel “at home” anymore. Others would like to pretend that they were never even there. One woman I know was once extremely overweight. She could tell self-effacing jokes that made all of her more portly friends tear up in laughter. When she lost enough weight to look “normal” she began to realize that these friends didn’t laugh anymore when she told her jokes. Laughter was replaced with embarrassment, anger and maybe a touch of envy. In any case, she was no longer welcome in that “club” because she did not meet the one requirement: obesity. It can be that way for PwMS/CCSVI also.

The only regret I feel comes from the inequity among us. Gender, age, location, education, money, influence, achievements or any other disparity that may exist for us should have no effect on our opportunity to be treated. Though I may not be personally responsible for the egregious treatment of PwMS/CCSVI in regard to the access to the proper medical care, guilt does ebb and flow unbidden.

It is past time for reparation and equal access. To continue to allow the suffering, indignity and declining quality of life for thousands of people with a debilitating chronic disease solely to appease those with a personal agenda is an inhumane, heinous act of cowardice.

*Anyone who has not been introduced to the “Spoon Story” by Christine Miserandino , you can find it here: http://multiplesclerosis-relief.com/2011/05/02/ms-center-and-the-sp...

Back in the pool!

After many years away from swimming, my two sessions in the pool this last couple of weeks have convinced me that there is much to be gained from doing pool-based physio, so I'm a member of the Y again.  I intend that, once the summer is over, I'll be going about 3 times a week.  Add that to my 5-7 times a week at our gym, biking a half hour each day that the weather allows and the start-up of the AXON program, I'll be a busy boy this fall.  Good thing I'm retired now!

Axon program and other things

I have spending a lot of my time on various types of physiotherapy.  I work out in the gym about an hour a day.  I bike about a half hour - it's about the only way I can get a good aerobic exercise so I'm glad my balance has mostly stayed improved since my Polish "liberation" treatment, allowing me to bike about 8 Kms per day. This summer I have been trying a couple of other things, as well: the AXON program and some special swimming lessons.

Thursday will be our last session of the pilot AXON program until the fall.  I think that it has been useful in helping isolate and work on improving muscles and groups of muscles that are giving us problems.  We'll also be getting exercises to work on by ourselves until the program starts again in the fall.  The folks at the UNB Rec department intend to work on improving the program itself so that people who join in the fall will get the benefit of our participation in the pilot. Tomorrow I will have my second session in the pool at the YMCA, working with an instructor who knows my problems and has adapted some exercises that, again, work to improve specific muscles that I have difficulty dealing with in my dry land work-outs.  I was really impressed with what I got out of my first session, and expect to continue this, probably in the fall after summer vacation is over.  I also suggested to UNB that they should work with the YCMA to develop a two-part program (in the gym and in the pool) to help people with MS, strokes, etc.  They seemed interested.  Does anyone know of anywhere else that such multifaceted physiotherapy is being effectively done?  If so, let me know.

Comparing studies on CCSVI results

Two different studies on the quality of life improvement after CCSVI treatment: Facebook page. Startlingly different conclusions!

Newfoundland: No Benefit to Liberation

It sure would be good to know how the study was conducted: http://updatednews.ca/2012/06/07/no-benefit-to-controversial-ms-treatment-says-n-l-study/.  Could it be because the symptoms that are improved (fatigue, balance, autonomic functions) are hard to measure... and so there is no "measurable" impact?  What makes this suspicious about the whole story is that many of the news stories again mention a) the silly/suspect FDA announcement of last month and b) the two Canadians who have died from complications after the procedure (without mentioning the details or the fact that THOUSANDS of Canadians have been liberated).  Sounds like lazy news editors all reading from the same script... wonder who wrote the script?

