Hearing Health Fall 2019

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Fall 2019

A Publication of Hearing Health Foundation

hhf.org

The Older Adults & Veterans Issue Coping with hearing conditions due to age or service

Hearing Health Foundation, 363 Seventh Avenue, 10th Floor, New York, NY 10001


6 Ways to Make an Impact Today and Tomorrow You can make a meaningful difference in hearing loss research. Whichever method below you choose, every gift to Hearing Health Foundation (HHF) counts.

The De Francescos named HHF in their estate plans. Check or credit card gifts online or by mail are easy and immediate. For more of an impact, schedule a monthly gift that helps sustain research without interruption.

Life insurance policies you no longer need can have HHF designated as the beneficiary.

Donating appreciated stock can reduce your tax bill. You receive a charitable tax deduction for the full value of the stock, and avoid paying taxes on the stock as it appreciates.

IRA distributions that begin when you turn 70 1/2 can be taxed as income, but if you choose to donate them to HHF, you avoid the penalty.

A charitable bequest in your will can be a more substantial gift if you are unable to donate today.

Retirement-plan benefits left to heirs are more highly taxed than other assets. Make a meaningful gift to HHF instead, leaving lower-taxed assets to loved ones.

Thank you for your support of HHF’s mission. To learn more, visit hhf.org/how-to-help, email development@hhf.org, or call 212.257.6140. This publication is made possible through the generous support of readers like you and our advertisers. Please consider making a donation today at hhf.org/donate.


The mission of Hearing Health Foundation (HHF) is to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health. HHF is the largest nonprofit funder of hearing and balance research in the U.S. and a leader in driving new innovations and treatments for people with hearing loss, tinnitus, and other hearing disorders.

Fall 2019: The Older Adults & Veterans Issue Hearing loss disproportionately affects seniors and those who served. By taking steps to recognize and treat it, you’ll also protect your overall health.

Timothy Higdon, HHF CEO

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HEARING HEALTH The Older Adults & Veterans Issue Fall 2019, Volume 35, Number 4

Publisher Timothy Editor Yishane

Lee

Art Director Robin Senior Editors

Features

Higdon, CEO Kidder

Amy Gross, Lauren McGrath

Medical Director David

08 Living With Hearing Loss How I Learned to Stop Worrying and Love My Hearing Aids. Susannah Bianchi 12 Living With Hearing Loss Have a Hearing Loss, in the Hospital? Kathi Mestayer. A Lesson Learned. Sundaram V. Ramanan, M.D. 17 Managing Hearing Loss The Case for Expanding Hearing Healthcare Coverage. Lauren McGrath 19 Hearing Health Staying Vital. Lauren McGrath 20 Living With Hearing Loss All Day, Every Day. Delane Blondeau. Everything Sounds. Caryl Wiebe. My BAHA Brought Me Back. Diane Mogavero. Inside My Head. Bob Liff 26 Veterans Reviewing Tinnitus Research as an Educator, Veteran, and Patient. Imani Rodriguez. Two Veterans Bridge a Generation. John T. Dillard

28 Managing Hearing Loss Hearing Help for Veterans. 29 Veterans ‘I’m Hearing Better Now Than I Have in 20 Years.’ Jamie Mobley. Defective Earplugs at the Center of Veterans’ Lawsuits. Joseph Oot. My Hearing Loss, Before My Service. Harry V. Cortez 34 Tinnitus Does Tinnitus Differ With Age? Hazel Goedhart and Markku Vesala

36 Advocacy If It Sounds Too Good to Be True, It Probably Is. Charu Chandrasekhar and Owen Donley 38 Media Net Gains. David H. Pierce. Close-Minded Captioning. Amber Gordon 42 Research Presenting the 2019 Emerging Research Grantees. 46 Research Recent Research by Hearing Health Foundation Scientists, Explained.

S. Haynes, M.D.

Staff Writers

Barbara Jenkins, Au.D.; Emily L. Martinson, Au.D., Ph.D.; Kathi Mestayer Advertising

advertising@hhf.org, 212.257.6140 Editorial Committee

Peter G. Barr-Gillespie, Ph.D. Judy R. Dubno, Ph.D. Dennis Giza Anil K. Lalwani, M.D. Rebecca M. Lewis, Au.D., Ph.D., CCC-A Joscelyn R.K. Martin, Au.D. Board of Directors

Chair: Col. John T. Dillard, U.S. Army (Ret.) Sophia Boccard Robert Boucai Judy R. Dubno, Ph.D. Ruth Anne Eatock, Ph.D. Jason Frank Roger M. Harris David S. Haynes, M.D. Elizabeth Keithley, Ph.D. Anil K. Lalwani, M.D. Michael C. Nolan Paul E. Orlin Robert V. Shannon, Ph.D. 363 Seventh Avenue, 10th Floor New York, NY 10001-3904 Phone: 212.257.6140 TTY: 888.435.6104 Email: info@hhf.org Web: hhf.org

Departments

Sponsored

06 HHF News

48 Advertisement Tech Solutions.

50 Meet the Researcher Micheal Dent, Ph.D.

49 Marketplace

Hearing Health Foundation is a tax-exempt, charitable organization and is eligible to receive tax-deductible contributions under the IRS Code 501 (c)(3). Federal Tax ID: 13-1882107 Hearing Health magazine (ISSN: 0888-2517) is published four times annually by Hearing Health Foundation. Copyright 2019, Hearing Health Foundation. All rights reserved. Articles may not be reproduced without written permission from Hearing Health Foundation. USPS/Automatable Poly To learn more or to subscribe or unsubscribe, call 212.257.6140 (TTY: 888.435.6104) or email info@hhf.org.

Cover Susannah Bianchi, New York City. Photo by Tom Grill. Visit hhf.org/subscribe to receive a FREE subscription to this magazine. 4

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Hearing Health Foundation and Hearing Health magazine do not endorse any product or service shown as paid advertisements. While we make every effort to publish accurate information, we are not responsible for the accuracy of information therein. See hhf.org/ad-policy.


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NEWS

HHF

New Leaders at the Helm John Dillard and Timothy Higdon are two U.S. Army veterans who bring, collectively, over four decades of military service to Hearing Health Foundation (HHF) as its Board of Directors chair and CEO, respectively. Here they share the perspectives and experiences gained from their service in the military and what they hope to accomplish in their new roles.

dillard: Between us we have two conditions that are the top health concerns in the military: hearing loss and tinnitus. Service members are exposed to loud sounds, whether sudden high-pitched gunfire or constant motors or machinery, and HHF is strongly committed to helping these folks. But it’s not just veterans and service members with hearing loss and tinnitus who benefit from HHF’s research—what’s remarkable is that there are so many demographics affected, and there’s so much under the umbrella besides hearing loss and tinnitus, such as Usher syndrome,

Ménière’s disease, pediatric hearing loss, hyperacusis, and auditory processing disorder. higdon: Yes, hearing loss and tinnitus affect a broad range of individuals beyond those who served. A broad outlook underlies our grants to researchers, too—one overarching goal of the research is to unravel the basic science at the root of hearing and balance, both of which are incredibly complex systems, and this will help us to better understand specific hearing and balance conditions. dillard: As a tinnitus patient, I have experienced firsthand what it feels like to try to get help for it. After passing a standard brain scan—done to rule out a tumor—I was told I had “gardenvariety tinnitus.” That set me down the path of trying to figure out a cause and treatment. For me, Pawel Jastreboff’s Tinnitus Retraining Therapy has been the most useful, because it revealed to me there is an emotional component of how you react to tinnitus; an attention component of how much you notice it; a memory component of how much you remember its effect; and an auditory component with how much your brain compensates for what you’ve lost. It is helpful to know

A broad outlook underlies our grants to researchers, too—one overarching goal of the research is to unravel the basic science at the root of hearing and balance, both of which are incredibly complex systems, and this will help us to better understand specific hearing and balance conditions. 6

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how all these pieces come together to create a distracting tinnitus. higdon: I was a combat engineer officer and doing a lot of demolition— military exercises with armored vehicles and heavy equipment with units in Germany and then South Korea. The vehicle I used was basically a diesel engine with four wheels attached to it. We were issued earplugs, but we needed to be able to talk on the radio, and frankly back then hearing protection just wasn’t part of the culture. My hearing loss is in the midrange frequencies in both ears. I have been able to manage it, but as I’ve gotten older, I have become more aware of how losing this sense is silent—it’s gradual, and you really don’t notice it until it’s too late. Some of the research I encountered when I first arrived at HHF, such as how untreated hearing loss affects overall health, has been incredible to learn about. I see that with older adults, it can mean you don’t fully understand your doctor and you may relapse because you are not effectively able to hear medical instructions. I think our effort to show the impact hearing conditions have on daily life, and the positive impact that treating hearing loss has, will encourage people to be more cognizant about their own hearing—taking steps to protect their hearing, get it tested, and if needed, treat it. We’re both excited to lead HHF in promoting a message of prevention and education while underwriting research that leads to new discoveries and treatments.

For more about Dillard’s tinnitus research–related work, see page 26. For more about the links between hearing, noise, and hospital settings, see page 12.


hhf news

From left: HHF Board of Directors vice chair Paul Orlin, hockey legend Mark Messier, and HHF CEO Timothy Higdon.

Hockey Legend Mark Messier Fundraises for Hearing Research Hearing Health Foundation (HHF) was thrilled to join this year’s Cantor Fitzgerald Relief Fund Charity Day on Sept. 11, 2019, in New York City. Held on the anniversary of the September 11 attacks, the annual Charity Day event is a fundraiser to turn a tragic day into one that is uplifting and positive. Cantor Fitzgerald and its affiliates GFI Securities and BCG Partners generously donate the day’s brokerage revenues to participating nonprofit organizations, each represented by a celebrity ambassador.

For our seventh year of participation in Cantor’s Charity Day, HHF was fortunate to have National Hockey League Hall of Famer Mark Messier as our ambassador. For our seventh year of participation, HHF was fortunate to have National Hockey League Hall of Famer Mark Messier as our ambassador. Sporting a New York Rangers T-shirt, Messier graciously volunteered his time and met staff and clients at GFI Securities and BCG Partners. “Mark did an exceptional job engaging folks on the trading floor and over the phone. I was impressed by his positive demeanor and compassion, and I am so grateful that he could give up part of his day to make more hearing loss research possible,” says HHF CEO Timothy Higdon.

The Cantor Relief Fund was originally established to aid the families of 658 Cantor Fitzgerald employees who perished in the World Trade Center attacks. The fund has since expanded to support victims of terrorism, natural disasters, and other emergencies, including those wounded during military service. Since 2001, Charity Day has raised $159 million globally. —Lauren McGrath

800 Calls to Say Thank You HHF development associate Gina Russo thanks a donor for helping to fund 21 major research projects this year.

Is it possible to say “thank you” too many times? Given all that donors do for HHF, we don’t think so. Generous individuals are the reason HHF is able to advance better treatments and cures for hearing loss through groundbreaking research. In 2019, donor contributions enabled HHF to fund 21 major research projects. Gratified by the level of commitment from our donors, we could not let the year close without saying “thank you” in a personal way. In September, members of HHF’s Board of Directors, staff, and volunteers dedicated an evening to expressing our most sincere gratitude to our donors by phone. In just two hours, we collectively thanked 800 individuals who recently contributed to the foundation, sharing the donors’ impact this year on hearing research and providing an opportunity to ask any questions about our work. For volunteer Sara Pandolfi, the experience was both impactful and fulfilling. “I was fortunate to speak to several folks who not only appreciated my call, but were also proud to tell me how much HHF’s work and mission means to them,” she says. “It was a very special evening.” —L.M. a publication of hearing health foundation

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How I Learned to Stop Worrying and Love My Hearing Aids I was 59 years old when I abruptly lost 65 percent of my hearing in both ears. Imagine watching television and having the sound suddenly go off. After a year of specialists, invasive tests, and endless rounds of steroids, I finally accepted that I had mysteriously lost much of my hearing. No one could figure out why it happened so suddenly since normally hearing loss is gradual; in my case, it was overnight. Was it the result of an infection or a blast of unexpected noise of some kind? I had no answers, except that my world as I knew it had shrunk to the size of a prison cell. I was ashamed I couldn’t hear, embarrassed to tell people, even friends and loved ones, feeling I was a facsimile of my former self—a woman whom no one, when they did find out, would want at their table. You learn very quickly who your true friends are when you all but lose one of your senses. Four painful years later, I can count them on one hand; the rest have abandoned me over something I had no control over. A woman I knew approached me one day to ask what was wrong. She had been behind me, apparently calling my name for some time without me answering.

