I like lots of things. I like dogs, I like children, I like rainstorms, I like canoeing (although I haven’t gotten my act together to go in a long time). Another thing I like is being right. I am unashamed to say that I get a giddy little thrill when I can clarify a position and bring someone around to my way of thinking. It’s not particularly humble or diplomatic of me, but I figure as long as I don’t throw it in anyone’s face I am okay.
There are some times I wish I wasn’t right:
An Ontario man with multiple sclerosis died of complications after a controversial treatment in Costa Rica to open up his neck veins, CBC News has learned. Mahir Mostic, 35, of St. Catharines died on Oct. 19, one day after doctors in the Central American country tried to dissolve a blood-clot complication.
Let’s back up for a second. Back in April, I wrote a post about a new proposed therapy for the treatment of Multiple Sclerosis. This therapy involves inserting an angioplastic balloon into a neck vein and inflating it. The proposed mechanism violates the current scientific understanding of MS, but patients have reported dramatic symptom improvement after receiving the procedure, so it was worth investigating. However, the rules of skepticism must be particularly adhered to when a new “miracle” procedure appears that completely changes the current understanding of any phenomenon. If someone, for instance, claimed that they had invented a ‘gravity beam’ that could attract objects by firing gravity at them, we’d probably be more skeptical than if someone had said they’d invented a ‘sound beam’ that could fire sound over long distances – the latter requires a slight tweaking of current understanding, whereas the former requires a complete re-imagining of how gravity works.
So, by the same token, I was concerned at the flood of patients demanding access to this procedure without adequate testing beforehand. Even the doctor who invented the procedure cautioned people to wait until it had been evaluated. However, out of their (totally understandable) desperation to alleviate their symptoms, patients demanded that the approval for the surgery be fast-tracked. When the various health authorities said that they needed to have actual testing before they would approve it, the predictable happened: a private company began shipping people to countries that don’t care about health regulations.
The problem with failing to regulate health care is that it allows quackery to go on unmonitored. These patients who circumvent the system do not receive adequate follow-up:
Suddenly, after nine weeks, [patient Brandon] Layh began to deteriorate. His neurologist said he had two blood clots near the stent, and he was prescribed more blood thinners. The couple fears what could happen if the clot moves. “If it lets go, we were informed that he could have the clot move into his brain, which would cause a stroke,” said his wife, Sindy Layh. “I know they can fix it. He shouldn’t have to wait to get into a dire situation where he is on death’s door to be treated.”
The couple is now exploring whether to seek treatment in the U.S. to dissolve the clot at a cost of $20,000.
Stents increase blood turbulence, which promotes the formation of clots. The problem with clots is that there is a “damned if you do, damned if you don’t” scenario: a clot can become dislodged and cause a stroke, but prescribing clot-busting drugs when the clot itself is that far advanced makes such an event more likely. Blood thinners are prescribed to prevent the clot from growing and reducing turbulence, but at any point the clot could break off. Proper follow-up and monitoring may have been able to prevent this from happening, but so would not having the procedure in the first place.
And now, thanks to patient zeal and the happy willingness of the private sector to exploit that zeal, a man has died. Apparently his isn’t an isolated case either:
[Vascular surgeon Barry] Rubin said Mostic isn’t the first case of a serious complication in an MS patient who has sought treatment outside Canada. Last week, he treated a woman who had the vein procedure in Mexico.
“We found extensive clotting in the left arm reaching into the chest veins, and some of the clots had broken off and travelled to her lungs, which is called a pulmonary embolus, which is life threatening, potentially life-threatening complication.”
This is what happens when you skip steps and jump right into a risky procedure. This is why science works in small, incremental steps. This is why it’s a good thing that such studies take time. None of this means that the procedure doesn’t work, it just means that there are significant risks to the patients, and we don’t know if the benefits are worth it.
I have friends whose careers tip-toe into the realm of woo-woo, who often chastise me for my skeptic approach. “If it gives people hope and makes them feel better, what’s the harm?”
This is the harm.
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When I first heard about this treatment I had the same reaction you did. And, like you, it gives me no pleasure to have been right.
I’m completely sympathetic with the desperation felt by people with MS. On the other hand, I remember too well Laetrile and other such “miracles.”
I’m currently reading “The Emporer of All Maladies: A Biolgraphy of Cancer.” It’s both appalling and inspiring to learn the hit-and-miss, one-step-forward-two-steps-back process of medical research. Truly every advance is built on the shoulders of countless anonymous scientists in labs all over the world.
And that’s how the key to MS will be found. It’s slow but it won’t be a “miracle” surgery, sad to say.
The zeal of the private sector to exploit patients’ desperate for a cure or alleviation of their suffering is for me a primary reason we must zealously preserve our public health-care system. I have been treated in the US while travelling so experienced the for profit system that over treats if the patient or their HMO allows it.
The for profit sleaze is so overwhelming, the window dressing so stylish, and while flat on your back wondering if you are having a heart attack, almost irresistible. Fortunately my innate financial probity extends to my insurance company – I still had to fight the buggers, they try to refuse every claim I think!
What can we do Ian to stop this exploitation of sickness? It really revolts me and I would like to see perpetrators liable under the criminal code.