By Kathy Costello, as told to Rachel Reiff Ellis
I've been involved in MS care since before any treatments were available.
I’m chief operating officer at Can Do Multiple Sclerosis, a nonprofit in the patient advocacy sphere of MS. I’m also a nurse practitioner with a 20-year career in academic medicine at MS centers at the University of Maryland and then at Johns Hopkins.
I’ve seen a lot of change in MS care over the years.
The fact that we're on the cusp of being able to look at this entire disease process – and see where treatments could be used effectively – is an exciting prospect for me.
Here are a few initiatives you should know about.
A Move Toward Health Equity
Health equity is an enormous problem, and not just in the world of MS. Because issues that cause health inequities are so complex, moving the needle on them requires initiatives from all directions.
We’ve begun to understand that people in the Black community may experience MS differently than their White counterparts. They often have more severe progression and more significant MS-related disability.
There are myriad reasons for this. One critical piece of the puzzle is lack of representation of the Black community in clinical trials. If you're going to research a new medication, it’s critical to know that the drug works in all groups who’ll take it.
There’s been much effort to increase the number of people from all communities in clinical trials. We’re seeing large initiatives from the National MS Society and from Accelerated Cure, another nonprofit in the research arena.
Even our drugmaker partners are looking at this very carefully. In fact, Genentech created a trial specifically for the Black community to look at the efficacy of their MS drug, Ocrevus, which is for relapsing MS and also primary progressive MS. All of the centers involved were able to recruit a large number of people from the Black community to take part in the trial
Can Do MS has three initiatives that’ve been remarkably successful in bridging the racial divide in MS education. Two years ago, we began a workshop-based program directed at issues that are often seen in the Black community. Through it, we talked about things that often aren't spoken about, such as disease-modifying therapies. We also talked about self-advocacy and how to develop your voice so that you’re empowered to help make health care decisions and ensure that you're getting what you need and deserve from the health care system.
Since then, we've had quarterly virtual meetups led by three health care professionals, two neurologists, and one exercise specialist, all from the Black community. It’s been wildly successful. People have developed better skills and confidence in managing their MS, but also confidence in having conversations with their health care providers about their care.
Better Understanding of MS Disease Mechanisms
There's been an explosion in the MS research community about what’s going on between MS and the immune system. We know that this is an immune-mediated disease or autoimmune condition, but we’re discovering what's actually happening both in the periphery and inside the central nervous system, and that’s driving new approaches to treating MS.
It's a long-held belief – and I think research certainly backs it up – that early, accurate diagnosis and early intervention with disease-modifying therapy is the best way to reduce long-term disability from the disease. We're also learning that there's a certain amount of pathology or immunopathology, meaning driven by the immune system, that's occurring within the central nervous system, and that it may be driving something called the smoldering process, or progression independent of relapse activity, or PIRA for short.
This is a driver both for early intervention and new therapeutic agents that can cross into the central nervous system to target the immune pathology happening inside the central nervous system.
A report at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) introduced a new class of drugs called Bruton's tyrosine kinase inhibitors that work in the central nervous system. They may be able to work on MS progression that's independent of relapses.
Think about it: Treatments for the underlying process will potentially give people much longer to do all the things that they wanted to do. I think that we can really have an impact on progression and long-term disability. To have a therapeutic agent that can target that part of the disease could really delay or even prevent some of that disability from occurring? That’s powerful.
Comprehensive Approaches to Disease Management
Some of the things we're learning on top of drug treatments is about health and wellness, and what you can do to take better control of your MS. We know things like exercise and physical activity improve flexibility, strength, endurance, cognitive function, and mood.
We spend a lot of time trying to help people improve and increase their activity level so that they can have some of these benefits and also maybe prevent some of the conditions that we're all susceptible to. There's not an MS diet, but there's certainly a way that people can improve their diet. There are research studies that suggest a link between people that are on the Mediterranean diet – mainly fruits, vegetables, and whole grains – and better outcomes for their MS. So we focus on a lot of these areas to create a more comprehensive approach.
Yes, treatments are important. Yes, addressing relapsing disease and progressive disease is important. But it's not just about medication. It’s about lifestyle and the choices you make.
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SOURCE:
Kathy Costello, CRNP, chief operating officer, Can Do Multiple Sclerosis.