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“I didn’t hear you, I’m sorry,” I said, the shame rising within me. Then holding back tears, I admitted, “I can’t hear, especially at a distance.” She smiled, before taking out a hearing aid from each ear and dangling them, like earrings. I was shocked, never knowing she had a hearing loss in all the years we’d been neighbors. “How come you never told me?” I asked her. “It never came up,” she replied cheerfully. “You can hear with these. I think it’s time you met Janet.” Janet, the Einstein of Ears, as I’ve come to call her, is a mighty force. My audiologist pulled me up by my Bottega Veneta bootstraps and said, “Shame? What do you mean you’re ashamed? Hearing loss happens. Some people have cancer, some diabetes. Are they ashamed? I’d say not. So there’s nothing shameful about hearing loss. So we will deal with it, you and me.” And we did. But not before I ran out of her office in a narcissistic panic. Hearing aids, at my age? My grandmother had had them, but she’d been 85. As a model for most of my life with an ego the size of Montana, I refused to consider them. I clearly wasn’t ready and had to suffer just a little while longer.

photo credit (left): tom grill

By Susannah Bianchi


living with hearing loss

And suffer I did, pretending to hear, nodding a lot, making a fool of myself if asked a question. “Where do you get your hair done, Susannah? It’s such a cute pixie cut!” “At Whole Foods. They have the best cuts, at the best prices.” When I finally got up the nerve to ask people to please speak up, to look at me when they spoke, or repeat themselves, the rudeness I endured became legendary. Even doctors you’d expect compassion from treated me with indifference and disrespect. One, famous in his field, said I should get a hold of myself, that I was too emotional about the whole thing and needed to grow up. Grow up? Too emotional? Let him lose a sense he took for granted his whole life, then tell me how he feels. Everything’s muffled, distant. Who wouldn’t become emotional if their ability to communicate had been dramatically altered? Do people think hearing loss is contagious? Are they worried about associating with those who have it and doubling their chances of getting it? Some people would actually walk away as if I had just hit them up for spare change. Did she just say, “Let’s go, here she comes”? Did he honestly think calling me Helen Keller behind my back was really that funny? I took it in stride over and over again, hiding tears, feigning ignorance, until the day came when a bus driver screamed: “Lady, are you deaf?” “Yes,” I said quietly. “I’m afraid I am.” It was then I went back to Janet, who was expecting me. Apparently, my behavior wasn’t unusual. The average time it takes from diagnosis to accepting treatment is seven years. “It’s all a process,” she said. “Everyone goes through it.” That’s when “Max and Min,” my trusty new hearing aids, came into my life. I thought I’d have to let my hair grow. It turns out you can barely see them at all. My father, who was a U.K. Royal Air Force pilot during World War II, lost his hearing in one ear and had a hearing aid attached to his glasses. It was big and bulky. Sometimes you’d look at him and his glasses were at an angle, the weight of it pulling them down and making him look like a mad professor. My mother would say, “Frank, you’re lopsided again.”

I ran out of the audiologist’s office in a narcissistic panic. Hearing aids, at my age? My grandmother had had them, but she’d been 85. As a model for most of my life with an ego the size of Montana, I refused to consider them. I clearly wasn’t ready and had to suffer just a little while longer.

Shown with his wife and his mother, Susannah Bianchi’s father was a World War II pilot and lost hearing in one ear.

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Isolation is common when you can’t comfortably communicate. You retreat into yourself where it’s safe in the silence. You get gun-shy going out into the world, worried your dark secret will come out, as if you’ve committed a crime. None of it is true, of course. I read that Winston Churchill also had hearing aids that he was very self-conscious about, pulling them out during cabinet meetings even though it meant he could hear almost nothing. Musicians Pete Townshend and Eric Clapton suffer from hearing loss from their years of playing loud rock music. The artist David Hockney also has it. Steve Martin, that wild and crazy guy, wears hearing aids, as does former President Bill Clinton. None of these men has allowed living with hearing loss to damage the rest of their lives. They are beacons, reminding us how blessed we are to have such incredible technology. For over two years I couldn’t make a simple phone call because everyone sounded as if they were under water. I’d lie and say things like, “I have very bad reception.” “I must get a new phone.” “Would you mind emailing me instead?” Now with Max and Min, streamed through my iPhone, I can hear everything. I can also watch TV again and listen to music, even talk in a restaurant without it sounding like I’m dining in a beehive. To think my vanity almost prevented me from getting help. As for Janet, her office for me is like Lourdes on the Upper East Side. A good audiologist like Janet works with you to get the most out of the hearing aid that’s right for you. Mine are by Oticon and seem to have been made for me, but there are so many choices. “Everyone’s hearing issues differ,” I remember Janet saying. “So what’s best for you may not be what’s best for another.” I recall being afraid I’d break them. “They’re sturdier than they look,” she told me, and it’s true. They’re also smart, letting you know when your battery is about to go, and easily programmed to suit your needs. With Janet’s help I became skilled at using my hearing aids. I felt like an engineer at NASA. After wearing them for less than two weeks, I hardly knew they were in. My biggest concern being that I’d forget to take them out before taking a shower.

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Janet coaxed me from my cocoon. Isolation is common when you can’t comfortably communicate. You retreat into yourself where it’s safe in the silence. You get gun-shy going out into the world, worried your dark secret will come out, as if you’ve committed a crime. None of it is true, of course. Your thinking becomes distorted, but trust me when I say that having a hearing loss does not diminish who you are or who you’ve always been. It’s merely a new mountain to climb, your own personal Everest that you scale by taking a first step, like having a hearing test or talking to your ENT to decide if you’d benefit from a hearing aid. It could simply be lots of wax in your ears (an easy fix) or just the awareness that your hearing, as you age, needs a little attention. I have a new friend; I’ll call her Mary. Mary has a severe hearing loss and has finally admitted that she has a problem. I knew right away the secret she was hiding, recognizing her deer-in-the-headlights expression that I knew only too well. After sharing with her all I’ve learned and giving her Janet’s name and number, she disappeared. She is still coming to terms. It’s all a process, like Janet said, and everyone goes through it. I’m here to say there’s light—and sound—at the end of that silent tunnel.

Susannah Bianchi is a writer who lives in New York City. Special thanks to Jeff Wax at New York City’s Center for Hearing and Communication, at chchearing.org.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

Support our research: hhf.org/donate


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Kathi Mestayer shown before being wheeled into surgery, holding her own personal amplifier. She says, “When I asked the staff, at the pre-surgery check-in, if they had any assistive listening devices, and told them I was hard of hearing, the nurse said, “Ma’am, I have no idea what you’re talking about.”

Have a Hearing Loss, in the Hospital? Older adults are more likely to have hearing loss and to spend time in healthcare settings. Taken together, these factors can present serious challenges. By Kathi Mestayer What happens to people in healthcare settings really matters. A mistake, even a small one, can have big consequences. That’s hard to argue with. Whether you’re in a hospital, rehabilitation center, or nursing facility, if you’re the patient, you have a strong interest in getting the best outcome. And so do healthcare professionals. But communication breakdowns can affect results. Can you hear the voice on the intercom speaker? Can you understand directions over the thrum of hospital devices? Can you always hear a “do not” in a long sentence of medical instructions? Then there’s the baseline stress of being the patient. Exhaustion, illness, and medications can make speech harder to understand, even in an ideal, quiet setting with one person facing you and talking clearly.

An Aging Population

As we age, we are more likely to have trouble hearing. Two-thirds of people ages 70 and older have bilateral hearing loss, and almost three-quarters have hearing loss in at least one ear, according to a 2016 American Journal of Public Health report. Age also brings a greater likelihood of spending time in the hospital. People older than 65 comprise over 40 percent of the total days of care in a hospital, according to the Centers for Disease Control and Prevention. So hospitals are full of older patients who are often hard of hearing, and data suggests that this affects healthcare outcomes. A study of patients in the Medicare system, published in the Journal of the American Geriatrics Society in 2018, compared readmission rates of patients who self-reported hearing loss with those who did not. 12

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A Journal of the American Geriatrics Society study found patients with hearing loss “had, on average, 32 percent greater odds of hospital readmission” within 30 days of discharge. Results were adjusted for age, so the higher rate was specifically associated with hearing loss. The patients with hearing loss “had, on average, 32 percent greater odds of hospital readmission” within 30 days of discharge. Results were adjusted for age, so the higher rate was specifically associated with hearing loss.

Not Hearing, and Not Saying So

We know that having a hearing loss requires practicing a lot of self-advocacy. But this can be hard to do in a hospital setting. When you’re ill, tired, and anxious, do you really want to risk creating tension with the doctor by asking them to repeat what they just said, or to take off their surgical mask? Do you even have the energy? A small study suggests the answer is no. Researchers

interviewed eight patients who self-reported hearing loss, ages 70 to 95. “A surprising finding was that they did not expect the health system to change, but rather seemed a passive participant during the hospital stay,” says study coauthor Amy Funk, Ph.D., of Illinois Wesleyan University’s School of Nursing. “In many cases, patients did not mention to staff that they had a hearing deficit.” As a result of the report in the American Journal of Nursing, Funk’s team devised key communication strategies for use by healthcare professionals. These include advising staff to proactively ask the patient whether they have a hearing issue, and to reassure them that asking questions is not only expected, but welcome.

Technology Not Quite to the Rescue I was sitting in a new doctor’s office as the nurse went through my computer records. “So, I see here that you’ve had a mastectomy?” “Ummm, no,” I muttered, glancing down the front of my shirt. “I’ve had a mastoidectomy— a section of my middle ear removed.” Oops—just one little syllable, part of my online records from a different healthcare system. But it didn’t end there. My file showed I was allergic to dilantin. I’m allergic to dilaudid. They are very different medications, used for very different reasons. If I had a seizure, and needed dilantin, I wouldn’t have gotten it. But if I was in pain, dilaudid was an option… along with the allergic reaction. I asked the nurse to correct my file on both counts, and she said she would. Several months later, I asked another nurse to check my file, and, sure enough, the misinformation was still there. The second nurse told me she was not authorized to make changes in a patient file, and that only my doctor could correct it. This is all pretty sobering stuff, especially when you realize that these records can be widely shared among healthcare professionals. File sharing is in the interest of patient health, so critical information is available to those who need it, when they need it. But there’s obviously a

living with hearing loss

downside, if the shared info is wrong. Part of the problem is how the files are created. According to M.K. Wolfe, a former medical transcriptionist, the process starts with a staff person, often a doctor, dictating the information into a computer equipped with voice recognition (VR) software. Then the software converts the speech into text, after which the transcriptionist must speedily proof and usually extensively edit the machine transcription. “Lives literally depend on accurate records,” she says. Below are a few examples, from Wolfe’s work, of actual transcription mistakes made by VR software: » “revealed sheets of plasma cells” = “a 3-year-old sheikh of plasma cells” » “the wound was dressed with antibiotic ointment” = “the wound was dressed with antibiotic vomit” » “with hep C” = “with Pepsi” Not unlike the VR software used in real-time television captioning, VR software used in healthcare should continue to improve, in part because users can train the software to recognize their voice for better accuracy. But it’s important to remember the key role of humans for finding and correcting mistakes, especially in healthcare. It’s always good to have another set of “ayes”! —K.M. a publication of hearing health foundation

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A Lesson Learned By Sundaram V. Ramanan, M.D. One bright spring morning, I was greeted by the head nurse who said, “You have a new patient, Doctor. She is completely deaf but she lip-reads perfectly. You should have no difficulty with her.” Entering the patient’s room, I met a smartly dressed woman who gave me a warm smile. I proceeded with my evaluation asking her about her symptoms. She responded with some hesitation and appeared uncomfortable. “I am sorry to ask you this, Doctor, but would you mind having a nurse repeat your questions?” “Why?” I asked. “Do I not speak clearly?” “No,” she said, “you speak very clearly and your English is excellent. It is just that I cannot follow your accent.” “I am not sure I understand,” I replied. “Why does my accent trouble you?” “You see, Doctor,” she said, “I read lips, as you know, and that is how I am able to understand what the speaker is saying. The way you move your lips is different from the average American, and that is why I have difficulty understanding you. I am embarrassed to even mention this but I do want to give you all the information you need and I do want you to understand me.” A nurse was called in, and she repeated every syllable I uttered. From then on, everything was smooth sailing, and we three conducted an excellent conversation. As I was leaving her room, she once again turned on her charming smile and said, “Thank you, Doctor. Again, I am really sorry if I embarrassed you or made you uncomfortable.” “Not at all,” I replied. “I have, today, learned a very important lesson.”