Retired, but not yet dead

Last night I attended my "official" retirement party from my position at the University.  I was asked by many: "What will you do now?"  I told them that, besides working on some projects and getting caught up on the countless books I haven't read and films I haven't seen, I'll be working hard on physio, gym workouts and swimming in order to try to improve my mobility - or at least to keep it from getting worse as fast as it would otherwise.  And, of course, I'll continue to update this blog.

Speech by Senator Jane Cordy

The following is a speech about MS and CCSVI given to the senate on June 5 by Senator Jane Cordy... worth reading:

Multiple Sclerosis and Chronic Cerebrospinal Venous Insufficiency

Resuming debate on the inquiry of the Honourable Senator Cordy, calling the attention of the Senate to those Canadians living with multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI), who lack access to the "liberation" procedure.

Hon. Jane Cordy: Honourable senators, I am pleased to speak on my inquiry and to bring to your attention the thousands of Canadians living with multiple sclerosis and chronic cerebrospinal venous insufficiency, or CCSVI. These Canadians and their families continue to plead with this government to move ahead with supporting the CCSVI treatment procedure within the Canadian health care system.

I would like to take a moment to thank Dr. Kirsty Duncan, the Liberal Member of Parliament for Etobicoke North, for the tremendous work she has done for those with MS. In addition to being a Nobel Prize winner, as part of a panel on climate change with Al Gore, she was recently awarded the Pioneer in Healthcare Policy Award by the Society for Brain Mapping and Therapeutics. She was recognized as being one of the best advocates of brain research in Canada.

Honourable senators, 75,000 Canadians live with the progressively debilitating disease multiple sclerosis; another 1,000 are diagnosed with the disease each year. Canada's prevalence rate of MS is among the highest in the world, at 240 per 100,000 people.

The suicide rate for MS patients is a staggering seven times higher than the national average. This is a shocking statistic and indicative of the hopelessness many MS sufferers feel toward finding relief from their symptoms.

Honourable senators, I believe passionately that those Canadians with CCSVI should have access to our medical system. One of the five principles of the Canada Health Act is accessibility. Yet many Canadians with MS have been treated badly by our health care system, and some have even been refused treatment.

Venous angioplasty for those with CCSVI is taking place in over 60 countries around the world. As honourable senators know, Canadians with CCSVI must travel outside Canada to have the procedure done. We are promoting medical tourism here in Canada.

I would like to thank Premier Brad Wall of Saskatchewan who announced on January 12 of this year that his government would support clinical trials for residents of his province. My understanding is that 80 patients have already been selected to go to Albany, New York, which has the largest CCSVI treatment clinical trial of its type. Many Canadians who have travelled to other countries have done so at great financial hardship. One gentleman I met remortgaged his home, others have had community fundraisers, and others have used their savings. This is Canada, where medicare was brought in so that Canadians should not suffer undue hardships as a result of an illness. Unfortunately, some Canadians with CCSVI are suffering financial hardship. Even worse, when they return to Canada, some are refused follow-up care.

Does venous angioplasty work miracles for everyone who has the procedure? From what I have read, one third of patients have tremendous improvement. They would be the so-called "miracles," the ones who go from being bedridden to walking. One third have some improvement, and one third have little to no improvement. If we had our registry in place, which was announced over a year ago, we would have better made-in-Canada data.

Health Canada should support clinical trials in Canada and provide follow-up care to ensure the safety and well-being of those Canadians who choose to have the procedure done, whether here in Canada or abroad. It is shameful how many Canadian MS patients who had the procedure done abroad are denied follow-up care by our health care system. These are Canadians who want and deserve the opportunity to get back some semblance of a regular life, to regain some quality of life.

I am concerned about the CIHR's expert working group set up to study CCSVI. I have spoken in this chamber before regarding this working group. According to the CIHR website, the working group's mandate is:

• The scientific expert working group will make recommendations on further studies including, if appropriate, a pan-Canadian interventional clinical trial that would evaluate the safety and efficacy of venous angioplasty in patients with MS, and will provide advice on the protocols to expedite such a trial (e.g. inclusion/exclusion criteria).

