Identifying Secondary Progressive Multiple Sclerosis - Episode 6
Peter L. Salgo, MD: Before we use a very broad brush, which we’ve been doing, to discuss multiple sclerosis [MS], we’ve been able to get the subgroups and subtypes, right? There are different kinds of multiple sclerosis. Do you want to lead us through these things?
Patricia K. Coyle, MD, FAAN, FANA: The major form of MS is relapsing. It’s also called relapsing- remitting. I don’t like that because the disease does not remit. We don’t have any good data. That’s how 85% to 90% of MS will present with a clinically isolated syndrome [CIS], which is the first attack. And you can then grade that first attack as a high probability of MS or not. Do they have lesions on the brain that are otherwise unexplained with their optic neuritis or transverse myelitis? So that’s the major form of MS, relapsing MS, that presents with the first attack of CIS.
Peter L. Salgo, MD: Is it relapsing-remitting? Is that what it’s called?
Patricia K. Coyle, MD, FAAN, FANA: No, I don’t like—I don’t call it that. The National MS Society does. I don’t like that because it’s inaccurate. The disease does not remit. We do not have data that MS remits. We shouldn’t be calling it that. We should be changing the name.
Peter L. Salgo, MD: You’re going to see it in the literature.
Patricia K. Coyle, MD, FAAN, FANA: Right.
Peter L. Salgo, MD: You’re going to see RRMS [relapsing-remitting multiple sclerosis].
Patricia K. Coyle, MD, FAAN, FANA: You win, it’s relapsing-remitting. But they’re wrong. It’s relapsing events. And then the other form of MS is progressive MS, slow worsening. We believe that represents the neurodegenerative phase. Primary progressive MS, slow worsening from onset. It doesn’t start within an attack. That’s 10% to 15% of MS. And then secondary progressive MS is a relapsing MS patient who then transitions to a progressive form of the disease.
Peter L. Salgo, MD: And then there’s CIS.
Patricia K. Coyle, MD, FAAN, FANA: That’s the first attack, clinically isolated syndrome. That can be the first relapse of relapsing MS.
Peter L. Salgo, MD: OK. Let’s say you get a symptom. Somebody calls this clinically isolated.
Patricia K. Coyle, MD, FAAN, FANA: Yes.
Peter L. Salgo, MD: Where it goes from there determines the alphabet soup to apply to it later.
Patricia K. Coyle, MD, FAAN, FANA: Correct. If they’re CSI-high risk, they basically have relapsing MS.
Peter L. Salgo, MD: What about the educational supportive systems? You establish this diagnosis. You say, “You’ve got it, good luck, see you later.” Or do you integrate them into some sort of support system?
Patricia K. Coyle, MD, FAAN, FANA: This is an eminently treatable disease now. And we’re saying the earlier you get on treatment, the better. That’s why you want an early-as-possible accurate diagnosis, in order to treat that patient and transform their life and change their future.
Peter L. Salgo, MD: A treatable disease. I never thought—because I didn’t think, obviously, that we would be having this conversation with MS—that someone would tell me it’s an eminently treatable disease. Do you agree with that?
Patricia K. Coyle, MD, FAAN, FANA: Eminently treatable.
Peter L. Salgo, MD: Do you agree with that?
Thomas P. Leist, MD, PhD: I would say it’s an eminently manageable disease. Because treatment means that we stop it in some patients. But I agree.
Patricia K. Coyle, MD, FAAN, FANA: But you’ve seen wonderful examples of the power of treatment.
Thomas P. Leist, MD, PhD: Absolutely. So I fully agree with the fact that most appropriate intervention in a patient early on can change the trajectory, can also ultimately change how this person can continue to work or continue to do all the other things one wants to do in life. We are not good at fixing it.
Patricia K. Coyle, MD, FAAN, FANA: No, that’s tougher.
Thomas P. Leist, MD, PhD: As neurologists we are good at preventing things from happening.
Patricia K. Coyle, MD, FAAN, FANA: That’s why you want to start treatment early. I tell patients they can have a normal life.
Peter L. Salgo, MD: You do?
Patricia K. Coyle, MD, FAAN, FANA: Yes, I do.
Peter L. Salgo, MD: And obviously believe it.
Patricia K. Coyle, MD, FAAN, FANA: And I believe that.
Peter L. Salgo, MD: That’s great. But in order to get the proper treatment with the way that the healthcare system is structured, you need to be able to parse this into ICD-10 [International Classification of Diseases, 10th revision]. Because ICD-10 has got to parse this out, make a diagnosis, and put them in the correct payer group and be sure that you guys are categorizing them properly, so they get what they need. Do you use ICD-10? Do you triage based on ICD-10? Do you approve based on it?
Maria Lopes, MD, MS: Well, billing and coding reflects 1 code for MS, which is the G35 code. And I think that’s also part of the issue as MS is evolving into perhaps multiple different diseases. How do we understand these? There’s no biomarker that defines if you have relapsed MS versus secondary or primary progressive. It’s a journey. It’s how patients present and how they evolve over time in terms of their levels of disease activity and severity. As such, from a coding perspective—and codes don’t come from payers, by the way, the coding comes from the EMA [Electronic Medical Assistant]—we at the mercy of 1 code. And so if a physician is calling and saying this patient has secondary progressive and perhaps it’s by history, we have to take the physician’s word. Also, payers don’t practice medicine, so we really have to rely on the clinician.
Peter L. Salgo, MD: No, but doctors would argue with you, “You’re practicing medicine by denying us payment.” Who will get there later?
Maria Lopes, MD, MS: We’re not, usually if it’s a high-cost drug—and all these drugs are high cost—we have to start with what’s on the indication. That’s usually where the prior authorization begins.
Thomas P. Leist, MD, PhD: I think you said something that is very important. It’s the journey. Pat, you pointed out that there is primary progressive multiple sclerosis, never an attack progression from the beginning, and then there are the relapsing forms of multiple sclerosis. Obviously, the FDA has added a little to the different acronymic contributions in all this, but these are 2 groups we don’t differentiate between. Biologically we differentiate between them; phenotypically, how the patient behaves. And so 1 of the big issues obviously is, what’s the underlying biology that makes somebody different? That’s the part that they do not fully understand.
Peter L. Salgo, MD: But that’s almost transparent to a payer. The payer has the problem of, “I’ve got this diagnosis.” And I think what I heard you say is that ICD-10 doesn’t distinguish.
Maria Lopes, MD, MS: Correct, it does not.
Peter L. Salgo, MD: It doesn’t parse out. That book’s about this thick. You would think that in a disease that has a million people in the United States, ICD-10 would have addressed that. Why didn’t they?
Patricia K. Coyle, MD, FAAN, FANA: It’s quite backward. It’s quite backward. I don’t understand. They don’t differentiate.
Peter L. Salgo, MD: Do you know why?
Maria Lopes, MD, MS: Well, I think it’s an opportunity to move beyond where we are in terms of the specificity coding, which we’ve seen from many other parts of the body. How do we evolve into the next version of ICD, which hopefully does capture the subgroups?