By Kristin Schneeman, Program Director, FasterCures
“Comparative effectiveness” It sounds like a no-brainer: We should study the effectiveness of medicines for treating a condition and use the ones that are proven to work best. But as the drumbeat around this buzz-phrase gets louder, we need to make sure we understand its implications for patients’ access to treatments that work best for them, and for incentives to pursue new and even better and potentially more personalized therapies.
It’s a pretty tall order to make this issue accessible to the average American, but the Partnership to Improve Patient Care – a coalition aimed at educating consumers and policymakers about comparative effectiveness – may have found the perfect spokesperson in former NFL linebacker Eli Alexander. Alexander spoke at a Partnership event in Washington last month about what happened after he was diagnosed in his thirties with multiple myeloma, an incurable blood cancer.
The only available drug for treating Alexander at that time was Thalidomide. While some patients tolerate it well, its side effects in his case were extreme – excessive fatigue, loss of sensation in his hands and feet, muscle atrophy, extreme weight loss. “I played football for 28 years and walked away from the game healthy. After six weeks on thalidomide, I lost a quarter of my body mass. At 37 I was facing being a burden to my wife and children. I would no longer be able to work, run my business. I would have had to become disabled, become a tax burden. Thalidomide was killing me – it was taking care of the cancer, but it was killing me. I’m not really concerned about being alive, I’m concerned about living. It’s hard to put a cost on that.”
The only other alternative treatment, a stem cell transplant, went well, but ten months later his myeloma reappeared. Fortunately, 45 days before his recurrence, the FDA had approved the drug Revlimid for myeloma. It has worked extraordinarily well for him, without the debilitating side effects. It is significantly more expensive than thalidomide, but he has been able to lead a productive life. “I’m here today because Revlimid worked for me. It doesn’t work for everybody, but it worked for me. I’m able to do the things I retired to do – be there for my wife, coach my kids’ football. I can write, I can walk.
“There’s no cure for the disease I have. I don’t know how long Revlimid will work for me. We live from one discovery to the next.”
At the beginning of the event, which came a few weeks before the Super Bowl, Alexander jokingly reminded the audience that football is just a game. Battling cancer is clearly not a game, and patients need to have every available weapon in their arsenals.