Awareness

Staying Vital

By Lauren McGrath

My father is an avid concertgoer who turned 61 in February, and I’ve been trying for more than two years—since I joined the team at Hearing Health Foundation (HHF)—to convince him to get his hearing tested.

I do not know whether or not my father has an identifiable hearing loss, but I know that a person of his age should take extra precaution for his ears. The World Health Organization advises: “If you are beyond the age of 60, work in a noisy environment, or have frequent exposure to loud noises, an annual hearing check is recommended.”

Lauren and her father at a music festival in Athens, Georgia.

Lauren and her father at a music festival in Athens, Georgia.

As an adult, I have had my own hearing tested twice, first with an audiologist at the Center for Hearing and Communication in New York City, and later over the phone using an automated system. Though I have never experienced difficulty in conversations or noisy spaces, I appreciated that these non-intrusive tests provided reassurance my hearing falls within the typical range. If a loss was identified, I would have been equipped to seek treatment immediately.

“Hearing tests are quick, easy, and painless, Dad,” I persist, but he’s still adamant about not getting one of his own, despite being generally proactive in other areas of his health. As we now know, ignoring a hearing loss can result in additional serious medical issues affecting the whole body, including cognitive decline and dementia, falls, social isolation, and depression.

With my ongoing support (read: badgering), I expect my father will take my advice in the near future. But most of the U.S. adult population does not have someone in their life checking up on their hearing health unless they are already treating a known hearing condition. 

Because the importance of healthcare is still severely underappreciated, I’m immensely grateful for the “Hear Well. Stay Vital.” campaign. This awareness initiative launched by the Hearing Industries Association (HIA) in early 2019 has as its objective to encourage more people—starting with baby boomers, like my dad—to check their hearing annually and take appropriate action with the results. 

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“Hear Well. Stay Vital.” is centered on the preservation of our passions. The campaign website states: “We all have passions that inspire us, hobbies and interests that energize and make us feel like our true selves. Singing. Tennis. Dancing. Motorcycling, Yoga. Pottery. Hiking. Gardening. Traveling. Socializing. This concept is designed to capture those passions and help people understand that to stay vital and preserve their passion, they need to manage their hearing health. So, get a hearing wellness check annually and stay true to yourself.” 

HIA was largely inspired by a 2016 report by the The National Academy of Sciences, Engineering, and Medicine onHearing Health Care for Adults: Priorities for Improving Access and Affordability.” One recommendation of this report, to which HHF Board of Directors member Judy Dubno, Ph.D., contributed, calls for improving publicly available information on hearing health. 

“Hearing health and routine hearing checks do not receive the attention directed to other health issues. Many people can cite statistics relative to their unique health, such as height, weight, heart rate, cholesterol, vision and more. But not hearing,” says Kate Carr, president of HIA. 

HHF is a partner in the campaign, along with the Academy of Doctors of Audiology, the American Academy of Audiology, the American Cochlear Implant Alliance, the American Speech-Language-Hearing Association, the Hearing Loss Association of America, and the International Hearing Society.

HIA encouraged a major push during May’s Better Speech and Hearing Month to garner awareness. As of August, PSA videos were distributed to more than 3,000 network stations across the U.S. The PSA videos are in the top 10 percent of more than 1,000 videos tracked by Nielsen. 

“Anyone can join in this effort to improve hearing health,” Carr says. The campaign website hosts videos and a social media guide for free download and distribution. 

I’m hopeful that education will continue to increase and, one day, hearing tests will be perceived as important as dental cleaning and vision checks. 

Music is my dad’s passion. He sees an average of 40 concerts each year (with earplugs, of course), and his CD and record collection totals over 3,000. I want him, and individuals at risk of hearing loss, to preserve their ability to enjoy what they love to the fullest.

For more on the “Hear Well. Stay Vital.” awareness campaign and free shareable resources, see hearwellstayvital.org.

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Breaking Stereotypes: Hearing Loss in the Media

By Alexander Chern, M.D.

Last summer’s blockbuster film “A Star Is Born” brought hearing loss into mainstream media. What has the entertainment industry done since? 

Friend: This is my friend Ally.

Ally: Oh, my God! Hi.

Jackson: Hi. Hey. 

Ally: I thought that might be you.

Jackson: What’d you say?

Ally: I thought that might be you.

Jackson: That’s me.

Ally: So why are you in here hon?

Jackson: Sorry?

Ally: What brings you here?

Jackson: Oh I was playing right around here tonight. I’m a musician.

This exchange stood out to me while watching “A Star Is Born,” the blockbuster film from the summer of 2018 about a hard-drinking, seasoned rock star, Jackson (played by Bradley Cooper), who discovers and falls in love with a struggling artist, Ally (Lady Gaga). 

