Spring 2019
A Publication of Hearing Health Foundation
hhf.org
The Managing Hearing Loss Issue Facing daily challenges with grit, and grace
Hearing Health Foundation, 363 Seventh Avenue, 10th Floor, New York, NY 10001
a publication of hearing health foundation
spring 2019
1
HEAR EVERY WORD
NOT EVERY THIRD. HEAR CLEARLY, SPEAK CLEARLY WITH AMPLIFIED CORDLESS PHONES.
AMPLIFIED CORDLESS PHONES » Volume Booster amplifies call volume up to 50dB » 6-level custom tone settings (for handsets) KX-TGM450S
Up to
50 db
Voice Amplification
ALSO AVAILABLE
KX-TGM430B
KX-TGM420W
» Adjustable ringer volume up to 112dB Up to
112db
Ring Tone Volume
» Slow Talk (Real Time Voice & Answering System Messages) » Bright LEDs light up when phone rings » Large, backlit LCDs, keypads and touch buttons » Talking keypad, phonebook and caller ID » Expands to 6 handsets
shop.panasonic.com/amplified
letter from the chair & ceo
DEAR READERS & SUPPORTERS, each spring, the changing of the seasons brings new life, and at Hearing Health Foundation (HHF), we have also been in bloom. This issue’s theme is “managing hearing loss,” with an inspiring cover story from a young man who came to embrace the technology he uses, a cochlear implant, and his identity as a person with hearing loss. We also share ways to improve communication, travel well, train your brain, and care for your hearing aid, as well as input from audiologists about the coming over-the-counter hearing aid category, whose intent is to increase accessibility and affordability. To this end, I also recently voiced my support of AB 598, a bill in California, where I live, that would require health insurance policies and plans to cover hearing aids for children. With spring in the air, I had a chat with our interim CEO, Margo Amgott, a seasoned nonprofit executive who has proven to be a steady hand through a period of transition at HHF. Thank you, Margo, for stepping in and quickly providing strong leadership at the helm of HHF. As of late March, you’ve been aboard for four months. What do you think the future holds for HHF? I continue to be impressed and delighted at everything I learn about HHF and the changes and growth over recent years. HHF-funded researchers are discovering better treatments for hearing loss and related conditions, and they are identifying strategies that support, treat, and prevent disabilities related to hearing and balance disorders. The researchers we fund—thanks to the generosity of our community of supporters—are truly at the top of their fields and making great progress understanding these often debilitating conditions. How do you think HHF differs from other nonprofit organizations working in science and public health? HHF has the whole package: brilliant, insightful researchers chosen by senior scientists who are the unsung heroes on our advisory committees; our unique scientific consortium fostering collaboration; and dedicated and creative staff—and all are backed by a committed Board of Directors. It’s a winning strategy, and
it’s making a difference. This magazine also does its part, bringing information and advocacy to a readership that reaches over a million, due to our presence in hearing healthcare waiting rooms and veterans hearing centers as well as through our 35,000-plus individual subscribers. I believe HHF is changing lives every day. What do you see is next for HHF? With the search for a new executive director nearly complete, I am confident we will have a fantastic, experienced leader this spring. I will be forever grateful for my opportunity to have gotten to know the talented HHF staff and volunteers and to learn about the obstacles and opportunities confronted by the millions of people living with hearing loss. Once the new leader is in place, the organization is sure to redouble efforts to prevent, research, and improve treatments for hearing loss, tinnitus, and other hearing and balance conditions, especially in a climate of technological advancements and greater access. I look forward to seeing how this dedicated organization continues to thrive during the coming years.
Elizabeth (Betsy) Keithley, Ph.D.
Margo Amgott Interim CEO, HHF
Chair, HHF Board of Directors
a publication of hearing health foundation
spring 2019
3
HEARING HEALTH The Managing Hearing Loss Issue Spring 2019, Volume 35, Number 2
Publisher Hearing
Managing a hearing loss involves not only acceptance and treatment of the condition, but also educating others about the daily challenges of living well with it.
Editor Yishane
Lee
Art Director Robin Senior Editors
Health Foundation Kidder
Amy Gross, Lauren McGrath
Medical Director David
Features 08 Managing Hearing Loss Hearing Loss Is My Superpower. Frank Barnes III 12 Managing Hearing Loss What People With Hearing Loss Want You to Know. Lisa Giles 14 Living With Hearing Loss Mindfulness Over Ménière’s. Anthony M. Costello. Advancing Accessibility in the Audiology Profession. Lauren McGrath 18 Managing Hearing Loss 8 Tips for the New Hearing Aid User. Brad Grondahl. Train Your Brain to Listen. Katherine Bouton 22 Music The Man Who Chased Sound Wore Hearing Aids. Sue Baker 24 Family Voices Miracle Moments. Casey Dandrea. Being There for My Brother. Joe Mussomeli 28 Travel Have Loop Will Travel. Stephen O. Frazier
30 Technology Tell Me Where It’s Quiet. Gregory Scott 32 Hearing Health What Links Are There Between Food and Hearing? Meagan Rowley 34 Hearing Aids Over-the-Counter Hearing Aids on the Horizon. Laurie Hanin, Ph.D., CCC-A; Rebecca M. Lewis, Au.D., Ph.D., CCC-A; Kim Cavitt, Au.D.; Nicholas S. Reed, Au.D. 40 Hearing Health How to Plan for the Cost of Hearing Care. Matthew Phillips. The 4 Types of Hearing Loss. Lauren McGrath and Marjorie Saavedra 42 Research A New Role for the Hearing Restoration Project’s Scientific Director. Tamara Hargens-Bradley 44 Research Recent Research by Hearing Health Foundation Scientists, Explained. 46 Research Shared Knowledge Is Power. Lauren McGrath. A Home for Hearing Research. Neyeah Watson
Departments
Sponsored
03 Letter From the Chair & CEO
17 Advertisement A Hearing Aid That Combines Every Top Feature With No Drawbacks? Sounds Marvelous.
06 HHF News 26 Meet the Donor Ryan W. Brown 50 Meet the Researcher Khaleel Razak, Ph.D.
48 Advertisement Tech Solutions. 49 Marketplace
Cover Frank Barnes III in Monument Valley Navajo Tribal Park, Arizona. Visit hhf.org/subscribe to receive a FREE subscription to this magazine. 4
hearing health
hhf.org
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. Robert A. Dobie, M.D. Judy R. Dubno, Ph.D. Anil K. Lalwani, M.D. Rebecca M. Lewis, Au.D., Ph.D., CCC-A Joscelyn R.K. Martin, Au.D. Board of Directors
Elizabeth Keithley, Ph.D., Chair Sophia Boccard Robert Boucai Col. John T. Dillard, U.S. Army (Ret.) Judy R. Dubno, Ph.D. Ruth Anne Eatock, Ph.D. Jason Frank Roger M. Harris David S. Haynes, M.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 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.