Sundaram V. Ramanan, M.D., is a professor of medicine at the University of Connecticut School of Medicine.

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Noisy Hospitals

Every hospital patient needs peace and quiet to rest, heal, and communicate. Any noise can make speech harder to comprehend—heating and air conditioning systems, other voices, medical alerts, or that device under the mattress that keeps inflating and deflating 24 hours a day, making sleep impossible. A 2018 editorial in the journal BMJ says noisy hospitals have been linked to the development of high blood pressure and increased pain sensitivity, not to mention stress and poor mental health. In fact, you don’t have to be awake to be disturbed by noise. A 2012 Annals of Internal Medicine study of sleep disruption in the hospital exposed 12 sleeping patients to a number of sounds, such as alarms, phones, ice machines, outside traffic, and helicopters, at a range of volumes. Measurements of brain activity and heart rates indicated disruption at various stages of sleep. Noise matters, even if it doesn’t wake you up. To better understand noise and its effects, scientists are collecting sound-level data from hospital and other healthcare facilities. Erica Ryherd, Ph.D., an associate professor of architectural engineering at the University of Nebraska–Lincoln, researches hospital acoustics, noise, and occupant response and is a member of the Acoustical Society of America’s noise and architectural acoustics technical committees. In 2016, her team measured sound levels and frequencies in a sample of hospital wards: 24-hour measurements were taken in 15 rooms and at five nurses’ stations across five wards in a Midwest hospital. The sound data was then compared with patient ratings of “quietness” in the same wards, also from 2016, with a sample size of almost 2,000. The patient ratings came from a Medicare program called HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems), which requires hospitals to survey and report data from patients on a variety of topics after discharge. A comparison of their sound data to the HCAHPS patient data showed, not surprisingly, that both agreed on the two loudest wards. For speech intelligibility in the five wards, three were ranked “marginal” and two were “poor”; none reached the “good” level. And the baseline background noise levels—measured in unoccupied rooms—were louder than levels recommended by the World Health Organization and other health and safety institutions. To improve hospital soundscapes, Ryherd says acoustics need to be considered earlier, during building design (or renovation). This can include the size, dimension, and acoustical needs—such as patient speech privacy—of different spaces. Existing hospitals can install sound-absorbing materials such as ceiling


living with hearing loss

tiles and use sound masking to dampen jarring sudden noises. Staff can limit conversations and cell phone use in hallways and paging over loudspeakers, and work to reduce noise from trolleys, televisions, and phones. There are also many research efforts examining how to reduce the volume and frequency of alarm sounds in hospitals, which affect staff as well. The use of sound patterns and haptic (touch) stimuli are among the possible solutions.

Be Aware

Medicare collects and shares a wealth of data about hospitals and communication, including the HCAHPS survey data used by Ryherd. This includes patient ratings of staff listening skills and their ability to explain things clearly. The Medicare website has a Hospital Compare tool at medicare.gov/ hospitalcompare. You can search for a hospital and view its scores for each question in the HCAHPS survey. For my local hospital, I was able to see the percentage of patients who said their nurses or doctors “always” communicate well, or that their room was “always” quiet at night, and compare this with state and national averages. The information can help you better prepare for a hospital visit and choose a hospital, if you have that option. Medicare also takes action based on the collected data. For example, its Readmission Reduction Program decreases the Medicare reimbursement rates for hospitals with high readmissions (while taking into account hospitals’ demographics and special patient groups). The U.S. Department of Justice (DoJ) plays an active role in patients’ rights as well. Its Barrier-Free Health Care Initiative, announced in 2012, has investigated hospitals and other healthcare institutions. Most cases involve the failure to provide American Sign Language interpreters for patients who are deaf, which is a clear violation of the Americans With Disabilities Act. The DoJ’s cases against healthcare institutions to rectify access for the deaf not only grab headlines—and drive solutions— they also stipulate changes that benefit those with hearing loss. For instance, the settlement agreements

used to resolve cases include requiring access to assistive listening devices, captioning, telephone amplifiers, and hearing aid–compatible telephones; and requiring that each patient’s needs for effective communication are detailed at the time of admission. Hospitals understand the consequences of not meeting these requirements, which can include reopening the investigation.

Making Progress

For the many professionals involved in providing healthcare, training in communication is a big, and often unmet, need. A 2016 Journal of Pain and Symptom Management study of over 500 palliative care and hospice doctors and nurses reports: “Although 61 percent felt comfortable with their communication skills for patients with hearing loss, only 21 percent reported having received formal training in its management, 31 percent were unfamiliar with resources for patients with hearing loss, and 38 percent had never heard of a pocket talker amplification device.” At a pre-surgery appointment a couple of years ago, I asked the nurse if the hospital had any assistive listening devices. She responded, “Ma’am, I have no idea what you’re talking about.” So I bought a basic handheld amplifier and brought it with me to the surgery. Similarly, my father’s cochlear implant battery was tossed in the trash with his hospital lunch tray. And the director of nursing of a local hospital system told me that they don’t encourage patients to bring their hearing aids; if the devices get lost, the hospital has to replace them. But—then how can we hear? This spurred me to get involved personally. I have been conducting sessions for nurses about how to help patients with hearing loss, at the request of the nurse who manages the training program at a local university. We discuss hearing basics, such as the effects of noise and the benefits of speech-reading (lip-reading), along with low-tech solutions, such as writing things down. When we try an easy-to-use, relatively inexpensive handheld amplifier, the nurses are amazed at the volume and clarity. So, how to hear better in hospitals? Tell hospital staff that you are hard of hearing; if you have a choice in hospitals, use

Noisy hospitals have been linked to the development of high blood pressure and increased pain sensitivity, not to mention stress and poor mental health.

A public service poster that reinforces the importance of quiet environments to help patients recover.

a publication of hearing health foundation

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the Medicare website to pick a quieter one; minimize unnecessary noise in the room from alerts or machines; make sure the speaker has the listener’s attention and shows their face when speaking; use written instructions; and when needed use a portable amplifier. Also, wear your hearing aids and store them in a clearly marked container! The good news is that an increasingly large and diverse network of individuals and organizations are working to improve the system, spanning the fields of gerontology, otolaryngology, audiology, nursing, acoustics, architecture, and hospital management. They are collecting, interpreting, and sharing data; creating and enforcing standards; designing and building better facilities; training healthcare providers; and advocating for patients. The collective focus is to improve communication and, as a result, healthcare outcomes for the large, and growing, number of older adults with hearing loss.

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. For references, see hhf.org/fall2019-references.

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managing hearing loss

The Case for Expanding Hearing Healthcare Coverage The high cost of hearing loss treatment is creating a public health crisis for our aging population. How can we make hearing aids accessible for seniors? By Lauren McGrath At least one third of Americans ages 65 and older, or more than 17 million people, live with hearing loss. Over a 10-year period, individuals with untreated hearing loss will incur health care costs exceeding that of the general population by $22,433 per person, according to January 2019 research published in JAMA Otolaryngology–Head & Neck Surgery. Their inpatient hospital stays will be 1.47 times greater over the same period, and they will average 52.2 more outpatient visits to doctors. Most individuals with untreated hearing loss would make a change—that is, purchase hearing aids—and mitigate additional health care expenses if it were financially possible. A 2017 Hearing Health Foundation (HHF) and Hearing Loss Association of America (HLAA) survey found that hearing aid cost was the biggest barrier to adoption, exceeding the second most common reason (not sure where to get hearing tested) by 575 percent. With private insurance or Medicare coverage rarely covering hearing aids, the average cost for one pair of hearing aids is nearly $2,700. Left untreated, hearing loss can result in cognitive decline and dementia, falls, and depression. Falls are 2.4 times more likely to occur with an unaddressed hearing deficit, and dementia may be as high as 1.8 times more likely. Other conditions linked to untreated hearing loss include high blood pressure, high cholesterol, rheumatoid arthritis, heart disease, diabetes, and kidney disease. Hearing aids not only improve lives, but save them. Research in the Journals of Gerontology and JAMA Otolaryngology–Head & Neck Surgery shows untreated hearing loss among older adults is associated with a 20 to 50 percent higher risk of death from any cause. Policy changes are urgently needed to sustain the health and wellbeing of our seniors. This May, HHF and 11 other Friends of the Congressional Hearing Health Caucus (FCHHC) member organizations addressed this issue in Washington, D.C. 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

Left untreated, hearing loss can result in cognitive decline and dementia, falls, and depression. Other conditions linked to untreated hearing loss include high blood pressure, high cholesterol, rheumatoid arthritis, heart disease, diabetes, and kidney disease.

Medical Utilization Associated With Untreated Hearing Loss* Medical Costs: Inpatient Stays: Outpatient Visits:

2 Years $3,851 1.2x +7.5 visits

5 Years $11,147 1.3x +21.5 visits

10 Years $22,433 1.47x +52.2 visits

*Compared with those with typical hearing, from a 2019 study in JAMA Otolaryngology–Head & Neck Surgery a publication of hearing health foundation

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hearing health foundati o n

hearing loss treatment. The CHHC, a U.S. House of Representatives caucus cochaired by Reps. David McKinley (R-WV) and Mike Thompson (D-CA), aims to raise awareness of issues that affect Americans with hearing loss. Significantly, the group 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, and this year’s meeting, “Understanding the Cost of Not Treating Hearing Loss in Adults,” featured Richard K. Gurgel, M.D., a clinician and associate professor of otolaryngology at the University of Utah School of Medicine, and Ian Windmill, Ph.D., the clinical director of the division of audiology at Cincinnati Children’s Hospital Medical Center. Gurgel and Windmill spoke in their respective presentations about the prevalence of hearing loss among older adults and its medical and economic impacts, noting that by 2060, this most common sensory deficit among seniors will affect more than 73 million adults—with the majority unable to pay for treatment. Expanding Medicare to include hearing care has been shown to be economically sensible. Both Gurgel and Windmill cited the implications in the paper “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 details the average annual spending of Medicare beneficiaries who use hearing healthcare services to be $8,196, and for those who do not use hearing care services to be $10,709, resulting in an annual difference of just over $2,500 per recipient. This difference amounts to an 18

hearing health

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annual cost savings of more than $7 billion to Medicare annually, and this net benefit will only trend upward. By 2050, the number of people enrolled in Medicare is expected to grow to 92.4 million individuals from 60 million currently. Lawmakers have begun to respond to these concerns. Three relevant bills would make this possible: » Medical Hearing Aid Coverage Act of 2019 (H.R. 1518): To expand Medicare coverage to include hearing aids and related examinations. » Medicare Dental, Vision, and Hearing Benefit Act of 2019 (S. 1423/H.R. 1393): To amend title XVIII of the Social Security Act to provide for coverage of dental, vision, and hearing care under the Medicare program. » Seniors Have Eyes, Ears, and Teeth Act (H.R. 576): To expand Medicare coverage to include eyeglasses, hearing aids, and dental care. Medicare coverage of hearing healthcare services, including tests, devices, and follow-up appointments, would immensely benefit older Americans with hearing loss and the health care system at large. HHF is grateful to advocates who are advancing this positive change.

HHF’s director of marketing and communications Lauren McGrath attended the May 2019 FCHHC briefing with HHF CEO Timothy Higdon. For more about the FCHHC including full presentations, see acialliance.org/page/FCHHC. For references, see hhf.org/fall2019-references.

Hearing aids not only improve lives, but save them. Untreated hearing loss in older adults is associated with a 20 to 50 percent higher risk of death from any cause. Members of the CHHC 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)

Share your story: Tell us your hearing loss journey at editor@hhf.org.

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hearing health

Staying Vital How can we make hearing tests as routine as checking your vision, teeth, or blood pressure? In part by emphasizing how hearing ability is tied to overall health. 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. 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. I appreciated that these non-intrusive tests provided reassurance my hearing falls within the typical range. “Hearing tests are quick, easy, and painless, Dad,” I persist, but so far he still hasn’t gotten his hearing tested, despite being generally proactive in other areas of his health. A growing body of research is showing that ignoring a hearing loss can result in additional serious medical issues affecting the whole body, including cognitive decline, falls, social isolation, and depression. With my ongoing support (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 hearing healthcare is still underappreciated, I’m grateful for the “Hear Well. Stay Vital.” campaign. Launched in early 2019 by Hearing Industries Association (HIA), a national trade association for hearing device manufacturers, this awareness campaign has as its objective to encourage more people—such as baby boomers like my dad—to check their hearing annually and take appropriate action using the results. HIA was largely inspired by a 2016 report by the The National Academy of Sciences, Engineering, and Medicine on “Hearing Health Care for Adults: Priorities for Improving Access and Affordability.” One recommendation of this report (which HHF Board of Directors member Judy Dubno, Ph.D., contributed to) 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 HIA president Kate Carr. 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. 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.

