Did You Grow Up with Hearing Loss? Lipreading Mom Needs Your Help with “Project Language & Literacy”

This is from Shanna Groves, Lip-Reading Mom.

My first experience with hearing loss occurred in kindergarten. When the teacher asked the class to listen to and respond to questions through headphones, all I heard through them was garbled spe…

Source: Did You Grow Up with Hearing Loss? Lipreading Mom Needs Your Help with “Project Language & Literacy”

A Look Back at 2016

For hearing health, 2016 had many bright spots, including for me, personally. Gratefully, I raise a toast to these successes:

Wouldn’t it be great if basic hearing aids were as easy to buy as reading glasses? The Food and Drug Administration (FDA) in early December took a big step toward making this happen, announcing that, effective immediately, it would no longer require adults to get a medical evaluation or sign a waiver of the evaluation before buying most hearing aids.

The FDA also said it was considering creating a category of over-the-counter hearing aids to encourage the development and marketing of more “new, innovative and lower-cost products to millions of consumers.” Many consumer groups saw both these developments as important steps toward providing affordable and accessible hearing health care to all.

Hearing loss is being recognized as a national health issue

In June, a series of recommendations on hearing loss announced by the National Academies of Sciences, Engineering, and Medicine seemed to be proof that hearing loss is finally getting its due as a national health issue.

If followed, these 12 recommendations — combined with those made the previous autumn by a presidential commission on science and technology — could result in a revolution in hearing health care. They would provide changes that would open the market to a wider range of hearing technology and devices, making it easier for consumers to “find and fully use the appropriate, affordable, and high-quality services, technologies, and support they need.”

Dedicated audiologists are making a difference

This one’s personal: I got a new hearing aid. The old one, despite being the most powerful on the market when it was first issued a few years ago, no longer gave me enough sound, especially in the speech frequencies. I was sure a second cochlear implant was imminent. But then my audiologist urged me to try a couple of new devices. The first two didn’t help but then, bingo, the third seemed miraculous. I could hear again. Cochlear implant deferred. Big thanks to my audiologist for her persistence.

Awareness of the importance of auditory training is growing

Increasingly, audiologists are realizing that they can’t just fit clients with a hearing aid or cochlear implant and not provide enough training on how to best hear with it. We need training. I found out just how important this training can be when I went to hearing camp for four days of audiologist-led hearing and brain training.

Theater is becoming enjoyable to everyone

I went to lots of great theater, thanks to the Accessibility Programs of the Theatre Development Fund, which provides open captions to many Broadway and off-Broadway shows. The peak was seeing Hamilton in June, with captions, two days before the Tony Awards. The cast was jazzed, and so was the audience. And I could follow every word.

Voice-to-text recognition systems are also improving and are excellent tools for people with hearing loss. Apple’s Siri answers questions in text, Google Voice translates speech messages into text on a smartphone, and Ava allows a small group of people to speak with instant captioning. Much else is in the works in this area.

It feels like there is some true momentum in the hearing loss field, from new technology to a recognition of the need for hearing access to a new awareness of the dangers of both noise and of untreated hearing loss.

I feel optimistic about the future — both for myself as a person with severe loss and for the millions of Americans with everyday noise- or age-related hearing loss. In the same way that I will still need my expensive prescription eyeglasses while my husband can buy his readers at the supermarket, we seem to be moving toward the same choice for those with hearing loss. While some will be like me, needing a $3,000 hearing aid, there are signs that soon many will be able to buy the equivalent of reading glasses for their ears — over-the-counter hearing devices that cost much less. Here’s hoping 2017 makes that a reality.

This essay first appeared on AARP Health on January 4, 2017.

http://www.aarp.org/health/conditions-treatments/info-2017/hearing-loss-issues-gains-kb.html   January 4

Good News About Hearing Loss, With Qualifications

Hearing loss is declining, according to a study published on December 15 by researchers at Johns Hopkins School of Medicine.

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At the top of Mt. Etna, April 2016, with Damian Croft of Esplora.co.uk. What does this have to do with hearing loss? Nothing! It’s a New Year’s treat.

This is good news.

But before you put back in those earbuds and conclude that all those reports of an “epidemic” of hearing loss were wildly exaggerated, read a little closer.

The study of almost 4000 adults 20 to 69 years old found that the overall prevalence of hearing loss (as measured in the speech frequencies) dropped from 16 to 14 percent in the years between 1999-2004 and 2011-12.  (Among adults 60 to 69, however, a whopping 39.3 percent still had hearing loss.)

