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.

Paying Serendipity Forward

In 1860 Ralph Waldo Emerson wrote in The Conduct of Life that “Shallow men believe in luck or in circumstance. Strong men believe in cause and effect.” So last winter when serendipity curled around me and my wife like the warm midday sun after a cloudy morning, it would have been easy to simply enjoy the glare of good fortune. After all, we had been through a lot recently with my multiple sclerosis; we deserved a little providence.

We were checking into a cozy bed and breakfast in southern New Mexico when we noticed a couple enjoying wine at the inn’s small bar in the kitchen. (It’s always a nice touch when B&Bs have a complimentary wine hour in the evenings.) But after some small talk with the other guests, we realized a) the inn didn’t offer a complimentary wine hour and b) the wine we were drinking was in fact that of the nice couple we had recently befriended. Admittedly, I am talented in the art of the faux pas and have expert skills in the plying of alcohol, but I don’t usually display them with such gusto around strangers.

The evening tumbled forward in the most unpredictable of ways. We shared our life’s successes, its hurdles, and our quirky passions. We even discussed the artistry and anguish of the television show Breaking Bad for what had to be a full hour. Eventually we were toasting glasses of Stag’s Leap cab sav over an opulent steak dinner at one of the state’s priciest restaurants with these people we had just met. And my wife and I were not able to pay for any of it. Andy wouldn’t let us contribute a cent. Really. It was that kind of night.

It’s easy to forget when you have a disease like multiple sclerosis that your life isn’t the only one that is difficult or challenging or painful. Our new friend Andy tragically had lost a son some years earlier in a dorm room fire—a fire set by an arsonist. He was helpless to prevent his son’s murder. Then he lost his wife; couples often divorce after the death of a child. I am sure that he continues to grapple with his life’s daggers and there is no way I would trade my MS for his heartbreaks. And there is no way I will ever forget his generosity.

“I learned from my son’s death not to wait for tomorrow,” Andy wrote on a memorial website for his son. “To be a little more patient with others. I also learned the importance of being true to one’s self and I also learned how to be more forgiving.”

A couple weeks after meeting Andy and his new wife, we were at dinner sitting next to a pair of innocent high school students clearly on a date and lost in themselves. She spilled a glass of water in her lap, giggling through her braces; her young boyfriend quickly volunteered his sympathy and then his napkin. We couldn’t possibly guess what their future holds—what life hurdles they’ll ultimately be faced with—but for that night we made their today a little more memorable. We paid Andy’s generosity forward and covered their dinner tab in full. (Granted, they drank water and ordered no appetizers or desserts, so we can’t take that much credit for being altruistic.) When the young man found out at the end of their meal what we had done, we got the most heartwarming of compliments: “Whoa, that’s sick, dude.”

I remember being that boy. Dating a cute girl in high school. And I married her. (The photo I've posted is shortly after we started dating—I had just turned 20 and Laura 17.) This week we celebrate our 20th wedding anniversary. Now that is sick. Thanks, Andy, for the reminder not to wait until tomorrow and for demonstrating the power of paying it forward.