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.
ReSound LiNX Quattro™
“I had no idea that hearing aids could do everything they do.” RON TURNER Football coach and grandfather
Coach Ron Turner has been wearing hearing aids since 2012. They all helped. But when he tried ReSound LiNX Quattro, he knew right away they were “by far” the best. A game changer. For him, it’s not just the ease of rechargeable batteries. Or the comfort and style. Or even the connectivity to other devices. It’s that he can hear his five grandchildren better than ever before. ReSound LiNX Quattro -- For the moments that matter most. Hear more from Ron about his experience at www.ReSound.com/Quattro.
hhf news
h ear i n g health foundation
IN MEMORIAM: Noel hearing health foundation (hhf) shares with great sadness the passing of Board of Directors member Noel L. Cohen, M.D., who dedicated his career to helping people hear. Cohen was a world-renowned cochlear implant surgeon at New York University (NYU) Langone Medical Center whose contributions as a clinician, scientist, and educator will forever enrich hearing health. Cohen served as a lieutenant in the U.S. Naval Reserve before completing his ENT residency at NYU School of Medicine and Bellevue Hospital in 1962. He held many leadership roles in the years to follow: He was a professor of otolaryngology at NYU; the chair of NYU’s department of otolaryngology–head & neck surgery; the acting dean at the NYU School of Medicine; and the president of the NYU Hospital Center. Elizabeth Keithley, Ph.D., the chair of HHF’s board, spoke highly of Cohen’s passion for building the hearing research community by providing opportunities for its
L. Cohen, M.D. youngest members. “He was a strong advocate for funding young investigators through our Emerging Research Grants [ERG] program to help their establishment as academics and scientists,” Keithley says. Cohen oversaw the ERG grantmaking process as a member of HHF’s Council of Scientific Trustees (CST) prior to joining the board in 2016. Additionally, Cohen and his late wife, Baukje, were committed financial supporters of HHF through their family foundation. Anil Lalwani, M.D., also a member of HHF’s board and the head of the CST, was a colleague of Cohen’s at NYU. He fondly remembers him as “a surgeon instrumental in providing the priceless gift of hearing to countless youngsters and adults who otherwise would still be living in a silent world.” Cohen will be deeply missed by HHF and the otolaryngology community. We are grateful to Cohen for his immense service to those who study, treat, and live with hearing loss.
Starstruck FOR SCIENCE:
Music legend, humanitarian, and activist Cyndi Lauper performed to benefit Hearing Health Foundation in New York City in 2013.
6
hearing health
hhf.org
do you know—or have a connection to—a famous actor, musician, athlete, media personality, or political leader? Are you acquainted with someone who is well known, who does high-profile work, and whose talents and energy could ignite more awareness of hearing loss? Tell us! A new celebrity partnership can help HHF raise more funds for life-changing science to prevent, treat, and cure hearing and balance conditions. A high-profile individual can be interviewed in this magazine; speak or perform at an HHF-run event; create and share a video about the importance of HHF’s work; or showcase opportunities to give to HHF on personal social media pages. Even a simple verbal endorsement can inspire fans to take action. While any star can make HHF shine brighter, a personal connection to hearing loss or related conditions is encouraged. Our celebrity relationships are most meaningful and successful when hearing loss has directly affected the representative, their family, or friends. Just a small amount of a celebrity’s time could produce big results for hearing loss research and awareness. Please email editor@hhf.org with your ideas, and thank you.
photo credit: timothy hiatt/getty images
WHO DO YOU KNOW?
A seamless connection to life - all they have to do is listen. Give your child access to the latest in hearing technology with the Nucleus® 7 Sound Processor – the industry’s first and only Made for iPhone cochlear implant sound processor.1 Designed specifically for the Nucleus 7 Sound Processor, the Nucleus Smart App allows you to control, monitor and troubleshoot your child’s hearing from the palm of your hand. You can check device use information and even find a lost sound processor.
®
Find a Hearing Implant Specialist near you: Call: 800 354 1731 Visit: www.IWantYouToHear.com 1. Apple Inc. Use Made for iPhone hearing aids [Internet]. Apple support. 2017 [cited 24 February 2017]. Available from: https://support.apple. com/en-au/HT201466. 2. Cochlear Limited. D1190805. CP1000 Processor Size Comparison. 2017, Mar; Data on file. ©Cochlear Limited 2017. All rights reserved. Trademarks and registered trademarks are the property of Cochlear Limited. The names of actual companies and products mentioned herein may be the trademarks of their respective owners.
©2017. Apple, the Apple logo, iPhone, iPad and iPod touch are trademarks of Apple Inc., registered in the U.S. and other countries. The Nucleus Smart App is compatible with iPhone 5 (or later) and iPod 6th generation devices (or later) running iOS 10.0 or later. The Nucleus 7 Sound Processor is compatible with iPhone 8 Plus, iPhone 8, iPhone 7 Plus, iPhone 7, iPhone 6s Plus, iPhone 6s, iPhone 6 Plus, iPhone 6, iPhone SE, iPhone 5s, iPhone 5c, iPhone 5, iPad Pro (12.9-inch), iPad Pro (9.7-inch), iPad Air 2, iPad Air, iPad mini 4, iPad mini 3, iPad mini 2, iPad mini, iPad (4th generation) and iPod touch (6th generation) using iOS 10.0 or later. Apple, the Apple logo, FaceTime, Made for iPad logo, Made for iPhone logo, Made for iPod logo, iPhone, iPad Pro, iPad Air, iPad mini, iPad and iPod touch are trademarks of Apple Inc., registered in the U.S. and other countries. App Store is a service mark of Apple Inc., registered in the U.S. and other countries. Information accurate as of November, 2017
CAM-MK-PR-335 ISS1 NOV17
These candid shots of Frank Barnes III show him with his family, with fellow scholarship earners, and on college graduation day.