The decline among working age adults was slight but statistically significant. Despite the fact that there was a greater number of older adults, “the estimated number of adults aged 20 to 69 years with hearing loss declined absolutely, from an estimate of 28.0 million in the 1999-2004 cycles to 27.7 million in the 2011-2012 cycle.”

“Our findings show a promising trend of better hearing among adults that spans more than half a century,” said Howard J. Hoffman, M.A., first author on the paper and director of the NIDCD’s Epidemiology and Statistics Program. “The decline in hearing loss rates among adults under age 70 suggests that age-related hearing loss may be delayed until later in life.”

The researchers attributed the decline to a decrease in noisy manufacturing jobs, to increased use of hearing protection (OSHA requirements for hearing protection have helped), to a drop in smoking and to better medical care.

A greater awareness of the dangers of noise may also have helped. It’s no longer unusual to see someone at a sporting event or loud concert wearing protective headphones. It’s the norm for people with ride-on lawn mowers or those doing other kinds of noisy yard work to wear headphones.

But before we celebrate and abandon advocacy for equal access for people with hearing loss, remember that the age group studied is getting older every day. In the coming years we can expect that normal age-related hearing loss will have its usual effects. “Despite the benefit of delayed onset of HI,” the paper concluded, “hearing health care needs will increase as the US population grows and ages.”

We’re still going to need cheaper and more accessible hearing aids. We’re still going to have to defeat the stigma of hearing loss so that people will wear those hearing aids – and help offset or prevent the negative health effects of untreated hearing loss.

We’re making progress against hearing loss, and that’s cause for celebration. But don’t give up the good habits that have allowed us to get to this point. The world is still noisy. We still need to protect our ears. There is still a lot of hearing loss. We need to treat it.

 

This post appeared in a slightly different form on AARP Health on Dec. 22, 2016.

What Do Consumers Want? Try Asking a Consumer.

If you asked consumers what is most important when buying a hearing aid, would they say price or sound quality?

Hearing Tracker, a respected independent online resource for consumers, and USB Evidence Labs recently surveyed more than 360 audiologists about what brands and features consumers ask for most when buying a hearing aid.

Not surprisingly, sound quality came in first by a long shot (56 percent), with reliability a distant second (17 percent) and value for money in third place (12 percent).

I don’t doubt that is exactly what the audiologists’ customers said they wanted. But I also wonder if the answers would have been different if consumers, especially those who never go to an audiologist, had been asked directly. I expect those consumers would say an affordable price was their top priority.

Currently, only 1 in 7 U.S. adults who can benefit from a hearing aid have one. Why don’t the other six?

The answer is cost. “Hearing aids are expensive,” Jan Blustein and Barbara Weinstein wrote in a June 2016 article in the American Journal of Public Health. Medicare and most insurance plans don’t cover them, and so consumers typically pay for aids and fittings out of pocket. And that can get costly. The average cost of a single hearing aid is $2,300, but because age-related hearing loss typically affects both ears, that’s a tidy $4,600 — a sum beyond the reach of many older people. Blustein and Weinstein note that “in a recent population-based prospective study, a majority of participants cited cost as a major deterrent to buying a hearing aid.”

Kim Cavitt, a past president of the Academy of Doctors of Audiology, says audiologists have turned a blind eye to consumer wants. In a recent article headlined “Have We Missed the Signs?” in Hearing Health and Technology Matters, she wrote that consumers “for the past decade have been clamoring for lower-cost amplification solutions,” meaning more affordable hearing aids or hearing aid–like devices.

The devices she refers to are lower-cost products that can effectively help with mild to moderate hearing loss. These won’t replace traditional hearing aids, she wrote but will expand the market by providing a gateway to more advanced traditional hearing aids.

She also noted that consumers want transparent pricing from audiologists — including detailed pricing of various goods and services — and access to assistive listening devices and aural rehabilitation. But mostly, consumers want hearing amplification they can afford.

This month, responding to that consumer demand, Senators Elizabeth Warren (D-Mass.) and Chuck Grassley (R-Iowa) introduced a bill to ease restrictions for getting hearing aids, including eliminating a required medical exam for many devices. The bill was supported by a number of organizations, including AARP and the Hearing Loss Association of America (HLAA), the nation’s largest consumer group representing people with hearing loss.

The legislation preceded an announcement from the Food and Drug Administration that it will no longer require adults to get a medical exam before purchasing certain hearing aids, clearing the way for a new category of over-the-counter devices.

Barbara Kelley, the executive director of the HLAA, endorses both developments.

