Advocacy Day 2019
On February 26, Ear Community was invited to be a part of the 2019 Advocacy Day on Capitol Hill. This annual event invites advocates on behalf of dental, oral, and craniofacial research to speak directly with federal policymakers about how insurance coverage and research funding would improve the lives of those living with these conditions.
Organizer Melissa Tumblin founded Ear Community and has a daughter, Ally, with Microtia and Atresia who wears a bone-anchored hearing system (BAHS). Melissa was able to arrange the meetings with House and Senate representatives because she sits on the Patient Advocacy Council for the National Institute of Dental and Craniofacial Research (NIDCR).
Melissa and Ally were accompanied by eight other Ear Community families, including one medical doctor, to Washington, D.C. representing the states of Washington, Colorado, Tennessee, Maryland, and Virginia.
Lobbying on behalf of families living with hearing loss and related conditions
On Monday, February 25, Melissa met with directors from the National Institute of Health representing the NIDCR, American Association for Dental Research (AADR), and International Association for Dental Research (IADR) to discuss collaborative efforts regarding children and adults affected by craniofacial challenges due to Microtia and Atresia and Goldenhar Syndrome.
The next day, the Ear Community families met with the following representatives and staff members on Capitol Hill:
- Staff members for Senator Lamar Alexander’s (R-TN) office
- Legislative staff members for Congressman Joe Neguse’s (D-CO), Senator Cory Gardner’s (R-CO), and Michael Bennet’s (D-CO) offices.
- Legislative staff members for Senator Chris Van Hollen (D-MD), and office staff for Congressman John Sarbanes’ (D-MD) and Senator Ben Cardin’s (D-MD).
- Legislative staff and the press secretary for Congressman Denny Heck’s (D-WA) office and an Appropriations representative for the NIH staff for Senator Patty Murray’s (D-WA) office.
- Senator Tim Kaine (D-VA), Congresswoman Abigail Spanberger (D-VA), and legislative staff members for Senator Mark Warner (D-VA) and Congressman Ben Cline (R-VA). Sen. Kaine was celebrating his birthday and signed a little girl with Microtia and Atresia named Mazie’s cast. Both Sen. Kaine and Rep. Spanberger tweeted about the Ear Community visit.
Melissa also scheduled phone meetings with Congressman David McKinley (R-WV) and Congressman Michael Thompson (D-CA), as they both serve as co-chairs of the Congressional Hearing Health Caucus. Rep. McKinley is a cochlear implant user, and his grandson wears a bone-anchored hearing aid.
Each family left behind a detailed packet of information with the story of the Ear Community organization, an explanation about the need to wear bone-anchored hearing systems, and a sample of anaudiogram along with other helpful facts and figures. Each family explained to legislators and their staff that a bone-anchored device is their only option, because they don’t have the same hearing challenges that qualify others to wear cochlear implants or benefit from traditional hearing aids. Therefore, wearers need lawmakers to work toward mandating bone-conduction hearing device coverage by insurers nationwide. Otherwise, insurance companies are effectively discriminating against thousands of children and adults with hearing loss by not covering these medical devices.
A Stranger Things star gives back
The Ear Community families also received an exciting treat: thanks to the NIDCR and AADR, they were given the opportunity to meet actor Gaten Matarazzo from the hit TV show Stranger Things! He was part of the Advocacy Day non-profit organization lobbying to bring awareness to Cleidocranial dysplasia (CCD), a rare genetic mutation affecting the growth and development of teeth and bones.
Melissa expressed her appreciation to Oticon Medical for lending her two Ponto 3 SuperPower BAHS on soft bands. During her visits, representatives tried on the Pontos and listened to her talk during their meetings, so they could experience for themselves what it’s like to hear through bone-anchored devices.
Ear Community hosts a series of picnics where Microtia and Atresia families can learn more about Oticon Medical’s Ponto 3 SuperPower. Please click through this link for the 2019 picnic schedule.
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