In Canada alternative therapies are discussed with the "MS team" giving treatment. In the U.S. very few physicians will consider or discuss these therapies because it is not part of official or insurer sanctioned protocol.
It didn't take much research to figure out why your anecdotal account is unrelated to Single Payer.
One fourth of the patients at the MS center in Buffalo, NY are Canadian.
Ocrevus was just approved in Canada, about a year later than in the U.S. This is most likely the reason why MS patients are going to the U.S. and it has nothing to do with Single Payer, Ocrevus was approved in the U.S. eight months earlier.
Some people seek experimental treatments or procedures that may not be approved or available in Canada. Some are used off-label (using a treatment for an indication that has not been approved by Health Canada), are considered exploratory, or have been scientifically proven to be ineffective in treating MS. A person may seek experimental treatments because medications and/or other therapies have not been effective in managing their MS, or because of a desire to explore treatments that are on their way to becoming commercially available. It is important to note that all experimental treatments and procedures come with a level of risk, and sound clinical trials are required to understand the risks and benefits. Health Canada’s approval regimen ensures that the benefits of a given treatment or procedure outweigh its risks.
This is how medical tourism works, and in some cases it's just exploitation of desperate patients:
U.S. specialists in competition for Canadian MS patients
BY SHARON KIRKEY, POSTMEDIA NEWS FEBRUARY 9, 2011
U.S. specialists in competition for Canadian MS patients
Multiple Sclerosis patients and supporters rally in front of the Alberta legislature in November, calling on the province to cover liberation treatment. Photograph by: Ed Kaiser , edmontonjournal.com American doctors are clamouring for Canadian multiple sclerosis patients who are travelling abroad for a controversial treatment they can't get at home, a U.S. neurologist says.
"Every IR (interventional radiologist) in every town is competing with each other, 'Who can see more Canadians?' " Dr. David Hubbard, head of the Hubbard Foundation in San Diego, said in an interview with Postmedia News Tuesday.
Canadians are travelling to Bulgaria, Poland, Mexico and other countries for the procedure known as "liberation therapy," which involves opening blocked veins in the neck.
"I'm actually more worried about some of these American doctors who are doing it," Hubbard said.
"In the States, every IR is doing it. If anything, we have the opposite problem. I actually think it's happening too quickly in the United States."
Developed by Italian physician Paolo Zamboni, the procedure is based on a theory that MS is not an autoimmune condition but a vascular disease that can be treated with surgery.
Canada has among the highest MS rates in the world. There is no known cure.
An expert panel convened by the federal government to review Zamboni's theory, and his treatment, recently concluded that there is insufficient evidence to justify clinical trials and that MS research already underway should be concluded first.
Major projects studying liberation therapy and the theory behind it are being conducted in British Columbia, Alberta and Saskatchewan. Newfoundland and Labrador is funding a study of patients who go abroad for liberation therapy. Local neurologists will examine patients before and after treatment, and they'll be matched with other MS patients, who have not undergone liberation treatment, in order to evaluate its effectiveness.
Hubbard and two other experts in CCSVI, or chronic cerebro-spinal venous insufficiency, met with members of Parliament and senators Tuesday to discuss the latest science on MS "and to advocate on behalf of Canadian patients," said Liberal MP Kirsty Duncan.
Zamboni theorizes that abnormal blood flow from the brain contributes to MS; his technique involves opening veins with a balloon or stent.
Duncan said 12,500 "liberation" procedures have been performed worldwide in more than 50 countries, and that "80 to 97 per cent of MS patients show one or more venous abnormalities."
"If you talk to the interventional radiologists — the people who actually do the liberation procedure — about one-third of MS patients seem to respond very well," she said.
"This is significantly better than the outcomes for the drugs that exist today."
Duncan said Canadian MS patients who go abroad for treatment need proper followup care and that a registry needs to be put in place to track those who have been treated.
Hubbard's son was diagnosed with MS in May of 2009. He discovered then that "really nothing much had changed since I was a resident 30 years ago.
"The theory then was that MS was caused by a virus, or possibly an autoimmune theory. Basically 40 years later, billions of dollars of research later, every article in the journals started with, 'The cause of MS is unknown.' Current articles are still beginning that way."
He says the theory that the immune system is attacking myelin, the lining of the nerve cells, "has not been validated."
He said doctors discovered severe obstructions to his son's jugular veins in his neck. "They were dilated with a simple catheter that's put in the femoral vein in the thigh. Almost immediately his symptoms improved," said Hubbard, whose foundation tests and treats CCSVI in MS patients. So far, 209 patients have been treated.
"Half of our patients in southern California are coming from Canada," Hubbard said. "That's just not right, especially when it's being prevented by a very small number of angry neurologists in Canada."
Mark Haacke, a medical physicist and MRI expert at Hamilton's McMaster University who directs the MRI imaging research centre at Wayne State University, said that he has "probably personally reviewed over 1,000 cases (of MS patients) so far, and there are venous abnormalities everywhere."
Dr. Sandy MacDonald, a cardiovascular thoracic surgeon from Barrie, Ont., who was trained in liberation therapy by Zamboni, said that of 298 patients treated at a clinic in Cabos San Lucas, Mexico, "96 per cent were Canadians.
"I personally don't believe in medical tourism," he said. "I think it behooves us to actually look after Canadians and treat them in Canada."
"My plea is that the Canadian researchers actually do the trials. We need the support of the federal government for funding and we need to do a randomized, controlled multi-centre trial to actually prove that this therapy works, or doesn't work," he said.
"If it doesn't work, then it needs to be abandoned. If it does work, then it needs to be endorsed and paid for" by the provinces and territories, he said.
Last year, an Ontario man died after undergoing the treatment in Costa Rica. Mahir Mostic had surgery in June. Blood clots formed around the stent that was inserted in his neck; his friends said he couldn't find a doctor willing to treat him in Canada.
The Niagara Falls man returned to Costa Rica in October, where he died soon after he was given medication to dissolve the clots, which may have triggered internal bleeding.
"I think it's unethical and unconscionable that when people come back and they're looking for help, they have medical appointments cancelled, they have tests cancelled," Duncan said. "They go to the emergency and they're sent home."
skirkey@postmedia.com
twitter.com/sharon_kirkey
With files from Meagan Fitzpatrick, Postmedia News
View on the News A STEP IN THE RIGHT DIRECTION SAN DIEGO -- Percutaneous transluminal venous angioplasty – also known as "liberation therapy" -- doesn't help people with multiple sclerosis and may increase MS brain activity in the short term, according to a small, randomized, sham-controlled trial from the State University of New York at Buffalo, the first randomized trial to investigate the procedure.
The technique "was ineffective in correcting" chronic cerebrospinal venous insufficiency (CCSVI), the recently described condition it targets. "The results ... caution against widespread adoption of venous angioplasty in the management of patients with MS outside of rigorous clinical trials," the investigators concluded.
The findings follow a recent Food and Drug Administration warning that PTVA (percutaneous transluminal venous angioplasty) can cause deaths and injuries, including strokes, damage to the treated vein, blood clots, cranial nerve damage, abdominal bleeding, and detachment and migration of stents. More..
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