“Each and every day,” she wrote, “our office receives letters, phone calls and emails from people with hearing loss inquiring about financial assistance to purchase hearing aids (up to 10 requests a day). The financial help page on hearingloss.org is the number one visited page on HLAA’s website. Sadly, there are few financial aid resources. Creating a category of over-the-counter hearing aids will go a long way toward making these essential devices affordable for the millions of Americans who need them.”

Cavitt agrees, although she isn’t by any means discounting the need for audiologists. People with serious hearing loss will always need audiologists and the services that only they can offer, she says.

For now, though, the goal should be finding an easier, financially feasible way to get the remaining 6 out of 7 Americans with hearing loss the devices they need.

 

This post was first published on AARP Heath on December 19, 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.

Breaking a Logjam on Over-the-Counter Hearing Aids

Cheaper and More Accessible Hearing Aids Could Also Help Reduce Stigma

This essay originally ran on Bloomberg View, December 12, 2016. HEALTH CARE

In the uncertainty over the future of U.S. health care, there is one ray of hope for a group of people who need more options, not fewer.

People with hearing loss usually pay out of pocket for hearing aids, and those pockets must be deep indeed. The average cost for a hearing aid is $2,300, and most people need two. They don’t last forever, and if your condition is progressive you may need to replace them as often as every four or five years.

No matter what your income level, hearing aids for adults are not covered by health insurance. They are not covered by Medicare, and they are not covered by most state Medicaid programs. The Affordable Care Act does not cover hearing aids. Some private insurers are beginning to pay, but it’s usually only a fraction of the whole. The V.A. and some state vocational bureaus do provide hearing aids. But essentially, you’re on your own.

The good news comes in the form of a bipartisan bill introduced in the Senate by Republican Charles Grassley of Iowa and Democrat Elizabeth Warren of Massachusetts.

Their Over-the-Counter Hearing Aid Act of 2016, introduced on Dec. 1, would make certain basic hearing aids available over the counter and at a far cheaper price than what a decent hearing aid costs today. Whether these devices would be called “hearing aids” under Food and Drug Administration regulations remains to be seen, but they will be hearing-aid-like devices made by hearing-aid manufacturers.

These devices are not for people like me with severe to profound loss. But they are what the more than 30 million Americans with age-related hearing loss could use, at least as starter devices. If the loss progresses, the need for more sophisticated equipment increases.

The Academy of Doctors of Audiology supports the bill with the caveat that the over-the-counter products “be very specifically labelled and include a strong recommendation that a patient seek a comprehensive audiological evaluation from an audiologist or physician.” There are certain red-flag conditions for which a person should always seek medical aid: sudden hearing loss, single-sided or asymmetric hearing loss, drainage from the ear, pain, dizziness.

But, the academy concluded, “There is a preponderance of data available today which demonstrates that when it comes to hearing loss, the risk of non-treatment may be greater than the risk of self-treatment.”

The Hearing Industries Association, while supporting “efforts to increase the accessibility and affordability of hearing aids,” expressed concern about the self-diagnosis of hearing loss. “The Over-the-Counter Hearing Aid Act of 2016 would compel the Food and Drug Administration (FDA) to allow OTC hearing aids. This will require consumers to self-diagnose both the cause and degree of their hearing loss…. It would do so in spite of the fact that no studies have indicated that people can accurately self-diagnose either the cause or the extent of their hearing loss.”

A week after Grassley and Warren introduced their bill, the FDA in a surprise announcement indicated that it is considering over-the-counter hearing aids, without any Senate mandate. The FDA announced that, effective immediately, it would no longer require adults to get a medical evaluation (or sign a waiver) before buying most hearing aids. It said that it was also considering creating a new category of OTC hearing aids to encourage “new, innovative, lower-cost products to millions of consumers.”

In doing so, the FDA was following the recommendations of two important scientific groups: the President’s Council on Science and Technology and the National Academies of Sciences, Engineering and Medicine. Consumer groups like the Hearing Loss Association of America and AARP have already endorsed these recommendations.

Thirty million Americans suffer age-related hearing loss. Only about 14 percent of them currently use hearing aids. The primary reason for this is the high cost.

Barbara Kelley, the executive director of the nonprofit Hearing Loss Association of America, said the group receives requests every day for information about financial assistance for hearing aids. (Disclosure: I am on the HLAA board.) “Sadly, there are few financial aid resources,” Kelley wrote in a letter to the Senate sponsors of the bill.

The high cost contributes to a second reason people don’t use hearing aids: stigma. Most people don’t use them until their hearing has deteriorated substantially, usually as they age. This means that in the popular mind hearing aids are for the elderly — which is false, since more than half of those with hearing loss are under the age of 60. If all the people of all ages who could benefit from hearing aids used them, they would be as common as glasses.

