By Julia M. Chambers
American actor and singer Gaten Matarazzo, best known for his famous role as the character Dustin Henderson in the hit Netflix sci-fi series, Stranger Things, is making waves as a powerful advocate for people born with craniofacial abnormalities.
When he is not filming for Netflix or performing with his band, Gaten dedicates much of his time to raising awareness about a medical disorder he was born with, cleidocranial dysplasia. More recently, he has appeared in videos and visited Capitol Hill to speak in support of the Ensuring Lasting Smiles Act (ELSA) S.560/HR 1379, which would provide necessary protections for the medical needs of patients like Gaten who have craniofacial abnormalities that require interdisciplinary treatment and care.
Cleidocranial dysplasia (CCD) is an incurable hereditary condition that affects the development of teeth and bones and requires a series of specialized surgeries and dental care to treat. These procedures are often not covered by health insurance, causing financial issues and childhood developmental delays. Patients with CCD often have too many teeth in the gums that must be surgically removed, and require manual eruption of regular adult teeth.
Gaten is passionate about helping children who have CCD and has shared openly about his surgeries. He also started a line of t-shirts to help raise funds for CCD SMILES, a non-profit organization co-founded by Gaten and his father with Dr. Kelly Wosnik of Utah. CCD Smiles was launched to help families cover surgical care expenses necessary to deal with cleidocranial dysplasia.
In a YouTube interview with The Doctors TV, Gaten shared that his CCD was once a significant barrier to getting acting roles before he joined the cast for Stranger Things. In an unusual move, however, Stranger Things’ directors decided to incorporate Gaten’s real-life CCD into the new show’s plot, allowing an opportunity for his character Dustin to face bullying and talk to his friends about his rare medical condition.
According to researchers from Oklahoma State University, the show’s highlight of Dustin’s CCD has led to a surge in Google searches for the disorder, up to a 94 percent increase, highlighting awareness around the nation.
While CCD is rare, affecting roughly 1 in a million people, it is just one in many craniofacial abnormalities requiring intensive dental and medical treatment that would be protected by the Ensuring Lasting Smiles Act (ELSA) S.560/HR 1379. This bipartisan bill is under consideration in Congress and would require medically necessary dental procedures, services, and surgeries to be covered for adult and pediatric patients with craniofacial abnormalities, including those resulting from a congenital anomaly or disability. These abnormalities can affect a person’s appearance and affect childhood development and physical functions critical to life, such as eating, speaking, swallowing, and breathing.
Dental services and surgical procedures are critical to treat and correct these craniofacial conditions. However, they are often classified as cosmetic procedures by many insurance companies. Treatment and related future dental work may be denied or considerably delayed in the approval process—an issue especially problematic for childhood development. Affected families face overwhelming financial difficulty in paying for the many necessary surgeries and dental care: care that is not limited to childhood alone but extends into adulthood.
In a recent letter to the US House Committee on Energy and Commerce dated September 8, 2020, the American Dental Association (ADA) states that one in 33 children in the US is born with a congenital anomaly that causes complications such as these. The ADA has urged US Congress to act by passing ELSA, legislation that will mandate health insurance coverage for the medically necessary and multidisciplinary treatments needed to address these conditions. It is not the first letter the ADA has sent about the issue.
Joining forces with the National Foundation For Ectodermal Dysplasias (NFED), Gaten Matarazzo’s passion shines through in a recent YouTube video, also advocating for ELSA. Many patients in the video highlight the reality of life without the teeth necessary for eating, digestion, and speech. Gaten urges Congress to recognize the need for the act’s protections and co-sponsor the federal legislation.
Author: Julia M. Chambers has more than 25 years of experience as a freelance writer, content creator, and editor. Her interests include design, health, education, and social media. Her competitive writing experience and educational background in psychology, English composition, and special education have provided her a solid framework for exploring diverse and relevant topics.
- Stork, MD, Travis. 2018. “‘Stanger Things’ Star Opens Up About Rare Condition.” The Doctors TV. January 24, 2018. https://youtu.be/atI_SsbYxCg.
- Kekatos, Mary. 2020. “Stranger Things Star Gaten Matarazzo Single-Handedly Raised Awareness Of Rare Bone Disease.” Daily Mail. February 20, 2020. https://www.dailymail.co.uk/health/article-8025945/Stranger-Things-star-Gatan-Matrazzo-single-handedly-raised-awareness-rare-bone-disease.html.
- Garvin, Jennifer. 2020. “ADA Urges Committee To Support Ensuring Lasting Smiles Act.” ADA News. American Dental Association. September 10, 2020. https://web.archive.org/web/20201010012318/https://www.ada.org/en/publications/ada-news/2020-archive/september/ada-urges-committee-to-support-ensuring-lasting-smiles-act.
- National Foundation For Ectodermal Dysplasias. 2020. “The Ensuring Lasting Smiles Act.” National Foundation For Ectodermal Dysplasias. June 13, 2020. https://youtu.be/2fFE-EYNGBQ.