A couple of weeks ago, our friend Hassan felt a tightness in his chest, and then a few other troubling symptoms of cardiovascular disease. In the middle of the night he called for an ambulance, and next day had a stent in place, firmly holding apart the walls of a formerly constricted artery. His heart had also been thoroughly examined and he went home not just feeling much better, but assured there was no lasting damage. Angioplasties have been performed regularly for over fifteen years, and since 2001 at a rate of over two million per year. The risks and benefits are well known.
A catheter inserted through the groin is used to transport imaging dye, a movie camera, a balloon and the stent up to the heart. This being Canada, Hassan wasn’t billed on his way out of hospital, though he has been paying income tax all his life which, of course, is what covers the cost. Some Americans think Canadian health care is an abomination, others think it’s admirable. In the end, it’s the nurses, doctors and technology that make the difference; the way they’re organized is just another system. Anyway, we’re about to experience the U.S. system for ourselves, as Canadian health care refuses to give Caroline the treatment she wants.
About a year ago a procedure not unlike Hassan’s was suggested as a possible treatment for multiple sclerosis — but in veins rather than arteries. Venous problems have been associated with MS since 1863, and in 2008 the vascular surgeon Dr. Paolo Zamboni found constricted veins in the necks of MS sufferers, including his wife. Following balloon veinoplasty, opening the veins to blood flow, he reported their conditions improved, and proposed a theory called CCSVI (chronic cerebro-spinal venous insufficiency). It doesn’t account for all symptoms and occurrences of MS, and it’s far from proven, but it is generally considered worthy of study. None of Dr. Zamboni’s patients suffered any ill-effects.
Over the period of 2010, however, the Canadian response has been timid, to say the least. Proposed studies are limited to considering the viability of the theory, and draw the line at testing it on willing patients. Thousands of MS sufferers consider immediate experimental treatment preferable to allowing the disease to progress further, whether or not it works. They’re lining up to travel abroad for expensive treatments with no guarantee. The perception is that veinoplasty carries no greater risk than angioplasty, and certainly less than the long-term effects of existing MS drugs, none of which even pretend to halt disease progression.
Medical authorities in Canada, as well as the MS Society and the Federal Minister of Health Leona Aglukkaq, have responded with great reluctance to the demand for accelerated studies, or even follow-up for those who undergo the treatment abroad. Dr. Mark Freedman, a member of the MS Society’s Medical Advisory Committee, recently described those advocating CCSVI as a “mass hysteria movement based on unfounded facts that has led to no less than a cult.” The medical establishment is also describing the treatment as “dangerous,” pointing to two deaths (one of which was fictitious) following veinoplasty treatments in which stents were used — something Dr. Zamboni categorically rejected. In one case, the stent migrated into the chest and was successfuly removed, despite reports to the contrary; in the other, it became clotted with blood. Artery walls contain muscular tissue that contracts and expands with the pulse, but vein walls are soft and collapse when not filled with blood; their ability to hold stents in place is quite different.
The long and the short of it is that this weekend Caroline and I travel to Albany NY, where she’ll undergo the procedure. Her condition has deteriorated over the last year and she’s hoping this will stop it getting worse. The treatment’s expensive and although common sense dictates that money’s not the issue, cost is an added stress. She’s also adamant that no stents be used, but worries that if scans show the veins closing up they’ll be recommended — she doesn’t want to have to refuse. She also worries about the follow-up that’s required but not available in Canada. We’ll have to travel the four or more hours to Albany, in unpredictable winter conditions, for routine scans and in case we need any sort of ongoing reassurance, examination or explanation.
Finally, we have to leave behind the support system of Caroline’s friends and family, not to mention the familiarity of her doctors and pharmacists, to explore something that, proven or not, is an option she feels is not really an option. She thinks she’d be crazy not to try it. I can only agree. We’ve looked at Zamboni’s theory; clearly, it’s not comprehensive, but thousands of people so far have claimed marked, long-term improvements. Who cares that no one can properly explain it? She’s not naive enough to expect a cure; at best, she hopes it will end or at least reduce the debilitating fatigue that dogs her day after day. At the very least, she hopes disease progression will slow, so she can exercise her balance and strength. As long as she avoids stents, we don’t fear bad outcomes, despite dire warnings from the Canadian medical establishment. If their fears are well-founded, they’ve done a poor job of communicating them. Frankly, they seem more afraid for themselves than for their patients: of losing face, and of compromising their collaboration with pharmaceutical companies.
Their reaction is disappointing to say the least. They’re rightly concerned with the viability of the theory, but their inability to acknowledge the desperation of their own patients, their refusal to fast-track experimental treatment on willing volunteers and, above all, the denial of follow-up treatment to Canadians travelling abroad, is not only uncompassionate but also unprofessional. They’re giving MS sufferers no say in the matter. The system saved Hassan’s life in a weekend, but a whole year after Dr. Zamboni’s announcement of a new treatment for MS, Canadian medical researches are not one step closer to knowing whether it’s viable or not.