Affordable Hearing Aids Just Got a Giant Step Closer

Decision Could Make Hearing Aids Available Over-the-Counter
– Getty Images

Buying hearing aids could soon become as easy as buying reading glasses.

In a surprise announcement yesterday, the Food and Drug Administration (FDA) said that, effective immediately, it would no longer require adults to get a medical evaluation before buying most hearing aids.

The agency  is also considering creating a category of over-the-counter hearing aids to encourage more “new, innovative, lower-cost products to millions of consumers,” the agency said in a prepared statement.

The announcement was made at a meeting of the National Academies of Sciences, Engineering and Medicine on hearing health care. Previous recommendations from this group, as well as from a White House advisory panel on science and technology, and consumer and some audiologist groups, had urged easing this restriction to make hearing aids more affordable and accessible.

The decision does not apply to those ages 18 and under, who still must have a medical evaluation before purchasing hearing aids. It also does not apply to bone-conduction hearing aids or to prescription-use hearing aids that are inserted deep in the ear canal.

Age-related hearing loss affects some 30 million Americans, affecting not only their work and social interactions but also their overall health and quality of life. For most, the hearing loss begins before the age of 60. The isolation and loneliness that can result from serious hearing loss have been linked to a higher risk of cognitive decline and dementia.

Despite the high prevalence and public health impact of hearing loss, only about one-fifth of people who could benefit from wearing a hearing aid actually use one, the FDA noted. The high price of the devices — about $4,600 a set — has been a major barrier. Medicare and many private insurance plans don’t cover the cost of hearing aids, so most consumers are stuck paying for them out of pocket.

In addition, six companies manufacture nearly all the hearing aids sold, and only one is based in the U.S., a White House blog post about the FDA decision said.

The impact of the FDA’s move could open the hearing aid market to new companies and more competition.

The ruling was one of several recommended by the Hearing Loss Association of America and other consumer groups. HLAA Executive Director Barbara Kelley commented, “We applaud the FDA’s decision to remove this requirement and believe it is a step forward to remove barriers and make hearing health care for consumers more affordable and accessible.”

“Today’s actions are an example of the FDA considering flexible approaches to regulation that encourage innovation in areas of rapid scientific progress,” said FDA Commissioner Robert Califf, M.D.

 

This post was first published on AARP Heath on December 8, 2016.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

Deaf and Dizzy: Is It Méniere’s?

Many people with hearing loss also have tinnitus. Some have vertigo. When all three conditions are present, the cause may be Ménière’s disease, first identified by French physician Prosper Ménière in 1861.

man-in-vertigoI emphasize “may” because Ménière’s is notoriously difficult to diagnose. There is no definitive test for Ménière’s. It’s a clinical diagnosis, based on symptoms. According to the Mayo Clinic, the criteria for Ménière’s are two episodes of vertigo, each lasting at least 20 minutes but no longer than 24 hours; hearing loss verified by a hearing test; tinnitus or a feeling of fullness in your ears. The fourth symptom, annoyingly vague, is the exclusion of other known causes of these problems.

Idiopathic Ménière’s (that is, where the cause is unknown, which is true most of the time) is frustrating to both doctor and patient. The diagnostic procedure is basically to eliminate x, y and z possibilities and then settle on Ménière’s. Ménière’s expert Steven D. Rauch, M.D., of Harvard Medical School and the Massachusetts Eye and Ear Infirmary, describes it as one of the most “vexing” clinical conditions that an ear specialist may encounter.

The problem is, when a condition is disabling, you want a diagnosis, and Ménière’s is an easy catchall. Even though the disease affects just .2 percent of the population, the Framingham Heart Study—a long-running, federally funded study on cardiovascular health—found that 1,000 times that number (2 percent) think they have Ménière’s, probably having been told that by a doctor who was as eager for a diagnosis as the patient.

It’s important when diagnosing Meniere’s to distinguish vertigo from dizziness. Vertigo is not the same as dizziness. With the latter, you feel unsteady in a stable world. You walk like a drunk. You have to hold on to things to remain standing. You can’t walk in a straight line.

With vertigo, the world seems to spin around you. The most common type is benign paroxysmal positional vertigo (BPPV), which is treatable by a doctor and with home exercises. It is an inner-ear problem but is not connected to hearing loss. My AARP colleague Candy Sagon has written about treatment for BPPV —Fixing Vertigo With a Turn of the Head..

