That New MS Drug: The ABCs and Other Things That Flood Your Inbox (Part 1)
My ride began when I entered the infamous Betaseron lottery of 1993. I was one of 67,000 people living with MS who were anxiously waiting for the first DMD (disease modifying drug) for Multiple Sclerosis to hit the market. So, what is a drug lottery you ask? Well I'll tell you.
When the FDA gave the first MS drug the stamp of approval, Bayer Pharmaceuticals couldn't produce it fast enough for all who had waited patiently (or not so) for something, anything to treat their MS. So they created a process to distribute the drug in an orderly and equitable way. Enter: The Drug Lottery. Those of us who were interested in starting the drug (and c'mon, who wasn't interested in this new source of hope!?) could sign up and be placed on a list through their doctor's office. The lottery consisted of a number assignment that reflected the order in which you would get the drug, the higher the number the longer the wait. Way to add anxiety to an already anxious community. It's pretty clear that those of us living with MS are not doing so well in the luck department!
So when the numbers came in, my fingers were clenched on my metaphoric ticket. I waited for the ping-pong balls to float to the top of those thingies and held my breath. The perfectly manicured nails removed the numbered-balls from the thingy and the camera zoomed in for a close-up as she announced it...
Ok, in reality I got a letter with my number in it. But it would be hard to go all-dramatic with an envelope opening. (Wait a minute! I could use the bloody paper-cut metaphor.) Which is a nice segue in to the expression "cut-and-dried," which it was! I would either win the right to start using the very first drug to treat this disease or I would receive a slip of paper that read "Sorry Charlie." And from my dejected shuffle and the barely audible "I didn't want it anyway," you know how that went.
So, I wouldn't be injecting this new drug for up to a year and a half from that date. While I was disappointed and angry, I soothed myself knowing that I wouldn't be injecting this drug for up to a year and a half from that date! I mean, who wants to look at a calendar marked by wincing, alcohol swabbing and sharps container-ing? Not to mention that list of possible side effects. This losing ticket wasn't all that bad, or so I convinced myself. When push comes to shove, I'm a syringe-half-full kind of woman!
Cut to today; Pharma is in overdrive. We are offered new treatment options faster than you can say, "Holy FDA-Approval, Batman!" And as the RXs continue to hit the market, every new med was introduced to us like a heavily advertised theme-park attraction. Come experience the mind-blowing, breath-taking thrill of a lifetime! And as with any roller coaster, the excitement sits right next to fear. Because we know that when it is over and done, we will either run down that ramp eager for a second go, or stumble down searching for the closest garbage bin into which we can deposit that lunch that felt much better going down.
With every new med, I get back on the roller coaster, pull down the restraint bar, and hope we make it through the next scene without headline news the next day. "She has fallen and won't ever get up!"
Even though I take this ride over and over again, I continue to find hope. I can hear it, under the din of metal on metal, I imagine myself bounding off the ride with an agility that I haven't known in more than two decades. And when it doesn't turn out like I had hoped, I get back in line and search for my optimism reserve. Though it's not always standing in line with me, I like to save a seat for when it returns.
It usually does.
Check back for Part II: The Roller Coast Ride of this riveting adventure...