HEARING LOSS IS MY
SUPERPOWER By Frank Barnes III
A recent college graduate who wears a cochlear implant embraces his identity, turning “loss” into “life.” teen angst may be a rite of passage for everyone, but for me it was amplified, if you’ll pardon the pun. Despite receiving a cochlear implant at age 22 months, and being mainstreamed into my local public school district from kindergarten, by late middle school into high school I had become bitter and resentful about my dependence on hearing technology. I saw it as a burden. 8
hearing health
hhf.org
Angry and frustrated, I felt selfconscious about the external sound processor on my head, believing it was all that people knew and judged about me. By wearing a hearing assistive device, I thought that I was broadcasting, “I need assistance.” I felt incompetent and incapable, and to show that I didn’t need it, I didn’t wear it to my eighth grade graduation party and kept removing it during
freshman year of high school. I felt like not leaning into the hearing loss was a better choice for me. This meant I also had no interest in actively seeking out the hearing loss community, and instead passively rejected it, not out of any sense of malice but just because it didn’t feel like somewhere I needed to be. I consistently resisted any nudges from my parents to connect with people
managing hearing loss
with hearing loss who also wore cochlear implants. It may not surprise you to hear that this only sunk me lower, affecting not only my self-esteem but also what had been my high honors/academic excellence, athletic performance, and social relationships.
Age 22 Months
I have a profound hearing loss in both ears, which resulted from bacterial meningitis. My parents first noticed my hearing loss when I was 18 months old. At age 22 months I received a cochlear implant in my right ear. That it was a mere four-month window between the first signs and diagnosis of my hearing loss until implantation is a remarkable tribute to the commitment and efforts of my parents and the professionals all focused on finding the best solution for me and my family. My surgeon was the late John Niparko, M.D., of Johns Hopkins University, a true leader in the field. At the time in 1997 unilateral implantation was the protocol; I don’t use anything in my left ear. As a toddler, I attended Summit Speech School in New Providence, New Jersey, to develop my speech, auditory, and social skills, and was able to be mainstreamed into the local public schools starting in kindergarten. I was sent to school with a boxy FM receiver that I had to use throughout the day in order to function with my typical-hearing classmates and teachers. It’s a big responsibility for a kid, from age 6 and up, already struggling to pay attention to the teacher and socialize with other kids, to also have to change an FM box’s batteries and make sure it doesn’t break or get wet. Over time, I resented having to use it and just stopped in ninth grade—not because I was bullied but because I felt like I didn’t need it.
It was during this period of selfisolation from the hearing loss and cochlear implant community when an invitation for a reunion at Summit arrived. Of course I did not want to attend. But at the prodding of my parents, I did go. And that’s where and when I had my epiphany. Back at Summit, I found myself surrounded by other alumni—all of us now teens and young adults—who shared their stories of living full lives. Listening to them speak, I saw they were each succeeding in school and prospering in the world—while wearing the same hearing devices that I wore. It was an eye-opening experience, one that planted the seed of self acceptance that would slowly blossom to change everything for me. Hearing their experiences, I realized, all of a sudden, that my hearing condition in fact gave me a foundation to achieve any goal and to become successful despite the loss of one of my senses. Everyone in that room reminded me of where I have been, and how we all have similar conditions and struggles. I saw the staff, who to this day are still there teaching and educating and loving and supporting—and the positive effects this has had on all of the alumni. I realized I had distanced myself from the very people, teachers and students alike, who made me who I am today.
Age 22 Years
During college at Stony Brook University in New York, I did an academic year “abroad”—I was not overseas physically but “traveled” emotionally. I attended California State University, Northridge, and developed friendships with D/ deaf students, which helped me gain confidence about wearing my external sound processor in new environments. I met people whose experiences nearly mirrored mine, which made me feel empowered and a part of the community. I also took classes in D/deaf studies: American Sign Language and the hearing sciences (audiology coursework). When I learned about the anatomical framework of the ear/ body relationship, I had a newfound appreciation for the astonishing technological capability of cochlear implants and profound work of audiologists and hearing specialists. I graduated last spring with a degree in the health sciences, and landed a dream job in the field of immersive technologies, or virtual reality. My company crafts shared VR environments that are visualization and simulation experiences. I wear many hats at the company, working in production, delivery, marketing, and business development, and on project management teams. The immersive experience is a balance of the visual and the auditory.
I realized, all of a sudden, that my hearing condition in fact gave me a foundation to achieve any goal and to become successful despite the loss of one of my senses.
a publication of hearing health foundation
spring 2019
9
managing hearing loss
hearing health foundat i o n
Given my hearing loss, the visual energy that I get from working in 360° VR media has provided some sensory relief! While the case studies that I’ve reviewed have not been directly related to disabilities, the company’s technology actively transforms emotive storytelling media into greater awareness and empathy, making it a remarkable fit for delivering impactful stories of struggle and triumph. More than during any other point in my life, I became fully connected to the hearing loss community on the journey toward embracing my hearing loss. Advanced Bionics, the maker of my cochlear implant and Harmony behind-the-ear processor, invited me to share my experiences in New York City and then speak at their headquarters in California. At a Bionic Ear Association meeting in New Jersey, with other CI recipients and their families, I felt grateful to be able to relay words of calm and hope
Frank with his younger sister Adrienne in Luxor, Egypt.
to parents uncertain about post-procedure changes for their child and family. I have given speeches at, and recently became a trustee of, the Hearing Loss Association of America (HLAA)’s New Jersey chapter, through which I had earned a scholarship in high school. I joined the HLAA’s Walk4Hearing fundraising event and met with legislators in Trenton, New Jersey’s capital, to be present for the Assembly Committee on Education, Science, and Technology because they were voting on Bill 1896, the Deaf Student’s Bill of Rights. The many facets of hearing loss—education, advocacy, empathy, awareness—all have become priorities.