True vertigo, which is related to hearing loss and may be caused by Ménière’s, often comes on very quickly and can last anywhere from a few moments to days or even longer. Some people suffer from it for months at a time. When you feel an attack coming on, you have to sit or lie down immediately, and you may vomit. I have this kind of vertigo. My acute attacks last for a couple of hours. I can tell that one is coming on when my eyes start to swivel to the left. I’m so drained afterward that I usually sleep for the rest of the day and night.

I don’t have Ménière’s, because I have neither tinnitus nor a fullness in the ears. I also have bilateral hearing loss, and Meniere’s usually affects only one side.

If it isn’t Ménière’s, what, then, is it? In my case it’s probably migraine-associated vertigo (MAV). MAV is equally disabling but usually is not accompanied by hearing loss. So my hearing loss and my vertigo are probably not related. Sometimes Ménière’s and MAV occur in the same patient. But because migraine is so common in the general population, MAV is about 10 to 15 times more common than Ménière’s as the cause.

If you think you might have Ménière’s, you might want to read the article “How Does the Doctor Know I Have Meniere’s?” by Timothy Hain, M.D., of the Chicago Dizziness and Hearing Center, who provides an excellent description.

Ménière’s is not curable — at least not yet — but it is treatable, especially the vertigo attacks. Although almost all sufferers gradually lose hearing in their affected ear, vertigo attacks can be controlled or eliminated in over 99 percent of cases, according to Rauch.

Changes in diet can control vertigo in about two-thirds of patients. It’s important to stay hydrated and follow a lower-sodium diet. Sometimes diuretics are prescribed. Caffeine and alcohol may exacerbate symptoms in some patients.

The Vestibular Disorders Association suggests that triggers may include foods that contain the amino acid tyramine. Examples include red wine, chicken liver, smoked meats, yogurt, chocolate, bananas, citrus fruits, figs, ripened cheeses (for example, cheddar and Brie) and nuts. These are triggers for MAV, as well.

Lifestyle factors such as stress and sleep deprivation can affect vertigo, and managing these can help. Other factors are hormonal changes, allergies and fluctuations in barometric pressure.

If all else fails, surgery can eliminate vertigo in about 5 to 10 percent of the otherwise untreatable cases.

For a first-person description of dizziness and vertigo, I recommend “Hearing Loss vs. Dizziness: If I Could Choose,” by John Brigande, posted by the Hearing Health Foundation in February.  Just reading it made me feel dizzy, though, so be forewarned.

 

This post was first published on AARP Heath on November 14.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

Charity Events Like HLAA’s Walk4Hearing Raise Awareness and Spirits — As Well as Money

Fall and spring are prime times for charity fundraiser walks and runs, events that raise a substantial part of yearly donations and help raise public awareness for important medical conditions, including hearing loss.

 

mr-ronnie-jay-and-jody-at-2016-w4h
Singer-Songwriter Jay Alan Zimmerman kicked off the New York Walk with the National Anthem. CART Captions and ASL interpretation allowed everyone to follow along.

 

Some charities raise hundreds of millions from their annual events, like the American Cancer Society’s Relay For Life, the Susan G. Komen Race for the Cure and the Alzheimer’s Association’s Walk to End Alzheimer’s.

Compared with those behemoths, the Hearing Loss Association of America (HLAA) received about $1.8 million in contributions in fiscal year 2014, according to Charity Navigator, a group that evaluates charity finances. This puts HLAA in the minuscule category, in terms of funds raised. In terms of people served, however, it’s up there with the major groups, considering there are 48 million Americans with hearing loss.

In September, about 1,500 New York area residents of all ages, ethnicities, boroughs and neighborhoods showed up for HLAA’s New York City Walk4Hearing, one of 22 walks around the country this spring and fall. I’m the president of our chapter and saw firsthand this year how much work goes into pulling off a walk. Kudos to HLAA staff and our tireless volunteers.

Our 64 teams were made up of adults and children with hearing loss, families and friends of those with hearing loss, audiology students from eight colleges, and representatives from the Hearing Health Foundation and the Center for Communication and Hearing. We also had walkers from hospital audiology departments and from schools for children with hearing loss. And, of course, walkers from HLAA’s New York City chapter.

We raised more than $125,000 to support HLAA’s education and advocacy efforts to help lower the cost of hearing aids, to get Medicare coverage for hearing aids, and to fund the continuing fight for equal access for those with hearing loss.

This year, the theme of the Walk4Hearing went beyond merely raising money and awareness and general camaraderie. This year’s walk was also a call to action: All walkers and supporters were encouraged to take personal steps to improve their own access to better communication.