This scenario is familiar to most people (with or without hearing loss)—sometimes we miss a few words here and there when having a conversation in a noisy environment, such as a loud concert or a cocktail party. But something felt strange about this scene; this type of situation rarely happens in a movie, let alone twice in one scene, because movies are scripted. 

In most movies, any imperfections of daily life are often erased from movie dialogue so that everyone seems perfect—and this includes the ability to hear. As a resident physician in otolaryngology–head and neck surgery (also known as ear, nose, and throat surgery, or ENT) and as a person with hearing loss, I suspected there was something more to this than meets the eye. Several scenes later, my hunch was proven correct when we learn that Jackson suffers from hearing loss and tinnitus. 

Bradley Cooper and Lady Gaga in “A Star is Born.” Credit:    Peter Lowe   , Flickr.

Bradley Cooper and Lady Gaga in “A Star is Born.” Credit: Peter Lowe, Flickr.

When Jackson visits a hearing specialist (a cameo by William Slattery III, M.D., an otolaryngologist from the House Ear Clinic in Los Angeles, and Cooper’s actual ear doctor), they discuss Jackson’s hearing loss and the importance of using in-ear monitors to protect his hearing while performing. In the next scene, Jackson adamantly refuses to use hearing protection when performing at loud rock concerts, and he later explains that his struggles with hearing and tinnitus began when he was younger. His hearing worsened throughout his career as a musician, suggesting he likely has noise-induced hearing loss from exposure to loud sounds, a common occupational hazard in the music industry. 

Hearing loss is both underrepresented and misrepresented in the media, which frustrates many of us who actually have hearing loss. When hearing loss is represented in the media, it is often in connection with aging—individuals who are hard of hearing have typically been depicted as elderly, isolated, and disabled individuals who are dependent on others. Other media representations of hearing loss focus on Deaf culture; television shows like “Switched at Birth” and “The Society” and movies like “A Quiet Place” and “Wonderstruck” represent individuals with deafness, but are not necessarily relatable for all individuals across a wide spectrum of hearing loss. 

In contrast, Cooper’s character in “A Star Is Born” is a famous, still-young music celebrity who does not meet the typical stereotype of someone with a hearing loss. As the movie progresses, we watch Jackson struggle with his hearing loss and its impact on his self-image as he continually refuses to have his hearing treated or protected while exposed to loud music onstage. 

Though Jackson’s struggles with his hearing are not the main focus of the movie, this subplot also reminds the public that this condition not only affects the elderly—young people can have hearing loss, too. One in five young adults ages 20 to 29 reportedly has trouble hearing. And fewer than 16 percent of individuals ages 20 to 69 who could benefit from wearing hearing aids have actually used them. 

I can relate to Jackson’s struggle to reconcile his image with his hearing loss. Even though I am currently an ENT physician-in-training, pursuing a career that helps treat people with hearing loss, I spent almost 10 years of my life while in college and medical school refusing to wear my hearing aids when I certainly could have benefited from them. As a young person with a hearing loss (I am 29), I made life harder for myself for no good reason other than what I felt was society’s perception of people with hearing loss.  

The media is the fastest and most cost-effective way to raise awareness and eliminate stereotypes, promote inclusion of individuals with hearing loss, and reduce the perceived stigma that is still ingrained in our society. Doing so will also help us fight the hidden epidemic of hearing loss, which is both highly prevalent and severely undertreated. 

Credit: Disney Studios

Credit: Disney Studios

Not so long ago, people persisted in using terms such as “deaf and dumb,” “deaf-mute,” and “hearing impaired” to refer to these individuals. Such terms reflect the unconscious biases people have against such individuals who struggle with hearing, which, in part, prevents them from seeking treatment. I believe those who work in entertainment—writers, producers, and directors—should take the artistic responsibility to portray individuals with hearing loss in an accurate, authentic, and diverse way. 

In addition, the frequency of individuals with hearing loss portrayed in the mainstream media needs to more accurately reflect its real-life prevalence. According to the National Institute on Deafness and Other Communication Disorders, about 20 percent or 48 million Americans report some degree of hearing loss. Normalizing hearing loss and fighting stereotypes will also require the entertainment industry to show us more characters with hearing loss wearing modern, digital hearing technology. We also need more character development, storylines, and subplots about hearing loss, not to mention actors, directors, and writers affected by this condition who are best able to tell such stories. Diverse media representation will be crucial in raising awareness and educating the public about hearing loss. 

I recently saw “Toy Story 4,” the latest installment of Pixar’s iconic “Toy Story” series that began decades ago, in 1994. I was thrilled to see the creators of the movie took a big step toward inclusivity when they featured a young child wearing a cochlear implant with a bright green processor. (It’s in an early scene when Bonnie goes to kindergarten for the first time and meets her classmates.) 