Lauren McGrath and her dad at a music festival in Athens, Georgia, in 2017. Infographics (below) help raise awareness of hearing loss and the importance of getting hearing tested.

Lauren McGrath is HHF’s director of marketing and communications. For more on the “Hear Well. Stay Vital.” awareness campaign with information about hearing wellness and free shareable resources, see hearwellstayvital.org. a publication of hearing health foundation

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living with hearing loss

hearing health foundati o n

Older Adults Living WITH

HEARING LOSS

All Day, Every Day Twenty years on, a nonagenarian is still in love— with her hearing aids. By Delane Blondeau

Delane Blondeau at her recent 90th birthday party. “My hair is partly over my hearing aids, so I am getting ready to tell my friend the reason for the mic,” Blondeau says. “My friend is 89 and the community threw us a shared birthday party. At our age, you do not know who will be here tomorrow!”

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My first awareness of my hearing ability occurred in college. We were in an auditorium for a lecture on hearing and the lecturers said they’d give us a hearing test. They asked us to shut our eyes and hold up a finger if we heard a sound, even faint. My finger was the last one up— and so I was awarded a dog whistle! Later, as my mother grew old, she developed a terrible hearing loss. It was before current technology, and I watched her fade out of the world. I recall she told us she could see a bird outside the window singing, but she could hear nothing. She could not hear us even though we shouted. She could not hear the TV well enough to understand the news, or her friends when she ran into them at the post office. She stopped going to church. Her world shrank and we could do nothing about it. With no communication, she became invisible. More time passed, and as I aged I began to pepper my husband with “what?” over and over again. I noticed that while I could hear a person sitting across from me, I could not hear other people at the table well enough to stay in the conversation. In my writing group I kept asking the person reading to please read louder. Okay, I was not going to become like my mother. I made an appointment to see an ear, nose, and throat doctor. I was tested, and yes, I had a hearing loss, but something could be done about it: hearing aids. I was referred to a hearing aid clinic close to where I live. Jorge was kind, an expert at his job, and patient (I still see him 20 years later). After he tested my hearing, he gave me a choice of devices. “Those klutzy things? I don’t want those,” I said. He gently explained it was these aids or not hearing. My loss was not the mild kind. “You have 60 days to try them. Try them and see what you think.” I tried them out and chose the best brand on the market. Expensive? Yes! But as I joked, “I am no longer buying furs and diamonds. I will put my money here.” Jorge emphasized that I wear the aids every day. Maybe three short times a day at first and then all day, every day. I gritted my teeth and did it.


living with hearing loss

If your doctor is looking at the computer instead of you, say, “Pardon me, I wear hearing aids. I need you to look at me when talking.” It’s okay. She does not wear aids, does not realize you do, and you have not been impolite— you’re just stating the situation. What was that loud motor in the house? The refrigerator. I had never noticed it. When I chewed at dinner, it was like a beaver in my head gnawing down trees. A water faucet turned on was like Niagara Falls. When I walked into a restaurant, I heard fans and crashing dishes. To a teacher friend, I described the sounds in any place with a lot of people “like a 2nd grade class on a rainy day when you have to stay inside at recess.” But I dutifully wore the aids all day, every day. And sure enough, within the 60-day testing period, I adjusted. No one told me, but I realized it is not just your ears that adjust, but your brain. My brain began to filter background sounds to a tolerable level, the way the brain and typical ears are supposed to do. I learned to pay attention to the speaker—you read lips and faces with typical hearing, too. I can adjust the hearing aids to accommodate the higher or lower voice of the speaker. I also realized: You are responsible for your handicap, not others. Sit near the speaker, sit up at the front of a room, not at the back (unless weird acoustics make it easier to hear in the back). On a tour, walk right on the heels of the guide and go around to see his face when he speaks. If your doctor is looking at the computer instead of you, say, “Pardon me, I wear hearing aids. I need you to look at me when talking.” It’s okay. She does not wear aids, does not realize you do, and you have not been impolite—you’re just stating the situation. And finally, if you haven’t dealt with your hearing loss—we all know when you cannot hear. Not wearing hearing aids does not hide it from us. We are all sending you these thoughts: “Get hearing aids so you are not such a problem for us. Please cope with your problem so I don’t have to. They are not so ugly. They tell me you have overcome your vanity and are handling your problem. I like how they look on you!” When my favorite brand updated their aids, I got them. Birdsong is sharper, and I can even understand those low-voiced readers in my writing group. Life is brighter. I love you, new hearing aids! And the old ones, too, my first pair, the ones that brought me back into life.

Delane Blondeau lives in Arizona.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

Support our research: hhf.org/donate

a publication of hearing health foundation

fall 2019

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living with hearing loss

hearing health foundati o n

Older Adults Living WITH

HEARING LOSS

Caryl Wiebe with her husband John and their children Dorene, Jon, and Colene.

Everything Sounds Sometime during grade school, my parents noticed I favored my right ear because I turned it toward people during conversations. They took me to an ear, nose, and throat doctor who put drops in my ears to help the eustachian tubes, the passageways that connect the throat to the middle ear. This provided very little improvement, but I didn’t worry. I felt I could hear the important things in my world and maintain my ability to sing a cappella with my sisters in grade school, and then later in choirs in high school and college. At 18, I got married and had three children in the eight years that followed. Over time I noticed my hearing was considerably declining in my left ear, even though we were able to tour as a singing family for eight years to churches in Oklahoma and California, and even sang on the radio. I was always able to hear my family, but my husband and I noticed that it was hard for me to keep up when we were in church or in a group. I went to see a well-respected ear surgeon, Gunner Proud, M.D., at the University of Kansas Medical Center. He determined that my stapes had a calcium overgrowth that prevented its movement (otosclerosis). I underwent a stapedectomy, a middle ear procedure to restore hearing with the insertion of a prosthetic device. Afterward I was dizzy, but within three or four days it was deemed a success and I was pleased by what I was able to hear again. “I can hear the tires,” I announced to my husband. He was amused—he didn’t know what it was like to live without

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By Caryl Wiebe life’s most ordinary sounds. Eventually my hearing began to deteriorate in my left ear again. Dr. Proud explained that calcium had started to grow around the plastic prosthetic “hammer” that he had inserted into my left ear. Instead of surgery, he suggested a hearing aid for my right ear. I was hesitant, but I was now 30 and eagerly wanted to hear. I purchased the first of what would be many hearing aids. I’ll never forget the first time I had my hearing aid on while giving my children a bath in our cramped little bathroom. I thought the loud noise from their splashing and kicking and laughing would drive me crazy with my aid in my ear. But I decided that if I removed it, I’d fall into the habit of removing my hearing aid in every noisy situation. That bath was over 52 years ago, and to this day, I maintain the importance of keeping it on, especially when giving advice to older folks. Many complain that “everything sounds different with a hearing aid,” which is true—but at least you can hear! I get along very well with my hearing aid, and at the age of 82, I don’t want to try anything different.

Caryl Wiebe lives in Kansas.


living with hearing loss

My BAHA Brought Me Back By Diane Mogavero After decades with typical hearing, in my 30s I started to gradually lose my hearing. The first procedure that was used, stapedectomy, was done in both ears. The stapes bone was removed and the wire was inserted to vibrate the sound. The surgery worked for years—until a car accident knocked the wire off. Five surgeries to replace the wire were unsuccessful because the bones were deteriorating, and I lost hearing in my right ear. My ability to hear in my left ear remained, because surgery hadn’t been done in that ear since the accident. So I went out and bought a high-powered hearing aid. Years later, another event—my daughter’s wedding—prompted a return to the doctor. I had such a hard time conversing with guests at the wedding. My doctor did a hearing test on my left ear and said, “I have good news and bad news. The bad news is your hearing is going. The good news is we can send you to see a specialist, who can tell you if you are a candidate for an implant.” The specialist said he could help me, and explained an implant called a bone-anchored hearing aid, or BAHA. The device is implanted behind the nonfunctioning ear. The system utilizes direct bone conduction, allowing the skull to transfer sound directly to a functioning cochlea and bypassing any problems in the middle ear. The specialist told me that after three or so months of healing, the implant is secure and the small bone conductor, or hearing device, is snapped in place behind the ear. He then tested the BAHA for me so I could experience the benefit of the implant before the actual surgery. He held it against my skull and spoke into it: “This is how you will hear when it is implanted.” I decided to have the surgery. Finally, after healing, the day came when the sound processor was snapped into place. I started to cry tears of joy. I could hear the voice of my doctor so clearly. Technology gave me a second chance to hear the sounds everyone takes for granted. I can sit with my family at the table and join the conversation. I can hear the birds chirp as they fly up to all the birdhouses I’ve been collecting all these years. While walking my dogs I heard the tags on their collars clanging for the first time. Bone-anchored hearing aids are not as well known as hearing aids or cochlear implants, but if you have single-sided deafness (deafness in one ear) or conductive hearing loss (stemming from a problem with the middle ear), ask your doctor about this life-changing device.

Diane Mogavero lives in New York.

A bone-anchored hearing aid (BAHA) utilizes direct bone conduction, allowing the skull to transfer sound directly to a functioning cochlea and bypassing any problems in the middle ear.

Diane Mogavero with her husband.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

Support our research: hhf.org/donate

a publication of hearing health foundation

fall 2019

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living with hearing loss

hearing health foundati o n

Older Adults Living WITH

HEARING LOSS

Inside My Head By Bob Liff

Bob Liff with his cochlear implant, which is paired with a hearing aid in his opposite ear.

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I am certainly not the only person whose realization that I suffered from an increasingly severe hearing loss came upon me gradually. My difficulty became noticeable when I was working as a newspaper reporter in the late 1990s. I could manage okay on the phone but had trouble following conversations in person if there was any ambient noise. Crowd situations were unbearable. I also suffered from periodic tinnitus, which of course is utterly frustrating, but still did not attach it to having a chronic hearing loss. I withdrew from social situations. I started making jokes: My wife says it’s not that I can’t hear, but that I won’t listen. Because my hearing loss is asymmetrical—much worse in my right ear than my left—I was losing my echolocation. I could not tell where a sound was coming from, and would spin around to find the source. Eventually, reality kicked in. I went for a hearing test about 12 years ago and was shocked at the degree of the loss in my right ear—more than 50 percent in the midrange frequencies, less so in other ranges—and a slight loss in the left. My ENT and audiologist suspected Ménière’s disease, but could not come to a conclusion, which illustrated for me how much research still needs to be done to fully understand hearing and balance issues. I was fitted with a hearing aid for my right ear. Because of the nature of my hearing loss, I could not use an in-ear aid and had to use one that went over my right ear with an external microphone. Both ears continued to deteriorate, the right more than the left. I could hear sounds in my right ear, but could not make out words. As it was explained to me, my auditory nerve was working normally, but the other parts of the ear where sound travels before reaching the nerve, especially the hair cells inside the cochlea, were not. My audiologist finally said there was not much more he could do for my right ear and suggested a cochlear implant (CI) on that side. I met with Ana Kim, M.D., at Columbia Presbyterian in New York City where I live, who performed the surgery. One of the absurdities of the health insurance industry became apparent to me when I chose a CI that would be paired with a hearing aid for my left ear. While the hearing aid alone was not covered by my insurance plan, the far more costly CI in combination with the hearing aid was


living with hearing loss

As an aging baby boomer who just turned 70, I find lots of company in the hearing loss crowd. It is hard to generalize how hearing loss affects people individually, but I am surprised that for many, vanity remains an issue. For me, the prospect of improved hearing outweighs any concern that signs of the vagaries of age are visibly hanging on my earlobes. covered because the two devices were synched. The surgery was more extensive than I expected. Dr. Kim opened up my skull behind my right ear and burrowed out a bed in the dura on my cranium to insert the implant, which was then wired through my cochlea. I maintained my wise-guy attitude about the situation, posting a picture of my bandaged head on Facebook, explaining they had opened up my head and found nothing. I had to wait three weeks for the effects of the surgery to subside before my new audiologist, Megan Kuhlmey, Au.D., also at Columbia Presbyterian, hooked me up for the first time—and nothing happened. I was not the first patient who expected instant magic. It took several months before hearing began to return to my right ear. Each hearing test showed progress, though I did not feel it. The hearing aid in my left ear allowed me to compensate for deficiencies in my right ear, but eventually I began making out words in my right ear as well. That is when I discovered one of the ways I had previously been coping with my hearing loss. While having morning coffee with my wife, she would have me cover my left ear; I was hearing things with my right. When she casually covered her mouth, I could no longer make out what she was saying. In that instant, I realized I had been reading lips for years without even realizing it. Two years after the surgery, the CI has not yet restored full hearing in my right ear, though it certainly has improved it, and I no longer have problems figuring out which direction a sound is coming from. With the type of implant I have, I cannot have an MRI, since the magnetic force could tilt the device inside my head, and I get conflicting advice on whether I can go through a metal detector. Since the technology is always improving, if you are a candidate for a CI, discuss with your doctor which one best suits your needs and lifestyle. As an aging baby boomer who just turned 70, I find lots of company in the hearing loss crowd. It is hard to generalize how hearing loss affects people individually, but I am surprised that for many, vanity remains an issue. For me, the prospect of improved hearing outweighs any concern that signs of the vagaries of age are visibly hanging on my earlobes. I do wish I had tackled this earlier, and had not dismissed comments by well-meaning people saying I was not hearing them properly. And since I have also had surgery in recent years on my eyes, nose, and throat, I realize I have kind of a bionic head anyway. What is inside my head is another matter.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

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Bob Liff is a public relations professional in New York City. a publication of hearing health foundation

fall 2019

25


veterans

h e ar i n g health foundation

John Dillard with a teammate before a parachute jumping drill.