Knowing When You Need Support
It’s crazy that I used to think I could succeed without the hearing loss community. They have my back and are forever my tribe. Having a community means you will work together to be your best self for one another. My parents knew how to ask for help, but it took me a little
longer to realize the importance of being vulnerable and asking for assistance—and then being able to pay it forward by helping others. In 5th grade, when I was about 10, I was playing soccer toward the end of the day, with the daylight waning, when the unthinkable happened: I lost my headpiece. No processor, no hearing. I was in the middle of the field, trying to figure out what to do, feeling frustrated and anxious. My soccer coach came over and asked, “What happened?” I read his lips to know what he was asking, and he explained that the team had to ask more questions to help me find it: “What does it look like? If you don’t find it, what will you do? And, how are you?” Which I felt like was a weird question because they wanted to know if I was upset—and I said, yes! But what they said to me next was, “What can we do to make you feel better?” I really appreciated that they didn’t say “you should” or “you’d better”—they weren’t saying hearing loss was a barrier. It was more that they were saying how can we make you feel better, as a person. We stood in a long line horizontally to cover the field, and slowly stepped across the dirt together, scanning the ground. Amazingly, we found it! I had told myself that if I didn’t find it, it would be okay. But everyone else said, “No, we will find this! This is a part of who you are, this is what you need, we’re here for you.” They were saying to me that this is a part of your identity and let’s make sure you go home, whole. The team came together for me.
In Turn, Helping Others
Something I had not paid any attention to as a kid is the behind-thescenes work, the village of hearing healthcare professionals and other experts who work together to create the churning machine that says, “Here are the resources, here are the services 10
hearing health
hhf.org
managing hearing loss
Some of My Favorite Work-Life Hacks
I am grateful for the advances in technology that have allowed me to work efficiently. I’ve communicated with my colleagues and established how using instant messaging and video chats instead of phone calls works better for me. Messaging makes it simple to reach me around the office and elsewhere with text updates, and I appreciate the transcripts so that I can read, save, and understand everything (it minimizes my asking people to repeat what they said). This is also helpful as the company has international colleagues and clients and accents can be a challenge. Video chats allow me to read lips and facial expressions. Products like the Phonak Roger Pen and InnoCaption also are great helps. During lunch with the Advanced
Bionics team in California, I met with staff and a person new to wearing a cochlear implant. The pen-size wireless microphone was very useful placed on the large conference table to capture people’s voices as they chatted or even while getting up to get food. The device is awesome for isolating speech in a room. InnoCaption is a downloadable smartphone app, offering mobile real-time captioning provided by live stenographers. Since I primarily use my cell phone instead of the desk phone for work, the portable convenience and ability to save transcripts of the conversation is a huge plus. —F.B.
When I learned about the anatomical framework of the ear/body relationship, I had a newfound appreciation for the astonishing technological capability of cochlear implants and profound work of audiologists and hearing specialists. so that these kids can succeed.” I can’t overstate the value of Facebook groups that keep me connected to the community of cochlear implant users, people who have upcoming surgeries or family or friends who do. Get connected through online communities, word of mouth, or introductions by your audiologist or CI manufacturer. True, I say this like it’s super-easy to send a message to a complete stranger! But I am highly confident that any person with a new diagnosis of hearing loss will find an outpouring of support and friendship from these connections, and will be uplifted and less unnerved after speaking, meeting, and bonding with the vibrant, full-of-life people across the hearing loss spectrum. I thoroughly enjoy being a working professional, advocate, and public speaker. In speeches I’ve made to the hearing loss community, I am candid
about how I had not realized the value of their community, how I did not want to accept being different. Often people react with surprise or even dismay, but I usually see a few people who are nodding in agreement that we need to share how there are daily struggles and doubts, and that not everything is easy or cheery all the time. Our journeys must take a measure of self-acceptance about being different, whether we use a cochlear implant, hearing aid, or sign language. Being different from the hearing society is the best thing that I’ve ever experienced. From the vantage point of my advanced age of 22, I can now see that in your tweens and teens you want to just be like everyone else. It is not until later that you realize that being different, that standing out, is in fact great! My hearing loss is my superpower..
Frank Barnes III lives in New Jersey. He appeared in Hearing Health Foundation’s Faces of Hearing Loss campaign, at hhf.org/faces.
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
spring 2019
11
managing hearing loss
hearing health foundat i o n
WHAT PEOPLE WITH HEARING LOSS WANT YOU TO KNOW By Lisa Giles
i was born in 1985 but not diagnosed with a moderate to severe sensorineural hearing loss until 2005, when I was 19. My family knew I had a hearing loss but we were all in denial. I really struggled socially as well as academically and as a result worked very hard, constantly asking for extra credit and taking AP classes to earn a 4.12 GPA in high school (out of 4.0). I was accepted into the U.S. Coast Guard Academy but was discharged after three and a half years for hearing loss. It was only then when I got my first pair of hearing aids. I write this to help people I encounter—whether family, friends, or passing acquaintances—to better understand my daily challenges and hearing loss in general. I hope this will inspire others to become more mindful about how they interact with another person who lives with a diminished sense of hearing. Lisa Giles with her family.
Here are the things I wish you knew about me and my hearing loss. Hearing aids do not necessarily equal perfect hearing. While my hearing aids help, it is not the same
12
hearing health
hhf.org
as perfect, typical hearing, and I still struggle to make out words and sentences. I have learned when it is appropriate to smile, nod, or laugh during a conversation, and how to just roll with it so I am not constantly interrupting the flow. Like most people, I want to connect. But in group settings, I miss a lot of what is said. This makes it difficult to connect with others, and I realize I often resort to talking about myself because I have more control over what I can hear. Please know I desperately want to know about you and do not mean to keep the conversation one-sided. My brain processes words more slowly than yours. For example, if I only hear four words in a seven-word sentence, my brain must work on overdrive to figure out the missing elements and construct a sentence that is comprehensible. This takes time and also affects my participation. I need to take hearing breaks and rest. The effort it takes to understand what is being said, especially in social settings, is not unlike using a foreign
managing hearing loss
language you are not 100 percent fluent in. I sometimes sit alone to recharge, and I do not do that to be rude. Also, hanging out with you alone instead of in a group helps me hear you better. Parenting with a hearing loss is another challenge. While I can hear all the shouting and loud toys, I have trouble hearing my children’s actual words—which frustrates them and leads to additional tantrums. My boys are constantly talking, and it is very difficult to read their lips or make eye contact while in the car or pushing them in a stroller. My favorite moments happen one on one, playing on a (sound-absorbing) rug, without other distractions.
