Your Odds? MS Treatments and Weighing Risk

Every single day we take life-and-death risks. We just don’t always think about it. So when people on multiple sclerosis websites furiously comment (inevitably in all caps) that I WOULD NEVER PUT THAT POISON CALLED TYSABRI IN MY BODY it gives me pause. When Tysabri launched, the drug posted a “black box” FDA warning of a 1 in 1000 risk of developing PML, a viral disease that is often debilitating and can be fatal. But how risky is that? I mean, if you were in a football stadium that seats 60,000 Tysabri users, an average of 60 of you would get the disease. That sounds scary. Yet those are about the same odds of you drowning (1 in 1073) in your lifetime, according to the National Safety Council. Now I know what All Caps Guy is thinking—I WILL NEVER TAKE A BATH OR SWIM IN A POOL OR GO TO THE BEACH OR WALK NEAR A RIVER OR CROSS A BRIDGE OVER WATER OR PEE STANDING UP IN THE EVENT I LOSE MY BALANCE, HIT MY HEAD ON THE BACK OF THE TOILET, KNOCK MYSELF UNCONSCIOUS AND DROWN FACE-FIRST IN MY OWN URINE. Hey, it could happen. But there far higher odds your life will end in other ways. Crossing the street: 1 in 623. Getting shot: 1 in 300. Falling down: 1 in 184. Accidentally getting poisoned: 1 in 139. Suicide: 1 in 115. And leading the way (other than heart disease, cancer and stroke), dying in a car accident: 1 in 85. That means 706 people in that imaginary stadium ultimately will die behind the wheel.

I’m not promoting or advocating Tysabri or, for that matter, any other treatment. And I don’t mean to trivialize risk—it’s real and not to be taken lightly. (In fact the risk for PML increases the longer you take the drug. After two years the risk doubles, although even then that still means you have a 99.5% chance of not developing the disease.) I’m just trying to put it into perspective. Multiple sclerosis can be a challenging disease and taming it effectively, for better or for worse, often means taking calculated risks. Many current and upcoming MS treatments, not to mention clinical trials, certainly carry a level of danger—some more than others. But that needs to be weighed carefully against the potential upside, which can be significant. Also when it comes to risk, consider how your disease may progress if you don’t take that medication or don’t do that treatment. There’s risk there, too. Of course, heck, tomorrow you could always get hit by a bus DRIVEN BY A GUY WHO TYPES IN ALL CAPS and then you’ll never have to worry about making an informed decision again. But what are the odds?

Originally posted March 10, 2011.