Time for governments to get on board with helping those with MS
Mike Martin Frankford
The following was submitted as a letter to the editor.
I’ve had MS for almost 30 years and have just returned from Pacific
Interventional in the United States for the “liberation treatment.”
I have an excellent line of credit so I can pay for my own treatment but I want to write this letter for other MS patients who aren’t so fortunate.
It’s ironic there were four other Canadians at the medical center the same day I was there, for the same treatment. Family and friends of one of the patients had to put on a fundraiser to be able to afford their trip. Unfortunately, there must be thousands of MS patients in Canada that want the treatment but simply can’t afford it.
The “liberation treatment” certainly hasn’t cured my MS. But it seems to have made most of my MS symptoms less severe and it’s like I turned the clock back 15 years.
I’m only a clinical trial of one but the best example of an observable change is that I can now stand up and keep my balance for a couple of minutes where before I used to have trouble standing up long enough to pull up my pants.
Some may trivialize such modest improvement but it’s the first time I’ve had my symptoms actually regress. My symptoms were always slowly progressing downward before, even though I’ve been taking Rebif injections, costing $22,000 per year, for more than a decade.
For arguments sake, let’s say that there is no direct link between MS and CCSVI. That shouldn’t preclude my treating CCSVI. My veins were blocked 100 per cent, and if it also coincidently relieves my MS symptoms, so much the better.
If treating CCSVI independently of MS makes my MS symptoms better, I’m not concerned whether I have a plumbing (CCSVI) or an electrical problem (MS).
I’m not complaining about our Canadian health care system. I personally have always been provided good care and I would never want a private American-style system in Canada.
And I understand this is still an experimental procedure and I never expected the government to fund the cost. Of course, I’ll be claiming all of my expenses on next year’s tax return because Revenue Canada will have a hard time convincing me that this is not a valid medical expense.
However, I did find Ontario Health’s treatment of Mahir Mostic unconscionable. He was only asking for medical help for an ailment (a blood clot) that could be corrected using a medical procedure that’s available to other Canadians who have the same ailment.
The cause of the blood clot (complications from the “liberation treatment”) shouldn’t be justification for the denial of medical care. He should have been treated for his medical complications in Canada.
The federal government must mandate all doctors provide medically approved procedures, especially for life-threatening conditions, to all Canadians.
And I get really irked when I hear a doctor on the ethical dilemma he’s having in not providing follow-up care for MS patients who leave the country for the “liberation treatment”. He just wants to throw his hands up in the air, do nothing, and then I think plead “the “Fifth.”
Frankly from the patient’s point of view, please don’t tell me why you can’t treat me. I spoke with both my family physician and my neurologist before getting the procedure and they both assured me, even though my neurologist advised against it, that they would still provide for my medical care.
My doctors’ replies seem more empathetic to me because I don’t think a doctor should treat a patient like an automobile. It’s like the car company (i. e. doctor) doesn’t want to cover the warranty because the owner (i. e. patient) didn’t service the car to complete manufacturer’s specifications.
Moreover, I have an issue when the government and scientific community justify not starting clinical trials because of the risk. I find it odd I can pay for a face lift and get liposuction, but I couldn’t find a place to take my money for an MRI test in Canada to check if I have CCSVI. And only because I have MS.
I wanted the test because I was curious, since the original airing of the W5 story in December 2009, to see if and how much my veins were blocked. I know the government doesn’t want to touch the public/private health care debate but we already have private health care in Canada but it’s only for certain procedures, mostly the vain ones.
And as far as risk is concerned, you can have severe complications, including death, from any medical procedure, but getting an angioplasty, a relatively minimally- invasive procedure for my CCSVI, is medically justifiable in my mind. I’ve seen liposuction done before and it didn’t look minimally-invasive to me.
Both Ontario Health and Health Canada should at least follow
Newfoundland and Saskatchewan’s lead in fast-tracking observational studies.
It would be a shame to waste $2,500 worth of MRI/MRV tests that I had performed. Probably more than a hundred Canadian patients have been treated at the clinic in California and I know I’m willing to share my MRI/MRV data for part of any future observational study.
And if this future study shows that it helps most/many/some patients, why wouldn’t you want to proceed with formal clinical trials?
Finally, I keep hearing that “they” can’t offer the “liberation treatment” in Canada because “they” don’t have the scientific proof. But how are “they” ever going to get this proof if the scientific community is unwilling to start or the government to fund the clinical trials?