Hundreds of people with multiple sclerosis travel thousands of kilometres and shell out even more money for controversial out-of-country surgery. They return home to government promises of follow-up care.
But, in the end, many feel abandoned by a health system skeptical of the procedure.
Betty Taylor counts herself among them. She had the liberation procedure done in Bulgaria in June. Since then, she's had two ultrasounds done, one at an MS clinic in Barrie, Ont., and another in Arizona, that showed a blood clot, which she would like treated in Alberta, her home province. The doctors there have told her they can't do anything about it. Alberta never qualified what follow-up care for this procedure entails, and there are no national guidelines. General practitioners, emergency doctors and the government referred her back to her neurologist, but he has done little to address her health issues, she said.
"When I'm just turned away and having doors shut in my face left, right and centre by doctors, it's very frustrating," said Ms. Taylor, who lives in Sherwood Park, Alta. "You can transplant hearts. You can put people on the moon. I kind of find it hard to believe that nobody can do anything."
Doctors, however, say their hands are tied: Many have reservations about the experimental therapy advanced by Italian doctor Paolo Zamboni, which is not approved in Canada and has yet to undergo rigorous clinical trials.
"Medical regulatory authorities do not set clinical standards of care, but rely on medical experts to do this after scientific and ethically approved research," Fleur-Ange Lefebvre, executive director and chief executive officer of the Federation of Medical Regulatory Authorities of Canada, said in an e-mail. "As this is a novel therapy, there are no established standards for follow-up or routine care."
The ambiguity around follow-up care and the almost three dozen complaints from patients prompted one federal politician to write this week to the heads of the country's colleges of physicians and surgeons asking them to address the issue with their members.
Liberal health critic Ujjal Dosanjh asked the colleges what postsurgery medical care should involve so MS patients know what action to take if they are denied adequate treatment. "It can't continue this way for any length of time. If we don't have a response from the colleges within the next short while saying to us that they will actually be talking to their members and ensuring that every patient is provided after-care no matter where they've actually had the procedure done, we will then think of what the next steps ought to be," Mr. Dosanjh said.
The MS Society of Canada has also received anecdotal reports of some patients encountering difficulty receiving treatment. It has urged governments to ensure that no Canadian is denied posttreatment care.
Ever since it was introduced about a year ago, liberation therapy has divided doctors and their patients. The treatment is based on an unproven hypothesis that some cases of MS are vascular disorders caused by vein blockages that lead to a buildup of iron in the brain, rather than an autoimmune disease, and can be treated by a simple surgical procedure - angioplasty. It remains unclear whether blocked veins cause the disease or are a symptom.
Physicians contend that while they have an ethical responsibility to help patients who suffer complications from procedures they underwent in other countries, they also advise Canadians to wait for the results of seven research projects looking to see if blocked veins are prevalent in MS patients. They especially urge caution since an Ontario man died in October from complications after treatment at a Costa Rican clinic. Others have returned only to see their veins become blocked again, and need further medical care.
Trevor Theman, registrar at the College of Physicians and Surgeons of Alberta, defended doctors, saying neurologists are keeping a close eye on patients who have had liberation therapy. He said there is a disconnect as far as what patients want physicians to do and what doctors believe is morally and ethically correct and safe.
"The physician is in a very difficult situation, and to characterize that as refusal to see the patient or to provide follow-up is, I think, unfair to the neurologists who are doing their best to manage a very difficult situation," Dr. Theman said. "They should use their best clinical judgment and they have to act in the best interest of their patients."
An estimated 55,000 to 75,000 Canadians have multiple sclerosis, and every day three more people in Canada are diagnosed with the disease. Canada has one of the world's highest MS rates.
MS is the most common neurological disease affecting young adults in Canada.
Women are more than three times as likely as men to develop MS.
MS can cause loss of balance, heat sensitivity, impaired speech, extreme fatigue, double vision and paralysis. The disease is characterized by lesions on the brain, a result of the breakdown of myelin, the protective covering wrapped around the nerves of the central nervous system.
The most common treatment for MS is corticosteroids.
MS is widely believed to be an autoimmune disorder, but the cause or causes are unknown.
Several provinces are studying so-called liberation therapy for MS patients. Saskatchewan has indicated that it could start clinical trials soon. Yukon plans to participate. Alberta recently committed $1-million to track at least 500 Albertans, including those who have travelled for the procedure, over the next three years. Newfoundland, too, will study patients who had the therapy abroad.
Source: MS Society of Canada, Caroline Alphonso