"Please Be Considerate of Children Wearing Wigs": Young Lee Builds a 'Warm Fence' for Children with Pediatric Alopecia Areata [Interview with 100 Hair Loss Experts]

[Financial News] Alopecia areata originates within the body. This is because it is an autoimmune disease. However, when hair falls out, people offer simple consolation, saying, "So what if your hair falls out a little?" Treatment is not easy either. Some treatments are harsh with no progress, while others demand a price so high that one cannot even dare to start them. What if this nasty disease were to strike a child? Overwhelmed by the weight of a condition that is difficult even for adults to bear, the child has no choice but to withdraw into themselves.
Professor Young Lee of the Department of Dermatology at Chungnam National University Hospital has long stood at the forefront of removing treatment limitations and institutional shadows, having observed the plight of children and families suffering from pediatric alopecia areata. Professor Lee emphasizes that society and the state must become a warm protective shield for pediatric patients who have been neglected due to the prejudice that the condition is merely a cosmetic issue rather than a life-threatening one. We met with Professor Lee on the 11th to hear his desperate voice.
― You have treated pediatric alopecia areata. I have heard that the reality is harsher than for adults.▲ Adult patients face the disease with a somewhat established sense of identity. However, children lack not only a sense of identity but also an understanding of the disease itself. In this state, they must cope with their unfamiliar appearance and the stares directed at it. Stress can lead to self-harm or dropping out of school during their school years. It is not just the child who suffers; parents also break down, unsure how to handle their child's pain. In fact, a domestic study showed that in households with children suffering from severe alopecia areata, the 'social withdrawal' scores of both the child and their guardians were significantly higher than those of the general population. Pediatric alopecia areata threatens a child's social development and their home environment.― A study on the 'Quality of Life of Patients with Alopecia Areata' by a research team at Chungnam National University Hospital found that pediatric and adolescent patients with alopecia areata suffered the most severe distress in the area of 'stigmatization.'▲ This study compared the quality of life of 102 patients with alopecia areata and 82 control subjects. According to the study, among patients with alopecia areata, adolescents and young adults aged 11 to 25 showed significantly greater impairment in the areas of functioning, emotion, self-confidence, and stigmatization compared to patients aged 10 or younger or 25 or older. Regardless of culture, this is the period when individuals begin social life and form their self-identity. Sensitivity regarding appearance is also at its highest. There are also reports that the prevalence of major depressive disorder or obsessive-compulsive disorder in pediatric and adolescent patients reaches up to 50% and 30%, respectively.
The suffering of parents is by no means insignificant. According to the results of a nationwide multi-center study conducted by the Korean Hair Society, the Family Dermatology Life Quality Index (FDLQI) of families of children with severe alopecia areata averaged 19.2 points, indicating a level of "very significant impact." Families with adolescent children felt a greater burden than those with pediatric children.
― The onset itself threatens the child and the family, but I've heard that the younger the age at which it occurs, the worse the prognosis.▲ That is correct. Children who develop alopecia areata during childhood, particularly before puberty, have a poorer prognosis and are more difficult to predict compared to adults. Alopecia areata is an autoimmune disease in which the 'immune privilege' of hair follicles breaks down, causing immune cells to recognize the follicles as foreign substances and attack them. The fact that it develops at a young age implies a strong genetic and immunological predisposition, and treatment options are also more limited compared to adults.
If treatment becomes limited, the period of neglect is prolonged, which is equivalent to a longer duration of the disease. However, as the condition persists, the response to treatment declines, and there is a high risk of progression to alopecia totalis or alopecia universalis. The natural recovery rate for alopecia totalis or alopecia universalis is very low.― Does the fact that there are limitations to treatment mean that the risk of side effects is high?▲It is not merely a matter of side effects. Previously, systemic immunosuppressants such as steroids and cyclosporine were used for moderate to severe alopecia areata, or diphenylcyclopropenone (DPCP) contact immunotherapy was administered. However, in the case of steroids, injectable treatment is difficult to apply to patients with extensive hair loss or young children due to pain and scalp atrophy, while oral prescriptions carry systemic side effects such as weight gain, edema, hyperglycemia, and hyperlipidemia with long-term use, and there is a high risk of recurrence upon discontinuation. Cyclosporine can also cause side effects such as nephrotoxicity, hypertension, hyperlipidemia, and hirsutism with long-term use.
