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Multiple sclerosis patients navigate the minefield of for-profit care

Paolo Zamboni's research posits that multiple sclerosis is a vascular disorder whose symptoms can be treated with operations like this one to widen the blood vessels.

John Lehmann/The Globe and Mail

When word spread that an Italian doctor had a treatment that miraculously seemed to relieve the suffering caused by multiple sclerosis, patients around the world saw hope.

Others saw a business opportunity.

Paolo Zamboni published a paper in 2008 saying that MS is not an autoimmune disease, as most experts believe, but a vascular condition caused by blocked or malformed neck veins, a condition he called chronic cerebrospinal venous insufficiency.

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A year later, he presented research to support his claim that symptoms could be alleviated almost instantly with venous angioplasty, surgery to widen the veins and "liberate" the flow of blood from the brain.

Desperate for relief, patients clamoured for the treatment. Canada took a go-slow approach, despite its high rates of MS, while other nations capitalized on the overwhelming demand.

Before long, clinics and medical-tourism companies in the United States and as far away as Poland, India, Costa Rica and Bulgaria popped up, aggressively advertising the procedure.

Prices vary, from as little as $10,000 to as much as $20,000 for something that in Ontario would cost as little as $6,300, according to the Ministry of Health and Long-Term Care.

But money isn't the big problem, according to some observers.

"The fact that patients are being charged for a procedure that is not yet validated, that it involves serious risks and that there isn't systematic collection of information about the safety and efficacy raises major red flags," said Jonathan Kimmelman, associate professor of biomedical ethics at McGill University.

Katherine Knox, director of the MS clinic at Saskatoon City Hospital, agrees: "People shop all the time on the Internet for all kinds of things that aren't evidence-based," said Dr. Knox, who is taking part in a major research study on CCSVI.

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"This is a problem in the sense that perhaps vulnerable people are being persuaded to seek treatments that aren't proven, but when you talk to patients they believe they have a right to do that."

Passport Medical, a Vancouver-based medical tourism company, calls itself "world leaders in CCSVI liberation treatment" on its website and promotes such "companion procedures" as laser eye surgery, breast augmentation and liposuction. This week on Twitter, Fantastic International of Marietta, Ga., advertised MS treatment packages starting at $9,995 (U.S.).

With the scientific jury still out, most travel companies and clinics rely on satisfied customers to attract new business.

"One man arrived in a wheelchair and his left arm was hanging limp, and after the treatment I saw him running towards me with his arms in the air," reads a testimonial on Passport Medical's site. "No, I am not a born-again Christian, and this is not faith healing."

But now, a growing number of medical experts - including Dr. Zamboni himself - say the service should be halted until clearer evidence emerges.

"I think this is not right," he said in a telephone interview from his office at the University of Ferrara. "It's unethical."

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Not only are the risks still unclear, Dr. Zamboni explained, the long voyage many patients must take can make things worse because it increases the danger of blood clots and other complications.

"When you perform a procedure on veins," he said, "to have air travel shortly after the procedure, I think, is dangerous."

In response, clinics argue that they are meeting patient demands and potentially improving the quality of their lives.

"We saw that there was a need in the community for patients to have this procedure done," said Kelly Faillo, physician assistant at the Advanced Imaging and Interventional Institute in Clearwater, Fla.

Ms. Faillo said the clinic has been treating four to eight patients a week since last October. Most are from Canada, she added, and many have reported at least some improvement.

Few centres that perform the procedure are taking part in clinical trials, which would involve carefully evaluating patients before and after treatment, monitoring side effects and helping science determine whether the approach really works.

Most are independent agencies, often operating without clear oversight. Many, for instance, regularly use stents, tubes used to keep veins from collapsing again after surgery. But in his research, Dr. Zamboni has cautioned against this technique because stents - designed for use in arteries - are not available in the proper size or length, which could lead to complications.

An Ontario man's death became one of at least two linked to the procedure after a blood clot formed around a stent inserted in his neck in Costa Rica.

A patient in California required emergency surgery after a stent broke free and floated into his heart, one of the reasons Stanford University shut down a treatment program led by an associate of Dr. Zamboni.

Why offer something that carries such risk?

"There can be a lot of conflicts of interest in this issue," said Anthony Traboulsee, medical director of the University of British Columbia's MS clinic. "Some of the private groups that are promoting getting treatments done in Bulgaria, Poland, India, Mexico, all these places, these folks are making a ton of money."

Others, however, may genuinely believe they are helping patients, added Dr. Traboulsee, who is collaborating with Dr. Knox in Saskatoon in the study to determine whether vein abnormalities really exist in MS patients.

For example, David Hubbard, a well-known neurologist in San Diego, broke ranks with colleagues after performing the procedure on his son, who has MS. He now offers it to others and is collecting results as part of a clinical study.

"It's easy for the academics to say, 'Let's wait until all the research is done,' but it's just not fair to the patients," Dr. Hubbard said in a recent interview. "Patients are not willing to wait."

Ian MacLeod is one patient who's waiting - for the time being. The 61-year-old resident of Richmond, B.C., is considering a trip to the United States this summer to have the treatment. Diagnosed in 1997, he was a corporate lawyer heavily involved in the community. Now, he is retired, managing the difficulty he has walking, the bladder problems that wake him up throughout the night, and other disease symptoms.

His family is urging him to try the new treatment, but he has many questions.

"I'm not hugely convinced that it's a cure-all. In fact, it's not. But it seems to help some people, and whether that is mind over matter or whether it's real, I'm not sure," he said. "Maybe I'm in the situation where I'm not desperate enough yet."

Meanwhile, Mr. MacLeod will watch as the debate unfolds.

"I don't believe in conspiracies and I often don't believe in miracles," he said. "But I guess sometimes they happen."

Next: The pros and cons of deploying social media in the battle to bring the Zamboni treatment to Canada.

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About the Author

Carly Weeks has been a journalist with The Globe and Mail since 2007.  She has reported on everything from federal politics to the high levels of sodium in the Canadian diet. More

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