Charleston family fighting to get hearing device for infant son

by DANIELLE DINDAK  – Wednesday, November 25th 2020

CHARLESTON, W.Va. (WCHS/WVAH) — Parents will do anything to give their children a healthy and normal life, but for one Charleston family it has been an uphill battle.

“You love them more than anything in the world and you’re willing to do anything for them,” Katie Shear said. “You need to be their strongest advocate, especially when they’re this little.”

The Shear family’s story started this past summer on June 9 when the family grew by one.

“He was a C section baby, so the way I found out was pretty traumatic,” Shear said. “It was during surgery and I heard somebody in the operating room say he’s missing an ear.”
Baby J.J. was born without part of his left ear — referred to medically as microtia — leaving him with only minimal hearing on that side.

“I turned and looked at Andrew and said ‘he has the other one right?'” Katie Shear said.

J.J. is now five months old, happy and loving everything Disney.

“Whatever he needs I’ll go to the ends of earth to get it for him, but we figured we have insurance it’s going to be okay,” Shear said.

A device can give J.J. the gift of full hearing, but with a price — as much as $12,000 every five years for the rest of his life. The family said it is hitting a roadblock after being denied help by two insurance companies so far.

“‘We don’t deem a hearing aid, for your child that has no left ear, medically necessary. Find alternative treatment options,’” Shear said. “There is not an alternative option.”

Andrew Shear said the device they’re fighting for is only the beginning for J.J.

“I mean this is only the first step,” Andrew Shear said. “He’ll have the headband and the Baha hearing device until five or six and once he gets older he’ll have the option to do the surgery, which implants it behind your head.”

The Shear family isn’t battling insurance companies alone, they have support from a non-profit group called Ear Community — and some lawmakers in Washington are trying to help.

“That’s the biggest thing with Ally’s Act, it’s not saying you’re going to get it for free but all insurances have to cover it or carry it as a medical device,” Andrew said.

Ally’s Act — named for a little girl in Colorado — is a bipartisan bill introduced in the U.S. Senate by Sen. Shelley Moore Capito.

“This isn’t something Democratic or Republican, this is something everyone can rally behind,” Katie said. “Shelley Moore Capito and Elizabeth Warren introduced it on the Senate floor on Sept. 8.”

In a statement to Eyewitness News, Capito said hearing devices like what J.J. needs are crucial for a child’s early development.

“Many of us take for granted the gift of hearing and how often we rely on our senses to effectively communicate with one another,” Capito said. “It is important that we take the necessary steps to improve our health insurance systems and ensure these critical devices are readily available for those who need them. OIDs are even more crucial for individuals born with hearing deficiencies, as the first five years of life are important for speech and language development. I’m proud to introduce Ally’s Act, which will help establish better access to these critical hearing devices for those that need them.”

If it becomes law, the bill would cover the cost of the hearing devices and maintenance from birth to the age of 64.

“We get pushed under the rug a little bit by insurance companies because there’s not a ton of people saying ‘hey, I need this,’ but the people who are saying ‘hey, I need this,’ — we need this,” Katie said. “Our children need this to be able to live their life like a regular kid.”

For now, Ear Community is donating the first device J.J. needs just in time for Christmas.

A copy of Ally’s Act can be viewed below.
NEGUSE_Ally’s Act_067_xml

#AllysAct
Below is the news clip for this story:
https://wchstv.com/news/local/charleston-family-fighting-to-get-hearing-device-for-infant-son