I write this to help people I encounter— whether family, friends, or passing acquaintances—to better understand my daily challenges and hearing loss in general. I hope this will inspire others to become more mindful about how they interact with another person who lives with a diminished sense of hearing.
I don’t dislike your children; I just can’t hear them. Children are still developing their language skills, making it difficult for me to understand them, but I hope over time I can reciprocate childcare for other parents. And I do like to dance, if I already know the song! A lot of dancing is related to a song’s words, which I can’t fully make out. In fact, there are times I am trying to figure out if the radio station is in English or Spanish. But if I know the song and the lyrics, watch out!
How You Can Help Make Communication Easier
Before speaking, make sure you have my attention and are facing me, and please enunciate. » If you tend to speak softly, there are YouTube videos and articles that can help you speak from your diaphragm, like talking from your belly button instead of your throat. My husband was amazed at how much easier it is for me to hear him! » The acoustics of a room may make it harder for me to hear you, so I appreciate it when you suggest we move somewhere quieter. » Rolling your eyes or sighing loudly because you feel inconvenienced by being asked to repeat something has an effect— and not a good one! » In a classroom or meeting, I appreciate your sharing notes with me later, as it is hard to read lips, write, and comprehend—all at the same time. » Accents can be an extra challenge for those with hearing loss. » When telling a joke or funny anecdote, try to say the punch line loudly. Even if I’ve missed the rest, I can at least enjoy the end! » Rephrase instead of just repeating, and when spelling out a word to
»
»
help me understand, please use letter cues such as “B as in bravo, D as in delta.” Difficult hearing situations include not only noisy group settings but also quiet places like yoga classes—the instructor usually whispers to make for a calmer atmosphere, but then I can’t hear her. As a kid I remember hearing whispers during sleepovers, but that meant I could not hear, either. (When my boys are old enough, they may benefit from my not realizing they are up way past bedtime!) Thank you for noticing my focus or frustration. If you look closely you should be able to tell if I am actually hearing what is going on, or just pretending.
I Know My Hearing Loss Affects You as Well
I am aware that while it is difficult for me to have a hearing loss, it is also challenging for those around me. It is not easy to remember to speak up or differently than you normally do, and to be asked to repeat yourself, but I hope we can work together to make our relationship stronger. The world would certainly be a better place if we could, and would, listen better to one another, whether or not hearing loss is a factor. So above all, thank you for listening!
Lisa Giles lives with her family in California.
Share your story: What do you wish others knew about your hearing loss? Tell us at editor@hhf.org.
Support our research: hhf.org/donate
a publication of hearing health foundation
spring 2019
13
living with hearing loss
hearing health foundati o n
Mindfulness OV E R Ménière’s
By Anthony M. Costello
ménière’s disease initially presented itself to me 20 years ago in a violent, unfortunate manner. I was 16 attending a New England boarding school when I experienced a vestibular (balance) episode, and it changed my health and life forever. I remember vividly the vertigo that, without warning, controlled me. I remember the incredible pressure and fullness in my ears and the overwhelming sense of nausea. Realizing I could not stand I sought refuge in my bed, where the sensation of spinning intensified and I vomited profusely. The school staff could only assume I was intoxicated and took disciplinary action. As I could not yet explain or understand that my behavior was caused by Ménière’s disease, I had little recourse to justice. Faced by more unfair treatment, I left the school at the end of the academic year. For the remainder of high school, I continued to struggle with bouts of vertigo, dizziness, and imbalance. These symptoms impacted my athletic performance, my ability to concentrate on my schoolwork, and my general quality of life. It was a difficult and confusing time as, although I appeared fine on the outside, I was internally battling a miserable existence that I could neither fully understand nor control. That paradox has since defined my life. When I received a formal diagnosis, my thoughts, priorities, and routines obsessively revolved around managing my wellness. This new mindset made it difficult to relate to the life I once had or to the lives of those around me. I made great efforts to hide my symptoms and protect loved ones from the negative emotional and
Anthony M. Costello learned to manage stress— and his Ménière’s symptoms—through meditation and better understanding the effects of stress on the human mind during his psychotherapy studies.
14
hearing health
hhf.org
Ménière’s takes so much from its sufferers; it attacks their bodies, tests their spirits, and consumes their thoughts. This is why it is so important to reach out, be honest, and bring others whom you trust into your world while you are living with Ménière’s. physical effects of my disease. I made excuses to avoid social events just because of my illness. Ménière’s disease has repeatedly left me in states of hopeless despair. While it can be perceived as “strong” to persevere through one’s condition independently, I have learned this only leads to more isolation. Ménière’s takes so much from its sufferers; it attacks their bodies, tests their spirits, and consumes their thoughts. This is why it is so important to reach out, be honest, and bring others whom you trust into your world while you are living with Ménière’s. Otherwise, you deprive yourself of not only your health but the relationships you deserve. The etiology of Ménière’s disease remains scientifically disputed and I do not claim to have the answer. But I do know the condition does not respond well to stress. I’ve spent every day of my life carefully crafting my decisions and actions based on how my Ménière’s may react. In the process, I’ve come to master handling and mitigating stress. In fact, at 30 I went back to school for a master’s in psychotherapy in part to study stress and the human mind. I am now a licensed psychotherapist, a career change inspired by my conversations with newly diagnosed Ménière’s patients in the waiting room of my ear, nose, and throat doctor’s office. I have been fortunate to have had periods of relative remission with reduced vertigo. But there is a misconception that Ménière’s just comes and goes, allowing the sufferer to return to normalcy in the interim.
living with hearing loss
In reality, part of it is always there, be it the tinnitus, the difficulty hearing people in a crowded room, or the feeling the floor will start moving. There is always the uncertainty of what tomorrow will bring. Using mindfulness—a meditation technique that helps one maintain in the present without judgment— has been helpful in calming my anxiety. Mindfulness is especially useful when my tinnitus feels overwhelming, and sometimes I combine the practice with music, a white noise machine, or masking using a hearing aid. I try to live my life in a manner in which Ménière’s never wins. This disease will bring me to my knees—both literally and figuratively—but I just keep getting up. You can’t think your way out of this disease, and spending all your time in a web of negative thoughts can be as toxic to your mind as Ménière’s is to your inner ears. In my hopelessness, I try to stop my mind from plunging into the abyss and use every tool I can—making plans to see friends and family, finding glimpses of joy in the midst of darkness, or being physically active. You have to retain some control when you feel like you have none. The only gift that Ménière’s has given me is a level of introspection and awareness that I could not have attained
in 10 lifetimes. It has stripped me down to my core and forced me to explore what is truly important and made me a better person. I don’t know who I would be without this disease, but I’m positive that person could not fathom the joy or gratitude I find in a moment of health. Anthony M. Costello, LMFT, lives in Massachusetts with his family. His practice specializes in helping others with chronic illness, at costellopsychotherapy.com. To learn more about Hearing Health Foundation’s Ménière’s disease research, see menieresdisease.org. For references, see hhf.org/spring2019-references.
