At the dawn of a new year, I’ve been asked to jot down a few thoughts about what may be ahead in 2016 for those of us living with multiple sclerosis (MS). My first reaction to this request was to think of Johnny Carson’s Carnac the Magnificent character holding an unopened envelope to his bedazzled turban and answering unknown questions.
We all want to know what’s going to happen in the coming year when it comes to living with MS, but each of us wants to know something different. To attempt to answer those questions would be impossible.
So instead I’ll stand atop the pile of information we’ve amassed in 2015 and try to see more generally what might be just beyond the horizon, just out of view.
Progress Toward Treating Progressive MS
First and foremost, 2016 will be a year of new hope for treating progressive forms of MS.
In an opinion piece I was asked to co-author in The Lancet Neurology last February, my coauthors and I pointed out the importance of researchers, pharmaceutical companies, patient advocacy organizations, and government regulators working together on research into progressive MS in the same way they once had for the treatment of relapsing forms of the disease.
At least two developments suggest our call for collaboration was heard:
2016 will see the release of the first medication — ocrelizumab — that seems to have some effect on primary-progressive MS, as well as benefits for relapsing-remitting MS.
There are also a few drugs currently in phase 2 trials for treatment of secondary-progressive MS, and we’re likely to see release of data on those drugs in 2016.
World MS Day 2016 will take place on May 25 this year. The theme for the 2016 observation is Independence. While independence is important for all people living with MS, the word has special significance to those whose symptoms have progressed and who are wondering how they’ll cope down the road.
September is the tentative month of MS Life 2016, billed as the largest gathering of people with MS in Europe. I was able to attend and present at the bi-annual event in 2014, and I’m looking forward to this year’s event. With more than 3,500 participants at the 2014 meeting, I’d have to say it was not just the largest gathering of people with MS in Europe, but also one of the largest gatherings of people with MS in the world.
The number of people in the world with MS, and the cost of MS to individuals and countries, are some other important numbers that may become clearer in 2016.
Ireland released a first-of-its-kind study in 2015 on the economic impact of MS on an entire nation, and I’d have to say that other countries are sitting up and taking notice.
As one example, a new bill is working its way through the U.S. Congress — Advancing Research for Neurological Diseases Act of 2015 — to replace the failed (and atrociously named) National Neurological Disease Surveillance bill. This, along with other international initiatives, may give us a more accurate estimate of the number of people living with MS worldwide in the coming years.
10-Year Milestone for This Blog!
On a personal note, the Life With Multiple Sclerosis blog community is set for a milestone this year as well. Our first blog was posted on March 14, 2006. I had no idea then what I was doing writing a blog (and some will say I still don’t), but we’ll be 10 years old in early 2016. I have no idea how we’ll mark the occasion, but as the longest-running blog on the topic of living with MS, we’ll have to think of something to mark a full decade!
So the long and the short of living with MS in 2016 is that we will see movement in the direction of treatments for progressive MS, we will see our connections around the globe strengthen as a community, and, with your help, we will make those in authority and power hear our voice — a voice that will be louder because of you.
I also wish you a Happy New Year as we start 2016. Let’s hope it’s a better year for us all.
Wishing you and your family the best of health.