Archives for September 21, 2019

Melissa Tumblin and Rachel Songy of the Ear Community Organization, Washington, DC 9.2019

September 19th and 20th, 2019 – On September 19th, Founder and Executive Director of the Ear Community Organization, Melissa Tumblin, met with Congressmen Mike Thompson (D-CA) and David McKinley (R-WV), both of the Congressional Hearing Health Caucus, and Congressman Joe Neguse (D-CO), from Melissa’s home state, to advocate for hearing device insurance coverage for bone conduction hearing devices. After flying into DC from Colorado, the following day Melissa Tumblin was notified that the meeting that had been scheduled with Congressman Mike Thompson, for both her and Ear Community Board Member, Rachel Songy, had been cancelled. Our meeting with Congressman Thompson had been suggested by Congressmen David McKinley’s office after Rachel Songy had met with McKinley in July. Once finding out that Congressman Thompson was unavailable for the rest of the week, Melissa figured she would make the most of her day since this was the whole purpose of her trip to DC. Feeling hopeful, Melissa took a chance and headed to each Congressman’s office in hopes of still being able to meet with someone. To her surprise, she was able to meet with all three Congressmen unannounced, given the opportunity to discuss why hearing device insurance coverage is an issue for bone anchored hearing devices for both children and adults. Each Congressman took the time to meet with her, listening to her concerns. She explained the problem regarding lack of insurance coverage by private insurers for these hearing devices and explained how some children are born without ears, have no ear canals and that these are the only hearing devices they can benefit from. Congressman Mike Thompson and Senior Legislative Assistant, Crozer Connor, took the time to meet with Melissa at the last minute before heading to the floor for a bill after finding out she had flown in from Colorado to meet with him and their meeting had been cancelled that day. Melissa discussed the challenges with private insurers and the lack of coverage for these devices with them, asking for help on a national level. When meeting with Congressman David McKinley, Melissa’s story of all of the children and adults who continue to be denied by their insurance providers resonated with him as he is the only member of Congress who wears a cochlear implant and his grandson wears a bone conduction hearing device, the same hearing device her daughter, Ally, wears. Congressman McKinley invited his insurance specialist in to briefly listen to some of the stories of insurance denials that Melissa shared with them. When meeting with Congressman Neguse – he took the time to listen, along with two of his staff members and Legislative Assistant, Katie Wallace, who all tried on the bone conduction hearing devices Melissa had brought with her. Congressman Neguse was shocked to hear how many children and adults are denied the use of a hearing device and that these hearing devices are often not covered throughout adulthood by private insurers. His office also retrieved the letter that Melissa’s daughter had written to him during Better Hearing and Speech Month (May), where Ally asked him to help her advocate to hear better.

During the next day on September 20th, Ear Community Board Member Rachel Songy and Melissa Tumblin were able to meet with Crozer Connor (Senior Legislative Assistant to Congressman Thompson) after rescheduling the meeting from the day before. Both, Rachel and Melissa were able to speak in more detail with Crozer Connor, again asking for his help with hearing device insurance coverage on a national level. We are hopeful that our voices were heard and we will continue to advocate moving this process along in hopes for coverage of bone conduction hearing devices nation-wide.

https://www.youtube.com/watch?v=tcGqW-_zETw

On February 26th, 2019, the Ear Community Organization began advocating on Capitol Hill for hearing device insurance coverage for bone conduction hearing devices during Advocacy Day. The organization brought eight Ear Community families along, including one medical doctor, from states including Washington, Virginia, West Virginia, Washington, DC, Maryland, Tennessee and Colorado. Ear Community families advocated for hearing device coverage alongside the NIDCR (National Institute for Dental and Craniofacial Research), AADR (American Association for Dental Research) and FNIDCR (Friends of National Institute for Dental and Craniofacial Research) with Melissa Tumblin being a member of the Patient Advocacy Council for these dental and craniofacial research

Ear Community Families advocating in Washington, DC 2/26/2019

organizations. The families advocated for half a day on Capitol Hill, meeting with local Congressmen and Congresswomen. Ear Community also helped advocate for research funds with the NIH for the NIDCR and AADR. The day was an amazing experience for all and we were grateful for the opportunity provided.

Congresswoman Abigail Spanberger meeting with Mazie Herzing, Ear Community hearing device recipient

While advocating on Capitol Hill during Advocacy Day, Congresswoman Agibail Spanberger (D-VA) and Senator Tim Kaine (D-VA) were able to meet directly with two of our Ear Community Families (Shelley and Carly Herzing with their daughter, Mazie and Ear Community support group administrator, Kasi Logan (and her daughter, Ella) and Family). Congresswoman Spanberger and Senator Kaine were thankful to meet Mazie and the Herzing Family and the Logan Family. Both representatives were proud of these two families for helping advocate for children and adults who have Microtia and Atresia in the state of Virginia. Mazie Herzing is a bone conduction hearing device recipient from Ear Community and was awarded a Cochlear Americas Baha 5 when Mazie’s family insurance provider in the state of Virginia denied coverage for her hearing device.

While advocating on Capitol Hill with the NIDCR/AADR, our Ear Community children that were

Ear Community kids meet Gaten Matarazzo from Stranger Things

with us were very lucky to meet Gaten Matarazzo from the Netflix Science-Fiction drama series , “Stranger Things.” Gaten was there with his father, Gaten Sr., advocating for a cause that Gaten supports called cleidocranial dysplasia (CCD) – a condition he was born with that affects the development of bones and teeth. Melissa Tumblin and her two daughters, Hailey and Ally, were also invited to the NIH where they were given the opportunity to participate in director lead meetings by the NIDCR and AADR.

During the month of May, while continuing to advocate for hearing device insurance coverage, Ear Community’s co-founder, Ally Tumblin (co-founder of Ear Community), wrote letters to Congressman Joe Neguse (D-CO), Congressman David McKinley (R-WV), Congressman Mike Thompson (D-CA) and Senators Corey Gardner (R-CO) and Michael Bennet (D-CO) as a home work assignment in support of hearing loss, a cause that is near and dear to

Ally Tumblin of Ear Community, writing letters to House and Senate members during Better Speech and Hearing Month (May 2019)

Ally’s heart as she has severe hearing loss in her right ear. These letters were sent during the month of May in honor of Better Hearing and Speech Month with Ally asking for help with mandating hearing device insurance coverage for bone conduction hearing devices. Ally chose this homework assignment so she could help advocate for other children and adults who were born with Microtia and Aural Atresia. This home work assignment was a great way for Ally to follow up with her House and Senate representatives and staff that she had met with back in February.

Thank you and we’ll keep everyone updated as we continue to advocate for our community!
Ear Community
www.EarCommunity.org