I remember, as I am sure many of us do, what it felt like to be made fun of for wearing hearing aids as a child—it was embarrassing. For many, this perceived stigma is often a barrier to obtaining treatment for their hearing loss. Wearing hearing aids makes us feel different, and not in a positive way. Glasses, a medical device seen as part of everyday life for many people, used to be stereotyped as being worn by nerdy kids without any friends. However, glasses are now considered fashionable and stylish—many individuals wear glasses even if they do not have vision loss. 

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There is no reason why having hearing loss treated with hearing aids or cochlear implants should be perceived any differently than having vision loss treated with glasses, especially nowadays when wearing name-brand headphones or earbuds or other accessories on the ear is commonplace. Though there is still a long way to go in raising awareness, breaking stereotypes, and making hearing loss hardly anything different in the media, that little boy in “Toy Story 4” rocking his bright green processor marks an important first step. 

Alexander Chern is a second-year ENT resident physician at NewYork Presbyterian Hospital, Columbia/Cornell.

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Net Gains

By David Pierce

In 1979, captioning was in its infancy on broadcast television. Services were provided by Caption Center (which had been doing it since 1972) and National Captioning Institute, which was launched in 1979 to serve as competition to Caption Center. Only a few television series were being voluntarily captioned, as Federal Communications Commission captioning regulations did not yet exist. 

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Also that same year, Silent Network was launched in Hollywood to provide broadcast television programming for viewers who were deaf and hard of hearing using sign language, open captions, and full sound on broadcast and cable. The word “SILENT” is an acronym: “SIgn Language ENTertainment.”

It was a pioneering time for accessible television, and the general public was being exposed to captioned and sign language programming on a national basis. Silent Network was founded by Hollywood veteran Sheldon I. Altfeld and Kathleen Gold. Gold’s daughter, Julianne, was born deaf, and became a Broadway actress appearing in the original Tony Award–winning production of “Children of a Lesser God.” The founders identified the need for actors and producers who were deaf and hard of hearing to have a place to work, and the network was formed to fulfill that goal. 

The network’s first program, “Sign of Our Times,” aired on NBC in 1979 during a prime-time slot and was hosted by comedian Norm Crosby. The response was overwhelming, and the network expanded its offerings to broadcast, cable, and satellite. By 1995, it was a full network airing 24 hours a day, 7 days a week. Around the same time, when broadband internet was relatively new and serving low-resolution streaming video, it was one of the first 24/7 networks to stream its live satellite signal to the internet simultaneously.

Silent Network cofounders Sheldon I. Altfeld and Kathleen Gold with comedian Norm Crosby during the production of "Sign of Our Times" in 1979.

Silent Network cofounders Sheldon I. Altfeld and Kathleen Gold with comedian Norm Crosby during the production of "Sign of Our Times" in 1979.

Over the years, as it earned several Emmy Awards and other accolades, Silent Network weathered ongoing changes in the media landscape but eventually ran into financial difficulties. It entered into economic hibernation in 2000 when the network went off the air via satellite. However, with the advent of over-the-top (OTT) television, which allows content creators to stream their products directly to consumers, the network relaunched in 2017. 

Along with Silent Network and its sign language programming, a new network called Access Network was launched in 2018, providing open captioned and language-free programming for the general public and deaf, hard of hearing, and people learning English as a second language. The language-free content can be viewed by anyone around the world, with strong visuals relaying the story instead of spoken word. In 2019, as part of its 40th anniversary celebration, Silent Network launched a second OTT network for Roku players and TVs, free to Roku subscribers. 

In the network’s long history, it has experienced different owners, resulting in several changes to the network’s name. In recent years, the network reverted back to its original name of Silent Network by the current owners—my wife Robin Byers-Pierce, and me. 

As the network’s longest-standing alumnus and profoundly deaf, I was involved with several aspects of the network over a 32-year period as it underwent various incarnations. I currently run the post-production and master control operations of the network at our two locations in Texas. Robin, also a longtime alumnus who is hard of hearing, handles editing, captioning, and interpreting work for the network.

Herb Larson (left) and Lou Fant (center) with actor Lou Ferrigno on the set of Silent Network's long-running series “Off-Hand.”

Herb Larson (left) and Lou Fant (center) with actor Lou Ferrigno on the set of Silent Network's long-running series “Off-Hand.”

With the network’s large archive of 15,000 programs, videotape preservation and restoration work is a regular practice in order to preserve the content for the benefit of future generations. Most broadcast videotape has a shelf life of between 20 to 35 years (dependent upon proper storage conditions), so it is a ticking time bomb for the older programming. Our film and video preservation company, Davideo Productions, performs the restoration work.

