Audiologists seek to bridge health care gaps
The family doctor insisted nothing more complicated than allergies were at the root of Kayleah Saylor's hearing problems.
But the treatments didn’t help, and Kayleah’s struggles to communicate created an ever-thickening bubble around the 7-year-old Indiana girl, separating her from the rest of the world.
Efforts to teach Kayleah to read often ended in tears because she couldn’t distinguish one letter’s sound from another. Other children couldn’t understand why she seemed to ignore them, and their parents told her she needed to learn to listen better.
Seeing a hearing specialist never crossed the Saylors’ minds, and their doctors never recommended it. Even if they had, the family didn’t have insurance.
This kind of situation — a patient needing specialized hearing care but not even aware of the options available — is relatively common not just in Indiana, but across the health care industry, according to audiologists.
A new Lancaster County nonprofit headed by Dr. Kamal Elliot aims to help people like Kayleah access the kind of audiological care they might not otherwise be able to afford.
The organization is a first step in addressing the inconsistent, and some say woefully inadequate, coverage that insurance policies and medical assistance programs provide for patients with hearing problems. Elliot and other Pennsylvania audiologists, however, believe the costs associated with hearing care only go a small way toward explaining the vast gap between the number of people who need hearing care and the tiny slice of the population that actually receives it.
'Free doesn't work'
A family friend eventually connected the Saylors to HearCare Connections, an Indiana-based hearing health care nonprofit specializing in serving the under-insured and underserved residents of northeast Indiana.
Kayleah received her first real diagnosis — progressive sensorineural hearing loss — and a set of pink and blue hearing aids she has since named Mike (for microphone) and Betty (for behind-the-ear).
She learned to read not long after and now, at 13 years old, devours mystery novels at a high school reading level.
Elliot, clinic director and audiologist at A&E Audiology and Hearing Aid Center in Manheim Township, hopes to use HearCare’s model to provide similar services to patients in the midstate. Her nonprofit, A&E Hearing Connection, opened its doors June 6. Kayleah and her mother, Tamara, flew to Pennsylvania from Indiana the week before to help find sponsors, something they have also done for HearCare over the past several years.
A&E Hearing offers reduced-price hearing services, including hearing aids, on a sliding scale for individuals and families making up to 2.5 times the federal poverty level. That threshold amounts to an annual income of about $30,000 for an individual or just over $61,000 for a family of four.
“We’ve had people say it’s this or cancer treatments,” Elliot said. “And we don’t want that.”
Whereas a set of high-tech hearing aids might cost upward of $7,000 out-of-pocket, Elliot’s nonprofit can provide them for as little as $45.
Audiologists see ample need for these kinds of services. Medicare, which covers many of the older patients audiologists see, only covers a patient’s initial evaluation, not the actual hearing aids or treatment, said Dr. Lucy Corbin, president elect of the Pennsylvania Academy of Audiology and head of a Northumberland County hearing center.
Private insurance too is highly inconsistent, with coverage varying by state. Corbin often sees insurers cover a patient’s costs for one ear, but not the other.
“No one will ever think of telling someone they have coverage for one eye but not the other, or one lung and not the other, or they can only get one leg fixed,” Corbin said. “But for some reason insurances have gotten away with offering poor hearing care that often includes only one ear.”
Some federal lawmakers, including U.S. Sen. Elizabeth Warren, have proposed making cheap, over-the-counter hearing aids available to people with perceived mild or moderate hearing loss. Many audiologists say that’s not the solution — patients need someone specifically trained to fit, adjust and maintain the hearing aids in order to make sure the equipment satisfies the exact needs of the individual patient, Elliot said.
Pennsylvania does have several state programs to assist people in certain situations with hearing aid costs. The Pennsylvania Office of Vocational Rehabilitation helps people with disabilities, including hearing loss, finance hearing aids if they need them to find work. Those services, though, offer little for retired people or children.
The Pennsylvania Assistive Technology foundation provides zero or low-interest loans to fund treatment, but patients still need to pay back any money borrowed.
A nonprofit like A&E Hearing or HearCare can help bridge some of those gaps, albeit only on a local level. These groups connect patients with audiologists who can provide the follow-up care and customization they need.
The services aren’t free, but that might be a good thing.
