Alison Lee felt a slight tug at the back of her head.
Her dark wig slipped off in an instant, revealing her hairless scalp to the shining sun, the cool breeze, and her entire third-grade class during recess.
She grabbed at her head and turned around to see her classmate hanging the hairpiece in his hands.
Lee, now 17, remembers the incident as vividly as if it were yesterday. It’s one of the many memories around her alopecia areata, an autoimmune disorder that started causing her hair to fall out at age 5.
“Having alopecia as a child is a unique experience when you’re growing up and still trying to figure out who you are and establishing different parts of your identity,” said the New York City native.
There have never been any real treatment options for children and teens with alopecia areata. But that’s about to change as the Food and Drug Administration on Friday approved the first and only medication on the market for the skin disease available to Americans under 18.
“It’s really a game changer,” said Dr. Kristen I. Lo Sicco, associate professor of dermatology at NYU Langone Health, who is also Lee’s doctor. “It’s important for a child – especially as they’re developing – to have their sense of self and regain their sense of confidence.”
New treatment for teens with alopecia
The FDA approved the once-daily pill called Litfulo, created by pharmaceutical giant Pfizer, for people 12 and up to treat severe alopecia areata, or at least 50% hair loss.
About 23% of patients regained 80% or more of hair coverage on their scalp after six months of treatment compared to only 1.6% of participants in the placebo group, according to trial results published by The Lancet in April. The most common side effects reported included headache, diarrhea, acne, rash and urticaria, a skin rash defined by itchy, red or skin-colored welts.
The only other medication for alopecia on the market is Olumiant, which was originally approved for rheumatoid arthritis but received approval for alopecia in adults June 2022. It’s important for alopecia-specific therapies to receive official approval because they’re more likely to be covered by insurance companies, Lo Sicco said.
FDA approval “will help substantiate alopecia areata as more than just something that’s cosmetic, which has been considered that for years by insurers who may not want to cover the therapies,” she said.
Lack of coverage would certainly put the treatment out of reach for many Americans. A full year’s supply has a list price of $49,000, according to Pfizer. It falls in line with other dermatologic treatments like Olumiant, which is more than $2,600 for a month’s supply of 2-milligram pills.
What is alopecia areata?
Alopecia is a medical term to describe general hair loss. The condition gained more awareness after Jada Pinkett Smith spoke about it on an episode of her Facebook show “Red Table Talk” last year, detailing her experience with hair loss.
It’s unclear if Pinkett Smith has alopecia areata, which is a specific skin disorder that causes the body’s immune system to attack hair follicles. It’s distinguished by circular patches of hair loss and can result in a complete loss of scalp hair, eyebrows, eyelashes, facial hair and body hair.
Experts say alopecia areata is more common than people may think. It’s estimated about 1 in every 1,000 U.S. children is affected by the skin condition, studies show.
Alopecia areata behaves similarly in both adults and pediatric patients, Lo Sicco said. But with kids and teens, the social and emotional impacts of alopecia can also affect caretakers and other family members.
“It goes further than the patients themselves … Some parents feel guilty because they feel it’s their fault and it’s not,” she said. “Hopefully, (this drug) will help families and parents have improved quality of life, too.”
Other treatments for alopecia patients
Prior to Litfulo and Olumiant, no drug was specifically approved by the FDA for alopecia areata. The traditional treatment has been monthly steroid injections. Studies have shown in most cases, people regrow some of their hair, but the gains are typically lost if patients discontinue treatment, as many do because the shots directly into bald spots are painful.
Patients with extensive hair loss also have been given off-label immunosuppressants, experts say, but the treatment is not very effective and often comes with many side effects.
For pediatric patients, the choices are more limited because children generally hate shots and some parents feel uncomfortable giving their kids immune-suppressing medication, Lo Sicco said.
‘Everybody struggling with hair loss deserves the choice’
Lee wants to be a role model for her younger sister Madeline, 13, who also has alopecia areata.
One of the most important things she’s tried to teach Maddy is to “look for a way to find joy in having alopecia,” whether it be through cosmetics, hats or other means of expression.
“One of the great things about having alopecia is that you have so much freedom in how you can choose to express yourself,” Lee said.
She’s also co-founded the Alopecia Justice League alongside Lo Sicco, her mother Julie Yoo, and others affected by the skin condition. The organization is behind the legislative fight to get cranial prosthetics, commonly known as wigs, to be covered by Medicare.
Lee hopes her efforts create a better future for her sister and other girls like her.
“My passion for spreading awareness for alopecia stem from the many years I’ve had to endure the consequences from the lack of awareness,” she said. “Everybody struggling with hair loss deserves the choice.”
Follow Adrianna Rodriguez on Twitter: @AdriannaUSAT.
Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.
