Two provinces are leading the push for national guidelines to end the ambiguity around follow-up care for Canadians with multiple sclerosis who travel outside the country for a controversial new medical procedure.
In Alberta, the College of Physicians and Surgeons plans to publish in the next few days guidelines on monitoring patients for complications from the procedure known as liberation therapy.
And in Ontario, the McGuinty government is setting up a panel of medical experts to establish standards of care for patients who travel as far as South America and Europe in search of relief from the nerve-wasting disease.
Medical experts and advocates for MS patients say they expect the standards Ontario is developing to be adopted across the country. Canada currently has no national guidelines on how to monitor patients who have had the liberation treatment in other countries, because the procedure is not approved here and it has yet to undergo rigorous clinical trials.
People returning to Canada often don't know exactly what kind of treatment they received, and their doctors don't know what they should do to monitor them for complications, said Anthony Traboulsee, medical director of the University of British Columbia's MS Clinic and president of the Canadian Network of Multiple Sclerosis Clinics.
"Because this is not standard care, there is not a standard way to deal with it," he said in an interview.
Doctors are well aware that they have a responsibility to provide follow-up care to patients. But many of them are skeptical of the therapeutic benefits of the treatment, which is based on an unproven hypothesis advanced by Italian doctor Paolo Zamboni.
Yves Savoie, president of the MS Society of Canada, said people with the disease are frustrated about the lack of guidelines. He said Ontario's initiative to develop standards for the best follow-up care will fill a much-needed gap.
"It will fill a void, not only for Ontario but for other parts of the country," Mr. Savoie said.
Ever since it was introduced about a year ago, liberation therapy has divided doctors and their patients. The treatment is highly contentious because it disputes the long-held view that MS is an autoimmune disease. Dr. Zamboni believes MS patients have damage in blood vessels in their necks caused by too much iron. He has developed a procedure to clear the blockage, which involves opening veins in the neck and spinal cord. He believes this procedure combats symptoms of MS, which can cause loss of balance, impaired speech, extreme fatigue and paralysis.
Complications can develop with stents used to clear the blockages, which are designed for arteries and not for neck veins. An Ontario man died last October from complications after treatment at a Costa Rican clinic.
Dr. Traboulsee said doctors have developed ad hoc protocols for monitoring patients. In British Columbia, for example, every patient who has received liberation therapy has a neck X-ray to determine the location of the stent.
But he said it will be enormously helpful to doctors to provide them with guidance on how often to monitor patients to ensure they are not developing blood clots, which could be fatal because they would cut off blood flow to the brain.
In Alberta, the guidelines will tell doctors what to do if patients are on blood thinners - a common remedy to help prevent clotting - and what imaging studies they should do to monitor any blockages in the stent, said Trevor Theman, registrar at the College of Physicians.
The Ontario government is also calling on Ottawa to create a national database of MS patients that would contain information on symptoms and what treatments are most effective. The data base would be a useful research tool for both patients and doctors, Mr. Savoie said.
But the province is stopping short of funding a study of the liberation therapy treatment.