From nonadherence to insurance roadblocks, there is no shortage of challenges that clinicians face when diagnosing and treating multiple sclerosis in both pediatric and adult patients.

Neurology Learning Network spoke with Scott Otallah, MD, director, Pediatric MS and Demyelinating Clinic, Wake Forest School of Medicine, Salem, North Carolina, on-site at the 52nd Child Neurology Society Annual Meeting to discuss where the field stands and where it may be headed.

In Part 2 of this Q&A, Dr Otallah describes some of the challenges providers can expect to face when treating MS in pediatric patients as well as trends to keep an eye on in the near future.

Missed Part 1 of this interview? Find it here. For more expert insights and research updates, visit our Multiple Sclerosis Excellence Forum.

Brionna Mendoza, Associate Digital Editor, Neurology Learning Network: What are some common challenges that providers face when working with pediatric MS patients, and what are some strategies from your experience that you have to work around these issues?

Scott Otallah, MD: There's the challenges with the patients themselves, and then there's the challenges with insurance.

Insurance coverage is a big problem across the board in MS, because these therapies are so expensive and tend to be lifelong. Insurance companies want to dictate medical decisions and will often refuse reasonable care and require step therapy. For example, in adults you have to start on something like an injectable, which is much less highly effective, and slowly increase to more effective things once people have had relapses, therefore accumulating morbidity--that's incredibly frustrating.

I think that the whole field is moving towards more early aggressive therapy, and that will be an ongoing challenge with insurance companies. We have current trials in adults and hope to have similar trials in kids to demonstrate that early effective therapy makes a big difference in morbidity in the long run, and has impacts as well on the timing to the progression to secondary progressive MS.

The other big challenge we face that's more unique to pediatric MS, is when [kids and teens are in denial.] Most kids diagnosed with pediatric-onset MS are between 12 and 18, and the numbers tend to go up as you get closer to 18. So, we have more 15, 16, and 17-year-olds than we do 12, 13, and 14-year-olds. [But] when we have a parent to help us work through it and they're still under their parents' care, we can often get them to comply. There are compliance issues, especially in the age of injectables. That much worse in the age of oral therapies. With infusion therapies, we can give as infrequently as once every six months or less, we have much better compliance.

I've had too many patients who turn 18, think they're invincible and disappear and go off of medicine. It's tough because nowadays, we do such a good job controlling disease that they haven't had a relapse in 2, 3, 4 years--and so they question, did they really have MS? Maybe this was something that isn't going to recur. They may not have new symptoms or new lesions for years, because in pediatric-onset MS, most relapses happen in the first 2 years. There's a higher relapse rate in the first 2 years for pediatric patients than for adult patients. But after those first 2 years, even without therapy, relapses do tend to slow. They might only have a new lesion or a relapse every year or two, and in pediatric MS, there's only 1 relapse on average for every 10 lesions. That means you might not have an attack for 5 years, but you may be accumulating disability and you may also be having an increased rate of atrophy. So, I do find that age is a very big challenge and I try to prepare my patients carefully for it, but that is not always successful, unfortunately.

Mendoza, NLN: What trends do you anticipate affecting the field of pediatric MS in the near future that clinicians should keep an eye on?

Dr Otallah: I already referenced this, but I think we're going to move more towards early aggressive therapy, and a lot of those drugs are quite expensive and there will be new drugs coming out all the time. Thankfully, we have some that have gone generic, but unfortunately, sometimes that creates more expense for the families. When drugs are brand name, they're much more expensive for the insurance companies, but there are often co-pay programs supported by the pharmaceutical companies that make the copays for the families very affordable.

When the drug goes generic, those copay programs are often stopped. The generic medication companies may or may not have copay programs, and so patients’ copays can really skyrocket. It's similar to medication expense issues that span many disease entities and fields beyond neurology. But within neurology, we do have some of the most expensive medicines out there, and pediatric MS is certainly a part of that. So, funding expense is a larger healthcare issue, but I do think that that is going to be an ongoing struggle.

Mendoza, NLN: Lastly, what key takeaways about this topic would you like to leave with our audience?

Dr Otallah: I think that there is a lot of hope in this disorder, as there are in a lot of other child neurology disorders. One of the things that inspired me to go into this field was how much we can do for these patients and that we can now really aim for what's called no evidence of disease activity (NEDA), which means no new lesions and no new symptoms, no flares, et cetera. That's where I would try to put our focus, even though there are lots of challenges, primarily financial, but I think there's a lot more to come and a lot of drugs in the pipeline, which leaves me feeling very optimistic.

Scott Otallah, MD, is the Director of the Pediatric Multiple Sclerosis and Demyelinating clinic at Wake Forest School of Medicine in Winston Salem NC. He is also the Program Director for Child Neurology and the Clerkship Director for the Department of Neurology.