Reviewing Tinnitus Research as an Educator, Veteran, and Patient By Imani Rodriguez

Having served 26 years in the U.S. Army, now-retired Col. John T. Dillard lives with tinnitus and noise-induced hearing loss. Tinnitus is the perception of ringing or buzzing in the ears without an external sound source, and noise-induced hearing loss occurs after long-term or sudden exposure to sound at unsafe levels. Together, they are the most prevalent health concerns among U.S. service members, past and present. As chair of Hearing Health Foundation’s Board of Directors, Dillard supports HHF’s mission of preventing and researching hearing conditions. He has also been helping to research the health conditions he lives with, as a U.S. Department of Defense consumer reviewer for the Peer Review Medical Research Program (PRMRP), which is part of the federal government’s Congressionally Directed Medical Research Programs. After meeting qualifications through a rigorous annual application process, Dillard has been a tinnitus consumer reviewer for three years, a role he expects to continue. A senior lecturer for systems acquisition management at the Naval Postgraduate School in Monterey, California, he is well connected with members of the military community, many of whom also live with tinnitus and hearing loss. The PRMRP role calls for Dillard to evaluate and score tinnitus research proposals based on their potential for

scientific and clinical impact. His academic experience as a military researcher has allowed him to assist with the critical thinking and reasoning aspects of each proposal. A chronic condition without an existing reliable treatment, tinnitus can be severe enough to disrupt daily life. Over the years Dillard has sought relief for his own symptoms and is keenly aware that certain products on the market claim to cure tinnitus. “There are no nutritional, pharmacological, surgical, deep brain or transdermal electrical stimulation, sound, transcranial magnetic, or other therapies proven efficacious for tinnitus,” Dillard says. “There are many treatments marketed to the naive consumer, patient, or sufferer, but none is truly effective. Most folks who know me understand my extreme caution against what I consider ‘snake oil’ treatments. People should spend no money on these products.” Dillard says one exception using sound therapy is Tinnitus Retraining Therapy (TRT), currently considered the gold standard in coping with—but not eliminating or curing—disruptive levels of tinnitus. “I have personally benefited from TRT,” he says. TRT combines counseling with sound-generating, ear-level devices that help the brain adjust to the tinnitus sound. The key is that the tinnitus sensation is not masked, but the brain becomes

Dillard says Tinnitus Retraining Therapy (TRT) is currently considered the gold standard in coping with—but not eliminating or curing—disruptive levels of tinnitus. The key is that the tinnitus sensation is not masked, but the brain becomes habituated to it so the tinnitus is no longer perceived as negative and disruptive. 26

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habituated to it so the tinnitus is no longer perceived as negative and disruptive. In a 2015 paper in the journal HNO, Pawel Jastreboff, Ph.D., Sc.D., who developed the treatment, reviewed published research about TRT since its introduction 25 years ago. His study concludes that the protocol has been shown to be effective no matter the cause of tinnitus; it has also been useful in treating hyperacusis (loudness intolerance) and misophonia (negative reactions to specific patterns of sound); it has been shown to be effective for 80 percent of patients according to the majority of 100-plus published studies; and its improved implementation has shortened the average time for improvement from one year to one month. Dillard is confident progress will continue to be made by both HHF and the Department of Defense. “We know now that tinnitus is more of a ‘brain problem’ that usually starts from damage to the ear in the form of

noise-induced hearing loss,” he says. “We need to help the brain heal itself and correct what is actually an auditory ‘hallucination’ of hyperactive neuronal activity. It’s a very resilient, maladaptive feedback loop that works much like learned pain.” Dillard adds, “Various pharmacological approaches are being tried that may help tamp down this hyperactivity. I’m hopeful that we will see progress on treating tinnitus in our lifetimes.”

Former HHF marketing and communications intern Imani Rodriguez studied communications and public relations at Rutgers University in New Jersey. For references, see hhf.org/fall2019-references.

Two Veterans Bridge a Generation

photo credit (right): courtesy of the carmel pine cone, may 2014.

By Col. John T. Dillard (U.S. Army, Ret.) Standing beside Henry “Diz” Newman each Friday is being next to history. At age 95, he is one of the last remaining from “the greatest generation”—U.S. veterans of World War II. Diz’s service was as a B-17 Flying Fortress pilot, at the ripe old age of 20. Twice shot down, he spent the better part of 1945 in the German prisoner of war camp designated Stalag 3. By chance I met Diz two years ago and learned that he had coincidentally spent time in the very same camp as my father, Lt. Matthew L. Dillard. They were members of the 8th Air Force, U.S. Army Air Corps. They were based out of England for their daily bombing runs to end Hitler’s war in Europe. And while they had not known each other, their paths had undoubtedly crossed within Stalag 3, all of the prisoners waiting for U.S. Army Gen. George S. Patton to finally liberate them. Being next to Diz is the next best thing to standing beside my own father, who died of natural causes back in the 1960s. Today we enjoy frequent Friday morning breakfasts, followed by a round or two of skeet shooting. It may sound strange that two military men a generation apart get such a kick out of a sport that could damage our hearing, but we are quite careful to double up on hearing protection before taking to the skeet field. I use Mack’s “pillow-soft” silicone earplugs that mold as you insert them for an incredibly tight seal, almost as sticky as bubblegum. Active noise-reduction electronic earmuffs go

World War II pilot Henry “Diz” Newman stands with a B-17 bomber at Monterey Regional Airport, California.

on top of that. These two combined really do the trick. Diz and I both wear hearing aids so we can converse with our teammates, but we often talk about how our hearing has declined with age. His hearing loss is a bit worse than mine but, curiously, he does not complain of tinnitus as an accompanying condition, like I do. An inspiration to me and others, Diz makes us happy to be alongside him.

Col. John T. Dillard (U.S. Army, Ret.) is the chair of Hearing Health Foundation’s Board of Directors. He wrote about his experience in the military and how it affected his hearing for the Fall 2017 Hearing Health cover story; see hhf.org/magazine.

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managing hearing loss

hearing health foundat i o n

Hearing Help for Veterans The U.S. Department of Veterans Affairs has long supported the health of service members, past and present. Here’s how you can file for hearing care benefits. A Long History

when

through the VA.

$2,400 Average hearing aid cost when purchased

through private practice.

1636 Year the VA dates back to, as an effort to

support Pilgrims.

“The United States has the most comprehensive system of assistance for veterans of any nation in the world, with roots that can be traced back to 1636, when the Pilgrims of Plymouth Colony were at war with the Pequot [tribe]. The Pilgrims passed a law that stated that disabled soldiers would be supported by the colony.” So says the U.S. Department of Veterans Affairs (VA) website—making the VA one of the oldest government institutions in U.S. history, predating even the establishment of the United States. In the late 1980s, the name changed from Veterans Administration, though the acronym remained the same. The VA hearing aid program began in the 1950s following World War II, after the number of veterans requiring hearing aids as a result of their service sharply increased.

Hearing Aids Through the VA

VA is able to order

in bulk so

through a private-practice audiologist or ENT.

Contact the VA To apply for VA benefits, go to va.gov/vaforms and search for “Form 10-10EZ” (Application for Health Benefits). You can complete and submit the form online. If you have questions, call 1-877-222-VETS (8387); TDD 1-800-829-4833; or visit your local VA healthcare facility. Find the closest location to you at va.gov/directory.

are eligible to get hearing aids through the VA.

Hearing loss and related conditions, such as tinnitus, may not be diagnostically discernable until years after your service, but you will still be able to get your hearing tested and to receive hearing aids if needed.

Portions of this article were adapted with permission from Say What Hearing, which provides resources about hearing aids, hearing loss, and tinnitus. For references, see hhf.org/fall2019-references.

1776 » Were near gunfire, aircraft, or loud motors; » Handled guns, mortars, explosives, or other

Establishment loud weapons; of the United States » Were required to wear earmuffs or sound of America. dampeners when doing your job;

» Operated heavy machinery; » Experienced any incidents with sudden loud noise, such as coming under fire or being near an IED (improvised explosive device) that exploded; » Experienced a head injury. 28

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veterans

‘I’m Hearing Better Now Than I Have in 20 Years’ Veterans benefit from hearing aids fitted via audiology telehealth. By Jamie Mobley In Vietnam, Jerry Smith was a paratrooper for the U.S. Army. When he got home, he thought he would never be able to hear again. “In the infantry, machine guns, rifles, hand grenades—all those noises blew my hearing away,” he says. “Helicopters, artillery, everything happening at once, all day, every day. When I came home from Vietnam in ’71, they didn’t know how to fix that kind of stuff.” For years, Smith has been getting his health care at the Southeast Louisiana Veterans Health Care System’s community-based outpatient clinic in Baton Rouge. He says the clinic has taken great care of him over the years. “Before I started wearing hearing aids, I couldn’t hear [a person speaking] at all,” Smith says. “Then after I got my first hearing aids, if there was background noise, it would block sounds and I couldn’t hear well.” He continues, “I just kind of got used to thinking [my hearing] would always be halfway. You’re always asking, ‘What’d you say?’ and people shied away from wanting to hold a conversation.”

Trying Telehealth

The Baton Rouge clinic has three audiologists working in-house and one audiologist who sees patients via telehealth. When hearing aids are prescribed, telehealth fittings are offered as an alternative to in-person fittings. Smith decided to give it a try. “The audiology department has been awfully good to me. They’ve gone out of their way to be helpful,” he says. Upon arrival for a telehealth fitting, veterans meet audiology health technician Audrey Fleet. First, Fleet makes sure veterans are prepared for the fitting, looking into their ears to make sure they are clear and ready. Then she goes over the devices with patients, giving a basic orientation on how to use them, take care of them, and order supplies—and how to get in touch with the clinic for potential questions or problems. During orientation, Jessica Riggs, Au.D., joins the conversation on-screen from her office in Mobile, Alabama. Once all three parties are in place, the telehealth fitting can begin. Fleet places a collar on the patient’s neck and a small, flexible probe into the ear canal, which Riggs uses to perform real-ear measurements using readings of the sound the veteran is receiving from the probe

The primary benefit of tele-audiology is the time saved, with less waiting for an appointment. When hearing aids are prescribed, telehealth fittings are offered as an alternative to in-person fittings.

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Audiology health technician Audrey Fleet prepares Vietnam veteran Jerry Smith for a telehealth appointment to fit his hearing aids.

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Feeling Grateful

As technology has improved, so have Smith’s hearing aids. “I’m hearing again. Before I started wearing hearing aids, I couldn’t hear you,” he says. “Now I can hear. If I’m sitting out there in the hallway and you’re talking to me, I can hear what you said. These aids are fine-tuned to what I need.” Having good hearing is very important to Smith. “I’m active in life. I do a lot of theater, I work backstage with lights and sounds, choreography,” he says. “I love it. Once you’re able to hear what you’re doing after the work you’ve put into it, it’s very satisfying.” Smith says he’s grateful for the Baton Rouge hearing clinic and for how they have helped him. He says, “I’m hearing better now than I have in 20 years.”