“Free doesn’t work,” said Anna Bogdon, executive director of HearCare.
On top of paying the income-based fee, patients at HearCare have to perform a certain amount of community service in exchange for their discounted care. A&E Hearing, which has worked with HearCare to gather ideas throughout the launch process, adopted the same model.
It’s called a Circle of Giving. Patients at A&E Hearing have to perform up to 36 hours of charitable work, depending on their physical ability and the size of the discount they receive. The idea is to not only give back to the community that helps fund the nonprofit, but also instill a sense of pride and ownership in the people receiving help.
“Sometimes I think (encouraging community service) is even a little more important than fitting the hearing aid,” Bogdon said.
Like Kayleah before her hearing aids, many patients with hearing loss find themselves drifting away from the people around them. They grow used to isolation, maybe spending their days doing nothing but watching TV with the volume all the way up. With those habits ingrained, getting a new set of hearing aids might mean nothing more than going home and turning down the TV.
Patients usually resist the idea of doing community service as a term of their agreement with HearCare, Bogdon said. And she understands that hesitation — HearCare is asking them to go back to an environment they have tried, often for years, to avoid.
Patients have shown time and time again over HearCare’s roughly six years in existence, though, that the push pays off.
Take Bill, for example. Bill came to HearCare in 2013 for hearing aids, Bogdon said. He quickly finished his initial volunteer hours — both HearCare and A&E Hearing require patients to perform half their hours before receiving service — but he couldn’t come up with the necessary 50 percent down payment.
Bogdon assumed she would never hear from Bill again, until she received a call from one of the people from the group he was volunteering with. They wanted to anonymously pay for Bill’s hearing aids.
“We’re not the answer to everybody’s problem. We’re not the fix it all,” Bogdon said. “It’s the community that’s coming in and saving the day.”
More than money
Elliot is the first to acknowledge that reduced costs can only go so far in making sure patients receive the care they need. People often don’t even think to ask for a hearing exam, either because they accept their condition as normal or they don’t even know seeing an audiologist is an option.
“It’s not the cost factor; it’s the psychological barrier,” she said.
Only about 10 percent of people with mild hearing loss receive treatment, according to research frequently cited during debates about the over-the-counter hearing aid legislation. That proportion goes up to 50 percent for people with moderate loss, and 70 percent for people with severe loss.
The costs partially explain that gap, audiologists say, but the bigger issue lies in an overall lack of awareness among both individuals and doctors about the importance of hearing care.
People’s social lives take a serious hit when they can’t hear the people around them. That isolation can lead to serious physical health problems, including everything from depression and fatigue to dementia and Alzheimer’s disease, Corbin said.
Primary care doctors, though, still don’t refer patients to audiologists as often as they should, some hearing professionals say.
“I think physicians are not as concerned with hearing loss because they are overwhelmed with so many other chronic diseases a patient might have that it naturally takes a ‘back seat,’” said Dr. Maryann McCullough Nikander, an audiologist working in Bucks County. “I don’t think it is for a lack of caring; in fact, quite the opposite. Often they are trying to address the most pressing problems and don’t recognize that a patient’s inability to hear may affect even simple things like directions given by a health care worker regarding medications.”
Individuals, too, tend to ignore their hearing in favor of tending to what they see as more pressing health needs. Studies have shown that even in places like the United Kingdom that offer citizens free hearing aids, only a small portion of the people who need them actually get them or use them regularly.
Older patients especially question whether a hearing aid is worth the hassle. One of the most common questions that Dr. Jim Zeigler hears from seniors at his audiology clinic in northeast Pennsylvania is, “Is hearing even normal for my age?”
That attitude turns out not be as harmless as patients think as they unknowingly isolate themselves from the friends and family supporting them, Zeigler said.
Hearing loss also carries a level of stigma that prevents people from seeking treatment. Patients might consider the possibility of hearing aids but decide it is not worth the embarassment of having what they think will be a bulky beige piece of plastic in their ears, Elliot said.
But technology, and public attitudes, have come a long way since the days of unsightly hearing aids and social stigma. Just ask Kayleah.
“I don’t see it as a disability,” she said. “I see it as an obstacle you can easily jump over if you have the right stuff.”