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9-year-old's letter to her local representative leads to legislation for people with hearing loss

BAHA devices, a bone-anchored hearing system, range in price from $5,000 to $12,000 each but is not covered by insurance.

9-year-old's letter to her local representative leads to legislation for people with hearing loss
Cover Image Source: Twitter/Joe Neguse

Ally Tumblin was 9-years-old and in third grade when she was given a homework assignment that would change not just her life but that of thousands of Americans. She was asked to do something to better her community with one of the options being to write a letter to an elected official about an important cause. And so in May of 2019, the youngster and her mother, Melissa Tumblin, sat down to write their congressman about a cause very near and dear to their hearts: Ally's hearing loss and the lack of insurance coverage. "She looked at me and was like, 'Mom, my BAHA,'" Tumblin told Good Morning America. "And that was the start of it."

 



 

A BAHA is a bone-anchored hearing system, an implantable device that treats hearing loss. Ally was born with both microtia, a rare condition that — according to Children's Hospital of Chicago — causes missing or underdeveloped ears, and aural atresia, the absence of the ear canal. In Ally's case, Tumblin explained, she was born without a right ear or right ear canal. "When Ally was born, we were a little surprised that her right ear was gone," Tumblin told 9News. "I had a perfectly normal pregnancy. I did everything right. As a mother, I couldn't understand what happened."

 



 

"She was born via C-section and I remember my husband coming over to me teary-eyed and he said, 'I think there's something wrong with her ear,'" she recounted. "I immediately saw her sweet little smile and her face and I was so happy, but we were kind of shocked and our story is the same story as so many families." Tumblin revealed that she and her husband felt "alone" after their daughter's birth as doctors told them their Ally's one ear was enough and they didn't have many other resources to support her. "On the playground, I would call for her. She would be looking all over to figure out where I was, even looking in the sky, while my other daughter would come right to me," Tumblin recalled.

 



 

"When I went back online to do more research, I discovered this other hearing device specifically for Ally's hearing loss called a bone conduction hearing aid. I was surprised that none of our doctors had mentioned it to us," she added. Although learning about the BAHA device put an end to their search, they soon learned that it was not covered at all by their insurance. The devices range in price from $5,000 to $12,000 each and need to be upgraded or replaced every five years. However, by that point, Ally — who is 11-years-old now — had gone almost a year without the use of one of her ears and the Tumblins purchased a BAHA for her out of their own pocket so that she wouldn't face any further speech and hearing delays.

 



 

 

"I will never forget the day she got [a BAHA]," said Tumblin. "The audiologist put the device on Ally and she whispered Ally's name behind her ear. Ally's face lit up and she whipped her head around and looked at us and we both started crying tears of joy. I remember someone in the audiologist's office told me, 'It's as if she's been re-engaged with her environment, like someone turned on a switch.'" Once she saw how much the device transformed their daughter's life, Tumblin turned her focus toward helping other families obtain insurance coverage where possible and also set about asking lawmakers to make it a national mandate that insurance companies cover devices like BAHAs and cochlear implants.

 



 

 

"They are absolutely necessary for the best quality of life for all of these children and adults. I can't see how insurance providers continue to deny coverage for these devices," said Tumblin, who founded the nonprofit organization Ear Community. "Our types of devices are constantly left out of coverage. It feels discriminatory." When Ally — now a fifth-grade student in Colorado — wrote her letter to her local representative, Rep. Joe Neguse, D-Colo., she asked him to mandate insurance coverage for devices like hers. "There are thousands of children and adults just like me who need this device to hear better," she wrote in the 2019 letter.

 



 

 

Less than three months later, Neguse became the lead sponsor of "Ally's Act," legislation that would amend current law to "require coverage of hearing devices and systems in certain private health insurance plans." The congressman said that he was thinking of his own daughter when Ally's letter came across his desk in 2019. "Thinking about what it would be like if she had to experience the struggles that Ally has experienced, that certainly had an impact on me and motivated me to really take a close look and ultimately get to work on trying to fix it," he said.

 



 

 

Neguse reintroduced the legislation in the US House of Representatives last month while Sens. Shelley Moore Capito, R-W.Va., and Elizabeth Warren, D-Mass., introduced Ally's Act in the Senate. "I'm incredibly grateful for Ally's initiative and courage to bring this issue to my office so we could get to work on a legislative fix to address it," Neguse said in a statement announcing the reintroduction of Ally's Act. Speaking of seeing the legislation that her letter inspired, Ally said: "I think it's pretty cool. I'm excited and I hope Ally's Act passes. I think kids deserve to hear."

 



 

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