These included such simple acts as asking for a captioned telephone at work, requesting assistive listening devices at the movies or theater, and asking your pharmacy to install a hearing loop so that you can understand the pharmacist’s directions. HLAA has an extensive list of the kinds of actions people can take every day to raise awareness of hearing loss and to better their own lives.

We also asked participants to come up with their own ways to speak up, to acknowledge their hearing loss, and to help raise awareness of a condition that affects Americans of all ages.

We also made sure that everyone enjoyed themselves. We walked, we cheered, we laughed, we ate — apples, cookies, even ice cream bars. But mostly we just enjoyed being in the company of so many others like us. By gathering publicly and prominently announcing our cause, we also raised awareness of hearing loss, a largely invisible condition that affects people of all ages, races, and economic and social backgrounds.

I would encourage everyone to consider participating in one of these charity walks or runs — for hearing loss and/or any other condition that has touched your life — for the camaraderie as well as knowing you’re helping a good cause. But before choosing to participate (or to donate), I would check out exactly how a charity uses the money it raises. It’s not uncommon for only 50 cents of every dollar to reach the cause it benefits, according to a 2011 MarketWatch article. The rest goes to expenses. You do have to spend money to make money in most charity events. There are fees for park permits, portable toilets and so on. Some push these expenses to unacceptable extremes. You can also check out Charity NavigatorGuidestar or the Better Business Bureau’s Wise Giving Alliance.

HLAA’s Walk4Hearing is a small event compared to fundraisers for cancer, Alzheimers and others. But that means that every dollar means all that much more. Our $125,000 will go a long way towards furthering awareness, accommodations, and aid for people with hearing loss.

 

This article first appeared on AARP Health on October 12, 2016.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

Driving While Deaf: Not Taking My Own Advice.

I am not Deaf and not a sign language user, but I am extremely hard of hearing and I know how frightening it can be when the police pull you over and you’re unsure you’ll be able to understand them — or be able to make yourself understood. I also realize, thanks to my own recent traffic stop, how easy it is to make the kind of common mistakes that can get you in trouble.

These thoughts were prompted by the recent police shooting death in North Carolina of 29-year-old Daniel Harris, who was Deaf, is a reminder for all of us with hearing loss that we need to be extra cautious when pulled over by a police officer.

According to news accounts, Harris, who uses American Sign Language, was shot and killed after failing to pull over during a traffic stop near Charlotte. He was pursued by a state trooper as he drove to his own neighborhood, where he then got out of his car. The North Carolina State Bureau of Investigation is conducting a criminal inquiry into the incident and has declined to give further details.image3-1

Did the trooper not understand what Harris was saying to him, or vice versa? Investigators have not commented on whether Harris’ deafness played a role, but his brother believes that if the officer had known he was Deaf, things might have ended differently.

So what happened to me?

This summer as I was driving on the Massachusetts Turnpike (not speeding, I might add) I noticed a police car behind me in the lane to my left. He stayed there for many miles before finally turning on his lights to pull me over. The turnpike is a dangerous road, so I drove on to the next exit before pulling over.

As the officer got out of his car, I should have left my hands on the steering wheel where he could clearly see them, but instead I reached up to get a visor card identifying me as a deaf driver. I also reached over to the glove compartment (a risky move, I now know) to get my registration.

I should have watched as he approached the car so I would know on which side of the car to expect him, but I was too busy reaching for things. The next thing I knew, the officer was at the passenger side window. I was already confused about why I’d been pulled over, and I was completely nonplussed to see him on that side of the car. I’m not even sure I remembered to say, “I’m very hard of hearing,” which I normally do.

He ignored my offered registration and the “Driver is Deaf” visor card and said brusquely that, according to his computer, my driver’s license was expired. I didn’t understand what he was saying. I have a valid driver’s license. But then I remembered that four years ago I had replaced my Massachusetts driver’s license with a New York one, which is my official mailing address. I handed him the New York license. He looked it over, then grudgingly handed it back and walked away.

“Wait!” I cried. “I don’t know how to get back on the highway.” He didn’t turn around. I tried shouting. I thought about getting out of the car but decided that would be really stupid. I tried to wave him down as he drove by, but he ignored me. I was flustered and furious, but I eventually found my way back to the highway.

Other than his rudeness, nothing bad happened. If I weren’t a middle-aged white woman driving a VW Golf — who has learned to control her temper — it might have been different.

But I realize this kind of situation can be difficult and even dangerous for someone with hearing loss. Remember, a police officer can’t tell by looking at you that you’re Deaf or hard of hearing. Even if you tell the officer you have hearing loss, he’s still going to expect you to answer his questions. You need to be careful that you understand what the officer is asking. For example, unless you are sure he is asking for your registration, do not just reach over to the glove compartment to retrieve it, which could be misinterpreted as reaching for a weapon.

