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MS patients eager for a breakthrough surgery are facing more resistance than they expected

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Pablo Martinez Monsivais / AP

Like tens of thousands of Canadians afflicted with multiple sclerosis, Rebecca Cooney greeted Paulo Zamboni’s much-publicized research late last year with excitement. Zamboni, an Italian professor of medicine and a former vascular surgeon, brought a fresh lens to a disease long diagnosed as an incurable neurological condition: he found that all 65 MS patients in his study had stenoses, or blockages, in veins in their neck or thorax, a condition he dubbed chronic cerebro-spinal venous insufficiency, or CCSVI. After their blockages were cleared with a basic venous angioplasty, many found their symptoms improved; others saw the degenerative disease’s progress halt altogether. Zamboni’s findings were hailed as a potential breakthrough in MS research, a field focused on drug trials. Proof that the disease had a vascular component, a theory bandied for a century, was viewed as a potential game-changer offering rare hope for MS patients.

One of them was Cooney, a 42-year-old Ottawa resident diagnosed 12 years ago. Since then, crippling fatigue forced her to quit her federal government job as an international financial underwriter. But when she set out late last year to find out if the treatment could work for her, she discovered her M.B.A. and years of Byzantine deal-making were no preparation for the Kafkaesque maze before her. Like many others, Cooney learned the extent to which MS has been colonized as neurologists’ exclusive turf. When she visited her neurologist for a referral to a vascular specialist last November, he refused. Zamboni’s work intrigued him, he told her, but lacked scientific rigour and has not been duplicated. His resistance was echoed by the neurological community and the MS Society of Canada, which called for clinical trials, which can take years. “He told me: ‘I would be a laughingstock if I referred you,’ ” Cooney says.

Undeterred, she travelled to a Detroit hospital in February, paying US$3,000 for CCSVI imaging based on Zamboni’s complex protocol. Cooney returned to her neurologist with scans showing severe stenosis in two jugular veins. Still, he refused to give her a referral. Her GP was more helpful, calling vascular specialists—all of whom said that because Cooney has MS, she needed a neurologist’s referral. Finally, she emailed a cardiologist who had treated a friend. “I told him I had headaches, numbness in my left arm, pain in my chest, and severe stenoses of my jugular veins—all of which is true,” she says. She didn’t mention she had MS or that the reason she wanted to see him was so that he could track her progress after CCSVI treatment, which she received in the U.S. last week. He agreed to see her next month. Cooney regrets the omission, she says: “I want to be able to tell my doctor everything.”

Of the CCSVI procedure itself, she says: “I’m not expecting miracles.” But four days later, she reports the ringing in one ear has vanished, as have her crushing headaches. She’s also able to bend her right leg getting out of bed in the morning and has renewed strength in her hands. When asked where she went for treatment, she refuses to say for fear the clinic will be shut down.

She’s not being paranoid. CCSVI resistance mobilized quickly. Deborah Thorarinson of Calgary found herself in a twilight zone late last year when she called every private clinic in Calgary and Edmonton on behalf of her husband to see if they offered CCSVI imaging. All said no, using wording that was eerily similar. “It was like they were reading from a script,” she says. Her husband travelled to Vancouver’s False Creek Heathcare Centre, where he learned he had severe stenosis. In April, Mark Godley, False Creek’s medical director, told Maclean’s the clinic would start offering CCSVI treatment starting this month, a statement he was forced to amend after running into bureaucracy. (He now says it will be offered in a clinical trial within the next few months.)

Last month, Montreal’s Westmount Square Medical Imaging, the only other private clinic in Canada offering CCSVI scans to MS patients, was ordered to stop by the Collège des médecins du Québec, the body governing the province’s medical doctors. Jeffrey Chankowsky, a neuroradiologist and McGill University professor, was stunned, he says. He’d scanned 125 people willing to pay $450 and had a waiting list into June. In a letter, the Collège said CCSVI has yet to be proven “a medical fact,” even though 47 countries now recognize CCSVI as a medical condition. The letter also noted that neither the Quebec Neurological Society nor the association of Radiologists in Quebec had signed off on it. “It’s the first time we’ve ever been told we couldn’t scan a body part,” Chankowsky says. The clinic routinely provides imaging, such as a virtual colonography, for conditions with no medical indication. “Nobody is stopping us from doing that. But somebody’s stopping MS patients from screening their necks.” Yet someone without MS can have CCSVI screening, he notes.

The medical double standard extends to venous angioplasty, a procedure done in Canadian hospitals for 25 years. (The accepted treatment for idiopathic intracranial hypertension, for example, is a venous angioplasty and stenting.) Yet when treating MS patients’ blocked veins, venous angioplasty has been deemed “experimental” by the medical establishment and by provincial governments that refuse to cover CCSVI scans or treatment until more research is done.

Sandy McDonald, a vascular surgeon in Barrie, Ont., currently conducting a CCSVI imaging clinical trial, performed six venous angioplasties on MS patients pro bono this year and witnesed improvements. Venous abnormalities in any other part of the body are treated, he says. “Why should the neck veins of MS patients be any different?”

That question is being asked at a parliamentary subcommittee investigating CCSVI that met for the second time this week. It’s a forum that pits the MS establishment’s wait-and-see clinical-trial approach against MS patients who don’t have the luxury of time. In early May, Janet Salloum testified on behalf of her 32-year-old sister Michelle, a mother of three who has been immobilized since her MS diagnosis 18 months ago: “It’s like watching someone drown while people test flotation devices,” she said. McDonald, who receives 300 calls a day from MS patients wanting to be scanned, also appeared, estimating that scans and treatment cost some $1,500, less than the cost of a month’s prescription for many MS drugs. Cooney also testified, as a co-founder of msliberation.ca, a group pushing for CCSVI testing and treatment in Canada.

Progress is being made. Detroit-based physicist Mark Haacke has worked with clinics and hospitals across Canada setting up CCSVI imaging based on Zamboni’s protocol. He expects five sites to offer it by the end of June. Haacke believes a CCSVI-MS link exists but wants the conditions to be seen as separate. “We need to stop saying CCSVI is related to the etiology of MS, but rather point out that there is another disease called CCSVI and many MS patients have it.” Double-blind research studies are important, he says, but shouldn’t prevent doctors from treating MS patients with CCSVI on compassionate grounds: “Not to deal with a clear vascular problem is a violation of the Hippocratic oath and is unconscionable.” Last week, Haacke filed paperwork to create the International Society for Neuro-Vascular Disease, a hybrid that will focus on MS and other blood-brain barrier diseases such as ALS and Alzheimer’s. It’s a beginning. Once specialists can let go with their preoccupation with protecting turf, who knows what medical miracles await.

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