Treating Patients With NMOSD: Successes, Challenges, and Looking Ahead
In this video, Mirla Avila, MD, discusses how managing neuromyelitis optica disorder has evolved in the past decade, patient access to FDA-approved treatment options for neuromyelitis optica spectrum disorder (NMOSD), the challenges associated with diagnosing NMOSD, research gaps that remain, and what's on the horizon regarding future treatment options.
Additional Resource:
Shumway CL, Patel BC, Tripathy K, et al. Neuromyelitis Optica Spectrum Disorder (NMOSD) [Updated 2024 Jan 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Accessed June 5, 2024. https://www.ncbi.nlm.nih.gov/books/NBK572108/.
Mirla Avila, MD is an associate professor of neurology at the Texas Tech University Health Sciences Center (Lubbock, TX)
TRANSCRIPTION:
Mirla Avila, MD: I'm Dr Mirla Avila, I'm an associate professor here at Texas Tech University Health Science Center. I'm also currently the interim chair and the director of our Neurology Department, as well as director of the Comprehensive MS Care Center at Texas Tech.
Consultant360: What is neuromyelitis optica disorder (NMOSD)?
Dr Avila: So neuromyelitis optica disorder, or NMOSD, it is an autoimmune disorder in which basically your immune system, which is supposed to be targeting bacteria viruses, directs its effort against a part of your body. In this case is aquaporin 4 (AQP4), which is a water channel. And what happens is that this aquaporin 4 is highly expressed in the optic nerve and the spinal cord but also in other areas of the brain. So once the immune system attacks these areas, it causes damage and eventually demyelination to those areas.
C360: During the past decade, the management of NMOSD has evolved significantly. What is the care like now for patients with NMOSD, and how has it changed in your view?
Dr Avila: Thankfully the care has changed in a good way. So, we know about NMOSD since the 1800s when it got its first name, it was called Devic's disease. And now we know it's more of a spectrum because there are many areas that we didn't know back then, but do now. But for many reasons, we didn't have treatment options until 2019. Before then, we had to treat patients with medications that were not FDA approved and did not have all the study and research behind as the ones that now we have. So thankfully with the new therapies that we have we can keep patients stable. Still, it is sometimes difficult to diagnose, unfortunately. There still needs to be awareness even within providers. And sometimes there's a delay in the diagnosis, and that can be reflected with disability. It is a disease that once it attacks, it can lead to disability because it can be a very aggressive attack. So that is why it's so important for us to diagnose early and to place a patient in one of these therapies.
C360: While having multiple FDA-approved treatment options is always a good thing, is accessibility an issue for patients with NMOSD? What are the challenges associated with these treatments?
Dr Avila: Some of the challenges that at least I face in my area is that we are a referral center and there's areas from New Mexico actually that come to other areas in Texas that come here to our center and the coverage of the drug is not that much of an issue because the companies actually help out if they have a high copay they can give a zero copay or even free drug. The difficulty sometimes is with patients being traveled either to an infusion center or patients traveling to get here. So most of the challenges that I have seen are because of delay in the diagnosis to get patients started or difficulty for the patient to continue their follow-up. Sometimes that may be because of the area where they live in. And this is just a follow-up to that in terms of challenges.
C360: Do the similarities between multiple sclerosis (MS) and NMOSD contribute to that delay in diagnosis?
Dr Avila: That is a great point. Many times, yes, patients can be misdiagnosed with MS before they are diagnosed with NMOSD, and the concern is that a few or several of the MS medications could actually worsen NMOSD, except for the B-cell therapies that now are being used also in MS. But sometimes there's just a delay in the diagnosis because NMOSD affects more women; it's more common in women, which is 9 to 1 versus MS, which is 3 to 1. Also, with MS, patients are diagnosed when they are between 20 and 30 years old, and NMOSD, it’s between 40, even 50, 60 years old. So patients are older and have other comorbidities. So what I have seen is that sometimes they may present to a ER and they're misdiagnosed with a stroke or another neurological problem before they're considered to have NMOSD.
C360: When a new treatment like ravulizumab is approved by the FDA, what is that conversation like with your patient?
Dr Avila: Yeah, so usually I bring up the options to patients. It’s different for MS because you even see commercials from MS medications and the TV. But NMOSD is a rare disease, so it's not something that we usually see. So many times patients learn about the therapies when they go to see their doctor. And the thing with that is that if the neurologist is not up to date or not really confident on the new therapies, they may not even offer this. So that's why also educating our peers, general neurologists, is so important. And it's understandable the field in neuroimmunology is growing very fast. So overnight we're getting new medications approved for NMOSB and for MS. So if you're not in this field, that's subspecialty, it's easy to get a little bit confused with all the different new therapies and to know how do I prescribe it? How do I monitor it? What are the pros and cons of each medication? So that's why I feel that part of our job as neuroimmunologists to educate the fellow neurologists that are also treating these patients.
C360: Is there anything on the horizon for the treatment of patients with NMOSD? Any research gaps that still need to be filled?
Dr Avila: So, we really need therapies that will repair damage. And this is not only for NMOSD, but also for MS. We have now good therapies to prevent, but we don't have good therapies to repair. So I think that is something that we really need for both of these disorders. For NMOSD, another thing that we see is that there are disparities in some ethnic populations, in particular African descent or Hispanics that have a more aggressive course. And we still don't really understand why that is. So I think also more research towards minority or groups is needed. It will help us to understand and know how to treat these patients better.