Rep. David McKinley knows from personal experience the challenges faced by people with hearing impairments.
“I enjoy being the poster child for not being defeated by this,” said McKinley, R-W.Va.
McKinley, 67, was 29 when he was diagnosed with audio sclerosis. He said the condition meant calcium deposits on his inner ear led to hearing loss on the left side, a condition that continued for more than three decades.
“For 35 years-plus I heard nothing on the left side,” he said. “They said I would start losing it on the right side.”
He sought advice from topnotch medical professionals and two years ago was advised to have a surgical procedure for a cochlear implant. He said the device takes electrical impulses to the inner ear and provides stimulus to the brain.
“When we did this two years ago, it was odd,” he said. “At first I heard a lot of crackling out of the left ear. It was like someone reaching into a bag for the last potato chip. Then noises started becoming words. I could hear a turn signal and rain on the roof of the car.”
While his hearing is not 100 percent, the difference is phenomenal. He wears a hearing aid on the right side and will likely have the same surgery on that ear in the future.
He said he is thankful to participate in public service and has a strong goal of helping others overcome the challenges of hearing loss.
Throughout the years, he has managed by asking people to repeat what they have said as well as by watching their lips as they speak. He jokes that he knows just enough sign language to be dangerous, but adds that is not generally an option anyway.
He said he is honored that he was asked to serve as co-chairman of the Congressional Hearing Health Caucus.
“It has been a lifelong effort on my part to help people with hearing loss and be a voice,” he said.
He notes the importance of hearing for all ages from children learning in school to those working in businesses or serving in churches or Congress.
McKinley’s office sent out a media release in early November applauding a decision by the Centers for Medicare and Medicaid Services to drop a proposed rule that would have eliminated longstanding Medicaid coverage for several types of hearing devices.
“This is an issue that is personal to me as a hearing impaired American with a cochlear implant and a grandfather of a child with an osseointegrated hearing” device, he said.
His grandson, 9-year-old Maxwell McKinley, has a number of genetic issues and is autistic, he said.
“Maxwell is a real star,” he said. “He is legally deaf, technically blind and does not speak. He is an inspiration to all of us. He communicates with his eyes and an iPad. He’s taught us all lessons about communicating, learning and processing information.”
Devon Seibert, McKinley’s legislative director, has worked alongside him in efforts to help the hearing impaired.
She said Maxwell is fitted with a Softband bone-anchored hearing aid, or BAHA, which is covered by Medicaid and worn like a head band. This type is used for children who are still growing, and Maxwell may be a candidate down the road for surgery similar to the one his grandfather had.
Last July, the Centers for Medicare and Medicaid Services proposed a new rule that would end coverage for people who needed bone anchored hearing solutions, systems that were traditionally covered by Medicare.
Medicare does not cover hearing aids because of a specific exclusion in 1965 legislation. In July, CMS proposed that bone anchored hearing solutions be classified as hearing aids instead of prosthetic devices as cochlear implants are classified. In 2006, Medicare policy was established to cover prosthetics.
McKinley and his staff were alarmed that adoption of the rule would affect thousands of people who have found traditional hearing aids to be ineffective.
“A hearing aid is an amplifier,” Seibert said. “The BAHA acts for an organ, the outer ear.”
McKinley met with officials from CMS and joined several of his colleagues in the House to send letters urging reversal of the proposed rule.
CMS finally determined that a cochlear implant differs from a hearing aid because it is surgically implanted to stimulate auditory nerve fibers. McKinley’s staff got word of the decision Oct. 31.
“This decision means millions of Americans with severe hearing loss will have access to this life-changing treatment,” McKinley said. “There are ways for CMS to evaluate new technologies and find cost savings without leaving patients without an effective solution to treat their hearing loss.”
Addressing hearing challenges could open doors of opportunity for many people, he said.
He hopes one day Medicare will also cover hearing aids and eyeglasses, or at least a portion of the cost. Elimination of wasteful spending could make it possible to provide such coverage, he said.
Contact writer Charlotte Ferrell Smith at charlotte@dailymailwv.com or 304-348-1246.