In Canada, people with MS protest at Parliament for controversial treatment to be available

From The Globe and Mail in Toronto:

OTTAWA — Multiple sclerosis patients have become an increasingly organized and angry force as they agitate to have a controversial new treatment known as liberation therapy made available in Canada.

They have started Facebook pages, organized rallies, signed petitions, and are threatening legal action in a bid to force Health Canada to expedite approval of the therapy.

Their anger was on display Sept. 20 in Ottawa, when hundreds of people were expected on Parliament Hill for a protest to mark the opening of Parliament.

Many patients are furious at the government for heeding the recommendation of the panel assembled by the Canadian Institutes of Health Research, which advised that clinical trials of liberation therapy be delayed until more evidence is gathered.

But the anger doesn’t stop there. It is directed at the Multiple Sclerosis Society of Canada, which is funding seven preliminary research studies that will be used to determine if the clinical trials are warranted. And it is directed at MS doctors who talk skeptically about the procedure and the science behind it.

“I had an appointment with my neurologist on Sept. 2 and I could not bring myself to go because he doesn’t believe in this,” said Teresa Woo of McLennan, Alta., who has drafted an online petition that has gathered nearly 17,000 signatures. “I am so angry with him for being so closed-minded.”

Government officials say physicians report feeling threatened by the increasing militancy of their patients around liberation therapy. The doctors are also frustrated at having to debunk what they believe to be an unproven theory promulgated, in large part, by news outlets.

“Why are doctors also not believers? Perhaps that’s because we are doctors and we do understand the science, or in this case, the non-science,” one of them wrote last week in refusing an interview. The media “have created a nightmare for our patients, clinics, the MS Society, and the government …”

Every MS patient is asking about liberation therapy, said Anthony Traboulsee, a neurologist at the University of British Columbia Hospital who is conducting one of seven studies funded by the MS Society to test the theory of Italian doctor Paolo Zamboni (pictured) that MS is related to a blockage of blood flow from the brain.

Most people with MS understand the need to do more research before the treatment is tested through clinical trials, Dr. Traboulsee said. “But this specific issue,” he said, “has created a very vocal and somewhat angry group that aren’t satisfied with that approach.”

Andrew Katz of Ottawa, who is organizing Monday’s rally, said the Internet has been a major factor in rousing MS patients to the cause.

Until liberation therapy, “what you had was lots of Canadians, up to 75,000 Canadians, being willing to go status quo which was immunosuppressant drugs,” said Mr. Katz. “But what else was there? There was nothing else out there.”

In fact, experts like Dr. Traboulsee say other treatments have shown real promise in recent years.

But liberation therapy seems so simple – it involves angioplasty to open the veins leading from the brain. And the believers point to the television for proof that it works.

“An Edmonton nurse couldn’t pour a cup of coffee, she couldn’t pick up the cup of coffee,” Ms. Woo said. “She had the procedure done, they showed this on the news, she picked up the coffee pot, poured herself two cups of coffee, picked them up and carried them over to the table. Now, what more proof do you need?”

Ashton Embry, the president and research director of a lobby group for multiple sclerosis patients called Direct-MS, wrote a critique of the report of the CIHR panel that accused the experts of being “incredibly biased” and of having multiple ties to the drug industry.

That critique, which was widely circulated within the MS community, also ripped apart the report’s finding that the efficacy and safety of liberation therapy were largely unknown. Mr. Embry argued that the link between Mr. Zamboni’s theory – called chronic cerebrospinal venous insufficiency (CCSVI) – is proven and an immediate clinical trial is critical.

Many experts, on the other hand, argue that there has been no scientific proof that Dr. Zamboni is right. They say anecdotes from people who have had the treatment are not enough to subject patients to a procedure that carries some risk.

Which just compounds the anger.

Dawn Shea organized a protest at the local MS Society offices in St. Catharines, Ont., on Friday.

The society takes in millions of dollars in donations, she said. “Should they not be using it for this?” she asked.

In fact, the MS Society recently set aside $1-million to fund the clinical trials, if and when the research says liberation therapy is safe.

“People have become mobilized in a way that is unprecedented and I say that’s a good thing,” said Yves Savoie, the society’s president.

But “we want to make sure the science is good because that’s what people with MS are owed,” he said. “They are owed the definitive answers.”