Bruce Bebo, PhD, executive vice president of research at the National Multiple Sclerosis Society, outlines the organization’s focus on stopping MS progression, repairing lost function, and preventing the disease altogether. He discusses the impact of new diagnostic criteria, the evolution of progressive MS research, and the importance of advocacy in sustaining funding for breakthroughs.
For more from Bruce Bebo, read our article here.
Transcript
I lead the research function of the National Multiple Sclerosis Society in the United States, and our mission is to cure MS and empower people living with MS to live their best lives. So my responsibility is just to cure MS.
And so the society for, gosh, almost 80 years now has been making robust investments in research that has led to pretty much all the disease modifying therapies that we have now for MS. You can tie an investment that society has made to pretty much all of those therapies.
And we’re actively making investments in three main areas: We’re making investments in how we can better understand the underlying biology of MS and develop better treatments to stop MS in its tracks and prevent any new progression or any new symptoms from happening and just completely stop the process. So that’s an area of focus for us.
Another area of focus is repairing and restoring lost function through a number of ways, one by possibly repairing myelin and repairing nervous system tissue, and also through lifestyle wellness rehabilitation strategies to promote nervous system remodeling and restore function in people who’ve lost function.
So and then our third pillar, a third area of focus in our research program, is how we can prevent MS from happening in the first place.
The meeting this week, there’s been a lot of studies reporting how we could identify MS earlier and earlier and earlier and perhaps even before the central nervous system even becomes involved. That would be a strategy for prevention of MS. So those would be our three focus areas of our investments and research.
Probably the most exciting thing at this conference this year was the presentation of the updated diagnostic criteria for MS. I think it’s hard to overstate how much that’s going to change our approach to treating and taking care of people with MS. So first point to make is these diagnostic criteria don’t change anybody’s diagnosis if they’re currently living with MS.
There’s no change to your diagnosis. But what the new diagnostic criteria are doing is creating an opportunity to diagnose MS much earlier than we’re able to diagnose MS now and hopefully more accurately. So there’s several new tools that are introduced as part of the diagnostic criteria that will help us identify MS earlier and earlier.
In some cases even before any clinical signs or symptoms of MS become apparent. So that is a huge development. And I mentioned one of our areas of interest in investments is trying to prevent MS from happening in the first place.
This is a step in that direction. So we’re moving the ability to diagnose MS closer and closer to the triggering event. And I think the work we’re doing now is to try to move that even closer to the triggering event. And as I said, possibly even being able to identify people before the nervous system becomes involved and stopping the disease from happening in the first place.
So the diagnostic criteria were, I would say the biggest thing to discuss. I think a big chunk of what happens at this meeting is incremental but important. And that is the learning how the current disease modifying therapies perform in the real world. So these are all tested in clinical trials, they’re approved based on their performance in a very controlled environment.
And we have to learn how these agents perform in the real world under uncontrolled, if you will, circumstances. And that gets us closer to one goal that we have of precision medicine. So it’s finding the right drug for the right person at the right time.
A lot of studies at the meeting this week that are providing more and more clues for how to deploy or to use the current disease modifying therapies — who is the most likely person to respond to the different therapies? I would say that was another big focus, and then one more topic would be just a number of emerging therapeutic areas.
Particularly, I’d say I’ve seen a shift. I’ve been coming to this meeting now for probably 14 years, a shift towards more focus on progressive MS. What’s driving progression in MS.
And a lot of, I’d say, posters, presentations, looking at novel pathways, potential targets for interventions for that form of MS. So I would say that was another highlight for me.
I’m personally very proud, and I know the society is very pleased and proud that many of the presentations that are made at this meeting and other meetings were from researchers that are supported by the National MS Society.
In addition to research that we fund, we fund fellows and young investigators, the people that actually do the research when we have a cure for MS, it’s going to be a person that finds the cure.
We robustly fund fellows, young investigators, scientists at different inflection points in their career to try to make MS as a target area, as a therapeutic area, a very attractive place for the best and brightest minds to want to focus their energy on.
So that’s clearly reflected at the meeting this week. There are many presentations, posters, oral presentations that were made by scientists who were supported, let’s say senior scientists who got their start and support from MS society funding, mid-career scientists, and a lot of the early career scientists or fellows that are here presenting posters at the meeting that were funded by the National MS Society. So it’s very gratifying to me personally, very gratifying for the society and a very important way for us to make investments, both for now and in the future.