The network’s content is varied to target different age groups and constituencies. On a new service called Access Community, which is part of Access Network, professional content providers can contribute their own unique programming in sign language. Viewers who are hard of hearing, especially senior citizens who lost their hearing later in life, seem to gravitate toward the open captioned programming on Access Network, especially classic films and television shows. People for whom English or sign language is not a native language can enjoy the language-free programming that has no dialogue. 

New content is added to both Silent Network and Access Network on a weekly basis. Robin and I are proud to carry on the network’s legacy of accessibility and inclusion. 

For nearly 35 years, David H. Pierce has worked in all aspects of television programming and production and has a long list of production credits. A writer and advisory board member for this magazine in the 1980s, Pierce is a managing partner of Silent Network. A certified sign language interpreter since 1976, Robin Byers-Pierce owns Specialty Interpreters and is a partner at Silent Network. For more, see thesilentnetwork.tv, accessnetwork.tv, davideo.tv, and channelstore.roku.com/details/285737/access-network.

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Which Restaurants Are Way Too Loud (or Not)? Get Real Data and Share It!

By Kathi Mestayer

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Recently, I found myself in a restaurant that was so noisy, the waitress leaned over and told us, “I can’t hear in here, either!” So, it’s not just me. In fact, a 2015 survey by Zagat that found that noise in restaurants was listed as the top complaint by diners.

One of the more satisfying things I do in that situation is to get out the decibel app on my smartphone and take a measurement. Is it really that loud? The answer is usually yes! I’ve gotten decibel readings as high as 95 dBA (“dBA” refers to decibels adjusted for human hearing). So, I gripe politely to the wait staff or manager, and consider adding it to my “never again” restaurant list. Or I visit during off hours, at 3 p.m.

Then I discovered that there are decibel apps that allow you to share your data on how loud (or quiet!) the restaurant is! Here’s SoundPrint, which I have been using for a couple of years with great success (and whose founder wrote in the Spring 2019 issue of Hearing Health about the genesis for the app).

Here is how SoundPrint works:

1. Download the app from the site above.

2. When you want to take a decibel reading, take out your iPhone, open the app, and touch the “Start” button. Record the dBA level for at least 15 seconds.

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3. Then, hit “Stop.” 

4. To share the sound level at the restaurant/bar/coffeeshop, hit the “Submit” button. 

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5. That will take you to the “Your Location” screen, which will give you its best guess as to where you are. You can also enter the name of the venue into the field near the top. (It will be easier to find the venue if you have the “Locations” setting activated on your iPhone. You can turn it off again immediately, if you’re as paranoid as I am.)

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6. Select the venue and hit “Submit.” Your data will be on the SoundPrint site, without your name or any identification, for the rest of us to see. I’ve submitted data on places that are way too loud or nice and quiet. 

I just took a look, using the Search icon at the lower left of the iPhone screen, at Richmond, Virginia, where I live, and got a few hits! The red ones are way too noisy, orange is pretty noisy, yellow is a little noisy, and green is… quiet! The brown ones are venues that don’t have any data yet.

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Clicking “View details” got me to the address and phone number, and gives you the option of leaving a comment. Now, that said, if you go there and it’s loud, you can take another measurement and submit it, too. And you can add a comment for others to see.

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If SoundPrint users continue to add to the database, for places all around the country, and especially when places are quiet(ish), it results in such a wonderful shared resource! My favorite memory is of the time I was taking a decibel reading and the waitress was looking over my shoulder, very curious about what I was up to. I showed it to her, and hope she shared it with the manager.

Staff writer Kathi Mestayer serves on advisory boards for the Virginia Department for the Deaf and Hard of Hearing and the Greater Richmond, Virginia, chapter of the Hearing Loss Association of America.

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Close-Minded Captioning

By Amber Gordon

Sound can provide remarkable connections to the world around us. As a Longwood University communication sciences and disorders student, I’ve come to better understand how people with hearing loss experience sound, and that improvements to accessibility are urgently needed.

I have typical hearing, but know from Longwood professor Mani Aguilar, Au.D., that insufficient access to auditory information can have negative emotional and social consequences in many areas of life, including entertainment. Watching a TV show with a friend with typical hearing and not understanding why they are laughing is bound to make one feel left out.

While hearing aids and cochlear implants are extraordinarily beneficial to communication, many people with hearing loss rely on captioning to fully access audiovisual media. Because of its necessity, the Americans with Disabilities Act (ADA) requires closed captioning for video transcripts by state and local government entities and “places of public accommodation” (including universities, libraries, and hotels). Sections 504 and 508 of the Rehabilitation Act require the electronic communications of U.S. federal offices and federally-funded organizations to be accessible and captioned. 