This is republished with permission from the U.S. Department of Veterans Affairs VAntage Point website, at blogs.va.gov. Jamie Mobley is a public affairs specialist at the New Orleans VA Medical Center. Share your story: Have you tried telehealth for your hearing? Tell us at editor@hhf.org.

photo courtesy u.s. department of veterans affairs

The sound levels of the hearing aid are adjusted remotely to match target amplification levels based on the patient’s hearing loss across the speech frequencies. This ensures the veteran gets a just-right level of amplification— not too loud, not too quiet.

while listening to recorded speech samples. Then Riggs remotely adjusts the sound levels of the hearing aid to match target amplification levels based on the patient’s hearing loss across the speech frequencies. This ensures the veteran gets a just-right level of amplification—not too loud, not too quiet. Smith says his telehealth fitting appointment with Fleet and Riggs was almost like being in the room with the audiologist. “Audrey was able to put me at ease. With the telehealth, the doctor was able to say, ‘You’re going to hear some bells ringing for a minute as I adjust the aids,’ and it was instantaneous,” he says. Fleet explains why she thinks teleaudiology is a good fit for veterans at her clinic. “Most of the time they can get in a little sooner if they do a telehealth fitting,” she says. “The primary benefit is the time saved, with less waiting for an appointment. We’ve had very good survey results.” Riggs agrees. “It’s neat! It cuts down on the veterans’ wait times. I like it because I know they are getting their hearing aids faster, and I’m happy to help,” she says. “Technology is always advancing!”


veterans

Defective Earplugs at the Center of Veterans’ Lawsuits By Joseph Oot

Veterans nationwide have been 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 Californiabased 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.

Faulty Equipment

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 the fee compensated CAEv2 users, and 3M said this settlement was not an admission of liability. However, the verdict against 3M sparked the flood of class-action lawsuits filed since then.

Direct Cause

As of August 2019, more than 1,200 lawsuits have been filed nationwide by service members seeking restitution (although to date only the whistleblower lawsuit has been settled). Retired U.S. Marine Capt. Matt Morrison of New Jersey is one such service member who filed his case against 3M in February 2019. 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 in Iraq and one in 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 tells a local news reporter.

Like Morrison, active duty more than military members are exposed to machinery, aircraft, and sudden weaponry blasts that leave their ears susceptible Lawsuits filed to noises as loud as 184 nationwide by decibels (dBA, or decibels service members adjusted for human hearing). seeking Without hearing protection, restitution sounds at or above 110 dBA for using the can instantaneously cause defective earplugs. permanent hearing loss and tinnitus, the top two health concerns for service members and veterans. Both the military and million hearing loss communities take seriously all reports of defective hearing protection, especially 3M’s penalty given the prevalence and fee to the U.S. permanence of hearing loss government after and tinnitus among veterans. its earplugs were Without a commitment to strict found defective, product performance, user but the settlement testing, and data verification was not an standards, service members admission of will remain at risk. liability.

1,200

$9.1

Joseph Oot is a writer with Consumer Safety, an organization run by New York’s Meneo Law Group, which provides information on lawsuits, court cases, and news affecting consumers. For references, see hhf.org/fall2019-references.

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My Hearing Loss, Before My Service By Harry V. Cortez

It’s assumed I was born deaf in my right ear. I don’t know if my late mother contracted rubella while she was pregnant with me, leading to this unilateral congenital deafness, or if, like the late New York City District Attorney Robert Morgenthau, I may have come down with a mastoid ear infection as a child that led to a hearing loss. Morgenthau hid his hearing loss from the U.S. Navy during his World War II service. The San Francisco Public Health Department examined my hearing annually during my childhood. But my deafness was hardly noticeable to either myself or my peers. In 1964, I tried enlisting with the U.S. Army Airborne division. At the Oakland Army Examination Station, I was rejected for enlistment because of my deaf ear. The following year, however, the Selective Service required that I submit to a physical examination for induction into the military. This time I was classified 1-A. I passed because I was given a flawed audiogram test. I pressed the button every time my deaf ear picked up the sound tones from my good ear through my skull. When I brought up the inconsistency of having failed to qualify for the military the year before, the physician who signed off on my physical exam explained, while looking at newspaper ads for tire sales, that the standards for physical fitness were not so high this year. Faced with being drafted into the U.S. Army, I received phone calls from different branches of the military services. I chose the U.S. Marines Corps’ two-year Active Reserve enlistment program. I served for almost eight months of active duty at Marine Corps Recruit Depot and Camp Pendleton in California and thrived as a Marine without my hearing impeding me. That is, until about a few weeks before I was due to ship out for Okinawa, Japan—and then possibly Vietnam with a replacement company— when I came down with a cold that plugged up my good ear. I reported in to sick bay and one thing led to another, and to the puzzlement of the Navy doctors I was asked: “How the hell did 32

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you get into the Marine Corps?” The implication being, I could get someone killed in combat with my condition! After being administered a more efficient audiogram, I was discharged from the Marines a few months later. I can say half a century later that I’ve never really struggled with my hearing loss all that much. But now at the age of 74, I’ve been advised to wear hearing aids to compensate for the loss of hearing high tones. I am currently trying out the use of hearing aids given me by the Veterans Administration.

Harry V. Cortez as a private in the U.S. Marine Corps, and recently in Santa Fe.

Harry V. Cortez lives in California.

Share your story: Are you a veteran with a hearing condition? Tell us at editor@hhf.org.

Support our research: hhf.org/donate


for Hearing Loss Research It’s easy to give to Hearing Health Foundation (HHF) through the Combined Federal Campaign.

In 2018 donors pledged a total of more than $90 million through the Combined Federal Campaign (CFC), the workplace giving program for current and retired federal and military personnel. CFC donors and other generous individuals choose HHF because they believe it offers the most practical approach to dealing with hearing-related issues and the best research opportunities to eventually find cures for hearing loss and tinnitus. Your support of HHF through the CFC will: » ensure that groundbreaking hearing and balance research progresses; » advance future therapies for hearing loss, tinnitus, auditory processing disorders, Ménière’s disease, hyperacusis, and other related conditions; » better the lives of more than 50 million Americans and their loved ones; and » enrich public knowledge of hearing health.

Please designate #11853 — Hearing Health Foundation as your charity of choice through the CFC campaign season that ends on Jan. 12, 2020. Thank you for your support!


tinnitus

h e ar i n g h ealth foundation

Does Tinnitus Differ With Age? Online surveys of tinnitus patients find distinctions by age group, which may point to better understanding the causes and treatments for tinnitus. By Hazel Goedhart and Markku Vesala

Tinnitus, or hearing ringing or buzzing without an external sound source, affects an estimated 10 to 20 percent of the population, with roughly 1 to 2 percent severely debilitated by the condition, to the point where it disrupts daily activities such as sleep. Yet there is no cure, and tinnitus remains under-researched and the science underfunded. Tinnitus Hub is uniquely positioned to gather large amounts of data from tinnitus patients. We are a volunteerbased, patient organization in the U.K. and run the largest online global community for people with tinnitus, called Tinnitus Talk. With over 29,000 registered members, we collect patient data through surveys and share results with researchers to help find better treatments and a cure. As with hearing loss, tinnitus becomes more common with age; more than a quarter of those over 65 say they have some form of tinnitus, according to a 2011 Hearing Review report. We wondered, how are older people affected, and how do they cope?

Tinnitus and Hearing Loss

We find that older people with tinnitus are highly likely to have self-reported hearing loss, which shows a connection between the two conditions.

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Age Group

Tinnitus Patients Who Also Report Having Hearing Loss

Under 18 18–24 25–34 35–44 45–54 55–64 65–74 75+

26 percent 30 percent 40 percent 54 percent 67 percent 74 percent 76 percent 79 percent

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This means that older adults often are coping with both hearing loss and tinnitus. As one of our respondents says: “Even though I have been diagnosed with only mild hearing loss, I just can’t hear people as well ‘over’ the tinnitus.” They may also find the tinnitus aspect harder to explain to others: “Tinnitus is not understood at all. I prefer saying I have a hearing loss.”

Older adults often are coping with both hearing loss and tinnitus. As one of our respondents says: “Even though I have been diagnosed with only mild hearing loss, I just can’t hear people as well ‘over’ the tinnitus.” They may also find the tinnitus aspect harder to explain to others: “Tinnitus is not understood at all. I prefer saying I have a hearing loss.” On the positive side, hyperacusis, or oversensitivity to sounds, appears less common among older tinnitus patients, with 54 percent of the 65-plus group reporting the condition, vs. 62 percent of the younger group. When older tinnitus patients do experience hyperacusis, our data shows it tends to be a milder form. Seniors in our surveys also are less likely to report their tinnitus as “reactive” to noise; in other words, they say their tinnitus is less likely to change due to certain environmental sounds.

Quality of Life

We see no difference among age groups when it comes to how much of the time a survey respondent is consciously aware of or annoyed by their tinnitus. However, we see a marked difference among age groups when it comes to mood changes, social withdrawal, or concentration problems from tinnitus. Older adults report lower rates of tinnitus-induced mood, social, and concentration issues.


tinnitus

Answering “Yes” to:

Percentage of Those Under 65

Percentage of Those Over 65

71

57

Has tinnitus changed your mood?

64

53

Has tinnitus affected your concentration?

92

88

Has tinnitus made you more socially withdrawn?

Older people also report feeling less “defined” by their tinnitus. This could be because older adults may be dealing with other life-impacting health issues.

Treatment and Support

When comparing older and younger tinnitus patients, our surveys show older adults are generally less likely to seek help, whether through treatment, their social network, or online. We see a small but statistically significant difference in the likelihood of seeking treatment (largely selfadministered, such as dietary supplements or sound therapy): 59 percent of under-65s tried a treatment, compared with 54 percent of the 65-plus group. We also find that 37 percent of under-65s never sought help from family and friends, vs. 53 percent of those over age 65. And, about three-quarters of seniors with tinnitus searched online to find help, vs. 98 percent of those in their 20s. We tracked online engagement in forums on Tinnitus Talk and found a dramatic drop-off by age. This is likely related to how older adults generally spend less time online overall and tend to be less internet-savvy.

Age

Estimated Time Spent on Tinnitus Talk

20s 40s 70s

123 days per year 89 days per year 38 days per year

What Does This Mean?

Even though the older tinnitus patient generally finds the condition easier to cope with, there are still many who struggle, and they may be less likely to seek support or treatment, either in person or online. As a patient organization, Tinnitus Hub focuses on providing online resources that are succinct and easy to find. We also encourage one-on-one correspondence between Tinnitus Talk members using direct messaging. Knowing there are peers who have similar challenges can help the older tinnitus patient cope. As one older respondent puts it: “How can people understand that you are being driven to madness when they hear nothing?” Recent tinnitus research is increasingly pointing to the need to define varying tinnitus “subtypes” as a prerequisite to finding a cure. The age-related differences that we found among tinnitus patients—such as hyperacusis being less common among older adults—may help with the definitions of these subtypes. There is much more to be learned about tinnitus in the old and the young before we can cure this debilitating condition. We at Tinnitus Hub remain committed to this goal and support the research of Hearing Health Foundation to restore hearing, as this will likely relieve or even eliminate tinnitus for many.

Hazel Goedhart (left) is a director and the chief strategist for Tinnitus Hub, founded by Markku Vesala. All referenced data comes from online surveys conducted by Tinnitus Hub in 2016 and 2018 with nearly 9,000 combined responses. All statistical effects described in the article are significant at 95 percent confidence level or higher. Statistical analysis was conducted by Iris den Haan (intern and student at the Free University of Amsterdam) and Brian Gendreau (a clinical professor of finance at the University of Florida). For more, see tinnitushub.com. To access the tinnitus forums directly, see tinnitustalk.com. For references, see hhf.org/fall2019-references.

Share your story: Tell us your tinnitus experience at editor@hhf.org.

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advocacy

h ear i n g health foundation

Have you been invited by someone you know through social media to join a group so you can get in on a “guaranteed great investment opportunity”? Before you turn over your hardearned money, read on for information from the U.S. Securities and Exchange Commission (SEC) on how to recognize and report investment fraud and financial scams. Hearing Health Foundation (HHF) spoke with the SEC’s Charu Chandrasekhar and Owen Donley.