Making hearing aids more affordable and more accessible also increases use. And as use increases, stigma declines. So do the consequences of untreated hearing loss like depression and isolation, cognitive decline and a greater risk of falls. These are enormous public-health issues, as well as personal problems. Reducing the incidence of hearing-related cognitive decline alone will save billions in health-care dollars.

The Grassley-Warren bill is good for people with hearing loss. Even better is that the FDA seems on its way to making the bill unnecessary.

This column does not necessarily reflect the opinion of the editorial board or Bloomberg LP and its owners.

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.

The Day I Lost My Hearing

Every year I observe the day I went deaf. My life changed that day. At first it seemed nothing but negative, a catastrophe. Now I see that it gave me an opportunity, a door that opened onto a new world.

I remember the day because it was a holiday — Halloween. My hearing had been in a steady decline for three decades, but it was on Halloween of 2008 that I realized it was irretrievably gone.

I had started a new job two months earlier, and learning the routines had been stressful. Once I mastered the systems, I began to realize just how hard the actual job was, with too many elements and too many deadlines. I could tell it was affecting my health, but I was only two months into it. No turning back.

On that Monday, I had a routine flu shot. I began to feel woozy that evening, and by Tuesday I was dizzy and slightly nauseated. By Wednesday my ears were blocked. I was also hypersensitive to sound. This wasn’t the first time I’d had those symptoms, and they usually indicated a downward fluctuation in my hearing. I made an appointment with my ear, nose and throat doctor for Friday morning. I continued to suspect the flu shot as culprit, but I knew it was just my hearing, doing its mysterious disappearing act.

I live in New York, and my trip to the doctor was two subway rides. It was morning rush hour and Halloween, a frenzied combination. Teenagers in makeup shouted and roughhoused. Two businessmen hung over my seat talking loudly. A panhandler in a wheelchair hollered his pitch for donations right next to me. The noise was overwhelming. I covered my ears with my hands and shrank down into my seat. At this visit, I couldn’t hear my longtime doctor. He wrote questions for me on his computer. A hearing test confirmed the worst.

Oral steroids are a standard treatment for sudden hearing loss, and although mine didn’t fit that description, he prescribed them anyway, a blockbuster dose gradually decreasing over the next two weeks.

 

I was already stressed and overwhelmed with anxiety. Now I panicked. How could I possibly do my job with my hearing as diminished as it was? I took the rest of that day off, working from home. I sobbed and raged and sank into a fierce depression over the weekend. On Monday I went back to the office. I made vague reference to my hearing having been affected by the virus I’d had but stayed far from the truth.

My hearing never got better. I struggled through another year, pretending to myself that I was managing. I’m a good lip reader, and I set strategies in place to maximize my ability to understand. The following September I got a cochlear implant, but after three decades of profound hearing loss in that ear, it didn’t help much. Still, I thought I was getting away with it. Then a tough new boss came in. He didn’t buy it. I wasn’t a team player, he said.

I left that job at the end of the year. At first it seemed like a huge defeat. But as I gathered my strength and began to consider what to do next, I came to think of my hearing loss as an opportunity. I had been clueless about hearing loss. I thought my situation was unique. I was embarrassed to be going deaf at such a young age. I hid my hearing aids and I tried to hide my cochlear implant. I knew nothing about support groups or advocacy for people like me.

And that was my opportunity. I could share what I learned, and continue to learn, about hearing loss. I joined the Hearing Loss Association of America and found other people like me. I became an expert — writing and talking about hearing loss from the patient perspective, and eventually from the consumer perspective. It’s an interesting transition from patient to consumer. As a patient, you are mostly a passive participant, hoping for the best. As a consumer, you have rights. And as an advocate, you channel both of those roles into making your disability your strength.

I never think about that Halloween without a tinge of sadness. But out of that experience came a chance for a second act. One of the things I have found most interesting in my new life is how many other people have also been forced into a second act, by hearing loss or by other misfortune.

Many of my Hearing Loss Association of America colleagues have also become hearing-health activists, many of us working as hard at it as we ever did in our paid professions. For me, and for others, it’s also far more gratifying than my paid work ever was. And the best part — it’s given me a whole new life.

I know it’s true for others. Please share your experience in the comments section below. If yours wasn’t as positive, remember that mine also had — and continues to have — its downs as well as its ups. Nobody ever said it was easy. But that doesn’t mean it doesn’t have its rewards.

This post was first published on AARP Heath on December 5, 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.