Share your story: How has having a hearing or balance condition shaped your career? Tell us at editor@hhf.org.
Support our research: hhf.org/donate
ADVANCING ACCESSIBILITY IN THE AUDIOLOGY PROFESSION
infographic bottom right: marjorie saavedra
By Lauren McGrath
born with a profound sensorineural hearing loss, Jessica Hoffman, Au.D., CCC-A, never believed she could become an audiologist. In fact, she didn’t consider the profession until her final year as a biopsychology undergraduate at Tufts University. By then, Hoffman was the recipient of successful hearing loss intervention and treatment for two decades. Diagnosed at 13 months, she was fitted with hearing aids by age 2, practiced speech and hearing at the New York League for the Hard of Hearing (today the Center for Hearing and Communication) until age 5, and learned American Sign Language (ASL) at age 10. Mainstreamed since preschool with daily visits from a teacher of the deaf, Hoffman received a cochlear implant in her right ear at age 14, and the left a decade later. “In college and graduate school I used a variety of classroom accommodations including ASL interpreters, CART, C-Print, notetakers, and FM systems,” she says.
a publication of hearing health foundation
spring 2019
15
living with hearing loss
hearing health foundati o n
“I take pride in helping my patients realize they are not alone with hearing loss and that technology, like my own cochlear implants, can provide immense benefits to communication,” Hoffman says. After Tufts University in Massachusetts, Hoffman worked as a lab technician at Massachusetts Eye and Ear as her interests in studying hearing began to grow. “But I wasn’t sure I would be able to perform key tasks in audiology, like speech perception tests and listening checks with patients,” she says. “Would I be able to hear what I needed to hear?” After speaking with others in the field with hearing loss, she became less apprehensive. She found mentors in Samuel Atcherson, Ph.D. (a former staff writer for this magazine), and Suzanne Yoder, Au.D., who have greatly advanced opportunities for individuals with hearing loss 16
hearing health
hhf.org
in audiology. In 2010, she received her doctor of audiology from Northwestern University in Illinois. Today, Hoffman is happy to work with both children and adults at the ENT Faculty Practice/Westchester Cochlear Implant Program in Hawthorne, New York. “I take pride in helping my patients realize that they are not alone with hearing loss and that technology, like my own cochlear implants, can provide immense benefits to communication,” she says. “I am motivated to help my patients understand that hearing loss does not define who one is and can be viewed as a gain rather than as a limitation.” Her career is not exempt from challenges. “Although I was fortunate to receive accommodations as a child and young adult, I have been disappointed by the tools that are missing in a field that serves those with hearing loss,” Hoffman says. While her workplace is very understanding, she points out it can be difficult during team meetings and in conversations with patients who speak English as a second language. “But I am grateful to have considerate colleagues who will repeat themselves as needed or offer to facilitate verbal communication with non-native English-speaking patients.” At audiology conferences, however, necessities like CART, FM systems, and/or interpreters are often lacking for professionals with hearing loss, she says. Hoffman and others with hearing loss in audiology have petitioned to encourage accessibility at such events. “I have had to take on the responsibility of finding CART vendors for conference organizers to ensure my own optimal listening experience,” she says. “Sometimes I feel brushed off by meeting leaders who seem to have a sense of doubt in my abilities and those of my colleagues with hearing loss.” Hoffman also wishes to see greater accessibility in audiology offices
nationwide, including recorded speech perception materials, captioning for videos or TV shows in the waiting room, and using email to communicate with patients instead of phone calls. She’d like all audiology staff to be well-versed in communicating with people with hearing loss and to have a strong understanding of the Americans with Disabilities Act as it pertains to hearing loss. “I also think facilities would benefit from hiring ASL interpreters or Cued Speech transliterators as needed,” says Hoffman, noting that professionals and patients alike would benefit from such accommodations. Accommodations for people with hearing loss and other disabilities in academics, public sectors, and the workforce—audiology included— should be provided without question, Hoffman says. “The self-advocacy never ends, but it has made me stronger and more confident in my own abilities,” she says. “I am proud to have a hearing loss because it has shaped me into the person I am today.” Lauren McGrath is Hearing Health Foundation’s marketing and communications director.
Share your story: How has having a hearing loss shaped your career? Tell us at editor@hhf.org.
Support our research: hhf.org/donate
advertisement
A HEARING AID THAT COMBINES EVERY TOP FEATURE WITH NO DRAWBACKS? SOUNDS MARVELOUS. in fall 2018, phonak shook up the hearing aid community when the company unveiled Marvel, the world’s first hearing technology to combine superior sound quality, universal Bluetooth® connectivity, and unparalleled ease-of-use into one single hearing solution. The reaction to Marvel, both from inside and outside the industry, has been very impressive. In just a few short months, Phonak Marvel was voted the best hearing aid of 2018 by YouTube star Cliff Olson, Au.D. It received the 2019 CES Innovation Award for Accessibility by the Consumer Electronics Association and was also named the Best Mobile Medical Device at CES by the personal technology website Slashgear. A recent survey found 95 percent of hearing care professionals (HCPs) would recommend Marvel hearing aids to their peers.* Here are some of the reasons behind the enormous success of Phonak Marvel.
“My Marvels are more than just hearing aids— they’re an experience,” says student Finn Gomez.
