CCSVI brings with it a new public health care arithmetic. According to the Canadian Institute for Health Information, the estimated annual total cost of MS to the Canadian economy is $1 billion, more than that devoted to all infectious diseases combined. The overall direct costs of caring for and treating Canadians with MS is currently estimated by CIHI at $139 million annually, with drugs accounting for almost half of that. Meanwhile, the cost of a scan and angioplasty in a public hospital setting, according to McDonald, runs $1,500.
As dramatic as the economic reality is, the true cost of the disease has nothing to do with money, says Dr. Ian Rodgers of McMaster University, who’s coordinating a major CCSVI research project testing Zamboni’s findings. “The impact on quality of life is so catastrophic, there’s a very high emotional component to this. If there is a glimmer of hope that reversing these strictures in veins gives definitive improvement to people with MS, then absolutely it’s a necessary intervention.”
And that’s what is galvanizing a new tribe of warrior “MSers,” as they call themselves, who’ve united online—educating themselves on “Doppler scans” and sharing news and personal stories on ThisisMS.com. Facebook support groups are proliferating—forwarding online petitions and posting videos of their meeting: within hours of the Vancouver gathering where Godley broke his big news, a video of it was posted on UStream.com.
The power of the Internet and social media has changed the patient-physician dynamic, says Godley. “It’s put physicians who think that they can be guardians of our care in the place that they belong, and they need to become humbled.” An emboldened self-diagnosing patient has emerged. Sandra Birrell, a 51-year-old Victoria MS patient who organized the Godley meeting, represents the new patient-as-clinician mindset: “We’ve almost moved beyond our neurologists now to say we need to get our veins addressed,” she says, arguing that her CCSVI and her MS are separate conditions.
Heroes have emerged, like Dr. Marian Simka, a vascular specialist who operates a clinic in Katowice, Poland, where’s there’s a two-year wait list. Since the clinic’s opening last October, doctors have performed 224 procedures, 18 of them on Canadians. Canadian doctors have visited, too, says Simka, who travelled to Vancouver this year to meet with Godley at False Creek.
These people are on a pilgrimage, in search of healing, literally. One, a man in his late forties from southern Ontario, travelled to Poland last month. It was his last hope. In June 2009, he was diagnosed with primary progressive MS, the most aggressive form of the disease, for which there are no drugs. “The neurologist gave me nothing—zero talk of exercise or diet,” he says. “I felt they did everything but give me the plans for a wheelchair ramp for my house.” He was hesitant to travel across the world to get an experimental treatment, given that he could walk and even do push-ups. The risk of stent migration worried him: “But the wheelchair was more of a certainty.”
After the one-hour procedure, he felt clearheaded for the first time in months. “My wife couldn’t believe my colour,” he says. “It’s like a new life. I’m sleeping through the night; my leg is good. My balance is better. When I get up I feel great.” He says he doesn’t know how he’ll feel in six months. But the hope the liberation surgery has given him has been life-changing: “From getting diagnosed and the devastation of that, this was the best thing that has ever happened to me because now I’ve been given a gift.”
A visit to Simka’s clinic last month turned 45-year-old Calgary realtor Ginger MacQueen, diagnosed with MS in 2000, into a CCSVI militant. When she first heard about the Zamboni research, she was leery, asking her husband to scan chat rooms. Spending hours every day, seven days a week, reading blogs and medical research, turned her into a believer. MacQueen’s account of her surgery, which she describes on her “I hate MS” blog, sounds like an infomercial. “I’m walking now; all the numbness and tickling is gone from my body; the spasms are gone; I’m not limping, my foot drag is gone. I’ve got so much more energy.”
The day after her surgery, she and her husband walked for hours: “Usually I would have to stop every 10 to 15 minutes but I kept motoring.” Yet it was not her own experience but that of a 29-year-old man from Holland that had the greatest impact. “He arrived with impaired speech and his mouth looked like he’d had a stroke,” she says. A few nights later at dinner, he was a changed man: no slur, no facial disfiguration and he was talking about moving out of his parents’ house. “That’s when I got really furious,” she says. “To me it’s manslaughter if you don’t do something to help.”
Last week, MacQueen organized a protest outside of the MS clinic at Calgary’s Foothills hospital, agitating for CCSVI treatment to be available in Canada. Birrell, who plans on having the surgery, shares the sentiment: “It’s my first choice because I want to get follow-up care.” That’s also the hope of Dion Oxford, a 40-year-old MS patient who was diagnosed with CCSVI this week. Finding out he was eligible for surgery was an emotional moment, he says: “I went from inability to stop smiling to inability to stop sobbing.” Oxford, the director of Toronto’s Gateway Men’s Shelter, was diagnosed with relapsing-remitting MS 13 years ago. Last month, he was re-diagnosed with progressive MS. His decision to have CCSVI testing forced him to confront the new commercialization of the MS market: it cost US$4,500 in Buffalo, $2,700 at False Creek and $1,250 in Montreal. He ended up going to Barrie, where he was tested for free by McDonald, who is working to set up a CCSVI trial with Zamboni. Oxford hopes he will be a part of that, but research funding is required. To that end, he plans to donate the proceeds from his annual 190-km bike-ride MS fundraiser. He’s been doing it for six years and has raised more than $60,000 for the MS Society. This year, for the first time, he’ll ride for himself.