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For TV programs, the Federal Communications Commission (FCC) requires TV captions to be “accurate, synchronous, complete, and properly placed.” The 21st Century Communications and Video Accessibility Act calls for “video programming that is closed captioned on TV to be closed captioned when distributed on the Internet.”

But there are no existing laws to address captioning in the majority of online video. This was brought to light when the National Association of the Deaf sued Netflix for the lack of closed captioning on videos on their site. The district judge ruled in favor of closed captioning on streaming services; however, because this was not a Supreme Court ruling, the case did not establish a national model for ADA’s standards for online services and businesses. 

Many streaming services do include closed captions within their video services with no stipulations for quality. As noted in HuffPost, the Netflix series Queer Eye had inaccurate captions that censored profanity and changed words being used in multiple instances. A Reddit user states that shows on Netflix and Amazon Prime, in general, do not signify who is talking when they are off-screen, creating confusion as to which character is saying what.  

Meanwhile, platforms like YouTube and Facebook remain unregulated. Enabling auto-captioning on videos is merely an option for video creators, and, in many cases, this auto-generated captioning is not accurate. For precise captions, video creators must make manual edits, which can be time-consuming or expensive. 

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Consider also that tone and verbal inflection can change the entire meaning of a sentence. Spoken words are just part of the piece the puzzle for those who rely on captions. According to The Atlantic, machine translation “can’t register sarcasm, context, or word emphasis. It can’t capture the cacophonous sounds of multiple voices speaking at once, essential for understanding the voice of an angry crowd of protestors or a cheering crowd. It just types what it registers.” 

We already have requirements for government programming and news alert systems. We have accessibility laws for television and even for some online content. But as entertainment becomes increasingly digital, these regulations must be transferable.

Otherwise, information remains lost in translation because captioning laws are only applicable to some circumstances. Isn’t access for everyone, regardless of hearing ability, enough reason to advocate for expanded captioning? Why must those with hearing loss be kept back by where we’ve drawn the line on accessibility?

If you are a hearing individual, I encourage you to place yourself in the shoes of someone with hearing loss. Mute your TV for a day. Mute the sound on your device playing YouTube or Facebook and enable closed captioning. How long does it take until you get annoyed? Frustrated? I’m willing to bet not very long. 

It is undeniable that closed captions have contributed greatly to the advancement of accessibility for people with hearing loss, but much work remains. We have to recognize the urgency of reliable captioning in online media.

What can we do? If you’re in a restaurant and notice that there are TVs playing without captions, politely request them. If you run a business where there are waiting rooms and lounges with televisions, please turn on captions. If you watch YouTube and notice that one of your favorite creators does not caption their videos, leave comments or write emails to encourage them. Hold streaming services like Netflix and Amazon Prime accountable by letting them know when captions are inaccurate or poorly transcribed. Lastly, if you’re watching television or your favorite show and you notice poor closed captioning, file a complaint to the Federal Communications Commission under the “Access for People with Disabilities” section of their Consumer Complaint Center. 

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Slowly but surely, if we continue to think of others who are unlike ourselves, strive for empathy and advocate for equal accessibility for all, a change can and will be made. 

Amber Gordon is an aspiring speech-language pathologist who lives in Virginia.

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HHF Co-Sponsors Hearing Health Care Economics Presentation on Capitol Hill

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By Lauren McGrath

Our aging population’s lack of access to hearing loss treatment is a public health crisis. More than half of Americans 60 and older live with hearing loss. When left untreated, hearing loss can increase the risk of cognitive decline, social isolation, falls, and dementia. Unaddressed hearing loss is also connected to higher rates of unemployment, longer hospital stays, and premature mortality.

On May 29, 2019, Hearing Health Foundation (HHF) and 11 other Friends of the Congressional Hearing Health Caucus (FCHHC) member organizations co-sponsored a briefing luncheon on the economics of hearing health care for Congressional staff and other Federal employees at the Rayburn Office House Building on Capitol Hill.

As both a leader in hearing loss research and a founding member of the FCHHC, the coalition that supports the policy interests of the Congressional Hearing Health Caucus (CHHC), HHF is committed to increasing adoption of hearing loss treatment. The CHHC, a U.S. House of Representatives caucus* co-chaired by Reps. David McKinley (R-WV) and Mike Thompson (D-CA), aims to raise awareness of issues that affect Americans with hearing loss, and has previously been influential in the passage and preservation of universal newborn hearing screening legislation. Each year, the FCHHC organizes a briefing for Congressional staffers on an important topic in hearing health.

Event Flyer (Click to Enlarge)

Event Flyer (Click to Enlarge)

The year’s meeting, entitled “Understanding the Cost of Not Treating Hearing Loss in Adults,” featured two expert speakers, Richard K. Gurgel, M.D., clinician and Associate Professor of Otolaryngology at University of Utah School of Medicine, and Ian Windmill, Ph.D., Clinical Director of the Division of Audiology at Cincinnati Children's Hospital Medical Center.

