Ally Tumblin, a 10-year-old Broomfield girl who was born without her right ear canal, loves listening to music.
She wears a bone-conduction hearing aid which allows her to hear in class at Mountain View Elementary School, play video games, skateboard safety because she can hear traffic, hear her cats purr, and even sing in her school choir.
“Adults and children like us need hearing aids to hear better,” Ally said.
Earlier this year, her mother visited Washington, D.C., on Advocacy Day along with thousands vying for a chance to talk about their missions. When she couldn’t meet with any senators, she showed up in person and spoke with U.S. Rep. Mike Thompson of California, U.S. Rep. David McKinley of West Virginia, and U.S. Rep. Joe Neguse who represents Colorado’s 2nd Congressional District.
In May, as part of a homework assignment about giving back to the community, Ally had written a letter to Neguse introducing herself and asking for his help for individuals with hearing impairments.
Neguse, vice chair of the Medicare for All Caucus, introduced legislation Thursday that would ensure private insurance companies provide coverage for osseointegrated hearing devices, or OIDs, including bone anchored hearing aids (BAHAs), and cochlear implants.
OIDs are designed to transfer sounds through bone conduction to the inner ear.
Each device costs between $5,000 and $8,000, Ally’s mother Melissa Tumblin said, and they have to be replaced every five years.
When her insurance company denied coverage of her hearing device, Tumblin formed Ear Community to help advocate for coverage of these devices to make sure no one is left unable to hear because of private insurance companies’ refusal to grant coverage.
Tumblin, who runs several support groups, said every day a child or adult is denied coverage for these hearing devices.
“For Ally and others with varying modes of hearing loss, OIDs are miraculous devices that create opportunities for them to actively participate in our communities,” Neguse said. “I am honored to have the opportunity to work alongside Melissa and Ally to create better access to these devices for individuals throughout our nation. We must ensure that insurance coverage for hearing devices is consistent and fair, to ensure every child can thrive and obtain the healthcare they deserve.”
Tumblin believes hearing device insurance coverage needs to be consistent. Many families she speaks with say their insurance companies offer a variety of reasons to deny coverage, such as calling the devices cosmetic or saying it is experimental technology. Her nonprofit offers information about educational opportunities, a forum for discussion and photos that illustrate various surgeries.
Ear Community, a 501(c)(3), is a supportive community for individuals who were born with microtia, when the external ear is underdeveloped, and atresia, which is an absent or underdeveloped ear canal, resulting in hearing loss. With a bill in place, Tumblin said families are one step closer to achieving improved, equitable hearing health care.
“Hearing is fundamental to early education and speech development and needs to be provided for all those needing hearing assistance,” she said.
OIDs help different forms of hearing loss more effectively than traditional hearing aids, and often are the only hearing device that can restore hearing.
Tumblin and Rachel Songy, a member of Ear Community’s board of directors, worked on the bill, providing documentation and proof of hearing device denials and information about the hearing devices to members of Congress and their staffs.
“As someone who was born with severe conductive hearing loss, I know the passage of this bill will improve the quality of life in immeasurable ways for children and adults by creating affordable solutions that have not been available in the past,” Songy said. “This bill will be a huge step in helping more people to hear, especially those who have not had that chance before.”
Meredith Holcomb, the chair of the board of directors of the American Cochlear Implant Alliance, said she speaks for their membership in supporting passage of this legislation and is grateful to Neguse for his interest.
“Access to hearing implants that can help adults stay healthy, connected and employed and children to have maximum access to language and learning is sometimes impeded by a lack of insurance coverage,” Donna L. Sorkin, executive director of the American Cochlear Implant Alliance, said. “This bill will help open up important access to hearing health technology and related services – interventions which are cost effective and provide extraordinary quality of life benefits.”
Tumblin also works for the Vanderbilt University Medical Center and helped launch its microtia and artesia clinic. Her supervisors Dr. Ron Eavey and Dr. Jon Seidman, of Harvard Medical School, teamed up with Tumblin to conduct genetic research on the two conditions with a grant from the Gabriella Miller Kids First Pediatric Research Foundation.
“There’s so many of us who want to know, why did this happen?” Tumblin said. “When Ally was born, we didn’t find all the answers from our doctors. No one could really say, ‘this is why it happened or this is what it is.’”