Opportunities for Advancing Alopecia Areata Care Through Equitable Access

This content is sponsored by Eli Lilly and Company.

The expression “every cloud has a silver lining” took center stage following an incident at this year’s Oscars. The silver lining? A much needed conversation about alopecia areata (AA) and the burden it can present for the 700,000 Americans living with the disease was brought to the forefront. Because the primary symptom is hair loss, AA is frequently perceived as a cosmetic issue; in fact, AA is a debilitating autoimmune disease that can cause a high degree of multifaceted impact.1

Those of us who devote our careers to improving the lives of people with 1 or more autoimmune diseases bring an extraordinary level of passion to our work. Above all, we understand the uniquely complex and difficult challenges faced by people living with these diseases. When the body attacks itself, a person’s life can profoundly and fundamentally change, becoming defined by physical ailments, psychological stress, and financial strain, as well as frustration with a health care system that can sometimes fall short.

The scientists and researchers engaged in biopharmaceutical innovation are working diligently to develop potential treatments, but it is just as important that America’s health care infrastructure recognizes the struggles such diseases present and takes steps to mitigate their burden.

Far from a cosmetic inconvenience, AA is a serious, recurring autoimmune disease that affects people of all ages, even children. It is not to be confused with pattern baldness or age-related hair thinning. In patients with AA, the immune system attacks the hair follicles. Although the average age of disease onset is 30 years, AA can occur at any moment in life and can be associated with far-reaching symptoms, from patchy hair loss on the scalp to the complete loss of all head and body hair, including eyebrows and eyelashes.2 Unfortunately, there currently are no FDA-approved treatments for AA.

I am a dermatologist by training, and I have seen the cruelty of this disease. Many people who develop AA experience more than 1 episode of hair loss.3 Imagine the impact of losing your hair, seeing it grow back, and then having to experience this type of hair loss again. This unpredictability is 1 of many variables that can lead to significant emotional burden, including anxiety and depression.4 Research shows that the negative impact of AA on a patient’s health-related quality of life is on par with that of other chronic, relapsing autoimmune diseases, including psoriasis and atopic dermatitis.3 AA is not commonly recognized as an autoimmune disease, and hair loss due to AA can often prompt social stigma and affect an individual’s self-confidence and relationships with others.

The lives of patients with AA also are complicated and made more difficult by the likelihood of physical comorbidities.5 A substantial percentage of patients with AA live with other diseases, including hyperlipidemia, hypertension, thyroid disorders, asthma, eczema, psoriasis, and rheumatoid arthritis.6 Additionally, hair loss makes patients with AA more susceptible to sunburn, eye irritation, allergies, and difficulty in regulating body temperature.2

Importantly, the physical and psychosocial toll of the disease can be compounded by significant financial hardships.7 Most health insurers do not consider existing treatments for AA to be medically necessary; thus, patients must cope with considerable out-of-pocket costs.4

Although there currently are no FDA-approved treatments for AA, health care providers frequently prescribe medications such as topical steroids or antihistamines or recommend acupuncture.8 Considering the aforementioned comorbidities—which are often treated with other therapies—a person living with AA may face a substantial financial burden, depending on their health insurance and out-of-pocket costs. These costs do not account for the lost productivity a person may experience because of the disease or the money spent for wigs and other concealments that are not considered to be medically essential by Medicare and most private insurers.

While we are working to develop safe and effective therapeutics for AA, it also will take the right decisions by policymakers and health care payers to ensure that potential treatments, if approved by the FDA, will be accessible. The Centers for Medicare & Medicaid Services deem other dermatologic conditions (eg, acne, psoriasis) to be noncosmetic; therefore, FDA-approved treatments for these conditions are covered by Medicare. AA should be treated similarly.

Important steps can and should be taken to strengthen access to treatment for AA patients. These include:

  • classifying future FDA-approved treatments for AA as drugs covered under the Medicare Part D program;
  • ensuring payer coverage of FDA-approved treatments used for medically accepted labeled indications, which will allow health care professionals to prescribe appropriate treatment options; and
  • removing access barriers to the treatment of AA comorbidities; cost sharing should be affordable, and current policies prohibiting coverage for services related to hair loss should be rescinded.

At Eli Lilly and Company, we are committed to better lives for individuals struggling with AA. I strongly believe that focused research will produce new treatment options. Beyond medical science, though, we need a greater understanding and a more informed, compassionate approach toward people struggling with this disease. This begins with recognizing AA as an autoimmune disease that is associated with a considerable physical and psychological burden.

Lotus Mallbris, MD, PhD, is Vice President, Global Clinical Development and Medical Affairs for Immunology, Eli Lilly and Company.

References

  1. Benigno M, Anastassopoulos KP, Mostaghimi A, et al. A large cross-sectional survey study of the prevalence of alopecia areata in the United States. Clin Cosmet Investig Dermatol. 2020;13:259-266. doi:10.2147/CCID.S245649
  2. Pratt CH, King LE Jr, Messenger AG, Christiano AM, Sundberg JP. Alopecia areata. Nat Rev Dis Primers. 2017;3:17011. doi:10.1038/nrdp.2017.11
  3. Huang KP, Mullangi S, Guo Y, Qureshi AA. Autoimmune, atopic, and mental health comorbid conditions associated with alopecia areata in the United States. JAMA Dermatol. 2013;149(7):789-794. doi:10.1001/jamadermatol.2013.3049 Published correction appears in JAMA Dermatol. 2014;150(6):674.
  4. Liu LY, King BA, Craiglow BG. Alopecia areata is associated with impaired health-related quality of life: a survey of affected adults and children, and their families. J Am Acad Dermatol. 2018;79(3):556-558.e1. doi:10.1016/j.jaad.2018.01.048
  5. Strazzulla LC, Wang EHC, Avila L, et al. Alopecia areata: disease characteristics, clinical evaluation, and new perspectives on pathogenesis. J Am Acad Dermatol. 2018;78(1):1-12. doi:10.1016/j.jaad.2017.04.1141
  6. Lee S, Lee H, Lee CH, Lee WS. Comorbidities in alopecia areata: a systematic review and meta-analysis. J Am Acad Dermatol. 2019;80(2):466-477.e16. doi:10.1016/j.jaad.2018.07.013
  7. Spano F, Donovan JC. Alopecia areata: part 1: pathogenesis, diagnosis, and prognosis. Can Fam Physician. 2015;61(9):751-755.
  8. Li SJ, Mostaghimi A, Tkachenko E, Huang KP. Association of out-of-pocket health care costs and financial burden for patients with alopecia areata. JAMA Dermatol. 2019;155(4):493-494. doi:10.1001/jamadermatol.2018.5218