Plight of MS patients exposes flaws in Canada’s approach to medical research
Diana Gordon travelled to the United States earlier this month to have a new MS treatment touted by Italian doctor Paolo Zamboni. After the procedure, which opens up blocked or malformed veins, the Barrie, Ont., woman said she has noticed several improvements in her health, including more energy, better speech and no more numbness in her hands. She said MS patients are frustrated they can’t get the treatment in Canada.
“We’re not asking for much,” Ms. Gordon said. “Treat us and study us at least.”
Ms. Gordon is part of an exodus to such countries as the United States, Poland, India and Bulgaria that has exposed serious shortcomings in the Canadian medical system, according to the country’s top medical journal.
A lack of funding and co-ordination between researchers has left a void in which special-interest groups drive the agenda and prevent Canada from turning new ideas into concrete research that could lead to scientific breakthroughs, says an editorial published Monday in the Canadian Medical Association Journal. The country needs a more centralized hub to decide how research dollars are allocated, and patients should have a voice in those decisions, said Paul Hébert, the journal’s editor-in-chief and co-author of the editorial.
Dr. Zamboni’s theory has been the subject of much controversy since it was first publicized last year. The procedure is based on a theory that blocked veins lead to an iron buildup in the brain, which causes MS symptoms. It has been performed on a relatively small number of patients like Ms. Gordon with some success.
Patients across the country have been lobbying for immediate access to the venous angioplasty procedure, designed to open up the blocked veins and treat the condition, known as chronic cerebrospinal venous insufficiency. But since the treatment hasn’t been well studied, Canadian governments aren’t allowing access to it, pushing patients to spend thousands of dollars to have the procedure in other countries. Although research funding to explore Dr. Zamboni’s theory has recently started flowing in Canada, it could take years to generate conclusive results.
The CMAJ editorial argues that Canada must create a comprehensive system to “initiate clinical studies in response to promising therapeutic discoveries.” The new system would include investing in areas of research where Canada already excels, as well as building networks to help connect communities so they can do better research.
It would help ensure that decisions are based on reason and science, not desperation. But it could also foster important breakthroughs on a timely basis and allow patients to participate in trials to see if they benefit from the new treatment.
Instead, a growing proportion of health-research funding decisions are made by politicians influenced by lobby groups or others with a vested interest. It’s a dangerous path, Dr. Hébert said, because those decisions could take away research dollars from more important – but not necessarily politically attractive – areas of research. It also establishes an expectation for a similar response each time a promising new treatment or procedure emerges, the editorial says.
“If you open the floodgate,” Dr. Hébert said, “it will never stop.”
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