Clear, rich sound quality—even in very challenging environments. Marvel hearing aids are the first to sport the Phonak AutoSense OS 3.0. This technology was developed using artificial intelligence to deliver outstanding hearing performance the moment they are put on. The result is a “love at first sound” experience that scans, detects, and auto-adjusts in every environment.
Stream phone, tv, music, and more from billions of devices. The hearing aids are the world’s first to fully connect to Android™ phones (in addition to the iPhone®) and can wirelessly stream from any Bluetooth device, including smartphones, TVs, computers, and more. On-board microphones allow wearers to “talk through” their hearing aids hands-free, without needing to hold a phone up to their mouth. “To me, my Marvels are more than just hearing aids—they’re an experience,” says Finn Gomez, a 16-year-old student from Wyandotte, Michigan. “The life-changing sound clarity has helped me as a student, a musician, and a small business owner. And the ability to stream anything to both ears is astonishing. They really are a marvel!” Fully rechargeable for all-day hearing. The ability to simply recharge our personal electronic devices is a given. So, it’s no surprise that rechargeability also ranks as a top-requested feature for hearing aid wearers. Marvel hearing aids come available in a trusted lithium-ion rechargeable option that gives wearers a full day of better hearing—including streaming—on a single charge. Smart apps that enhance the hearing experience. Marvel hearing aids are compatible with a suite of smartphone apps to further enhance your hearing
experience. You can have your Marvel hearing aids fine-tuned and adjusted virtually anywhere you are. Or you can send instant feedback on how you’re hearing in various listening environments. You can also receive live transcription of phone calls right on your phone in more than 80 different languages. This fall, Phonak Marvel hearing aids will be RogerDirect–compatible. This means people who benefit from Phonak Roger technology can have the Roger signal streamed directly to their hearing aids with no extra receiver required.
To learn more about Phonak Marvel, visit TryMarvel.com. *Phonak market survey #1241, “Marvel Post Launch Research B2B,” survey conducted in Canada, Germany, and the U.S. in January 2019 (215 participants). Please contact marketinsights@phonak.com for more information.
a publication of hearing health foundation
spring 2019
17
music
h ear i n g h ealth foundation
8
Tips FOR THE New Hearing Aid User By Brad Grondahl
i am a second-generation hearing aid specialist, now retired. My father had a hearing loss, caused from noise exposure on the artillery range while serving in the U.S. Army. Initially he wore a body, or pocket-type, hearing aid with an external cord and receiver. Eventually he came to sell hearing aids himself, driving to visit prospective clients in their homes. After my father passed away, my mother helped push for the eventual passing of licensing laws for hearing aid dispensers in North Dakota. After college, I took over the business, earning licenses and certifications for dispensing hearing aids and also taking audiology coursework.
hearing loss has been untreated for years. (A 2018 Ear and Hearing study by Hearing Health Foundation board member Judy Dubno, Ph.D., and team found the average time between hearing aid candidacy and adoption is 8.9 years.) Many things may not sound as you feel they should, including your voice. But with time and effort, you can train your brain to recognize the new sounds as normal. (See “Train Your Brain to Listen,” next page.)
I share this advice I’ve gleaned after decades of dispensing the instruments:
4 Sometimes a simple dead battery
1 Entering the world of improved
hearing with amplification is not at all like being fit with new glasses for visual correction. With glasses, you put them on and instantly everything is clear. This is not generally true of hearing devices, which have to be personalized and programmed to your individual hearing ability—a process that can take several visits to your provider.
3 There is no such thing as a
“one and done” approach with hearing aids. Ongoing care and maintenance will be required, including inspecting your instruments daily when you put them on.
is the culprit if an aid doesn’t seem to function. Always try at least two batteries to be sure it is not just a dead battery.
5 Earwax can be another challenge. If earwax is blocking the sound outlet—the part of the aid that enters your ear canal—the devices may seem weak or have no amplification. Replace the wax filter or clean the outlet or earmold using a special cleaning tool.
is full of earwax-cleaning mishaps, such as, recently, a British man’s brain infection that ended up resulting from swabs!)
7 All styles of instruments have
their own set of maintenance issues, too numerous to review. If the problem is not the battery or earwax, contact your provider to help troubleshoot a problem.
8 Hearing loss patterns change over time, gradually, and your brain will again adjust to unfamiliar sounds. Retest annually and adjust your hearing aids as needed.
A licensed hearing aid dispenser in North Dakota since 1969, Brad Grondahl, BC-HIS, has served as the president of the North Dakota Hearing Aid Society and as a member of the State Examining Board for Hearing Instrument Dispensers and the State Examining Board for Audiology and Speech Language Pathology, both in North Dakota. For references, see hhf.org/spring2019-references.
2 Since hearing loss usually comes 6 Earwax in the ear canal itself will on gradually and you compensate and become accustomed to softer sounds, it can be a shock when you first use hearing devices—especially if your
18
hearing health
hhf.org
affect sound. But do not use cotton swabs, hairpins, or any other “home remedy” to clean your ear—ask your hearing provider for help. (The news
Share your story: Tell us your best hearing aid care hacks at editor@hhf.org.
family voices
Train YOUR Brain TO Listen By Katherine Bouton one of the most important things a person with hearing loss can do is to develop listening strategies. Auditory training, or auditory rehabilitation, is essentially a formal program for teaching the brain to recognize speech and other sounds that may not be as clear as they are with typical hearing. It also teaches strategies for making the most of what you hear. Auditory training teaches the brain to listen. This is especially important after getting a cochlear implant. Learning to recognize the implant’s digital signals is a little like learning a new language. And as with new languages, training and practice help. How accurately the brain processes digital signals varies from person to person. It’s not the signal itself that determines success but the way the user’s brain processes it.
illustration credit: istockphoto.com
Roots in the Military
Auditory training was first developed during World War II. Then as now, many active-duty military developed hearing loss. Hearing aids were not very good and the armed forces couldn’t afford to lose these men, so the military developed techniques to augment the hearing aids.
