The Battle to be Heard

Roughly 38 million Americans suffer from hearing loss, but a majority of those people are unable to pay for hearing services due to insufficient insurance coverage.

“When I tell my co-workers that hearing aids aren’t covered, they are all blown away,” said Mark Fink, a father of two hearing-impaired children. “One of my co-workers has had both of his hips replaced, twice, completely covered, and I am still paying out of pocket so that my children can live normally.”

Hearing loss is a hidden problem in the United States. According to the Center of Hearing and Communication, of the 38 million suffering, 3 million are children. However, most insurance does not cover the cost of hearing aids because to them, hearing aids are considered elective, much like cosmetic surgery. Unfortunately, unlike those surgeries, life without hearing aids can be destructive to those affected, making the need for insurance coverage a must.

In 2010 the Affordable Care Act expanded coverage to include newborn screenings for hearing before discharge from the hospital, but that has been the only pre-emptive care expansion associated with hearing problems.

Since 1992, hearing aids and hearing care have been a part of my family’s way of life. Both of my siblings were born with a mitochondrial gene defect that caused a hearing deficiency known as binaural sensorial hearing loss. This means that both of their ears are impacted due to damage of the nerve pathways to the brain. As this is a permanent defect, the only way to help is to use hearing aids.

Unfortunately, for my family and many families throughout America, the only way to pay for those hearing aids is out of pocket — and for those who have been affected by this, the costs are high.

“Because we choose to buy the high-tech hearing aids that our children need, we spend around $6,000 for a pair, so multiply that by two, add in maintenance and follow-up appointments, and I have already paid for a year’s tuition at an in-state university,” Fink said.

My siblings, as well as myself, are lucky enough to have parents who can afford those hearing aids, but for many families, that is not the case. For those who are insured through Medicaid and are under the age of 21, screening, diagnosis and treatment, including hearing aids, must be provided. After the age of 21, those rules change based on each state. Those in the middle class, however, don’t always have that option.

“For those in the middle class, you don’t get that,” said Kelly Averette, an audiologist in North Carolina’s Wake County Public Schools. “They need help, they can’t spend $4,000 on hearing aids every year.”

The need for change in insurance coverage is of even greater importance for families with children affected by hearing loss. As we age, we tend to lose our hearing — it’s natural, so buying a cheaper, noise-amplifying aid is OK. But for a developing child, that isn’t the case.

“There is no excuse for kids,” Averette said. “For adults who have lost their hearing over time, they have language, they can adapt and figure out ways to get around things; kids don’t have that option.”

As children, we have a small gap of time to develop language; after that it takes a lot of work for children to catch up — something my family dealt with head-on. My brother’s hearing loss was not diagnosed until age 3, when many language milestones had passed. Because my brother was unable to verbalize that he wasn’t hearing things fully, he was treated as deaf and taught sign language — something he did not need. Eventually he was mainstreamed and learned to speak, but not until after much time had passed.

My family had the help and means to provide for my siblings, but there are far too many families who do not. The coverage from insurance for hearing aids needs to change.

“Somebody has to step up and say this is wrong,” Averette said. “The only way it is going to change is lobbyists making a difference, government coming in, states stepping up and realizing the impact of this loss on society, and I don’t know if that is ever going to happen.”

For many people, including my family and Kelley Averette, the battle to be heard has been going on for decades. Many officials have responded with arguments saying that buying new hearing aids is not something that has to be done and that used hearing aids are available for cheaper costs, but is that the point?

There have been arguments for mandates on government health coverage for birth control and companies avoiding those directives. How is that different from coverage of hearing loss? People choose to be sexually active and can choose their birth control. But people like my siblings did not choose to be hearing impaired.

Whether it is for children born with hearing loss, those who have lost their hearing as they have aged, or anyone else in between, the argument stays the same.

“It is a need,” Averette said. “You cannot live your life as a hearing-impaired person without hearing aids.”

Unfortunately, far too often, people do — and it is time for a change.