Wigs Aren’t Mandated Under Medicare, But I Want To Change That

I've had alopecia areata — a condition which sees the immune system attack hair follicles, resulting in hair loss — since I was five years old. Now aged 16, I'm the co-founder of the Alopecia Justice League, and I'd like to take you on a hair advocacy adventure.

For the past 11 years of my life, I've worn a wig. Much like a chameleon, it was tied into pigtails for the first day of school, put into a French twist for a dance show and styled for big occasions. Regardless of how you wear a wig, for many experiencing hair loss like me, access to hair is imperative to self-esteem and mental health. You see, my wig allowed me to embrace my condition as a little girl. I often watched my friends style their hair for dances, braid it for sports and even sit through lice checks, all of which encouraged acceptance.

In elementary school, my alopecia grew more severe and I lost more hair. During the transition to a wig, I never directly addressed my condition with my classmates. I figured that showing up to school one day in ponytails and the next in a bandana pretty much answered their questions.

Nonetheless, while my wig afforded me some opportunity to fit in with my classmates, I still felt different. I was so appreciative of the security my wig offered but frustrated with having to wear it in the first place. Specifically, the possibility of my wig slipping or being pulled off was always at the forefront of my mind. There were so many logistics I had to consider beforehand to feel comfortable and secure. These constant worries can take a toll on you.

One day, though, my mom came up with a fantastic idea: a wig party. She showed up one day with a huge bag full of all kinds of wigs. My classmates, one by one, warmed to the wigs and began trying them on. Suddenly there was a sea of wigs and my entire class was wearing one! At that moment, I felt an unfamiliar feeling. I went from being the only one who wore a wig to one among many. It made me feel included, excited and nervous all at the same time. Just as I am fortunate to experience, my classmates also had the choice of which wig they wanted to wear, allowing them to express themselves as they wished. The wig party made both my classmates and I realize that wigs can be a source of excitement and creativity rather than weakness.

For a long time, I thought that wearing a wig meant that I was hiding my alopecia. But I soon realized I felt empowered by them. As I became more comfortable exploring different styling avenues with my wig, I began to open up more about my condition to my classmates and friends. This is exactly why the Alopecia Justice League (AJL) firmly believes that everyone should be empowered to choose their headwear, all without facing financial hurdles. And now is the best time to take action.

More than 6.8 million Americans are impacted with alopecia, according to the National Alopecia Areata Foundation. As a result, the AJL is trying to pass a bill — H.R. 5430. This would mandate insurance coverage for cranial prostheses, also known as wigs, for those with alopecia under the federal health insurance program, Medicare. Why? Currently, Medicare does not recognize wigs as durable medical equipment — and millions must consider if they have the ability, comfort, or privilege.

Co-founded alongside New York-based dermatologist Dr. Kristen Lo Sicco and Emmy-winning content creator Lindsey Sullivan, the AJL aims to raise awareness for alopecia as well as equip constituents with tools to advocate for empowering hair loss legislation.

Alopecia is a general term to simply mean hair loss, but sometimes it is used to describe alopecia areata (or AA) explains Dr Katerina Svigos of the AJL. "However," adds Dr Svigos, there is a difference. "Alopecia areata is a specific type of alopecia, an autoimmune-mediated hair loss." According to Dr Lo Sicco, "Alopecia areata is caused by a complex mix between genetics and external factors," But it's a condition which doctors are still learning about through research.

The AJL's Téa Cotronis explains, "The mental can affect the physical." Whenever a stranger addresses my condition, they typically do so from a place of ignorance or horror. Whether it's the insensitive questions or looks of unease, these responses have been a part of my everyday life for more than a decade. I have been able to navigate most uncomfortable situations in my life.However, at times I’m overwhelmed by the constant reminders that I’m different. Some days, I feel so self conscious that it's hard to look in the mirror. It can be difficult to practice self-love when so many equate baldness to unattractiveness. I've realized that most people subconsciously equate the two because they lack awareness.

Regardless, the prevalence of this mindset makes it easy for us, individuals with hair loss, to feel isolated in our struggles. Because AA manifests itself physically, many deem it solely a cosmetic condition using the common remark, "it's just hair." This dismissive attitude undermines alopecia’s mental toll and leads to increased risks of anxiety and depression. 

Through all the highs and lows, I've learned that being authentically me makes me feel the most beautiful. I'm authentically me regardless of what I wear — whether a bandana, hat or a wig — because I feel confident expressing my character. The privilege of having a choice in my hairstyle has instilled in me the confidence to help others face the stigma surrounding baldness. Rarely do you see someone associate baldness with beauty or femininity. For women and girls especially, so much emphasis is placed on our hair. I really felt when I was younger. 

"Bald people, whether from alopecia areata or another condition, should not have to feel like we're breaking a social norm for being who we are," says Mikayla Mango, a member of the AJL. And I agree. Navigating this world continues to be challenging, but when I first became familiar with this legislation, I knew I was in a place to help my community. 

Despite the condition's psychological toll, remedies to help alleviate the struggle, such as wigs, are incredibly costly. I still think about my first visit to the wig salon. Wigs of all lengths, colors and styles encircled a red patent leather chair which I was invited to sit in. I was used to the polyester wigs from Party City, rumpled and packaged in a hair net. The typical wig costs around $50, but the quality reflects this. For the sake of both comfort and durability, those with hair loss often turn to high-quality materials, specifically human hair, where prices tend to start at $1,000. This salon's wigs, made from human hair, seemed fit for any movie star or Disney princess and certainly made me feel like one. Nonetheless, the fantasy came with a hefty price tag: $2,500, to be exact, which required upfront and out-of-pocket payments.

But it's crazy, right? Those who experience hair loss are not wearing wigs as one would for a Halloween costume. It's not a matter of 'looking cool' but feeling comfortable in our skin. We wear them for the entire school day, work day, and even on days off. It's not a matter of looking cool, but feeling comfortable in our skin. My wig has even helped to soothe the pain I have felt from people's reactions to my alopecia. For once, I could walk down the street without glares and go to a restaurant without being misgendered. Slowly but surely, my wig has helped to restore my self-image during my formative years — and I know I'm not alone. That's why I believe wigs must recognised under Medicare.

It only takes one story, one voice or one interaction to further the efforts of the bill, H.R. 5430. The Alopecia Justice League strives to dismantle the belief that advocacy is difficult and not impactful. It doesn't matter how old you are, where you live or how experienced you are. You have the power to garner your representatives' support for this bill. 

Happily, the strong support during Alopecia Awareness Month in September garnered much support for H.R. 5430 in the House. In addition to celebrating this achievement, the next step is to obtain more co-sponsors for the bill. Once Medicare is mandated to cover wigs, private insurance companies will likely follow suit. For more information on empowering hair loss legislation, visit the resources page on AJL's website. But this is how you can help in just under five minutes:

1. Identify who your representative is using your zip code.
2. Locate your rep’s contact info from the contact page of their website. This website can be found by clicking your rep’s name after entering your zip code on findmyrep.com 
3. Craft an email advocating for H.R. 5430 using the scripts on AJL's page, courtesy of NAAF.
4. Hit send and create change.

I started the Alopecia Justice League to spark conversation around alopecia and to achieve legislative change for the community. This article is dedicated to all wig lovers and hair loss beauties. Our struggles are real, and it's time wigs are recognized beyond the purpose of cosmetic enhancement. I want to echo that it's all about choice — and offering access to that choice. Furthering the efforts of bill H.R. 5430 is only the beginning of raising awareness and celebrating the alopecia community.