One might be inclined to forgive Dr. Paolo Zamboni for his bias.
One can certainly understand that for sufferers of the debilitating spectrum of diseases known collectively as multiple sclerosis (MS), even false hope is better than no hope.
And one may even give the media a partial pass for all the anecdotal stories about recipients of Zamboni’s controversial, and now thoroughly debunked, treatment achieving a better quality of life.
The problem is, CCSVI (chronic cerebrospinal venous insufficiency), the condition Zamboni proposed in 2009 as a cause for MS, and for which he developed a surgical treatment, was littered with red flags right from the beginning.
In the first place, Zamboni’s initial research indicated 100 per cent of the MS patients he examined using ultrasonography exhibited blockages of veins in the neck that drain blood from the brain. Zamboni theorized this led to a buildup of iron that triggered the immune response that most experts believe is responsible for the development of MS.
A 100 per cent correlation is unheard of in medicine. Red flag number one.
Zamboni, a vascular surgeon, whose wife suffers from MS, coincidentally discovered a cause for MS treatable by vascular surgeons. Red flag number two.
Furthermore, Zamboni’s initial positive trials of the treatment he developed—popularly dubbed “liberation therapy”—which uses balloon angioplasty to widen cranial veins, was unblinded with no control group. Red flag number three.
Finally, Zamboni did not disclose financial ties to the manufacturer of the ultrasound equipment he proposed should be used in the diagnosis of CCSVI, a potential conflict of interest and red flag number four.
Nevertheless, science is a process that requires the testing of ideas, even radical ones, and Zamboni’s ideas were thoroughly tested. By 2013, CCSVI as a cause of MS, and liberation therapy as a treatment, were dead, scientifically. Every credible authority, including the National MS Society in the United States and Cardiovascular and Interventional Radiological Society of Europe (CIRSE), had recommended against it.
Except they were not dead because in this day and age patient demand and social media activism often trump science. Perhaps they always did, but this is a case of the tail wagging the dog if there ever was one. While the majority of the scientific community was over CCSVI and liberation therapy years ago, politicians have a really hard time ignoring desperate voters and their families and Canada has more of those than any other country in the world.
According to recent statistics, an estimated 100,000 Canadians suffer from the various types of MS, around 290 per 100,000 population. And despite eight years of thorough debunking of Zamboni’s research, many of those with the means continue to go overseas to receive the treatment.
In the face of that, the federal government along with British Columbia, Ontario and Quebec funded a $5.5 million clinical trial of the procedure. Last week, researchers at the University of British Columbia (UBC) announced the results of that definitive study, which would be, in a sane world, the final death-blow for liberation therapy.
The UBC research was gold standard, a double-blinded, 48-week study that showed no difference between patients who received the actual procedure and those who received placebo surgery.
We do not live in a sane world, however.
Even under the light of last week’s announcement, CBC ran a story about an MS patient who received the treatment who swears it improved her quality of life. Virtually, every news story included similar anecdotes. One woman asserted without the therapy she would be in a wheelchair, as if she could possibly know that.
I am not going to get into the logical fallacy behind that nor argue these patients did not achieve better quality of life after the treatment. When it comes to quality of life, perception is reality. Research seems to indicate, however, that these particular patients would have perceived an improved quality of life whether they received the treatment or not.
And no amount of debunking will ever be enough for some people.
Linda Hume-Sastre, president of the advocacy group CCSVI Ontario and conspiracy theorist who believes Canadian health authorities are not giving CCSVI a fair shake, called the UBC study “sham science,” and encouraged people with MS to continue to research their options including liberation therapy.
As long as there are people willing to believe and pay, there will be doctors in unregulated jurisdictions willing to prey and pad their bank accounts.
Hopefully, though, this latest science from UBC is enough to stop the waste of research money, space and time at least in the Canadian jurisdiction and push organizations such as CCSVI Ontario permanently to the fringe where they belong.
