01 Third grader legislation hearing loss

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CNN  — 

At just 9 years old, Ally Tumblin has inspired legislation in Congress that could help thousands of Americans pay for hearing aid devices by mandating insurance companies to cover them.

It all started in 2019 with a simple letter to her elected official after the then third-grader was assigned to do something to better her community for class. She decided to write to her congressman, Rep. Joe Neguse, a Colorado Democrat, about her struggle to hear and how important her BAHA was, a bone-anchored hearing aid that’s used to treat hearing loss. It’s an implantable device that most insurance companies do not cover and can cost up to $10,000.

Tumblin’s life relies heavily on her BAHA as she suffers from microtia, a rare birth defect where the external ear is small and not properly formed. Many times, as in Tumblin’s case, having microtia also means having aural atresia, a missing ear canal. When the Tumblin family realized Ally’s diagnosis after she was born, they were shocked to find that no insurance company would cover her BAHA, despite her doctors confirming the device as medically necessary.

“From birth to age three … that’s the critical years of development. Every medical professional knows that is the time the child’s speech and language and vocabulary skills are coming in,” said Melissa Tumblin, Ally’s mother. “And it’s critical to help them hear their best and for insurance providers to deny these hearing devices is ridiculous.”

The Tumblin family ended up paying for Ally’s BAHA out of pocket. Insurance coverage for hearing devices vary by state and most typically only pay for traditional air conduction hearing aids. More sophisticated devices, like BAHAs and cochlear implants, are not covered and cost more than traditional hearing aids.

After receiving Tumblin’s letter, Rep. Neguse established Ally’s Act, H.R. 477. The bill would require insurance providers to cover osseointegrated devices, including BAHAs and cochlear implants for children and adults from birth to age 64. Coverage would extend to services to the hearing devices, upgrades, surgery and associated costs.

Ally’s Act is a bipartisan effort, co-sponsored by West Virginia Republican Rep. David McKinley, who himself uses a cochlear hearing device, and Democratic Rep. Mike Thompson of California. It also earned the support of Sen. Elizabeth Warren of Massachusetts.

In an emailed statement to CNN, Neguse expressed his enthusiasm for the Tumblin family’s work around hearing loss and for bringing the issue to his attention.

“For Ally and so many others, specialized hearing devices are critical for communicating. For insurance companies to deny coverage for these essential devices goes against common sense,” Neguse said.

04 Third grader legislation hearing loss

Since her daughter’s diagnosis, Melissa Tumblin struggled to find answers and support around microtia and hearing loss. So she created Ear Community, a non-profit focused on creating awareness of microtia and aural atresia, funding for those who struggled to pay for hearing devices and even established November 9 as National Microtia Awareness Day.

Since its inception in 2012, Ear Community has helped thousands of families across the US and globally. From newborns to firemen, veterinarians and congressman, Tumblin has seen firsthand how people are impacted by hearing loss.

“There’s nothing wrong with these people. They’re perfectly normal, healthy people who want the best life they can provide like everyone else. So, to just be denied the chance to be able to hear, it’s terrible,” said Tumblin.

Ally’s Act was the first bill reintroduced to the new 117th Congress on January 27. It will need 290 co-sponsors to help become law and has been endorsed by dozens of medical associations, including the American Academy of Audiology and the American Speech-Language-Hearing Association.