Fred Lublin, MD (FL): I am Fred Lublin, the Saunders Family Professor of Neurology and director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at the Icahn School of Medicine at Mount Sinai in New York City.

Aaron Miller, MD (AM): I am Aaron Miller. I am the medical director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai and professor of neurology also at the Icahn School of Medicine at Mount Sinai in New York.

Stephen Krieger, MD (SK): I am Stephen Krieger, also a professor of neurology at the Icahn School of Medicine at Mount Sinai in New York and a neurologist here at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis.

Real-World Insights: The Impact of Poor Adherence on Multiple Sclerosis (MS) Progression and Outcomes

SK: I will start by saying that people who are on treatment in MS do better than people who are not treated. We have seen data to underscore that over and over again over these last couple of decades — data about the rationale to start a disease-modifying therapy (DMT), as well as data for what happens when DMTs are stopped.

I will say that in particular, some of our medicines work by blocking immune cell trafficking into the central nervous system; that includes 1 of our infused monoclonal antibodies, natalizumab, as well as several of our oral medicines that work via the sphingosine-1-phosphate (S1P) mechanism. When those medicines are stopped, there is a very well-documented risk that the disease can rebound, and that there can be an excess of inflammatory activity and potentially devastating relapses.

The consequences of stopping those medicines in particular can be really, really deleterious. That can be from poor adherence or it could be from the issues that my colleagues have raised having to do with insurance approvals, insurance lapses, and other interruptions to treatment, which may serve the bottom line of the insurance company but put our MS patients in genuine danger of accumulating disability.

AM: I may sound a bit like a broken record, but I think it all comes back to what we said earlier, that education and creating appropriate and realistic expectations, I think, is the key to adherence. When patients are not adherent, they often feel guilty and they do not want to tell you. They do not want to tell you or they minimize or underestimate or understate the extent to which they are not taking their medications.

Again, one never wants to be punitive. If people do not take medicine, there is a reason they are not taking the medicine. They are either having side effects or they have a disbelief that should have been addressed earlier on or, of course, there can be financial reasons. But we want to be supportive. The goal was not to punish a patient for not taking a medicine. The goal was to make sure they are on a medicine that they are able to take successfully.

The Cost of Nonadherence: Reducing Healthcare Burden Through Protective Management

FL: You have already heard the steps to be taken to reduce it, so I do not think we need to repeat them, but it does increase the burden on the system: more hospitalizations, more emergency room visits, more visits to the doctor, and overall more impaired function and disability over time if you do not take the medication.

SK: I will give you an example from my own career. This relates to what both of my colleagues have said. I had a patient who was on a self-injection medicine for a number of years. Every time she would come to the visit as a young woman, she would come with her parents. We would talk briefly about how it was going and she would say it was fine. Then she developed a very significant relapse of her MS — new enhancing lesions in the brain and the brain stem, slurred speech, imbalance, diplopia, and she needed steroids. Her mother needed to go to her place to help take care of her during that time and discovered boxes and boxes of her MS medicine in her closet that she never opened.

This was a really humbling and eye-opening case for me; I had not really asked directly about adherence. I assumed it, but I did not ask directly about it. I learned from that experience to ask the tough question, the uncomfortable question. As my colleague Dr Miller said, people are not apt to volunteer if they have not been taking their medicine well. They may feel quite guilty about it. But that was a circumstance where she incurred both a physical cost to that, as well as healthcare resources, the need for steroids, the side effects from the steroids. She did okay, ultimately, but I learned a couple of things about how to ensure adherence from that experience and mainly to lean in and ask the questions about it.

Learning From Discontinuation: Preventing Gaps in DMT Care Through Early Intervention

AM: I think being tuned in to the patient and listening to their experiences with the medicine, not just asking the question — I can relate to the story of a patient of mine who was on 1 of the earlier injectable medicines that at the time was being given as a daily injection then. She was doing quite fine fortunately from her MS point of view.

Then she came in 1 day and she said, “Doc, can I skip 1 shot a week?” Since we did not really know how many shots a week you actually needed of this medicine, I said, “Okay, you can skip the shot a week.” Then she came in 6 months or a year later and said, “Doc, can I skip 2 shots a week?” So we went down to 2. Then she came back later on and she said, “Well doc, I am really not taking my medicine very often.” So we explored. In this particular case, it was reasonable to discontinue her medicine all together. But in other cases, you might inquire.

Why is it? A lot of people particularly with injections have a psychological barrier to doing the injection. Other people who are taking a medicine, oral or injectable, every day or frequently during the week, it reminds them that they have MS every time they have to go. They may be feeling perfectly well. They might not want to be reminded that they have MS and maybe that person would do better on a medicine that is given at very infrequent intervals. Tuning in to what the patient’s experience is with taking this medicine may be helpful.

SK: Another strategy that I think can be useful in maintaining adherence is having some sort of proactive outreach to the patient. Of course, some of the companies that make these medicines have support programs where they may be doing touch points. Our specialty pharmacy at Mount Sinai has now instituted a policy where there is a pharmacist who does outreach to people who are receiving these specialty pharmacy products to ensure that they are getting them and see if they have questions about them and make sure that their medication possession is maximized. Having some resources in place to do outreach even outside the context of the office visits, I think, can probably be an important measure.

This discussion was edited for clarity and length.