What's the greater danger to patients with MS: the disease itself or the recommended treatment?
As I said in a previous post, one of the fundamental challenges MS neurologists face on a daily basis is deciding what poses a greater danger to a patient’s health: the disease itself or the recommended treatment. This decision is often made with incomplete information about what the future holds for an individual patient and the precise risks of certain medicines. This is especially the case with some of the newer medicines for MS, for which there is not much experience. Neurologists—and MS neurologists in particular—tend to be a conservative group, though there is a huge variety in how MS patients are treated, even within the same MS center.
Every doctor would like to think that they strike the proper balance between the risks and the benefits of various treatments for MS, using only the most up-to-date, evidence-based medicine. The reality is there is no single right answer for every patient, and the truth is doctors often make recommendations to their patients on more emotional grounds than scientific ones (though try getting any doctor to admit that!).
To put it plainly, humans are often terrible at judging risk, and doctors are humans, after all. Examples of this abound (for anyone interested in learning more about this topic in general, I suggest they read The Culture of Fear by Barry Glassner.) If people were truly afraid of what is dangerous to them, they would scream with horror every time they entered a car. Though fatalities due to car crashes have decreased in recent years, every year, 1 in 10:000 Americans die in a car accident, and scores more are seriously injured. Overall, about 1 percent of Americans will die in a car crash. Yet, most people are so comfortable in their cars they fall asleep while driving (this is, of course, one of the main causes of accidents in the first place).
What does this have to do with MS? As I write this, there have been 23 deaths and 124 cases of PML due to Tysabri, out of about 83,000 people who have taken the medicine. I know doctors who are very reluctant to use Tysabri in patients for fear of the risk of PML, but as soon as they are done with their day, drive home without a care in the world. One of my patients refused to go on Tysabri, telling me that she was a mother and had to be there for her children. She then went home from the office visit in the car, with her kids, exposing all of them to the risks of the road.
My point in writing this is not to be a cheerleader for Tysabri or to minimize its risks. The mother in the above scenario has alternatives to Tysabri, for sure, whereas she might not have alternatives to driving with her children, assuming that she ever wants to leave the house. However, it is important to recognize that many things we do and are very comfortable with, come with serious risks. Most people make the reasonable decision that in order to go from point A to point B, it is worth the risk to own and use a car. Many people can also make the reasonable decision that in order to most effectively treat their MS, the risks of Tysabri are well worth taking. Questions about how to manage risk in patients with MS will only become more complicated in the future as new medicines are introduced to treat MS.
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