If It Sounds Too Good to Be True, It Probably Is

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hhf: When and how did you become aware that investment schemes and fraud are a problem within Deaf and hearing loss communities? chandrasekhar: Historically, the SEC’s Enforcement Division has brought cases where large investment fraud schemes targeted individuals in Deaf and hearing loss communities as victims of fraud. We have a strong interest in encouraging investors to understand what to look out for, and importantly from an enforcement perspective, to report suspicious investment schemes and professionals. hhf: Can you describe how Deaf and hearing loss communities may be targets of fraud? chandrasekhar: The tactics we’ve seen include fraudsters soliciting investors by posing as, or recruiting people from, trusted parts of social networks like family, friends, or community members. We’re also aware that some fraudsters take advantage of the use of social media within these communities to target potential victims who may be socially isolated in other ways. The Deaf and hearing loss communities overlap with many of the other groups on which we’re also focused, such as seniors, active military, and veterans. Some fraudsters may view members of these groups as vulnerable to their tactics. donley: Yes, unfortunately, fraudsters may be, or pretend to be, part of a group that they’re trying to take advantage of by using a common bond to build trust. When fraudsters target victims based on their membership in a group or community, we refer to it as “affinity fraud.” Our office has an Affinity Fraud section on the Investor.gov website. It’s only natural to want to trust someone with whom you have something in common, but that’s exactly what fraudsters are counting on. Even if you know the person offering you an investment opportunity, check out the person’s background and be sure the person is a currently registered investment professional. You can easily find this information by typing the person’s name into the red search box on Investor.gov. It’s a great first step to protecting your money.


advocacy

hhf: Can you share some of the main warning signs that individuals should be looking for when they’re approached with investment possibilities? donley: A guaranteed high investment return is a hallmark of fraud. High returns generally involve high risk. If someone guarantees you astronomical returns with no risk, the person is lying. Investors should remember that if an investment sounds too good to be true, it probably is. Investors should be wary of unregistered or unlicensed sellers and high-pressure sales tactics. Finally, investors should be skeptical if they are asked to use a credit card or wire money abroad to invest. hhf: What if you’re asked to join an investment group, whether online or in person, and told that time is running out on your chance to be part of the investment? donley: Often fraudsters claim to have limited opportunities available or limited time left to make you feel like you’re at risk of missing out. You should take the time to do your own independent research of the investment opportunity and should not feel rushed into making these types of important decisions. chandrasekhar: Whenever you’re considering an investment or have chosen to invest, keep detailed records of your communications. Save emails, marketing materials, and statements, and make notes of your conversations. These may be helpful to you if you report potential misconduct to the SEC. hhf: How can investors figure out whom to trust? donley: I can’t tell you whom to trust, but I can tell you whom not to trust. If anyone offering you an investment misrepresents his or her background, steer clear. You can use the tools on Investor.gov to see if the seller is currently registered and if the seller has any disciplinary history. chandrasekhar: Bottom line: If you’re offered an investment opportunity, or hear about a friend or loved one who is getting solicited to make an investment— and if anything about the investment or the seller seems too good to be true or doesn’t seem quite right—please report it to the SEC.

Fraudsters may solicit investors by posing as, or recruiting people from, trusted parts of social networks such as family, friends, or community members. They may use social media within these communities to target potential victims who may be socially isolated in other ways.

Charu Chandrasekhar is the chief of the SEC Enforcement Division’s Retail Strategy Task Force. Owen Donley is the chief counsel of the SEC’s Office of Investor Education and Advocacy. For references, including direct links to report fraud and to read press releases about prior cases, see hhf.org/fall2019-references. The Securities and Exchange Commission disclaims responsibility for any private publication or statement of any SEC employee or Commissioner. This article expresses the authors’ views and does not necessarily reflect those of the Commission, the Commissioners, or other members of the staff.

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media

h ear i n g h ealth foundation

Net Gains A longtime employee of a television network launched four decades ago reflects on its ongoing mission of accessibility. By David H. 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. 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 Sheldon I. Altfeld, an Emmy Award–winning writer, producer, and director, and Kathleen Gold, whose 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, seven 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. 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— allowing 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 languagefree programming for the general public, the deaf and 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 the 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 mid-1990s, when broadband internet was relatively new and serving low-resolution streaming video, Silent Network was one of the first 24/7 networks to stream its live satellite signal to the internet simultaneously. 38

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Opposite: Silent Network cofounders Sheldon I. Altfeld and Kathleen Gold flank comedian Norm Crosby during the production of “Sign of Our Times” in 1979.

Above: Hosts Herb Larson (sitting, left) and Lou Fant (center) with actor Lou Ferrigno on the set of the network’s long-running series “Off-Hand.”

Right: Larson and Altfeld (far right) pose with one of several Emmy awards they won on behalf of Silent Network.

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, narration, and interpreting work for the network. 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 seniors who lost their hearing later in life, seem to gravitate toward the open captioned programming on Access Network, especially classic films

and TV 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 immensely 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 1990s, 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.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

Support our research: hhf.org/donate a publication of hearing health foundation

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h ear i n g h ealth foundation

Close-Minded Captioning In the years since a U.S. District Court ruled that streaming services must include closed captioning, online content has grown exponentially while accurate, informative captioning remains a work in progress. 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. For TV programs, the Federal Communications Commission (FCC) requires TV captions to be “accurate, synchronous, complete, and properly placed.” The FCC’S 21st Century Communications and Video Accessibility Act of 2010 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 in 2011, when the National Association of the Deaf sued Netflix for the lack of closed captioning on videos on their site. A year later, in 2012, a judge in the U.S. District Court for the District of Massachusetts 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.

Machine (AI) translation can’t register sarcasm, context, or word emphasis, as a writer in The Atlantic points out. It can’t capture the cacophonous sounds of multiple voices speaking at once. It just types what it registers.


media

If you’re watching television or your favorite show and you notice poor closed captioning, file a complaint to the FCC under the “Access for People with Disabilities” section of its Consumer Complaint Center. 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 Video, 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 autocaptioning 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. Consider also that tone and verbal inflection can change the entire meaning of a sentence. According to a 2014 article in The Atlantic, machine (AI) 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 TV 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? 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 FCC under the “Access for People with Disabilities” section of its Consumer Complaint Center, at consumercomplaints.fcc.gov.

Amber Gordon is a senior at Longwood University, Virginia. For references, see hhf.org/fall2019-references.

Share your story: Do you use captioning software? Tell us at editor@hhf.org.

Support our research: hhf.org/donate

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research

Presenting the 2019 Emerging Research Grantees

EMERGING RESEARCH GRANTS

Hearing Health Foundation (HHF) is proud to announce the recipients of Emerging Research Grants (ERG) for the year starting July 2019. Following a rigorous review process, our Scientific Review Committee and Council of Scientific Trustees, comprised of senior expert scientists and physicians from across the U.S., have chosen these 15 especially meritorious projects to fund, covering a broad range of hearing and balance science. HEARING LOSS IN CHILDREN

One grant was awarded for research on congenital and acquired childhood hearing loss and its etiology, assessment, diagnosis, and treatment. This grant was generously funded by The Children’s Hearing Institute.

HYPERACUSIS

One grant was awarded for research that will increase our understanding of the mechanisms, causes, diagnosis, and treatments of hyperacusis and severe forms of loudness intolerance. This grant was generously funded by Hyperacusis Research Ltd.

TINNITUS

The Les Paul Foundation Award for Tinnitus Research was awarded to research that will increase our understanding of the mechanisms, causes, diagnosis, and treatment of tinnitus. This grant was generously funded by the Les Paul Foundation.

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Vijayalakshmi Easwar, Ph.D.

University of Wisconsin–Madison Project: Neural correlates of amplified speech in children with sensorineural hearing loss Goal: To investigate the relationship between behavioral and neural measures of speech audibility in 5- to-16-year-old children with congenital sensorineural hearing loss, which will reveal the accuracy of the neural measures in confirming whether speech sounds are audible when hearing aids are being worn. This information will then be translated to infants. The use of neural measures may confirm inadequate hearing aid benefit earlier than methods that rely on infants’ behavioral participation in hearing tests, and in turn accelerate clinical decisions for improved early access to speech.

David Martinelli, Ph.D.

University of Connecticut Health Center Project: Creation and validation of a novel genetically induced animal model for hyperacusis Goal: To understand how sounds perceived as loud enough to be painful are transmitted from the cochlea to the brain. The project uses a novel animal model in which a certain protein that is essential for the proposed “pain” circuit is missing, with the prediction that this will lessen the perception of auditory pain when high intensity sounds are presented. Manipulating the molecular mechanisms of outer hair cell afferent neurons—which may be communicating to the brain when sounds are painful or damaging—to dampen the perception of auditory pain may eventually relieve hyperacusis.

Micheal Dent, Ph.D.

University at Buffalo, the State University of New York Project: Noise-induced tinnitus in mice Goal: To create a reliable model for assessing tinnitus in a mouse, with an objective measure that separates hearing loss from tinnitus. The project aims to determine the time course of tinnitus and its recovery following nontraumatic noise exposures in mice. A way to measure and characterize tinnitus in awake and behaving animal models facilitates a means to compare the mouse model to humans with tinnitus and to develop prevention and treatment strategies for tinnitus.


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CENTRAL AUDITORY PROCESSING DISORDER

Four grants were awarded for research that will increase our understanding of the causes, diagnosis, and treatment of central auditory processing disorder (CAPD), an umbrella term for a variety of disorders that affect the way the brain processes auditory information. All four CAPD grantees are generously funded by the General Grand Chapter Royal Arch Masons International.

Kristi Hendrickson, Ph.D., CCC-SLP

University of Iowa Project: Neural correlates of semantic structure in children who are hard of hearing Goal: To identify key factors that influence language outcomes in children who are hard of hearing. Children with hearing loss tend to know fewer word meanings than their typical hearing peers. This gap in vocabulary skills is crucial because vocabulary is one of the strongest predictors of academic achievement. This project examines semantic memory structure (i.e., how the brain groups concepts with common properties), which influences vocabulary knowledge and may be a factor amenable to change through intervention.

Vijaya Prakash Krishnan Muthaiah, Ph.D.

University at Buffalo, the State University of New York Project: Potential of inhibition of poly ADP-ribose polymerase as a therapeutic approach in blast-induced cochlear and brain injury Goal: To investigate the mechanistic basis of blast-induced neurodegeneration and to identify and characterize potential therapeutic targets for manifestations of blast-induced traumatic brain injury, including hearing loss, cochlear synaptopathy, tinnitus, and associated deficits such as accelerated cognitive decline, depression, and anxiety. It is well established that poly ADP-ribose polymerase (PARP) is a key mediator of cell death caused by oxidative stress, so the study will explore the potential of 3-aminobenzamide, a PARP inhibitor, to ameliorate cochlear and brain injury.

Hao Luo, M.D., Ph.D.

Wayne State University Project: Cochlear electrical stimulation–induced tinnitus suppression and related neural activity change in the rat inferior colliculus Goal: To uncover the underlying mechanisms of cochlear electrical stimulation (CES), which has been shown to be effective for suppressing tinnitus-like behavior in a rat model. However, electrode insertion during surgery can lead to cochlear tissue damage and significant, permanent hearing loss. This project will investigate whether CES’s effects may be more robust when hearing is protected from implant trauma by the intra-cochlear application of AM-111, a novel enzyme inhibitor.

William “Jason” Riggs, Au.D.

The Ohio State University Project: Electrophysiological characteristics in children with auditory neuropathy spectrum disorder Goal: To understand the different sites of lesion (impairment) in children with auditory neuropathy spectrum disorder (ANSD), a type of hearing loss that affects 10 to 20 percent of all children with severe to profound sensorineural hearing loss and which results in auditory perception problems. The project will investigate neural encoding processes of the auditory nerve in children using electrophysiologic techniques (acoustically and electrically evoked) in order to improve clinical cochlear implant mapping strategies used in children with ANSD. a publication of hearing health foundation

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Dunia Abdul-Aziz, M.D.

HEARING HEALTH

HHF awarded eight grants funded by donors who designated their gifts for the most promising research. These projects address the full range of hearing and balance science.

