Unscripted – Alopecia Areata: Understanding the Disease, Its Impact, and Emerging Treatments

Show Notes

In this episode, we talk with Arash Mostaghimi, MD, MPA, MPH, Vice Chair of Clinical Trials and Innovation, Brigham & Women's Hospital Department of Dermatology. Dr. Mostaghimi discusses alopecia areata—an autoimmune disease that causes patchy or complete hair loss—its inflammatory basis, how severity is measured, and the profound psychosocial impacts on patients and families. He also reviews the latest FDA-approved therapies, evolving treatment guidelines, and what patients, clinicians, and payers should know as new options reshape care.

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Transcript

Fred Goldstein:
Welcome to Unscripted, the AMCP podcast—a look inside managed care pharmacy. Listen in as experts explore the challenges, innovations, and opportunities shaping health care for millions of patients. 

Fred Goldstein:

This episode is sponsored by ABV Inc. ABV: we find answers that make life better for patients and our world. September is National Alopecia Areata Awareness Month, and today we’ll discuss alopecia areata—its impact on patients, treatment guidelines, and the emerging pipeline—with Dr. Arash Mostaghimi. Dr. Mostaghimi is Associate Professor of Dermatology, Vice Chair of Clinical Trials Innovation, Director of the Dermatology Inpatient Service, and Co-Director of the Complex Medical Dermatology Fellowship at Brigham and Women’s Hospital. Welcome, Dr. Mostaghimi.

Dr. Arash Mostaghimi:
Thank you so much for having me. It’s a pleasure to be here.

Fred Goldstein:
Let’s begin with some background on alopecia areata.

Dr. Arash Mostaghimi:
Alopecia areata is an autoimmune disease that causes hair loss. “Alopecia” means hair loss; “areata” refers to the round patches that are a common clinical feature. The scalp is most commonly involved, but any hair-bearing area can be affected. Many people have one or two patches. In others, it can progress to involve the entire scalp—alopecia totalis—or all body hair—alopecia universalis. It can occur at any age, with peaks in childhood and again in the 50s–60s. Crucially, this is an inflammatory disorder. The skin can look normal because the inflammation is around the hair follicle. Inflammation weakens the hair, the hair sheds, and persistent inflammation can prevent regrowth.

Fred Goldstein:
People sometimes assume it’s cosmetic, but there’s underlying inflammation. How do you classify severity?

Dr. Arash Mostaghimi:
Severity is challenging. Physical symptoms are usually minimal—around 10–15% report burning or itching at sites of hair loss. Loss of eyebrows or eyelashes can cause irritation from sweat or dust. Unlike conditions with constant itch or pain, the major burden here is psychosocial. Hair is central to identity and self-presentation. Patients can feel they’ve lost aspects of personality or gender expression, which affects relationships, school, and work, and can be associated with anxiety and depression. So quality of life and mental health are part of severity. Historically, trials used more than 50% scalp hair loss as “severe,” which is somewhat arbitrary. We’re moving to a multidimensional approach often summarized as the Alopecia Areata Severity Score: mild is under 20% scalp hair loss; moderate is 21–50%; severe is 51–100%. We also “up-stage” severity for rapid progression, refractoriness to treatment, significant psychosocial impact, or facial hair involvement—eyebrows, eyelashes, beard. For example, someone with 25% scalp loss who stops going to school due to distress should be considered severe overall.

Fred Goldstein:
How should families and support networks think about this?

Dr. Arash Mostaghimi:
Experiences vary widely. Some individuals lose all their hair and aren’t distressed—they live fully, and we shouldn’t pathologize that. Others have small patches with profound impact. For instance, a patient with less than 5% hair loss postponed her wedding for two years because a specific hairstyle would reveal patches. It affects families too. As a parent of a daughter with alopecia areata, I’ve seen the worry about bullying, social development, and the future. Psychosocial effects ripple through the household.

Fred Goldstein:
Where are we with treatments?

Dr. Arash Mostaghimi:
We’re in a golden age—though still early. Five years ago there were no FDA-approved treatments; now there are three oral JAK inhibitors approved for severe disease. We still lack approvals for mild or moderate disease. The approved agents are: baricitinib (Olumiant), a JAK1/2 inhibitor taken once daily at 2 or 4 mg; ritlecitinib (Litfulo), a JAK3/TEC inhibitor taken once daily at 50 mg and currently the only agent approved for adolescents 12 and older; and deuruxolitinib, a JAK1/2 inhibitor taken as 8 mg twice daily. All JAK inhibitors carry a class boxed warning. They’re effective for many patients, though not all—comorbidities and individual response guide selection. Still, having real options is a major advance.

Fred Goldstein:
What about guidelines now, and what’s coming?

Dr. Arash Mostaghimi:
I’m chairing joint U.S. guidelines from the National Alopecia Areata Foundation and the American Hair Research Society. They consolidate evidence on the new FDA-approved therapies for severe disease and contextualize them against older, off-label treatments used historically. They’re in final development and expected soon.

Fred Goldstein:
Is timing of treatment unique in this disease?

Dr. Arash Mostaghimi:
Yes. Unlike psoriasis, where starting later may yield similar results, alopecia areata generally responds better and faster with earlier treatment. Two main predictors of response are severity—more loss is harder to treat—and the duration of the current episode, not lifetime since diagnosis. Crossing roughly four years in the current state is associated with lower response rates and slower regrowth. Even long-standing cases can regrow hair, but earlier initiation—often with more aggressive therapy up front—improves options and outcomes.

Fred Goldstein:
How should managed care plans evaluate this?

Dr. Arash Mostaghimi:
This is not a cosmetic condition. A better analogy is breast reconstruction after cancer—restoring function and psychosocial well-being. Patients may drop out of school, delay major life events, or become housebound. When hair regrows, it can be transformative for functioning and mental health. Comorbidities are common—atopic dermatitis, vitiligo, thyroid disease. Earlier treatment likely reduces psychosocial burden and may influence other comorbidities. From a parity standpoint, the psychosocial impact places severe alopecia areata alongside moderate-to-severe psoriasis or atopic dermatitis in justifying access to systemic therapy.

Fred Goldstein:
What’s your message to patients, clinicians, and—if you’d like—payers?

Dr. Arash Mostaghimi:
Patients: there are new options. If you were told in the past that nothing would help, reconnect with dermatology and see if you qualify—especially earlier in your journey.
Clinicians: it’s time to move beyond chronic off-label regimens like long-term methotrexate, cyclosporine, or prolonged steroids. JAK inhibitors require shared decision-making and monitoring, but they also offer clear benefits. Our forthcoming guidelines support starting JAK therapy earlier in moderate-to-severe disease.
Payers: access is essential. Coverage that recognizes the profound functional and psychosocial impact improves outcomes and likely reduces downstream costs.

Fred Goldstein:
Dr. Mostaghimi, thank you for the insights—especially on broadening how we evaluate impact and access.

Dr. Arash Mostaghimi:
Thank you. I appreciate the conversation.

Fred Goldstein:
Thanks for listening to Unscripted, the AMCP podcast. This episode was sponsored by ABV Inc. For more information, visit abv.com.