Despite gov’t study, MS patient considers treatment

  • Jan. 5, 2011 5:00 p.m.

By ADAM JACKSON

Alberta Health will spend $1 million to fund an observational study of certain multiple sclerosis treatments.

But patients with ties to Ponoka say it’s only a half-hearted response from the government.

The treatments being studied will be various venous procedures, including the highly publicized chronic cerebrospinal venous insufficiency (CCSVI) treatment.

“In my discussions with MS patients and advocates, researchers, neurologists and other medical experts, we agreed that an observational study would be very helpful,” said Health and Wellness Minister Gene Zwozdesky. “Our government is committed to help build the body of evidence that will provide a clear indication, one way or the other, about the safety and effectiveness of this new treatment. This study is an important step in that process.”

The Alberta government will provide up to $1 million for the observational study.

While the announcement from the Alberta Legislature was welcomed by MS patients, it still leaves some questions.

“Why does it need to take so long to decide whether the province of Alberta wants to move forward to even do clinical trials?” said Michelle Walsh, an MS patient who is a former Ponoka Stampede queen. She had the treatment in July and felt an immediate improvement in her health.

The three-year observational study will begin in spring 2011. Albertans who have received treatment for CCSVI in another country, those who are scheduled to receive it and other Albertans with MS will be eligible to participate.

Vascular angioplasty, nicknamed the ‘Zamboni treatment’ for its pioneer, Dr. Paulo Zamboni, involves inserting a plastic catheter in to the veins of the patient. A small balloon at the end is inflated, opening the affected veins, then removed. This procedure is especially controversial because is it still uncertain whether MS is actually linked to these veins.

Because the treatment is not yet approved for use in Canada, many patients have been forced to go to European countries such as Poland or to American clinics and are forced to pay thousands of dollars for the treatment.

The observational study will look at the effects of the Zamboni treatment on patients, but the government says it will not start clinical trials until it is sure of the safety and effectiveness of the treatment.

This is not sitting well with MS sufferers because Saskatchewan has promised $5 million in research and for clinical trials of the treatment.

Nikki Davidson, who attended Ponoka Composite High School, suffers from MS. She is planning a trip to either the United States or Poland to receive the Zamboni treatment. The treatment will cost upward of $20,000, since the Canadian health care system does not fund it.

“Although I realize this procedure is not necessarily a cure for my disease, it is something that I am hoping to pursue in the spring of 2011,” said Davidson.

Davidson moved to British Columbia in April 2009. Working hard at realizing a dream, combined with her background in journalism and communications, she successfully obtained a position with VANOC Press Operations for the 2010 Olympics and Paralympics in Whistler, B.C. She worked exhausting hours, but it was a great move for her career.

“Regardless of the toll it took on my health, I wouldn’t have traded the opportunity for the world,” she said.

Davidson then loaded her car and headed back to Alberta for major family celebrations and a significant medical appointment in April 2010. It was during this time that a major setback occurred. She was advised by her neurologist to move back to Alberta to begin a new and extremely risky but necessary treatment that she wouldn’t be able to afford or access in B.C. She was also advised to cease working indefinitely. This was essentially a last resort to improve her diminished quality of life.

After careful deliberation and research, Davidson started drug therapy in June 2010 and now goes for infusions every four weeks. Unfortunately, Davidson has suffered several relapses while on the drug and her symptoms are worsening, thus its effectiveness is at question.

The 30-year-old MS patient is frustrated by the inefficiencies and politics within the Alberta health care system and believes that significant changes within the system are not only needed but necessary.

“It seems like the bureaucratic red tape within our country is standing in the way from helping many of us and it’s really hard not to get jaded by it all,” said Davidson.

“There is big money in the pharmaceutical industry and the reality is that unfortunately sick people fund the economic giants,” said Davidson, stressing that politics and health care should be separate.

“Don’t get me wrong, I am fortunate to live in Canada and to have a decent medical system but there just isn’t enough understanding of or funding into multiple sclerosis, especially in oil-rich Alberta where we have one of the biggest MS populations in the world. Far too many of us are suffering silently when there’s a lot more that can be done to improve the quality of our lives.”

Davidson has held a fundraiser in Ponoka already, and was astounded by her former community’s response. The fundraiser was held on a friend’s acreage and helped to raise almost $2,000 to go toward her treatment.

“I’m so grateful for the support I’ve received recently. I have a massive goal and I can’t get there alone. It’s so refreshing when people step up to the plate to help, especially when the system is failing so many of us. That has unquestionably been the silver lining in it all.

“If I go and get the procedure and it helps in any way, no matter how small, there is no question that no matter how much it costs, it’s worth it. I need to continue living knowing that I’ve exhausted absolutely every medical option and this is something in the here and now that has helped many suffering from this brutal disease. I just hope I can be so lucky and if not, at least I’ll have done something while our government is still figuring out its stance on CCSVI and its relation to MS. I’m out of options and in major need of hope. This is what I need to do to keep moving forward.”

Davidson is waiting for more information about the procedure, the risks involved and the effectiveness or ineffectiveness of her current drug therapy before committing to a date for the Zamboni treatment. She is organizing a few fundraisers in the upcoming year to help her reach $20,000.

If you would like to help Nikki Davidson, a trust account has been set up through the TD Bank. Donations can be made by mailing cheques/money to her mother Judy Davidson at PO Box 1161 Blackfalds, AB T0M 0J0. If you would like more information about how to help Nikki reach her goal, contact Judy Davidson at 403-885-2824. Check out Nikki’s blog at: http://nikkiswellnessjourney.tumblr.com