Massachusetts Eye and Ear, Harvard Medical School Project: Targeting epigenetics to restore hair cells Goal: To develop therapies for hearing loss, balance disorders, tinnitus, and hyperacusis through understanding hair cell development, maturation, and aging. A novel technology to reprogram stem cells from the inner ear to turn into hair cells has led to the identification of a new candidate drug target, lysine-specific demethylase 1 (Lsd1), an epigenetic regulator that appears to be at least partly responsible for the loss of regenerative capacity. The project will study the role of Lsd1 in the formation of hair cells and to investigate its potential as a drug target for the treatment of hearing loss.

Pierre Apostolides, Ph.D.

University of Michigan Project: Novel mechanisms of cortical neuromodulation Goal: To investigate whether vagus nerve stimulation (VNS) may be a potential treatment to mitigate tinnitus. VNS releases natural chemicals (neuromodulators) that increase the brain’s ability to change, and it has already secured Food and Drug Administration approval for treating other non-otological disorders. Neuromodulators affect the function of dendrites, the long cable-like structures through which neurons receive and integrate electrical signals. By identifying how neuromodulators impact the function of dendrites, these experiments may uncover novel targets for developing new treatments for tinnitus.

Kristy J. Lawton, Ph.D.

Washington State University Vancouver Project: Characterizing noise-induced synaptic loss in the zebrafish lateral line Goal: To study noise-induced hearing loss using the zebrafish, where the auditory sensory cells are easily accessible and highly similar to those in humans, and to investigate whether noise levels thought to be safe for auditory sensory hair cells may actually damage hearing at the level of peripheral auditory synapses, leading to “hidden hearing loss� as it is not captured by traditional hearing tests. The overarching goal is to inform the development of preventative measures and/or therapeutic options for noise-induced hearing loss.

Anat Lubetzky, Ph.D.

New York University Project: A balancing act in hearing and vestibular loss: assessing auditory contribution to multisensory integration for postural control in an immersive virtual environment Goal: To contribute to a better understanding of the implications of hearing loss on balance function, and to provide data for subsequent studies examining treatment options for hearing loss and the effect of treating hearing loss on balance and falls. The study will answer whether a complete audiometric evaluation should be part of a standard balance screening, whether auditory cues should be included in balance assessment and fall prevention programs, and whether rehabilitation of hearing loss can improve balance. 44

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Jameson Mattingly, M.D.

The Ohio State University Project: Differentiating Ménière’s disease and vestibular migraine using audiometry and vestibular threshold measurements Goal: To establish strong, reliable diagnostic tests to differentiate common etiologies of recurrent balance conditions, namely Ménière’s disease (typically an otologic disease) and vestibular migraine (typically little related to auditory function), through the combined use of vestibular threshold testing with audiograms. More broadly, the project will help to better understand the vestibular and auditory systems and their relationships with each other.

Gail M. Seigel, Ph.D.

University at Buffalo, the State University of New York Project: Targeting microglial activation in hyperacusis Goal: To focus on the involvement of inflammation in the sound processing centers of the brain following noise exposure. The project will test the feasibility of anti-inflammatory drugs as a potential therapy for hyperacusis and hearing loss caused by excessive noise exposure.

Ian Swinburne, Ph.D.

Harvard Medical School Project: Classifying the endolymphatic duct and sac cell types and their gene sets using high-throughput single-cell transcriptomics Goal: To understand how the inner ear endolymphatic duct and sac stabilize the inner ear’s environment and to identify ways to restore or elevate this function to mitigate or cure Ménière’s disease. The endolymphatic duct and sac play important roles in stabilizing fluids necessary for sensing sound and balance. The recurrent vertigo in Ménière’s is likely caused by a malfunction of the endolymphatic sac, as the sac appears to act as a relief valve to maintain a consistent volume and pressure in the inner ear.

Victor Wong, Ph.D.

Burke Medical Research Institute, Weill Cornell Medicine Project: Targeting tubulin acetylation in spiral ganglion neurons for the treatment of hearing loss Goal: To understand how to encourage spiral ganglion neuron growth after damage by focusing on alpha-tubulin acetylation–promoting drugs that have been found to boost axon (neurite) regeneration in injured neurons. Both the success of cochlear implants and of future hearing loss therapies critically depend on the integrity of spiral ganglion neurons and functional neurites for direct stimulation. Enhancing alpha-tubulin acetylation may boost the repair and regeneration of microtubules, the molecular “tracks” important for proper neurite function and growth, thereby restoring auditory function.

To learn more about the ERG program and details about these projects, see hhf.org/erg and hhf.org/erg-2019-grantees.

Support our research: hhf.org/donate a publication of hearing health foundation

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Recent Research by Hearing Health Foundation Scientists, Explained Estrogen’s Role in Hearing and Protecting Against Hearing Loss

In terms of hearing, differences between men and women include better outer hair cell function and more prominent auditory brainstem response in women. Women also have lower rates of hearing loss than men, and men experience declines in hearing more rapidly than their female counterparts.

While the anatomy of the inner ear does not vary much among individuals, differences in hearing and hearing loss in men and women are well documented. A recent review of these differences by Benjamin Z. Shuster, Didier A. Depireux, Ph.D., Jessica A. Mong, Ph.D., and Ronna Hertzano, M.D., Ph.D., a member of the Hearing Health Foundation’s Hearing Restoration Project, appeared in the June 2019 issue of the Journal of the Acoustical Society of America. Surveying the existing literature, the authors summarize what is known about estrogen’s role in protecting against or lessening the effects of hearing loss. Estrogen is a hormone present in all human beings but in higher levels more often in individuals who identify as female. Documented sex differences include better outer hair cell function and more prominent auditory brainstem response in women. In addition, women have lower rates of hearing loss than men, and men experience declines in hearing more rapidly than their female counterparts. There is substantial evidence that estrogen plays a role in these differences, which is unsurprising, given that sex hormones are often behind physiological differences between the sexes. Studies demonstrate that estrogen helps determine hearing ability and can protect hearing over time. But despite ample evidence of estrogen’s role in hearing, scientists are still not entirely sure how it works. Further research on estrogen and hearing will help scientists develop treatments for age-related and noise-induced hearing loss. A better understanding of estrogen’s role in hearing and differences between the sexes is also important because, as the authors point out, “a large sex bias still exists in many aspects of hearing research,” which means that studies that involve only men or that do not account for sex at all could lead to the development of treatments that will be less effective for women. —Christopher Geissler, Ph.D.

HRP consortium member Ronna Hertzano, M.D., Ph.D., is an associate professor of otorhinolaryngology–head and neck surgery at the University of Maryland School of Medicine. Christopher Geissler, Ph.D., is HHF’s director of program and research support. To learn more, see hhf.org/hrp. For references, see hhf.org/fall2019-references.

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photo credit: amanda janesick, ph.d., in the lab of hrp member stefan heller, ph.d.

research

Hearing Health Foundation (HHF) improves the lives of people with hearing loss and related conditions by funding research, connecting researchers, publicizing new findings, raising awareness about hearing loss, and promoting hearing health. Complex and interconnected, hearing loss and its variants impact speech processing, brain function, cognition, interpersonal relationships, psychological well-being, and quality of life. HHF’s advances in one aspect or disease-specific area of hearing often benefit many others, creating pathways to better prevention methods, treatments, and cures. » Fundamental studies of inner ear hair cell function

may shed light on these mechanisms: how hearing loss occurs, how balance is disturbed, how tinnitus is generated, how the brain processes sound and speech, and how cognitive decline accelerates. As a consequence, advancing knowledge in one area of research benefits many related areas and promotes novel therapies.

» Breakthroughs in understanding sensorineural

hearing loss also enlighten studies on tinnitus, hyperacusis, and auditory processing disorders because the biological systems that are involved— the inner ear, the brainstem, and parts of the brain such as the auditory cortex—are shared.

» Developing new means to deliver therapeutic drugs

to the inner ear across the blood-labyrinth barrier may lead to discoveries about that barrier that help scientists prevent damage to hearing as a side effect of other drugs (ototoxicity) or of infection.

» Work on the role of neural circuits in the auditory

processing of speech may improve our understanding of hyperacusis, as these same neural circuits play a role in the brain’s sensitivity to sound.

» Discovering how to regenerate inner ear hair cells

to restore hearing may also help medical researchers and clinicians treat tinnitus, which is often caused by these hair cells “mis-signaling” the brain.


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Picture Your Company Logo Here Learn about Hearing Health Foundation’s HRP research consortium investigating hair cell regeneration to treat hearing loss and tinnitus.

Hearing Health Foundation’s Emerging Research Grants (ERG) fund innovative approaches toward understanding, preventing, and treating hearing and balance conditions.

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meet the researcher

hearing health foundation

EMERGING RESEARCH GRANTS

Meet the Researcher

Emerging Research Grants (ERG) As one of the only funding sources available for innovative research, HHF’s ERG program is critical. Without our support, scientists would not have the needed resources for cutting-edge approaches toward understanding, preventing, and treating hearing and balance disorders.

Micheal Dent, Ph.D.

University at Buffalo, the State University of New York

Dent received her doctorate in psychology from the University of Maryland, College Park, and completed a postdoctoral fellowship in physiology at the University of Wisconsin Medical School. A 2019 Emerging Research Grants scientist, Dent is a psychology professor at the University at Buffalo and the recipient of the Les Paul Foundation Award for Tinnitus Research.

In Her Words i have always been fascinated by illusions. My research is to try to figure out ways to get an animal to “tell” you they are experiencing an illusion—such as tinnitus. One behavioral methodology that minimizes the problems was an identification method developed by my colleagues. This method separates hearing loss and motivation from tinnitus. It had not yet been used on a mouse, however, and mice are not as easy to train compared with other rodents or birds. My lab brainstormed and developed a system for studying tinnitus in mice using this methodology, with slight modifications. Results from our first few mouse subjects living in noise match those from rats injected with sodium salicylate to induce tinnitus, which is promising. i originally wanted to become an elementary school teacher. At my small liberal arts college, St. Mary’s College of Maryland, the human development track overlapped with the psychology track, and I found myself in a “sensation and perception” class at the same time I was in a “psychology of learning” lab. In the former, I learned about processing visual and auditory information, and was fascinated by how our sensory systems fool us. In the latter, we had our own rat for a semester and I trained mine using classical and operant conditioning techniques that taught me all sorts of principles of learning and motivation. Hooked, I immediately switched majors to psychology. my mother-in-law suffers from hearing loss. For years, she didn’t wear her hearing aids and became isolated from conversations. She wears them regularly now, but I think 50

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some irreversible damage was done, in terms of social isolation and now dementia. This has brought home the importance of healthy communication while aging. when i was younger, I wanted to be an astronaut. My terrible air- and seasickness made me decide not to pursue that, however! If I had not become a researcher, I would have liked to run a zoo. Watching animals is fascinating, and it has definitely shaped my career interests. i was a military brat growing up. I lived in Germany, Italy, Texas, Taiwan, Florida, Japan, England, and Maryland—all before I hit high school. I am married to a pilot, so whenever I get too restless these days, I talk my husband into skipping town to visit somewhere new.

Micheal Dent, Ph.D., received the Les Paul Foundation Award for Tinnitus Research. We thank the Les Paul Foundation for its support of innovative research to increase our understanding of the mechanisms, causes, diagnosis, and treatment of tinnitus.

We need your help funding the exciting work of hearing and balance scientists. Please consider donating today to Hearing Health Foundation to support groundbreaking research. Visit hhf.org/how-to-help.


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Hamilton® CapTel® for Web/iOS/Android™

Life-changing Solutions When it comes to hearing on the phone, Hamilton® CapTel® makes all the difference. Reliable and accurate captions of what’s said to you over the phone ensures clarity on every call – eliminating the frustration even a simple phone call can make! Explore all of the Hamilton CapTel solutions today!

HamiltonCapTel.com/HHM1019 080719 FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. To learn more, visit fcc.gov. Voice and data plans may be required when using Hamilton CapTel on a smartphone or tablet. Hamilton CapTel may be used to make 911 calls, but may not function the same as traditional 911 services. For more information about the benefits and limitations of Hamilton CapTel and Emergency 911 calling, visit HamiltonCapTel.com/911. Courtesy of Cisco Systems, Inc. Unauthorized use not permitted. Third-party trademarks mentioned are the property of their respective owners. The Hamilton CapTel phone requires telephone service and high-speed Internet access. Wi-Fi capable. Copyright © 2019 Hamilton Relay. Hamilton is a registered trademark of Nedelco, Inc. d/b/a/ Hamilton Telecommunications. CapTel is a registered trademark of Ultratec, Inc.


SIMON M.

after receiving MED-EL‘s cochlear implant to treat his single-sided deafness


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