Gurgel and Windmill spoke about the prevalence of hearing loss and its impact, noting that by 2060, this sensory deficit — the most common among seniors — will impact more than 73 million adults, with the overwhelming majority financially unable to pursue treatment. According to the NIDCD, about 70% of adults ages 70 and older who could benefit from hearing aids have used the devices.

Cost is the largest barrier to purchasing hearing aids, the primary treatment for hearing loss, among adults in the U.S. A 2017 Hearing Health Foundation (HHF) and Hearing Loss Association of America (HLAA) survey found that the cost of hearing aids exceed the next most commonly cited limitation — uncertainty about where to get hearing tested — by 575 percent.

Both Gurgel and Windmill cited the implications of paper entitled “Cost-Benefit Analysis of Hearing Care Services: What Is It Worth to Medicare?”, published in the Journal of the American Geriatric Society in April 2019. The paper’s authors determined that the average annual spending of Medicare beneficiaries who use hearing care services is $8,196, which the spending of those who do not use hearing care services is $10,709, an annual difference of $2,513 per recipient. This difference amounts to a cost savings of more than $7 billion to Medicare annually.

Windmill also cited a report showing that worker’s compensation costs related to hearing loss for a single year in Kentucky averaged $14,500 per person and amounted to a total of $14.5 million statewide. From this report, we can estimate at least $725 million in worker’s compensation payments related to hearing loss are made each year.

While the Congressional luncheon attendees were enthusiastic, and the economic case for Medicare coverage of hearing aids is compelling, more advocacy work is needed to maximize the number of older adults treating hearing loss. HHF encourages you to take action by inviting your local representatives to join the CHHC and to garner support for relevant existing bills: Medical Hearing Aid Coverage Act of 2019 (H.R. 1518), Medicare Dental, Vision, and Hearing Benefit Act of 2019 (S. 1423 / H.R. 1393), and the Seniors Have Eyes, Ears, and Teeth Act (H.R. 576).

You can learn more about the FCHHC and review the presenters’ slides via the American Cochlear Implant Alliance.

*Current members of the CHHC, as of June 2019:

Gus Bilirakis (R-FL)
Andre Carson (D-IN)
Kevin Cramer (R-ND)
Rosa DeLauro (D-CT)
Eliot Engel (D-NY)
Bob Goodlatte (R-VA)
Peter King (R-NY)
Dave Loebsack (D-IA)
Betty McCollum (D-MN)
Richard Neal (D-MA)
Frank Pallone (D-NJ)
David Roe (R-TN)
Adam Schiff (D-CA)
Adam Smith (D-WA)

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Tuning In Montreal

By Neyeah Watson

Hearing loss is the third most common chronic health problem affecting people in Canada ages 20-79, and affects 10 percent of the population. Like in the U.S., hearing loss is undertreated in Canada. Fewer than 20 percent and one percent wear hearing aids and cochlear implants (CIs), respectively, for their hearing loss.

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A new policy championed by William Steinberg, mayor of Hampstead, Quebec—a suburb of Montreal—aims to make CIs more accessible to Canadians. In January, Quebec Premier François Legault authorized CI surgeries to expand to Montreal. Though CI surgery has been performed in Canada since 1982, Montreal was deprived a center for financial reasons. Following advocacy from Steinberg and others, government officials were able to make budgetary adjustments to allow for funding.

Steinberg, a bilateral CI recipient, has been at the forefront of the Montreal CI campaign. Steinberg was born with a severe to moderate bilateral sensorineural hearing loss, but was not diagnosed until second grade. “I got a hearing aid built into my glasses at that time,” Steinberg explains. “However, in those days they did not have the sophisticated hearing aids that we have today so it was basically an amplifier.”

Steinberg received CIs in 2004, at which time hearing loss in both ears had diminished to profound. Despite his powerful hearing aids, he could no longer carry out a reasonable conversation on the phone. “Today I can talk for hours and miss not much more than someone with normal hearing,” explains Steinberg, who also serves as president of the Cochlear Implant Recipients Association in Canada.

The Mayor’s personal experience with hearing loss inspired his ambition for  greater CI surgery accessibility by making the procedure available in Montreal. In Canada, the CI locations are limited geographically. Cities such as Toronto, Ontario, Ottawa, Ontario, Vancouver, British Columbia, and Saskatchatoon, Saskatchewan currently have centers for CI surgery. However, the cities are geographically scattered, requiring some residents with hearing loss to travel hundreds of miles for surgery. A center in Montreal will expand access and will hopefully encourage other cities to follow suit.

