Closing Evidence Gaps in Managed Care for Pediatric Alopecia Areata: A Q&A With Brittany Craiglow, MD

Much of the clinical trial evidence for systemic alopecia areata (AA) therapies stops at age 12, leaving dermatologists to rely on off-label use and data borrowed from other pediatric indications for younger children. The field's standard efficacy measure, the Severity of Alopecia Tool (SALT) score, only captures scalp hair loss, leaving out eyebrow and eyelash involvement and the daily quality-of-life impact that patients and families say matters most.

In the third and final installment of a 3-part interview with The American Journal of Managed Care^® (AJMC^®), Brittany G. Craiglow, MD, FAAD, a board-certified, fellowship-trained pediatric dermatologist and associate professor adjunct of dermatology at Yale School of Medicine who also practices at Middlebury Dermatology in Connecticut, discussed where the pediatric AA evidence base is weakest, what outcomes trial end points are still missing, and the one change she would make to how managed care handles AA in children.

This transcript has been lightly edited for clarity.

AJMC: Where do you feel the evidence base for pediatric AA is still weakest, and how does that uncertainty affect your clinical decision-making today?

Craiglow: Our biggest need right now is data on patients under age 12 [years]. There are clinical trials happening, which is very exciting, but we do have data for Janus kinase inhibitors in other disease states in patients under age 12, so I think off-label use is actually really important for accessing medicines for kids; the data shows that the sooner you start, the better patients do. After a period of no hair or very severe hair loss, many patients are going to lose their opportunity to grow hair. If I have a 6-year-old who's had no hair since age 2, and I have to wait until they're 12 to treat them, the chance is gone. But if that patient had juvenile arthritis, I'd probably be able to get an appropriate medication covered and treat them appropriately.

Childhood is a hard time, adolescence is really hard, but we know that kids as young as 3 or 4 are forming their self-esteem and their self-concept. I have patients 3 and 4 years old who won't look in the mirror, whose peers won't play with them on the playground.

I had a patient recently whose mom said she asked her, "Am I ugly, Mommy?” This is a 4-year-old, because a kid at school told her she was ugly. These experiences that kids are having—how is that shaping their life? How is that shaping their view of the world? It can be really profound. It's really hard to grasp or try to understand if you haven't lived it, but talk to any family whose child is living with this, and it's first and foremost on their radar every day. You can't escape it. Even if somebody really didn't care about their hair, which everybody really does, the world still treats you differently. It's really hard to think of your child's life, the trajectory of their life, being steered in a totally different direction because of an autoimmune disease for which we have effective therapies, but because an insurance company didn't think that was worth treating.

AJMC: Beyond hair regrowth, as measured by SALT scores, what outcomes matter most to your younger patients and their families, and are those outcomes being captured in trial end points?

Craiglow: The SALT score is a very useful measure because it gives us an objective measure of hair loss, but for sure the patient experiences so much more than just the scalp. I think one of the most important things that's not captured is eyebrow and eyelash involvement; sometimes we see patients with relatively mild scalp involvement who are missing their eyebrows and eyelashes, and that can have a profound impact on the way they interact with the world, see themselves, and are treated by others. So, areas outside the scalp aren't captured by SALT.

There's also just how a person's day-to-day, their quality of life, is affected; that can sound like a touchy-feely, soft thing, but ultimately it's the most important thing. We want our patients to feel like they're living their life the way they did before they had AA. Everybody's different in terms of what SALT score change actually changes their life. It depends on how severe your hair loss was to start and where the hair loss is. Twenty percent hair loss on the back of your scalp may be really different from 20% hair loss right in the front. So, it's a useful measure, but there are a lot of things we're missing if we just look at SALT.

AJMC: If you could change one thing about how managed care currently handles AA in pediatric patients, whether in benefit design, prior authorization, or access, what would it be?

Craiglow: One thing that's really hard as a physician, and exceptionally hard for families, is when we get a denial saying this isn't covered because AA is "cosmetic." Talk about invalidating a family. This is an autoimmune disease; we understand the science, it's T-cell-mediated, and we have therapies that target the pathogenesis directly. I think the word "cosmetic" is really talking about enhancing appearance, and patients with AA aren't looking to be models; they're just looking to get back to normal. That's what we're doing in most of dermatology: patients with atopic dermatitis are looking to get back to normal; the same with psoriasis.

This argument for "cosmetic," applied only to hair, is unfair and untrue. AA is very different from, say, androgenetic alopecia in a 50-year-old man, but we sometimes see it lumped in and not covered globally. It's important to separate these things and look at who the patient is. I have many patients who have both atopic dermatitis and AA, and I'd say the majority of them, even if they had severe atopic dermatitis and mild to moderate AA, if I told them they could fix 1 thing, far and away they would choose their AA. I think that experience is often even more difficult than psoriasis. If I have a patient with 10% body surface area affected by psoriasis, I can get them a very expensive medicine, and, yes, that's really important. But I'd argue that kids with AA have their lives more impacted, in general, than that patient with 10% body surface area psoriasis.