(¯`·._. MA SEP, MON ENNEMIE INTIME. ._.·¯)Atteinte d'une SEP (sclérose en plaques) de forme progressive rapide depuis 98, je m'efforce d'apprivoiser mon ennemie intime. Coups de blues, de gueule et éclats de rire!
By Shella Gardezi - Grand Forks Gazette Published: August 31, 2010 2:00 PM Updated: August 31, 2010 2:40 PM
Local resident Misha Zibin said surgery to treat symptoms of multiple sclerosis was a success, but now that he's back in Canada, he's struggling to get the follow-up care he needs.
Zibin travelled to New York in May to have the "Liberation Procedure," which is not approved in Canada. The disease has been called a breakthrough by some as it is based on the premise that MS is caused by blockages in blood flow to the brain. Angioplasty or stents have helped relieve some of the symptoms of MS for people who have had the procedure.
Zibin has had stents placed in his neck and needs an x-ray every three months to ensure the blood is flowing normally.
"If blood flow isn't proper to my brain, all my symptoms will start returning," he said.
Those symptoms include poor circulation, fatigue and lack of strength and mobility.
Zibin had a requisition from his doctor to get a 3D Doppler x-ray. However, he learned that x-ray isn't available in Interior Health. However, he says other options are.
"They don't have the ideal equipment, but they have some equipment that will tell me, yes, your blood flow is fine, and that's really all that matters," he said.
Zibin received a written e-mail from Susan Ogroske, patient care quality officer, informing him that the test his doctor requested wasn't available in Interior Health. As well, she stated he would not be eligible for the follow-up tests because the treatment wasn't approved in B.C.
"As the treatment you received is not currently approved in BC, it is not known what is required for the follow up imaging studies," she stated. "Until such time as further direction is provided from the
provincial level, imaging studies related to the unapproved treatment are not being conducted."
In an interview, Zeno Cescon, regional director of diagnostic imaging services, said the 3D Doppler x-ray was not available in Interior Health. However, he said in most cases radiologists would work with doctors to find out how to get the information needed.
"Often it's a consultative process," he said. "They will tell the radiologist what they're looking for and the radiologist will decide with them what's the best test."
Cescon said the 3D test is not used "routinely" for testing anywhere in B.C.
When asked if the 2D test would be available to Zibin if his doctor requisitioned it, Cescon agreed that it would.
"Oh yeah, if his doctor in Grand Forks, his registered B.C. physician (which I'm sure he is), ordered a 2D scan for diagnosis, yep, we would get that done - probably, right there in Grand Forks," he said.
However, shortly after the interview, the Gazette received a e-mail from Karl Hardt, communications officer, stating Cescon felt he, "may have left the wrong impression," and advising the Gazette to quote Cescon on the following: "Follow-ups to unapproved and uninsured medical procedures are generally not covered by the Medical Services Plan in BC, except in cases of medical emergency. People should always check with their local physicians or the physician performing a procedure outside B.C. about what follow-up procedures and testing may be needed."
Zibin said he was disappointed in Interior Health's response.
"People should know that after they get this treatment done, you have to fight harder even just to get follow up now," he said.
Southern Interior MP Alex Atamanenko said he isn't familiar with Zibin's case, but in general he supports making the Liberation Procedure and any follow-up care available and publicly funded to any MS patients in Canada.
"My first response, off the top of my head, would be that this is wrong," said the New Democrat MP. "If he had this procedure done, he should be able to have access to follow-up."
Although the government and the MS Society have stated more research is needed, Atamanenko said there have been documented cases of the procedure helping MS patients relieve their symptoms.
"My position is that we should be exploring all options, and these people should have a choice," he said. "There should be a mechanism in place so people have the choice of getting it done in Canada rather than having to go to other countries."
Zibin has arranged for follow up scans to be done in Spokane, Wash., at a cost of $1,000 per exam. As well, he will have to pay an additional cost for a professional to read the result."
Newfoundland and Labrador’s health minister say he still wants to fundclinical trials for a controversial treatment for multiple sclerosis patients, despite a rejection by medical experts.
Jerome Kennedy told CBC News he does not understand why the Canadian Institutes of Health Research and the MS Society of Canada announced a recommendation Tuesday that there is no medical evidence to support clinical trials of so-called liberation therapy.
Also known as Zamboni treatment — named after the Italian vascular surgeon who developed it — the treatment involves using angioplasty to widen veins so that blood will properly drain from the brain.
The Canadian Institutes of Health Research said a panel of international experts it assembled had unanimously recommended against support for clinical trials, at least for now. Alain Beaudet, the president of the agency, cited “an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS.”
Kennedy, who in late August announced the Newfoundland and Labrador government is prepared to help pay for clinical trials for liberation treatment, is not persuaded.
“I’m sort of confused by the message from the CIHR in that we have this, what appears to me to be very strong anecdotal evidence that this is working,” Kennedy told CBC News.
“So I’m very interested in hearing what my provincial counterparts have to say.”
Kennedy said he will raise the matter with other provincial and territorial health ministers at a meeting in St. John’s next month.
“If the other provinces are willing to fund national clinical trials then I’m certainly willing as a province to pay our fair share,” Kennedy said.
Ted Warren, president of the St. John’s chapter of the MS Society of Canada, said he was disappointed to hear the advice coming from his own organization.
He said he cannot understand the rationale for the decision.
Scientists said this week that Zamboni’s research is questionable because it was not blinded, meaning that it did not follow a methodology to remove the possibility of researcher bias.
CIHR, which funds health research in Canada, is recommending the federal government pursue a more thorough investigative route before it considers clinical trials for liberation therapy.
As a start, it would have experts monitor and analyze international work on the technique."