Honourable senators, this is a very important mandate, an important mandate for those members of the expert working group. All Canadians would assume that those on the expert group would be independent and, equally important, would be seen to be independent. We, as politicians, understand the importance of public perception. In fact, honourable senators, Dr. Sandy MacDonald, Dr. Haacke and Dr. Zamboni were not included in the August 26, 2010 joint CIHR-MS Society meeting. The explanation given was that their work would be discussed and including them might bias the discussion. In fact, Dr. Sandy MacDonald, who has performed venous angioplasty on MS patients, and who has a diagnostic imaging clinic in Barrie, Ontario, and whose office trained the imaging diagnostic team in Saskatchewan, was not included as part of the diagnostic imaging meeting held by CIHR last fall. One of the country's leading experts was not invited to be there.

Honourable senators, Dr. Barry Rubin is a member of the CIHR expert working group. He is also the third author of an article called "The 'Liberation Procedure' for Multiple Sclerosis: Sacrificing Science at the Altar of Consumer Demand" in the May 2012 Journal of the American College of Radiology, volume 9, issue 5.

Honourable senators, I am not questioning any doctor's right to their opinion on multiple sclerosis or CCSVI, and I am not questioning their right to publish medical articles on CCSVI. What I am questioning is that a supposedly unbiased, independent member of the expert panel would publish such an article.

One has to question whether this will prejudice the ethical board reviews for CCSVI trials.

This is clearly a conflict of interest and I would hope that Dr. Rubin would step down from the panel of experts. The fear among members of the CCSVI community that have been in contact with me is that the expert panel can no longer be seen as independent, and they fear that perhaps the government's announcement of phase I clinical trials is not meant to proceed but is, in fact, being set up for failure. That would truly be unfortunate. The study should be open, transparent and, above all, should be conducted without bias. This is what Canadians deserve. This is what the CCSVI community in Canada deserves.

Honourable senators, there is a great concern with the CCSVI community that while the government fast-tracked Tysabri and Gilenya for use by MS patients, the government has been reticent about clinical trials for venous angioplasty. Tysabri is known to cause PML, or progressive multifocal leukoencephalitis, which is a rare and usually fatal viral disease. This drug, which was fast-tracked by Health Canada for use by MS patients, has now infected 232 people with PML and killed 49 others worldwide. Gilenya, the other drug fast-tracked by Health Canada for MS patients, has now killed 11 people and is currently under review in Canada.

Unfortunately in Canada, when a drug is under review, we, as Canadians, receive little or no information about the whys or, indeed, about the process of the review. By the way, Gilenya is not supposed to be given to people with a vascular condition, so it should not even be taken by those with CCSVI.

So you see, honourable senators, the drugs Gilenya and Tysabri have been fast-tracked for MS patients, but the venous angioplasty clinical trials for MS patients with CCSVI continues to move at a snail's pace. In fact, we still have not begun to keep records of those who have undergone the procedure. The establishment of a registry was announced in March 2011. The registry is supposed to start in September 2012. We will have lost a year and half of evidence related to venous angioplasty. We could have been tracking and collecting data for those who have had the procedure. We would have had some data on the results one month, three months, nine months and a year after the procedure has been done. Honourable senators, we cannot get this time back.

Honourable senators, on May 10 of this year the FDA issued an alert on the potential dangers of the liberation procedure to treat CCSVI. The FDA regularly issues warnings for pharmaceuticals or medical procedures. These warnings are a positive thing. The more informed a patient is about a drug or procedure, the more informed their decision will be about what course of treatment they wish to follow. These types of warnings provide greater patient safety and transparency. In fact, our Social Affairs Committee has heard over and over again the need for openness and transparency for clinical trials in Canada. The FDA does say, "There is no clear scientific evidence that the treatment of internal jugular or Azygos venous stenosis is safe in MS patients." In fact, this is incorrect as there have been four published studies which conclude otherwise.