The situation is even more difficult at night, when the headlights from the police car behind you may blind you and make lipreading (also called speechreading) difficult. What if the officer doesn’t even get out of the car, but blares through his loudspeaker, “Get out of the car!” Or did he say, “Don’t get out of the car”? This kind of misunderstanding could get you killed, or at least roughed up. Unfortunately, the addition of hearing loss to a tense situation increases the likelihood things can escalate.

The American Civil Liberties Union and the actress Marlee Matlin, who is Deaf and married to a police officer, teamed up to produce an excellent video on how to handle a traffic stop if you are Deaf or hard of hearing. It has useful advice both for those with hearing loss and for those who hear perfectly. Matlin uses American Sign Language in the video, but it is also captioned and there is a voice-over for the hearing.

Another thing that can help is a visor card, informing police that you are Deaf or hard of hearing. The Driver is Deaf card from the Center for Hearing Loss Help can be ordered for $4.95.

There has been a lot of discussion on my website on exactly where to display the card. One suggestion, to tape it to the back window so an officer can see it as he walks up to the car, was nixed by those who thought such a prominent display would make drivers a target for muggers. The center suggests clipping the visor card to the driver’s side visor. You might also consider a second one for the passenger side visor as well.

The center also offers these other tips if the police pull you over:

  • If it is dark and you are able to, stop under a street lamp, or pull into a lighted parking area. This will make it easier for you to read lips.
  • Open your driver’s side window all the way so the officer can see you.
  • If it is dark, turn on your dome light.
  • Place both of your hands on the steering wheel well before any police officer approaches your vehicle. Police officers want to see both your hands at all times. Keep your hands on the wheel until after you establish effective communication with the police officer.
  • Show the officer your visor card and the instructions on the back so he knows how to effectively communicate with you.

You should also watch the officer closely as he gives you instructions. If you don’t understand the officer’s words, repeat: “I am Deaf [or hard of hearing]. I did not understand what you just said because I couldn’t hear you. Would you please write down what you just said?”

As the Harris case shows, those of us with hearing loss need to be extremely cautious if we are pulled over by the police. The visor card, and watching the video, is a good place to start.

 

Living Better jpegshoutingwonthelp

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

Hiding Your Hearing Loss? Not Worth It

New York’s second annual Disability Pride Parade on July 10 included representatives of various national hearing loss associations. They marched because hearing loss is a disability, but more importantly, because hearing loss is a hidden disability. We can never remind people too often that people with hearing loss need accommodations as much as someone in a wheelchair.

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HLAA-NYC member Ruth Bernstein at the Disability Pride Parade, with an HLAA umbrella.

 

Like most hidden disabilities, hearing loss comes with baggage that contributes to people’s reluctance to be open about the condition. Historically, hearing loss has been considered a sign of old age, impairment and declining mental capacities. Those with mental conditions, even when those conditions are controlled with medication, face similar worries about revealing their hidden health issues.

But this secrecy can have a deleterious effect on professional and personal relationships, affecting job performance and mental and physical health. I wrote about this in 2013 in a New York Times article headlined, “Quandary of Hidden Disabilities: Conceal or Reveal.”

Keeping a secret like this, living every day pretending you’re something you’re not, is debilitating. It undermines your confidence. You wonder if the disability is affecting your job performance and, if it is, if you’re the only one who doesn’t know it. You worry your employer or your colleagues will find out and you’ll lose your job. Firing someone for a disability is forbidden by the Americans with Disabilities Act, but employers find ways around it.

There is also the stress of having a condition that may get worse. With hearing loss, the progression is often unpredictable. I first lost my hearing in one ear when I was 30. I never dreamed that by the age of 60 I’d be profoundly deaf in that ear and close to it in the other. Because the cause of my hearing loss is undiagnosed, I also live with the worry that it may be a symptom of an as-yet-undiagnosed larger medical condition.

Those with disabilities bear the responsibility to speak out, but others should be sensitive to the fact that they may not feel confident enough to do so.

There are ways professionals can avoid inadvertently discriminating against people with hidden disabilities. Medical professionals need to recognize that complaints about depression and anxiety, as well as memory loss, may reflect an underlying, unacknowledged hearing loss.  Psychotherapists need to recognize the symptoms of a hidden disability with new patients, draw them out about it, and then confront the issues that the disability contributes to.

