Sunday, August 1, 2010

'Post-Liberation' Politics?

A couple of weeks ago, Jane Taber of the Globe & Mail reported, Touched by MS, foes lay politics aside:

Conservative MP Larry Miller had just finished speaking Monday night when NDP MP Malcolm Allen rose from his Commons seat, walked over and gave him a great big hug.

It was a remarkable gesture in a House that is so often filled with acrimony and dissent. But this was a remarkable debate — a so-called take-note debate — on a controversial new procedure to diagnose and treat multiple sclerosis.

“Those kinds of things don’t happen in the House,” Mr. Miller, the MP for Bruce-Grey-Owen Sound, said Tuesday.

But Mr. Allen (pictured), who lost his father to the disease, was moved by Mr. Miller’s speech, in which he spoke of his youngest sister, Mary Lou, 45, who has suffered from MS for nearly 20 years.

There is a new hypothesis that MS is not an auto-immune disease but a condition caused by “chronic cerebrospinal venous insufficiency,” or (CCSVI), which is the narrowing of veins that prevents the blood from draining from the brain efficiently.

The diagnosis and treatment for this is not performed in Canada and many MS sufferers have gone abroad to have it done — at great expense and with some positive results.

Earlier in the debate, Lethbridge Conservative MP Rick Casson was just barely able to hold on to his composure as he stood in his place to speak of 38-year-old daughter, who also has MS.

“I can put a personal touch on this,” he said. “If I am going to recommend that my daughter takes a treatment of some kind, I want to make damned sure it will not kill her, cripple her or make her worse.”

She was diagnosed five years ago; she has two children, is a teacher in Edmonton and is contemplating doing a PhD.

Mr. Casson describes her as “amazing." He wants to ensure that enough caution is used so that MS sufferers are not given false hope by this procedure. He notes, too, that not all MS sufferers would benefit from it.

There was no vote at the end of this debate.

Still, it gave MPs the opportunity to look at and debate the reluctance of governments to recognize, through funding, this new procedure.

Mr. Miller’s sister, meanwhile, is to be tested soon to determine if she can have the treatment. If she can, Mr. Miller, says it is likely she will go try to go to New York to have the procedure done.

In fact, it was noted that some Canadians are travelling to Poland and other European cities, paying up to $10,000 to have the angioplasty procedure that opens up the neck veins.

Mr. Miller’s sister was diagnosed with MS about nearly 20 years ago. Reports (first broadcast on CTV’s W5) of the controversial procedure by Dr. Paolo Zamboni gave her “really the first ray of hope or sunshine that she has seen”, he told the Globe in an interview Tuesday.

She wanted to try the procedure immediately.

“We want it to be a safe procedure … I’d like to see it here (in Canada),” he said. “If research and science shows that there is something wrong with it, then fine, we will accept that.

“But everything we have seen in Europe so far it looks very, very promising and I just want to see us piggy back on research that is already done and advance it from here,” he said.

Last night, he spoke about the provincial and federal governments putting jurisdictional issues aside and working together on this.

As well, Mr. Miller, who does fundraising for MS, expressed disappointment with the MS Society, who he said, “has not yet taken an even broader approach to include more new treatment options that have shown promise, like CCSVI …”

Ms. Duncan, whose tenacity sparked the debate, says that at first there were some politics played last night over the role of the federal government in health issues.

But she said there was a real shift in the debate when “someone on the government side had the courage to say that we have responsibility here.”

“It was really good,” she said. “What we’re fighting for is that these guys be able to have diagnoses and treatment in Canada. Why are they having to go overseas when everything is available here?”

I have already covered the Liberation Treatment and the ensuing Liberation War. The good news is that the scientific community is finally starting to take notice. In Canada, Saskatchewan has become the first province to fund clinical trials into a controversial new treatment for multiple sclerosis pioneered by Dr. Paolo Zamboni and Alberta is pondering paying for the treatment as well.

In the US, researchers at the University at Buffalo, led by the Department of Neurosurgery, will embark on a landmark prospective randomized double-blinded study to test the safety and efficacy of interventional endovascular therapy—dubbed “liberation treatment”—on MS symptoms and progression.

To be sure, skepticism abounds as the new MS treatment is far from proven. But while neurologists warn against false hope, many MS patients are seeking this treatment and many of them are seeing significant improvements afterward.

I don't blame them. A large subset of the MS community has no access to any treatment whatsoever. People like me who fall under the "secondary progressive" (SP) label of the disease are asked to wait while the science sorts all the controversy out.

I'm all for sound scientific methods, but when patients are suffering, and time isn't on their side, governments need to accelerate the treatment of this disease. MS is the leading cause of neurological disorders among young adults. Canada has one of the highest incidence in the world. The social and economic cost of the disease is huge. Of course, a revolutionary treatment for MS will upset Big Pharma, but who cares? Even if 10% of MS patients find some benefit with this new treatment, it's worth funding it.

Finally, I can't overemphasize the importance of taking large doses of vitamin D, especially if you suffer from chronic diseases. It's interesting to note that scientists researching the sunshine vitamin are so convinced of its benefits they’re popping far more than the recommended amounts.

I am up to 20,000 IUs a day, which I've been taking for several months now in the form of vitamin D liquid drops every morning in a glass of water (each drop is 1,000 IUs) and feel great (talk to your physician before increasing your uptake). My disease has progressed extremely slowly over the last 13 years, but it has progressed. And I've particularly been through a lot of personal hardship over the last four years, things I wouldn't wish on my worst enemies, but it has made me a lot wiser and a lot stronger. "Persevere no matter what" is what I keep telling myself every day. There is hope, and no matter how bad it gets, there are people out there suffering a lot worse things in life.

I leave you with a presentation from Dr. Michael Dake, a professor at the Department of Cardiothoracic Surgery at Stanford University's School of Medicine. There are two parts, both worth watching. As we move into 'post-liberation' politics, many MS patients should finally get the answers they're looking for and hopefully for many of them, the quality of their lives will drastically improve.

Dr. Dake - Part 1:

Dr. Dake - Part 2:

No comments:

Post a Comment