News for the Multiple Sclerosis Community

People with MS willing to accept risks for better efficacy

There are many drugs being evaluated in MS trials these days that seem to provide much better efficacy than the currently available drugs. However, their potent effects usually have a downside which is a higher risk of adverse health effects, even an increased risk of death. I've been wondering how people with MS will make choices if/when these drugs can be prescribed, and it turns out a research team has been exploring that very topic. They developed a questionnaire that was filled out by 651 people with MS to ask about treatment preferences and trade-offs.

Delaying progression was the most important priority for people with MS. In addition, respondents were willing on average to accept around a 1 in 250 annual risk of death from various causes in exchange for a decreased relapse rate (from 4 to 1) and longer time to progression (from 3 to 5 years). The questions asked were only hypothetical, so real-life choices may be different, but still it's interesting to see how people view these trade-offs. Hopefully the risk/benefit ratio for some of these new drugs will turn out to be much more favorable than what people say they'd be willing to accept.

If we measure the right things we might have both decrease in relapses and slower progression. Relapses are a bugger, but disability is far worse. And with MS you can't know if it will improve, stay the same, or get worse. As time passes the likelihood of improvement gets lower. Sorry if I'm stating the obvious but I have heard all my life that we are 'only about five years away' from a cure for cancer.

My treatment preference is for anything that makes sense.

I don't care if you say I am grasping at straws. Just think of all the milk shakes you could sell me if I reached the right straw (before the last one)!

BTW mitoxantrone may have been involved in my heart attack but my only regret is that my neurologist wouldn't let me combine it with copaxone.

-Chris Sullivan