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Disease Progression in MS


Experts in MS discuss the challenges related to treatment selection and management when MS disease progression occurs.

Neil Minkoff, MD: There’s a group of patients that, no matter what we start, will have progression, poor outcome, or an adverse event and need to have a switch or a change of therapies and so on. There are many perspectives in terms of how to approach that. I want to bring other folks in. I’d like to understand if that switch is about convenience, adherence, or compliance. Is it about making some action? Dr Ross, you do a lot of work around patients’ benefits. How is it that a benefit decision might impact that switch? As we’re following patients over the course of years, how do they go from drug A to B to C potentially over time?

Nancy Ross, PharmD, BCACP, MSCS, CSP: I feel like it used to be very physician driven, like, “I feel like you’re not doing well on this medicine, so let’s move you to drug A instead of drug B.” But now there’s a lot more conversation with each patient about their options, for good or for bad, because if you give a patient too many options, they go home and get all confused, they go on Google and read terrible things, and then they don’t want to do anything. There’s a conversation that really has to take place. The provider has to look at what they think will be in the best interest of the patient in the long run. Do we put them on Mavenclad because we have this bad feeling that they’re going to be nonadherent to whatever we put them on, so let’s get something in them? Do we put them on ocrelizumab because we get 6 months of treatment and then we don’t have to rely on their ability to administer medication at home and remember to take the medicine?

Despite the best efforts of our specialty pharmacies and what the payers do with their clinical case managers that call patients and remind them to take medicine, it still comes down to whether the patient is going to be adherent and compliant to this medication. We’re talking about trying to get a patient to take a medicine that potentially has adverse effects. We’re going to tell them, “This medicine isn’t going to make you feel good now, but it’s an investment. We’re talking about what we’re going to do for you and your body years from now.” It’s hard to convince someone that they’re going to take this medicine every day if it’s not going to make them feel better, so there really has to be a sense of patient buy-in to what you’re offering them in the long term.

Neil Minkoff, MD: Dr Lopes, we’ve talked around and at the concept of formulary management and potential limitations and whether those are barriers to care and cost share and so on. What about for the patients who aren’t in their first start, who are going to their second or third drug in a treatment progression or paradigm? What’s an appropriate payer response to that, and how do you see that working in terms of payer management?

Maria Lopes, MD, MS: In a sense, it’s less of an issue. In my experience, once you get to third-line and you’ve already been intolerant and demonstrated that you’ve progressed, payers are open to that. We all recognize there’s a cost to failure and a cost to switching. Especially if the patient is being managed by a neurologist, pretty much anything at that point gets approved, including the higher-cost IV [intravenous] products, Tysabri and even alemtuzumab. That’s been my experience, Neil. It’s usually when it’s your frontline options. Even there, it’s really about still providing choice. We may not cover everything; that’s not the reality. But you’ll have a preferred interferon, or sometimes several products. You may have a preferred S1P or several. You’ll have a preferred dimethyl fumarate, or Tecfidera. There are still options in the front line. But if you’ve already failed 2 other options, most payers aren’t prescriptive—especially in the third line—of what you can and cannot get; at least not yet.

Neil Minkoff, MD: I don’t want to put words in anybody’s mouth, but I’m anticipating hearing from some of the clinicians who are treating on the panel that third line might be too late. I’ve been doing this a long time, and I’ve learned a few things.

Darin Okuda, MD: Yes and no, Neil. Sometimes it’s a game that we have to play. Sometimes you have to play that game to get to where you want to be, unfortunately. There are discontinuations that are genuine because of lack of response. Within our large study here [at University of Texas Southwestern Medical Center], more than 50% of patients actually discontinue treatment for reasons other than lack of efficacy, so there are a wealth of other reasons why people come off therapy than, “My MRI got worse.” All the things that NEDA [no evidence of disease activity] encompasses: “My disease is progressing. I’m feeling weaker. My MRI has changed. I’ve had a relapse.” More often than not—54% of the time—it’s the result of some other cause. That’s important. In Texas, we’ve been stuck, because under certain payers, we’re forced to use generic glatiramer as a first line. There’s some inflexibility there. Sure, you can go to bat with 1 of the manufacturers to get the preferred drug covered, but sometimes that’s a 3-month battle or more. It makes it impractical. Overall, it’s just very complex.

Thomas Leist, MD: Think about if I have to have a disingenuous conversation with the patient. “I’m going to start you on a medication that I don’t want you to be on because I don’t think it’s effective, but I have to have you on this medication because your ‘insurance company’ is forcing you through that particular step.” We have already discussed that adherence is a very significant issue because, as Nancy Ross mentioned, there’s no immediate stake. There’s no reward. You didn’t have this attack because you were compliant. It’s essentially that the absence of something happening is the reward in itself, but we’re not mentally geared toward living off something not happening; therefore, we’ve been successful. We don’t do it as a nation, and we don’t do it as individuals in a certain way.

It’s very difficult when I know where I want the patient to go. If I have to have this ambiguous speech with the patient, I’m already losing them in a certain way. And I’m dealing with a large African American population: 35% of the patients I see are African American. Don’t believe that there’s an open-arm policy toward treatments. Treatments are looked at with the greatest suspicion. Were they tested in my particular case? Are you doing an experiment on me? Is it going to hurt me over a period of time? Now I’m forced to say, “We’re going to start somewhere, but this is not really where I want you to be. I want you to go somewhere else.” That’s inserting itself into the exam room in an unhealthy fashion. After all, we have to accept that MS [multiple sclerosis] is a very varied disease state in which patients come to the table with different risks for immediate progression. The first treatment needs to be relatively open so that we don’t lose.

Transcript edited for clarity.

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