WINNIPEG, Canada — Tens of thousands of dollars have flowed from multiple sclerosis patients to a Winnipeg-based company that is now coming under fire for "pressuring" patients to fly to India for the headline-grabbing procedure known as liberation therapy.
And the CCSVI Clinic has now come to the attention of Manitoba Health Minister Theresa Oswald, who had said she will be forwarding such concerns to the College of Physicians and Surgeons of Manitoba.
The CCSVI Clinic — which calls itself a non-profit group of physicians and researchers — recently had been acting as the Winnipeg-based referral agency for Mobile Life Screening, an ultrasound clinic in Fargo, North Dakota.
As part of that referral service, at least 100 patients were tested for chronic cerebrospinal venous insuffiency, or blocked veins in the head and neck that have been controversially linked to MS.
In mid-October, Winnipeg journalist and former CBC broadcaster Ingeborg Boyens was one of the first patients to get tested at Mobile Life Screening through the CCSVI Clinic.
She said she knew nothing about the CCSVI Clinic, other than its post-office box where she sent her payment.
So Boyens said she was surprised when Randy Spielvogel, owner of Mobile Life Screening, asked her how much she paid.
Spielvogel appeared to be "uncomfortable with how costs seemed to be escalated," she said.
According to Boyens, her scans returned only "borderline" results for blocked veins. But in the weeks that followed, Boyens received multiple letters and a phone call from CCSVI Clinic representatives, urging her to travel to India for the vein-opening procedure that she said she was never interested in receiving.
"Alarm bells just went up when they started getting on my case," said Boyens. "I went for a scan. I didn't go to check out if I wanted to go to India."
A CCSVI Clinic spokesman said the company is a legitimate, non-profit agency connecting patients with a new study to investigate treatment protocols.
Liberation therapy — similar to a routine angioplasty — has not been approved by Health Canada for use in this country; many have opted to travel to clinics in such places as the U.S., Mexico, Poland and Brazil to undergo the treatment.
Spielvogel, who said he ended his business ties with the CCSVI Clinic in early December, said he worried when he discovered the group was charging clients at least $200 more than his base rate.
"I wasn't comfortable with that," he said. "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 the CCSVI Clinic's website.
"Who are they? Where are they? You can't pin them down," noted Anna Seaman, an MS patient who said she questioned clinic representatives both through email and telephone conversations. "(Patients) could get caught up very easily."
The CCSVI Clinic describes itself a non-profit organization with offices in Winnipeg, Toronto and Atlanta that was "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 site 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 follow-ups.
In now-deleted website and Facebook posts, the group stated its physicians met with — and influenced — Manitoba's health minister.
But neither Oswald's office nor the diagnostic imaging departments at Winnipeg Health Sciences Centre claim any knowledge of the clinic.
"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. "There are likely a number of legislative umbrellas under which questions . . . would be asked."
The CCSVI Clinic's only publicly identified physicians are doctors at the Noble Hospital in Pune, India, which is the primary site of what a spokesman said was a proposed research study into patients who are given a longer followup regimen after the vein-opening treatment.
CCSVI Clinic spokesman Doug Broeska said there are also 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 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 the clinic cut ties with Spielvogel after he charged too much money for the scans.
CCSVI Clinic now partners with the Kidney and Hypertension Centre in Grand Forks, North Dakota, for scans that cost $550.
He acknowledged there was confusion about the CCSVI Clinic's operations.
"Once the (study proposal) is published . . . I don't think there will be a lot of confusion after that," Broeska 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."
Sunday, January 9, 2011
Clinic in Winnipeg, Canada, accused of pressuring people with MS into seeking overseas "liberation therapy"
From The Winnipeg Free Press:
Posted by BA Haller at 11:05 AM