As Dr. Bill Code, an anesthesiologist from British Columbia, and a CCSVI patient who has had venous angioplasty, stated:

It's important to take it in perspective. If there has been one direct death, perhaps two, in say 12,000 cases, that's still much less than we're getting from some of the drugs used every day in multiple sclerosis.

Dr. Rob Zivadinov, a neurologist and lead researcher in the largest CCSVI study taking place in Buffalo, New York, concluded that CCSVI does exist, and it is not unique to MS.

Honourable senators, I had the pleasure of hosting a breakfast on CCSVI with Dr. Kirsty Duncan. One of the presenters was Dr. Joseph Hewett, an interventional radiologist and phelbologist. Dr. Hewett was born in Manitoba, but works in the United States. He jokingly said that he works in the United States, but treats a lot of Canadians.

Dr. Hewett currently diagnoses and treats patients with multiple sclerosis and other neurodegenerative disorders using MRI, ultrasound and venous angioplasty, and he has been doing so for over 15 years. The techniques being used to treat blood vessel abnormalities in MS patients are the same techniques that have been used for decades. There is a large and increasing amount of research showing an association between diseases like MS and the blood vessels. As Dr. Hewett said, with a blockage it may take decades for the problems to accumulate, but over the course of years the results of these blockages in the outflow compound themselves. We know that blood vessels play a major role in neurological disease.

Honourable senators, even if you doubt that venous angioplasty for those with CCSVI works, should you not at least get as much information as you can?

As Dr. Hewett said:

• The overwhelming number of patients with MS who have had an improvement in their health as a result of changing the plumbing from their brain should be proof enough that we need to look at this closer — that we need to figure out what is valid and what is not regarding our understanding of the subject. We owe this to the hundreds of thousands of Canadians who are afflicted by neurodegenerative diseases and to the millions of Canadians who care for them.

Honourable senators, I am certain that most of us know someone with MS. Should they have travel to Mexico. Poland or the United States for venous angioplasty? This is a procedure that has been done for decades in Canada. It is performed for Budd-Chiari Syndrome and May-Thurner Syndrome across Canada.

The practice of medicine is continuously changing and evolving. As patients, we must always weigh the benefit-risk ratio of a medical procedure or a medication. Do I take the medication with its risks, or do I not? Do I have the medical procedure with its risks, or do I not?

Honourable senators, I will leave you with these thoughts from Christopher from Nova Scotia:

• As an MS patient I have always been willing to take the risks of increased liver damage, possibility of developing leukemia, increased risk of cardio toxicity . . . and these are with the drugs. I took the "risk" of venous angioplasty. And I won that gamble . . . more than I can say about the risks of the drugs where I came out short-changed.

Speak out!

I know that this isn't a "MS" issue, per se, but protecting the environment and democracy should be at least as important to us as to the average Canadian:

Are you worried about the environmental and democratic process implications of Bill C-38? The bill would allow the federal government to greatly reduce its ability to provide environmental oversight, while at the same time stifling advocacy by environmental NGOs. Today, hundreds of organizations (such as http://www.pembina.org/blackoutspeakout.html) and individuals have joined the campaign to speak out against the government's regressive moves by putting this message on their web sites: http://www.blackoutspeakout.ca/. 

Valve job?

Maybe, in the near future, they'll replace valves instead of stenting them open: Facebook page concerning a replacement valve patent.

AXON Training Results

I've finished the third week of the AXON training course and I'm pretty sure that this is going to be good for me.  Despite doing apparently "easy" (to a normal person) exercises, the workouts that isolate the specific muscles and muscle groups that have begun to atrophy (on my left side) means that I do feel quite tired at the end of the one-hour session... and that gives me hope that I'll be able to see some improvements in their functioning by the end of the course.  It will also give me exercises to incorporate into my regular workouts for when the course is over.