Wednesday January 17th 2018

MS sufferers need answers

New research from the University of Calgary documenting complications with the controversial MS liberation therapy is one more reason for the province to conduct full clinical trials. Good science is needed before an informed verdict can be reached.

U of C neurologists followed just five patients with multiple sclerosis who travelled outside the country for the controversial chronic cerebrospinal venous insufficiency treatment, which is unavailable in Canada.

All five were treated in Calgary hospitals last October and November, following complications with the procedure.

The treatment uses balloon angioplasty to open blocked veins in the neck.

In a peer-reviewed study published in the Canadian Journal of Neurological Sciences, the authors predict emergency rooms will be inundated with problems from a wave of MS sufferers who travel for the therapy. At least two Canadians have died after receiving the treatment.

The procedure, however, has given MS sufferers high hopes, raising expectations since 2009, when Italian physician Paolo Zamboni first suggested that blocked veins in the neck might be linked to MS. Many patients claim they have benefited from having their veins unblocked. At least one national organization that advocates on behalf of those with MS lashed out at local neurologists, accusing them of stirring up negativity around the safety of the procedure. Others believe the medical community is trying to protect its turf.

Such a response shows how emotional this issue is for people with MS and for their families.

Researchers have an obligation to caution vulnerable patients of the potential risks of any new treatment, particularly one that is for a prevalent disease in our society, such as MS. Bold claims, which potentially hold out false hope for a cure, must be viewed with caution. Until the research is conclusive, there’s always the risk that medical advancements are not what they appear to be.

While many people who have had the treatment claim it helped, the Calgary study reported complications that included clot formation within stents and stent migration, and clots in the veins of the brain.

This raises more questions, including where and how did these patients get treatment? What was

the quality of the followup care? Zamboni has always warned against the use of stents.

A full clinical trial would serve a dual purpose. It would lead to credible research regarding the efficacy of the procedure, much more so than the $1-million study Alberta has instead pursued. The Health Department is asking patients who have received the therapy out of country to register online and share their experiences.

A clinical trial would offer Albertans with MS the opportunity to get the treatment at home, in a safe environment, where they would be assured adequate supervision and sufficient followup care, none of which is guaranteed to those currently seeking treatment in Mexico, Poland, India and other countries that offer the therapy.

Alberta has one of the highest rates of MS in the country. It should be showing leadership in the research of this treatment.

The province is wasting time and money on half measures, when it should be conducting the necessary science required to eventually form a health-care policy on liberation therapy.

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