Finally, those who work with the elderly have a special responsibility to recognize hearing loss. Fully 50 to 80 percent of their clients will have hearing loss. It’s easy to mistake unrecognized — or even acknowledged — hearing loss for cognitive decline or even dementia.

 

This post first appeared on AARP Health on June 27, 2016.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

Yes, I Have Hearing Loss, Talk to Me Anyway

This bears repeating: It’s important to be included in the conversation.

True friends and understanding family will do that. They’ll repeat, they’ll rephrase, they might even spell it out. One friend pulls out a notebook and jots down the key words. It helps if I parrot back the parts of the sentence I did hear, so they understand what I missed.

But not everyone is as patient. How many times have I heard, “Never mind, it isn’t important”? Mimages-1aybe it isn’t, but I still want to hear it.

Nevertheless, constant repetition of something trivial does get tedious for the speaker — and for me! —  and so, sometimes in a social situation, I just let it go. I’d rather the person keep talking to me than understand every word.

(This is not something I’d do in a business meeting or in any important discussion, by the way. It’s just for social chitchat. And before you start lecturing me, I do use assistive devices, like an FM system or a Roger Pen. Sometimes I still just can’t hear.)

Is this wise? Do I really want to hear only part of a conversation? Maybe, depending on who the speaker is. What I do want is to be included in conversation. I want to be invited places. I want to be seen as someone fun and interesting, rather than as a constant drag on conversation. I know readers will criticize me for saying this. We people with hearing loss, especially advocates like me, are supposed to demand our rights, not lie down and surrender.

So why do I do just that — lie down and surrender? Why do I accept only part of the conversation? I think I have a good reason. A huge danger for people with hearing loss is isolation. Isolation is not good for your mental health. It can lead to depression and cognitive decline.

If I asked for clarification of every word, social chitchat would quickly bog down. As a result, I might not try again next time. That’s how isolation occurs.

For now, I listen closely, I try to gauge what I really want to hear and selectively ask the speaker for clarification. The rest of the time I smile and nod, or frown and sigh, or raise my eyebrows, or laugh appreciatively. How do I know to do this without knowing what was said? I follow the speaker’s face. The clues are all there. Of course I run the risk of a grossly inappropriate misreading of the speaker’s face. But that’s a risk I’ll take to keep people talking to me.

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For more about living with hearing loss, read my books “Shouting Wont’ Help “and “Living Better With Hearing Loss,” both available at Amazon.com.

 

This article first appeared in a slightly different form on AARP Health. 

What Would Helen Keller Do?

 

“Blindness cuts us off from things, but deafness cuts us off from people.”

Bouton: What Would Helen Keller Do?

                                                                       Helen Keller — Pictorial Press Ltd / Alamy Stock Photo

Did Helen Keller actually say this? No one knows.

She did express the idea in different ways. In one letter she wrote, “The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.”

Helen Keller lost her vision and her hearing when she was 19 months old, from an infection that was probably scarlet fever or meningitis. Like many toddlers at that age, she had some spoken language, which was presumably lost in the trauma of her illness.

Today Helen Keller’s parents would be offered the option of cochlear implants and speech therapy. Because she was also blind, conventional sign language would not be an option. The Deaf-Blind today use a form of sign language called fingerspelling,  or tactile sign language, which Keller herself used. She also learned to speak, although her speech was labored and difficult to follow.

Those with serious hearing loss often cite this quote. Although cochlear implants and hearing aids restore hearing, it may be to limited degree. Even with additional assistive devices and good lip-reading, a person with severe to profound hearing loss may still have trouble following speech in any but ideal circumstances. I know, because I’m one of them.

Nevertheless, I am certain that, given her blindness, Helen Keller would have embraced today’s cochlear implant technology. In a remarkable historic video, Keller speaks about the loss not of sight or hearing but fluid speech:

“It is not blindness or deafness that bring me my darkest hours. It is the acute disappointment in not being able to speak normally. Longingly I feel how much more good I may have done, if I had only acquired normal speech. But out of this sorrowful experience I understand more clearly all human striving, wanted ambitions, and infinite capacity of hope.”

When she died in 1968, at 87, the New York Times cited her many accomplishments: “she was graduated from Radcliffe; she became an artful and subtle writer; she led a vigorous life; she developed into a crusading humanitarian who espoused Socialism; and she energized movements that revolutionized help for the blind and the deaf.” She was a “symbol of the indomitable human spirit.”

It is hard to imagine that she could have “done more good” with the ability to speak. But her quotes suggest that she would have embraced the chance to hear “the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man” — and to respond with speech.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

This essay first appeared in a slightly different form on AARP Health.