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The new cochlear implant program is expected to be especially helpful to children, who make up about 40 percent of cochlear implant recipients in Canada today. Children who reside in Montreal have to travel for check-ups and configuration, causing great inconvenience to families. Many individuals from Montreal expressed their frustration about the travel and inconvenience online.The approval of the new program in Montreal has lifted a burden.

Hearing loss affects all ages. There is no limit or expiration date on the possibility of restoring access to sound. As Vincent Lin, M.D., of Sunnybrook Health Science Centre in Toronto remarks, "Age is a number, as long as patients are in good health, there's no reason why they can't have this surgery done."

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Ready to Take On the World

By Neyeah Watson

Beginning at age 4, I had ear pain that caused recurrent infections. My mother, worried, took me to multiple ear specialists, the fourth of whom warned these infections could result in a conductive hearing loss. At 7, I underwent a successful corrective ear surgery that eliminated my infections almost entirely. Though my hearing has been salvaged, I still endure frequent sinus infections and ear pain that require monitoring.

My personal experience makes me grateful Hearing Health Foundation (HHF) has long been a vocal advocate for early intervention for babies and children with hearing loss. HHF’s primary focus is on advancing hearing loss research to find new treatments, and I look forward to what will one day be medically possible for my aunt and grandmother who live with bilateral moderate sensorineural hearing loss. 

Because affordable direct patient services are needed to put HHF’s research findings into practice, I’m also greatly appreciative of organizations like The Sound Start Babies Foundation for Deaf and Hard of Hearing Children, a New Jersey nonprofit that exists to support families of babies with hearing loss during the most critical years of brain development. Public funding in the state covers only about one third of the costs needed for early intervention, and The Sound Start Babies Foundation goal is for all families to have access to this quality of care, regardless of their ability to pay.

Fun in speech! One of Sound Start’s little learners is excited to see how many jungle animals she can stack, while working on the concepts "above" and "below." Credit: Kim Reis.

Fun in speech! One of Sound Start’s little learners is excited to see how many jungle animals she can stack, while working on the concepts "above" and "below." Credit: Kim Reis.

The Sound Start Babies Foundation was founded as Lake Drive Foundation in 1997 by community volunteers and parents of children with hearing loss in Mountain Lakes, New Jersey. Inspired by the foundation’s history and mission, I was eager to interview a few representatives from the organization, Jessica Griffin and Kayley Mayer, who make this work possible.

Griffin, who is President, discovered Sound Start Babies™️ when her son, Ian, was born profoundly deaf. Sound Start Babies™️ was Ian’s early intervention provider and greatly helped her family through his hearing loss journey, which included his cochlear implantation at 10 months. In gratitude, Griffin joined the volunteer Board of Trustees in 2014 and was appointed President after two years of service.

Kayley Mayer is a Teacher of the Deaf and Program Coordinator. She began working for the Sound Start Babies™️ program in 2010, the first year the full-day, inclusive nursery program opened up. For her first eight years, she taught in a nursery classroom and provided home-based services for children with hearing loss and their families. Now, she is teaching in the classroom, providing family training to families, and  working on programming development. Although Mayer, unlike Griffin, does not have a personal connection to hearing loss, she finds fulfillment in the progress that families gain in their short time with program.

Griffin attributes members of the Sound Start Babies™️ staff, like Mayer, with her son’s preparedness for mainstream kindergarten this fall at age 6. Her goal as President is to make sure that every child who has a hearing loss has the same wonderful experience as her son. As Mayer notes, each impactful experience is unique. “Every family is at a different point when we meet them, but by the time the child and family graduate from our program, they are truly ready to take on the world,” Mayer says.

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We are all fortunate for resources like Sound Start Babies™️ that help children who need hearing loss intervention succeed developmentally. Hearing is a precious gift, and I learned at age 7 that your hearing can be stripped from you without notice. I am grateful my doctors and parents acted promptly to ensure my hearing was preserved, making sure I, too, could be ready to take on the world.

HHF marketing and communications intern Neyeah Watson studies communications at Brooklyn College. For more information about Sound Start Babies™️ and The Sound Start Babies Foundation for Deaf and Hard of Hearing Children, see www.soundstartbabies.com.

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Veterans Sue Over Defective Hearing Protection

By Joseph Oot

Veterans nationwide are filing lawsuits against the military equipment manufacturer 3M, after a July 2018 verdict concluded the company’s dual-ended Combat Arms Earplugs Version 2 (CAEv2) were defective. The verdict in this whistleblower lawsuit, filed by Moldex-Metric on behalf of the U.S. government, paved the way for service members seeking legal restitution.  

