Treating MS: Patient Education, Pipeline Innovation, and Shared Decision-Making

April 9, 2020

The director of the MS Comprehensive Care Center at Stony Brook University discussed the need for more innovative approaches to DMTs and better communication about disease processes from physicians.

Patricia K. Coyle, MD

In the treatment of multiple sclerosis (MS), the advancements have come relatively rapidly since the 1990s compared to other neurologic diseases and disorders, with a somewhat consistent introduction of new therapeutics. Although, in the last 5 years or so, treatment approaches have begun to shift in response to treatment options, and some may imply that therapeutic innovation has slowed.

Additionally, as the understanding of the processes underpinning MS has improved, the need for more patient education about these new and earlier approaches to treatment—as well as the still-controversial decision to halt treatment in older patients—has grown as well. The use of shared decision-making in MS treatment also highlights the importance of good communication between patients and physicians to improve the process of changes to treatment.

To find out more about the state of the science, the pipeline in the treatment and management of MS, and what critical information physicians should be communicating to their patients, NeurologyLive sat down with Patricia K. Coyle, MD, professor and interim chair, department of neurology, and director, MS Comprehensive Care Center, Stony Brook University.

NeurologyLive: What are your thoughts on the current state of the pipeline in MS?

Patricia K. Coyle, MD: I’m particularly struck by how many me-too drugs can we have? How many anti-CD20s can we have? How many S1P receptor modulators can we have? It’s not very original. We need new agents, new mechanisms of action, and maybe relapsing MS is plentiful at this time—we need better treatments for progressive MS, and we need central nervous system repair strategies. These me-too drugs are not bringing efficacy to the table. They're bringing convenience, they're bringing, perhaps, a little bit of a switch in the adverse event profile and therefore how you might initiate the treatment, but when you're a me-too drug, you're not going to bring too much new to the table.

What stands out to you in the research for progressive MS?

We understand that progression is starting from the very earliest time point—very similar to Alzheimer disease and Parkinson disease. You really want to treat it before you have sufficient damage to have it clinically apparent. Ideally, we'd be treating the neurodegenerative phase of MS at the earlier time points before the patient is slowly worsening, if at all possible.

What they've learned is that the damage mechanisms appear to be somewhat different for the neurodegenerative component of MS. There's a lot of microglia activation. You really have damage to the mitochondria, so you have oxygen-free, radical type of damage. You have iron deposition. There's a very strong link to age, which I think is mostly explainable by the fact that we're losing neurons from the very beginning, but you have to pass a critical threshold before you see the clinical impact of that, and this is, really, problems within the central nervous system. We can clearly have an impact with some of our DMT's that act systemically, but you would think that we're likely going to need some penetrating treatments to really fully and most effectively treat the neurodegenerative phase. Timing of treatment is likely important, we may need to use mechanisms of action that are more than just one, we may need a penetrating agent, all of these issues are on the table for optimizing treatment for progressive MS.

What are your thoughts on the conversation about halting treatment in MS?

This is an interesting debate. I think if you feel the patient is benefiting from the treatment, you do not stop it. We do not have good data that MS remits or that MS burns out. There's really no convincing data for that. The issue in the older individuals that have had MS for many years is if they have transitioned to progressive disease, if they’re secondary progressive, and they're very remote from the relapsing phase and they're getting up in age, it's unclear if relapsing disease-modifying therapies truly have any benefit. I think that you might rightly consider discontinuing that treatment.

The more problematic issue is in a relapsing patient who stayed relaxing despite getting up in age and long duration of their MS. Well, have they done so well because of the DMT that they're on, or have they done so well because really perhaps this was your milder form of MS and they would have done that well without treatment? Right now, we don't have a way to cull those apart. My own feeling would be that if it's not broke, don't fix it. If the patient is tolerating the treatment well, they're not progressive MS, they're relapsing, and they're doing very well, I would hate to withdraw it with the risk of having an issue.

Can you tell us a little about the resistance from some with regard to early treatment?

There's overwhelming data that MS needs to be treated early—the earlier the better—within a few months of the first attack. But sometimes you get pushback from patients and from physicians.

From the patient's point of view, imagine that you've been completely healthy, you're a young individual, you have a relatively mild neurological issue—it may even spontaneously get better—and then you're told you have MS and you should go on lifelong treatment. You may feel fine. You may feel that this is minor. You may feel that you can follow a wellness program and take care of the issue. This is an education factor. The health care provider really needs to make clear to the patient what MS is capable of doing—ongoing damage to the targeted body organ, the central nervous system—and that, ultimately, it may be better to go on treatment to try to minimize that damage and live a healthy lifestyle and live an intact life to be able to age well. That's really communication and an understanding of the disease.

I believe there are some practitioners who don't really see much MS and don't take care of MS, who may just have a smattering of cases and don't fully understand the benefits of early treatment, and thus, if they get pushback from the patient, may not be very aggressive about trying to persuade them. Particularly, if they misinterpret shared decision-making to be, “Well, if the patient doesn't want the treatment, I shouldn't push them for it.” No. The patient needs to be educated on why treatment would be so important.

Do you have any advice for physicians about how to better communicate information about the disease process to patients?

Well, just think of the name we have for the major phenotype of MS: relapsing-remitting. What does remitting imply? It implies the damage process stops. That’s totally untrue. Why are we calling it relapsing-remitting? The first thing you need to do is explain to the patient that this disease does not remit. There's ongoing, accumulating, permanent injury to your central nervous system if we don't get you on therapy to minimize that. The person may be aware of clinical attacks, they may be aware of deterioration on the exam, they may be aware of macroscopic lesions on the MRI scan—they haven't been told about the microscopic injury.

Somebody can be completely stable, have no attack, maintain stable neurologic exam, have no new lesions on their MRI scan, but there may be accelerated brain atrophy, so they've had a lot of microscopic injury even though there's nothing obvious clinically. The patient needs to be told about that. They need to understand that. They need to understand that the brain is aging from about the mid-30s on, and if you have a damage process like MS hitting it, you can’t age as well. Why would you not want to be on an agent to minimize that damage?

What are the benefits to having multiple options for treatment and how can the decision process be best approached?

When we talk about using shared decision-making to choose the best DMT for the individual patient, there are multiple factors that you take into account. There are MS disease factors, there are MS drug factors, there are individual-to-the-person factors. The more options you have, the better fit you can get in selecting a specific DMT that may be the best for that particular patient, and really get their buy-in.

In addition, when you have multiple, multiple options, you are much more likely—if the patient is breaking through or unhappy with their DMT—to make a switch. You have multiple switches to choose from, and I think the MS disease-modifying therapies are an invisible therapy. You don't want somebody on it and feeling bad or having side effects. There's no reason to have them feel poorly on it, they should feel well on it—they're being treated to really maintain a normal life.

Transcript edited for clarity.