Although diphenylcyclopropenone (DPCP) immunotherapy is relatively safe, many hospitals are abandoning its use due to issues such as approval by the Ministry of Food and Drug Safety. Recently released Janus kinase inhibitors (JAK inhibitors) are highly effective and can be used by individuals aged 12 and older, but they are not covered by health insurance, resulting in a significant financial burden. In summary, the reality is that patients are either continuing treatments that do not guarantee efficacy due to medications that are burdensome for growing children, or are unable to use the desired drugs due to financial constraints or systemic limitations.
― I imagine this presents a significant dilemma. What do you think should be prioritized for the treatment of children with alopecia areata?▲ I would like to cite a recently launched new drug, a Janus kinase inhibitor (JAK inhibitor), as an example. This treatment is the first targeted therapy that precisely targets the pathogenesis of alopecia areata. In a global clinical trial conducted by Eli Lilly and Company, in which our research team also participated, it was confirmed that when the JAK inhibitor baricitinib was administered to patients with severe alopecia areata for 36 weeks, the area of hair loss decreased to less than 20% in 35–39% of the patients.
This medication must be taken consistently to maintain its effectiveness. Clinical trials have shown that recurrence begins within 8 weeks of discontinuing treatment, and 80% of patients lose the therapeutic effect three years after stopping. However, as explained, many hesitate to even start treatment due to the high cost and lack of health insurance coverage. Ultimately, what children with severe alopecia areata need is an environment where they can receive continuous treatment for a sufficient period.― It appears that medical insurance coverage standards for the treatment of pediatric alopecia areata need to be institutionally reformed.▲ That is correct. In that regard, I find it very unfortunate that the reimbursement criteria for the JAK inhibitor baricitinib were newly established last July to target only 'adult' patients with severe alopecia areata. Baricitinib and ritlecitinib, which are available for use in adolescents aged 12 and older, were not included in this expanded reimbursement.
Furthermore, there are no domestic approvals for treatments specifically for children under the age of 12. Early intervention is crucial for pediatric alopecia areata, and the earlier intervention begins, the better the prognosis. However, families of these children are suffering in a blind spot where they must either bear the full cost of the medication themselves or lack access to treatment options. It is deeply regrettable that patients miss the opportunity for timely treatment due to economic barriers.― I heard that wig support is also urgent.▲ Wigs, and full wigs in particular, are an essential 'protective device' for children with alopecia areata. It is correct to describe them as a device rather than a 'decoration.' In fact, a study by the Korean Hair Society surveyed 40 children with severe alopecia areata and their families, and the results confirmed that after wearing wigs, the children's social withdrawal scores, as assessed by their parents, recovered to the level of healthy peers, and the children's quality of life index and family life index also showed significant improvement.
However, the cost of full wigs is a significant burden. Since children in their growth phase continue to grow, they need to get new wigs every six months to two years; however, because government support is limited, most rely on their own funds or the assistance of private and non-profit organizations. I believe that wigs should be institutionalized not as something "nice to have," but as an "essential support therapy."
― The Korean Standard Classification of Diseases and Causes of Death was recently revised. Won't there be some changes regarding the treatment of pediatric alopecia areata as well?▲ With the revision of the Korean Standard Classification of Diseases and Causes of Death (KCD-9) in 2026, unlike the previous system that integrated all cases of alopecia areata under a single code called 'other alopecia areata,' it is now possible to subdivide them into mild, moderate, severe, and unspecified categories. This enables clearer diagnosis and appropriate prescription. Furthermore, statistics that previously relied on estimation can now be compiled more accurately, which is expected to serve as a foundation for future policy design.
 
However, efforts to refine minor inconsistencies are still necessary. The mere subdivision of diagnostic codes does not guarantee improved access to treatment. There remains a multitude of challenges to be resolved, including support for assistive devices such as wigs, the expansion of coverage for alopecia areata treatments to include children and adolescents, the application of special calculation exceptions, and friction arising during the system design process.― Is there anything else you would like to say?▲ Pediatric alopecia areata is by no means a "non-life-threatening cosmetic condition." I hope we do not forget that it is an "autoimmune disease" that seriously threatens a growing child's self-esteem, social skills, and the quality of life for the entire family. I earnestly request that you pay attention to resolving institutional blind spots so that children do not withdraw from society due to illness during a time when their self-identity is in full swing, and so that they can receive appropriate treatment and grow into healthy members of society.
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