These are the young people that are here at this meeting that are presenting, and the poster sessions are the ones that are going to be developing better treatments and cures in the future.
I mean, this meeting used to be a few hundred people, and now it’s almost 10,000 people. So there’s 10,000 people in this city this week whose jobs are focused completely on advancing MS care from all over the world. The beginning when this meeting was first launched, there were no disease modifying treatments for MS and now we have over 20. It’s even hard to keep track of the number, frankly, at this point, how many disease modifying therapies we have.
And one of the let’s say statistics, or data, I like to share is the relapse rate in MS. In the era before, disease modifying therapy was about 3 or 4 relapses per year. On average if you lived with MS, you had relapsing MS, you would have untreated three to four relapses per year. If you were on the right disease modifying therapy now, you should expect to have a relapse every five years or every 10 years.
So you’ve gone from three or four relapses a year prior in the era before disease modifying therapy to if you are on the correct disease modifying therapy now, you shouldn’t have a relapse at all, and perhaps at the very maximum once every several years.
So that is a, I’d say, huge marker on our progress. I think the sentiment is we have a pretty good understanding of what’s driving the relapsing aspects of MS and forms of MS and the evolution I’m seeing is a more focus on what’s driving the progressive forms of MS and that progressive aspects of MS.
And I think we’re at that point now, 25 years ago, when we had the first disease modifying therapies for relapsing MS had very modest effects, but gave us that first clue we needed to evolve and refine and get new and better treatments. That’s where we’re at right now with progressive MS.
So we are, I think, at the cusp of having some treatments that would benefit people in that phase of the disease, and that’s going to be our kind of launching off point for better and new, more effective therapies. You’re starting to see some of those presentations this week of some emerging pathways, emerging targets that I think will be our second generation of treatments for the progressive forms of MS.
Yeah. So 10 years from now, I think the experience of people living with the progressive forms of MS, it’ll be a little bit like Type 1 diabetes. You’re going to take your pill, you’re going to take your shot. And MS will be a very, very, very small part of your life. I think 10 years from now, we’re going to have safe and effective treatments for progressive forms of MS that will be perhaps on par with what we have for relapsing forms now.
I mentioned earlier this concept of early treatment even before disease symptoms become apparent, perhaps even before the central nervous system becomes involved. I think in 10 years we’ll have that figured out and we’ll have treatments that we can screen, people that are at risk for, MS, and can treat people that are at risk for MS, and prevent the clinical signs of MS from happening in the first place. I believe in 10 years we’ll be at that point.
It is a challenging time. The funding environment is challenging. It’s mostly challenging from uncertainty. That sort of news flow around research funding has generated certainly a concern about that. It does risk slowing us down. So at the National MS society, we have a robust advocacy function that represents the million people in the United States that live with MS.
And we raise those voices and elevate those voices and have relationships with decision-makers, both in the federal government and in local and state governments, to advocate for research funding, advocate for access to the therapies we have now and the diagnostics we have now.
So what the society is doing is, either on our own or in coalitions with other organizations that have a common interest in preserving and accelerating research progress, in lobbying and advocating and raising the voices of a million people in the United States that live with MS to share that concern we all have about the effects of a research funding environment on the progress that we’re making.
So we’re cautiously optimistic that that advocacy, that raising that voice will be heard and that this uncertainty that we’re experiencing now will become a little more clear in the near future.
We are here. All 10,000 people are here because MS exists, and millions of people around the world who live with MS and are affected by MS. That hasn’t always been reflected at this meeting. And I give ECTRIMS a lot of credit for listening to the patient advocacy organizations, for increasingly involving the voice of people affected by MS and living with MS.
In the program and in the activities of the organization. And so the society and other advocacy organizations are really pleased to be supporting the patients. They have advocated for more involvement of people living with MS in the program.
Really pleased that ECTRIMS leadership has listened to that, is aligned with that, and has created this really cool opportunity for people to both be present physically here in Barcelona to participate in at this part of the meeting and of course, the people who are going to join virtually online and participate in that.
So I think it would be important to provide your feedback to how this is working for you, and so that this can continue to be refined and improved and be a real asset, if you will, for the MS community.
