Guest Blog: Alopecia Areata’s Watershed Awareness Moment at the 2022 Oscars
By: Gary Sherwood, Communications Director
No one saw it coming. That singular moment at the Oscars ceremony last March where a joke about alopecia areata was answered in memorable, if not controversial fashion. It was like a bright light being switched on in a dark room, and suddenly everyone was talking about the disease.
For those of us at the National Alopecia Areata Foundation (NAAF), it was a moment – and honestly a test of our communications skills – like none before. Our texts, voicemails, and inboxes were blowing up within minutes of the event. NAAF has three mission pillars: research to find a cure or acceptable treatment for alopecia areata, support off those living with the disease, and educating the public about alopecia areata. We realized quickly that this was a once-in-a-lifetime opportunity to raise awareness and educate a global audience about alopecia areata, an autoimmune disease which impacts hair follicles and causes hair to fall out. Early the following Monday morning we were already in deep discussion with a respected contract research organization to plan our strategic response. We would only have one chance to get this right and we wanted to make sure NAAF’s response to a story that would dominate the news cycle for the next several weeks was both measured and informative. Some might have been expecting us to pick a side but right from the start we knew that would serve no constructive purpose. We saw “the slap heard ‘round the world” as an opportunity to educate a suddenly engaged audience about a disease they may well have known little to nothing about. NAAF’s response drafted and approved that very morning. was sent to our community via eblast, as well as posted on our social media channels and website.
It was that Monday morning, that NAAF’s President & CEO Nicole Friedland (who had only been with on staff for three months) said, “Alopecia areata is no joke,” and our new awareness campaign had its name. That phrase would be at the forefront of all subsequent communications, and we would make sure to say it loud and clear in media interviews. After all, this is disease that not only causes hair loss – the most obvious manifestation – but for too many carries with it social stigma, shame, and even suicidal thoughts. The psycho-social component of alopecia areata is documented in a number of studies.
The media hits came in FAST, some four dozen news outlets reaching out to us within the first 24 hours of the Oscars. NAAF responded to a non-stop torrent of requests from media outlets great and small both in the U.S. and abroad asking for interviews with patients, medical experts, and Foundation representatives, all wanting to know about alopecia areata and how those with the disease and their loved ones could find support and information. NAAF was able to work with numerous news outlets to ensure alopecia areata was featured including NPR, CNN, the Wall Street Journal, the BBC, The New York Times, The Guardian, and many local news broadcasts. Joan Lunden hosted a live Facebook discussion on alopecia areata, and PBS NewsHour produced a 10-minute segment exploring the disease and how it affects patients. In the 72-hour period following the Academy Awards, traffic to NAAF’s website increased by 900%.
The Oscars incident was something no one could have predicted. NAAF was honored to face this opportunity and leverage it to increase knowledge and understanding of a disease that has been so long relegated to the shadows. Not long after the Oscar’s, the first FDA- approved treatment for alopecia areata was announced – a long-fought-for goal of NAAF and our partners. 2022 has been a turning point year for our community. We remain committed to reducing the stigma and raising awareness of alopecia areata.