This case began three years ago in May 2016 when Moldex-Metric, a California-based company in the military equipment industry, brought charges against their competitor, 3M. The plaintiff claimed that the original manufacturer of the CAEv2 devices, Aearo Technologies which was purchased by 3M in 2008, colluded to manipulate product tests and falsify data in order to achieve government standards and sales. Moldex-Metric was able to present evidence that both Aearo and 3M continued to sell the defective devices for more than 10 years, even though the devices were found to be too short, a defect that made the equipment difficult to properly insert in the ear. As a result, the devices were loose fitting, prone to fall out, and inadequately provided the level of protection claimed by the manufacturer.

After years of litigation, 3M agreed to settle the allegations in July 2018. 3M was ordered to pay the U.S. government $9.1 million in damages—but none of these damages compensated CAEv2 users, and 3M said this settlement was not an admission of liability. However, the verdict against 3M likely sparked the flood of class-action lawsuits filed since then.

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More than 300 lawsuits have been filed by service members seeking restitution. Retired U.S. Marine Capt. Matt Morrison of New Jersey is one such service member who in February 2019 filed his case against 3M. He says the CAEv2 devices were the direct cause of the complete hearing loss he has sustained in his right ear. While deployed between 2007 and 2013, including two tours of Iraq and one of Afghanistan, he was frequently exposed to loud equipment, machinery, gunfire, and explosions.

Along with thousands of other service members, Morrison says he came to rely on the standard-issue hearing protection as much as a bulletproof vest. "The gear you're issued is everything from a helmet to a flak jacket, eye and ear protection. I never thought that, after the fact, the gear would be faulty or defective and cause this kind of injury," Morrison told a local news reporter.

Like Morrison, active duty military members are exposed to machinery, aircraft, and sudden weaponry blasts leaving their ears susceptible to noises as loud as 184 decibels (dBA). Sounds at or above 110 dBA can cause permanent hearing loss and tinnitus instantaneously without hearing protection. The U.S. Department of Veterans Affairs reports tinnitus and hearing loss are the most common disabilities among veteran service members, with 60 percent of those who served in Iraq and Afghanistan living with one or both of the conditions today.

Both the military and hearing loss communities take seriously all reports of defective hearing protection, especially given the prevalence and permanence of hearing loss and tinnitus among veterans. Without a commitment to strict product performance, user testing, and data verification standards, service members will remain at risk.

Joseph Oot is a writer with ConsumerSafety.org, an organization connecting individuals with information on developing lawsuits, court cases, and recent news affecting consumers. As a consumer advocate, Oot works with both individuals and industry professionals to share helpful information surrounding potentially harmful products.

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Hair Cell Eulogy

By Dawn Doig

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People don’t seem to understand the damage they’ll incur
The way that birds’ songs, music, voices, all become a blur -
When the ears are not protected from loud music, shotgun blasts;
The birdsong they heard yesterday may have been their last...

The problem is maybe ignorance, lack of info about the ear
And how its “innards” function when it’s enabling us to hear.
The inner ear is lined with hair cells that when healthy will respond
To incoming sound energy from the ear canal and beyond.

Some hair cells dance to drum beats, some dance to jingling bells,
But regardless of the dance they do, they know their dances well.
The mighty “Endo” (Endolymph) taught them all from the very start
To learn the dance for hearing’s sake; to learn it all by heart.

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Endolymph is a fluid that courses through the inner ear
And when Endo starts to move too fast, the hair cells cringe with fear -
Fear of death impending if Endo moves too fast
For hair cells fall like blades of grass as Endo rages past.

What causes Endo’s rages? - for a warning’s never there
And the hair cells least expecting are the ones who never fare.
Amidst a dance of merriment, the rage takes them by surprise
And one by one the hair cells die before the others’ eyes.

One day a shotgun blast went off and downed a startled moose
Another day another blast downed an unsuspecting goose.
Both moments enraged Endo, who pounded in his fury
And lunged upon some hair cells who would otherwise be merry.

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The dance to birds’ songs dwindled first as yet another hair cell died;
The remainder knew their fate too well and curled up and cried -
They wept for all their comrades who had lost their lives in vain,
If only muffs or earplugs were worn, they would not have such pain.

They had to strain for spoken words, some still tried to dance,
But numbers now as they were, the hair cells didn’t have a chance.
How hard they tried to make new sounds as loud and clear as before,
But with their numbers now so low, they couldn’t do it anymore.

Farm machinery, music blaring at volumes much too high,
Snowmobiling, off-roading - they all make hair cells die.
Why risk the chance of losing a hair cell dance or two?
Wear ear protection and smother Endo’s rage -

THE DECISION’S UP TO YOU!!

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Dawn Diog is a clinical audiologist. Originally from Victoria, British Columbia, Canada,, she resides in Cameroon, West Africa where she is the English Language Learners (ELL) coordinator for the American School of Yaounde.

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