By Kasey Minnis, as told to Rachel Reiff Ellis
As someone in MS education and advocacy for over 31 years, I’m excited about how quickly the scene has shifted over the last year toward better understanding and treatment of the disease.
I’m an executive director of the Multiple Sclerosis Foundation, a patient service organization. A big part of our role is providing direct services to people with MS, to help them get through today until the cure is found. But in my role, I also work a lot with health education and advocacy for people with MS.
Progress is being made in all kinds of areas. When I first began with the foundation, it was right before the introduction of the first medication to the market. There was a lottery to decide who would get it, because they couldn’t ramp up production fast enough. And now we have these high-efficacy therapies that allow people to live relatively normal lives. It's amazing to see.
Here are three major areas of advancement I’m excited about in the world of MS:
More Accurate Diagnoses
For many years, MS has had around a 20% misdiagnosis rate, meaning there are things that should’ve been ruled out but weren't. Or, a person who actually has a similar disorder like neuromyelitis optica spectrum disorder (NMOSD) or myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is incorrectly diagnosed with MS.
At this year’s Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), they introduced a revision to the diagnostic criteria for MS that’ll make it much more specific. It’ll also allow people to get diagnosed more accurately and start treatment more quickly.
Researchers have identified biomarkers for NMOSD and MOGAD to distinguish them from MS. But as yet, there’s no specific biomarker for MS.
They’re studying how brain lesions look on MRI scans to possibly help identify patterns of MS, and to help tell it apart from NMOSD and MOGAD. Researchers are getting more specific about what markers radiologists and neurologists should look for. This means doctors can distinguish them from other things that might lead to lesions, such as a stroke or other conditions.
These criteria haven't been published yet in terms of a peer-reviewed journal. But information about the criteria that the committee reached were discussed at the ECTRIMS meeting. There's a lot of excitement about the possibility of more accurately diagnosing people and getting them started on effective treatment sooner.
Access to High-Efficacy Therapies
The second area of recent advancement has to do with governmental advocacy and insurance advocacy. The current process to get new treatments approved over old treatments takes a lot of time, particularly for Medicare and Medicaid.
A problematic issue we have is with “fail first policies,” or step therapy. This is where insurers require you to fail on two older and potentially less expensive medications before you move on to the high-efficacy therapies, or HETs.
With MS, this is really problematic. Time is brain with MS, and it's so urgent that people be on an effective therapy that stops that damage. If you fail on a therapy, it means you had a relapse that caused damage inside your brain.
Recently, the MS community has banded together to make sure everyone has access to HETs. There's a lot of work to be done. But we’ve seen some small wins that are very exciting.
For example, Oregon recently revised their Medicaid and Medicare policies to make sure that people have access to HETs. A community of MS organizations, patients, doctors, and MS centers came together to lobby for that.
That's an area where we try to get people involved and to speak out to their legislators. The disease has to be treated with urgency.
Treatment for Disease Progression
The third area of advancement is particularly exciting for people who’ve lived with MS for a while. In the area of research, we’re seeing real advancement in treating progression that happens independent of relapse.
Also at the ECTRIMS meeting, researchers released results about a BTK inhibitor drug that showed a delay in progression for people with secondary progressive MS. Right now, there are no treatments for secondary progressive MS (SPMS). We have close to two dozen treatments for relapsing-remitting MS, and one for primary progressive MS, but this is a first for SPMS.
Yet, a good portion of people with relapsing MS will become secondary progressive over time, so this offers a new hope for treatment once approved for use.
All people with MS have progression eventually. We have treatments that stop relapses. If we can find treatments that stop the progression that happens independent of relapses, that could be functionally what a cure looks like – a way to stop the disease in its tracks.
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SOURCE:
Kasey Minnis, executive director, Multiple Sclerosis Foundation.
