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This article was published 7/1/2011 (3551 days ago), so information in it may no longer be current.
Tens of thousands of dollars have flowed from multiple sclerosis patients to a Winnipeg-based company that is coming under fire for "pressuring'' patients to fly to India for the headline-grabbing "liberation" procedure.
CCSVI Clinic, which operates out of an office in Fort Garry, has now come to the attention of Health Minister Theresa Oswald, who said she would forward concerns to the College of Physicians and Surgeons of Manitoba.
Until early December, CCSVI Clinic, which calls itself a non-profit group of physicians and researchers, had been acting as the Winnipeg referral agency for Mobile Life Screening, a Fargo, N.D., ultrasound clinic.
As part of that referral service, at least 100 patients were tested for chronic cerebrospinal venous insufficiency (CCSVI) -- blocked veins in the head and neck, controversially linked to MS.
In mid-October, Winnipeg journalist and former CBC broadcaster Ingeborg Boyens became one of the first patients to get tested at Mobile Life Screening through CCSVI Clinic. She said she knew nothing about CCSVI Clinic other than its Kenaston Boulevard post office box where she sent her payment. Boyens said she was surprised when Randy Spielvogel, Mobile Life Screening's owner, asked her how much she paid. Spielvogel seemed "uncomfortable with how costs seemed to be escalated," she said.
Boyens said her scans returned only "borderline" results for blocked veins. But in the weeks that followed, she received multiple letters and a phone call from CCSVI Clinic representatives urging her to travel to India for the vein-opening procedure, which she says she was never interested in receiving.
"Alarm bells just went up when they started getting on my case," Boyens said. "(I thought)... 'So it's medical tourism I've walked into.' I went for a scan; I didn't go to check out if I wanted to go to India."
A spokesman for CCSVI Clinic said the company is a legitimate non-profit connecting patients with a new study to investigate treatment protocols for CCSVI. MS patients cannot currently be scanned or treated for CCSVI in Canada, and many travel to clinics across the United States and the world to have their veins opened by a simple angioplasty procedure.
Spielvogel, who ended business ties with CCSVI Clinic in early December, said he worried when he discovered it was charging clients at least $200 more than his base rate. "I wasn't comfortable with that. I thought, 'That's gouging people.' That was one of my big concerns about it."
That split, and reports of pressure on other patients to travel to India for treatment, pushed MS patients to question seemingly contradictory statements on CCSVI Clinic's website.
"Who are they? Where are they? You can't pin them down," said Anna Seaman, an MS patient from Selkirk who questioned CCSVI Clinic representatives in email and telephone conversations.
"For (patients) that are looking for help, they're saying, 'Wow, this is something,' and they could get caught up very easily."
But caught up in what? The group describes itself as a non-profit organization with offices in Winnipeg, Toronto and Atlanta, Ga., "established by medical researchers and professionals to investigate" the hotly debated link between CCSVI and MS. "Medical tourism is not the intention of our business," its website states.
But other statements on the website urge clients to discover a "continuum of service (that) sets us apart from all other medical tourism businesses," and a disclaimer states that "CCSVI Clinic is in the business of facilitating travel and hospitality only." The site offers a $15,000 medical travel package to India that includes physician consultations and followups.
In now-deleted website and Facebook posts, the clinic stated its physicians met with and influenced, Oswald. But neither the Manitoba health minister's office nor the diagnostic imaging departments at Health Sciences Centre have any knowledge of CCSVI Clinic or of two Winnipeg doctors said to be connected to the group.
"We do pretty active ongoing research with various members of the CCSVI community. This is the first time that (I've heard of this group)," Oswald said, explaining why she was asking the College of Physicians and Surgeons to look into the clinic. "There are likely a number of legislative umbrellas under which questions (about the clinic) would be asked."
CCSVI Clinic's only publicly identified physicians are doctors at the Noble Hospital in Pune, India, the primary site of what a spokesman said was a proposed research study of patients who are given a longer followup regimen after the vein-opening treatment.
Doug Broeska, CCSVI Clinic's spokesman, said there are local physicians working with the group. Asked if reports of meetings with Oswald were accurate, he replied: "If they're willing to come out and say who they are, then it will be accurate... Because of the controversial nature of CCSVI, there's physicians that don't want to be mentioned at all in the media."
Broeska, who identified himself as a medical researcher on a part-time contract with CCSVI Clinic's owners, said CCSVI Clinic cut ties with Spielvogel after the latter charged too much money for scans. CCSVI Clinic now partners with the Kidney and Hypertension Centre in Grand Forks, N.D., for scans that cost $550. He acknowledged there was confusion about CCSVI Clinic's operations.
"Once the (study proposal) is published... I don't think there will be a lot of confusion after that," he said. "Everything will be under a study. It's not meant (as) tourism anymore, if it ever was... It's a study that happens to be subsidized by the owners of the business to try to keep patients safe."
Duncan Thornton, co-founder of grassroots group CCSVI Manitoba, said it's important for MS patients to do their homework on treatment options.
"(Ask) are you getting a 'sell?' There are tens of thousands of people with MS in Canada alone looking for this. Qualified clinics and physicians don't need to work hard to get patients."
Melissa Martin reports and opines for the Winnipeg Free Press.
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