Auditory training was first developed during World War II. Then as now, many active-duty military developed hearing loss. Hearing aids were not very good and the armed forces couldn’t afford to lose these men, so the military developed techniques to augment the hearing aids. The focus was on speech-reading as well as auditory training. Conserving the ability to speak clearly was also a goal. Patients were taught how to use language knowledge and context to fill in the gaps. After World War II, as hearing aids improved, auditory rehab disappeared from all but a few hearing centers, including the League for the Hard of Hearing in New York (now the Center for Hearing and Communication). These days, auditory training is mandated for infants and young children receiving cochlear implants; many adult implant recipients would also benefit. Cochlear implant centers differ in their attitudes toward rehab for adults. At the cochlear implant center where I got my implant in 2009, formal rehab was offered on an as-needed basis. I was encouraged to use the at-home rehab program offered by Advanced Bionics, the manufacturer of my implant, or Neurotone’s progressive, online LACE program. Later I participated in two different formal rehab programs in person. Rehab is a way to train your brain to distinguish the sound of someone banging the lid on a metal trash can from the bark of a dog or a human shout. They actually do sound alike to the untrained brain. The neuroscientist Kelly Tremblay, Ph.D., of the University of Washington, advocates for all varieties of rehab. There is no one-size-fits-all. Even passively listening to sound changes brain activity, including listening to recorded books.
Helpful for Older Adults
Many studies have shown that aging affects the brain in a way that distorts and disrupts the way sound is encoded in the brain. This is true even when the sound is presented in a quiet
managing hearing loss
hearing health foundat i o n
Get in Training
Angel Sound: This PC-based program offers an interactive auditory training and hearing assessment program. See angelsound.tigerspeech.com. clEAR (customized learning: Exercises for Aural Rehabilitation): Created by 1987 Emerging Research Grants recipient Nancy Tye-Murray, Ph.D., clEAR includes exercises for those concerned about hearing loss and cognitive decline. See clearworks4ears.com.
environment, and when the audiogram suggests normal hearing. It is more significant when there is background noise. A study in the Journal of Neurophysiology discussed this issue. Researchers Samira Anderson, Ph.D. (a 2014 Emerging Research Grants recipient) and colleagues at the University of Maryland compared the brains of adults ages 61 to 73 with those ages 18 to 27. What they found was that the brain, as it ages, becomes worse at processing speech sounds when other sounds are present at the same time. Older adults scored measurably worse on speech understanding in noisy environments than younger adults. Both groups had normal hearing as measured by an audiogram as well as speech-in-noise tests. So what accounted for the disparity in speech understanding? The answer, alas, may lie in the aging brain. Using two different kinds of brain scans, the researchers studied the midbrain area, which processes basic sound in most vertebrates, and the cortex, which has areas dedicated to speech processing in humans. In older adults, the cortex responded more slowly in processing speech regardless of whether there was secondary noise.
New Respect for Auditory Training
As the world of hearing aids changes, many hope that audiologists will take on a greater role in auditory rehabilitation. Under the current business model, an audiologist’s income is derived primarily from the sale of hearing aids; many audiologists can’t afford to provide rehab, which is not covered by most insurance. Some hearing health professionals feel that auditory rehab can make the difference between hearing well with aided hearing or not. If you’re new to hearing aids or to a cochlear implant, auditory training will help you adjust and ultimately “hear” better. 20
hearing health
hhf.org
Cochlear: This implant maker’s Communication Corner is for all ages and in Spanish to improve listening, encourage conversations, and instill confidence. See cochlear.com/us/ communication-corner. LACE (Listening and Communication Enhancement): Learn listening and communication strategies to help compensate when hearing is inadequate. See lacelistening.com. MED-EL: Get rehabilitation tools from this implant maker that include tips for home, work, and school. See medel.com/support/rehabilitation.
It will help with distinguishing the difficult consonants and vowels. It will train your brain to comprehend faster. And since trying to hear is fatiguing, it may give you more listening “stamina.” Remember, it’s not your hearing— or your hearing aid or implant— that changes. It’s your brain. With auditory training, the result can be better, faster, more accurate hearing.
This is excerpted from Katherine Bouton’s book “Smart Hearing“ (October 2018). Former New York Times editor Bouton is the president of the New York City Chapter of the Hearing Loss Association of America (HLAA) and a member of the national Board of Trustees of HLAA, and the author of two prior books on hearing loss: “Shouting Won’t Help” and “Living Better With Hearing Loss.” For more, see katherinebouton.com. For references, see hhf.org/spring2019-references.
Share your story: Tell us your experience with auditory training at editor@hhf.org.
Support our research: hhf.org/donate
illustration credit: istockphoto.com
Advanced Bionics: The cochlear implant maker’s Listening Room supports the development of speech, language, and listening skills for all ages and in Spanish. See thelisteningroom.com.
9:41 AM
AT&T
1
ABC
2
DEF
5
JKL
6
MNO
8
WXYZ
4
GHI
7
TUV
PQRS
100%
3
9
0
Favorites
Call Log
Contacts
Dial
Voicemail
Irene Goodman’s CRITIQUES for CHARITY Renowned literary agent Irene Goodman does critiques of partial manuscripts, with all net proceeds going to Hearing Health Foundation and other charities.* This is your chance to get professional feedback from an agent who has built bestselling careers. It is also a wonderful opportunity to present the budding writer in your life with the perfect gift. Critique: The first 50 pages, or the first 15,000 words. Genres: Women’s fiction, thrillers, romance, mysteries, historical fiction, middle grade, and young adult fiction. Critique response time: One month at most. *The charity being benefited is listed next to “your bid supports.” We appreciate your making sure Hearing Health Foundation appears the week you are bidding.
For more information and to make a bid, please visit irenegoodman.com/charity-critiques.
music
h ear i n g h ealth foundation
Marty Garcia adjusts Les Paul’s hearing enhancers prior to Les’s performance at the Iridium Jazz Club in New York City.
THE MAN WHO
Chased Sound
WORE HEARING AIDS By Sue Baker
22
hearing health
hhf.org
Ear Monitors to his “regular” hearing aids. Many fans left before Les could connect with them. Marty’s response was to create a hearing enhancer that Les could wear while performing as well as for everyday use. Les often joked about his hearing aids. If a battery went out while he was performing, Les would tell his audience not to get their hearing aids at a hardware store. He and Marty also understood that people hear not just with their ears, but with their brains. Together they created a way for the man who chased sound to be able to continue to enjoy and perform it.
Sue Baker is the program director for the Les Paul Foundation, and thanks Marty Garcia, Christopher Lentz, and Arlene Palmer for help with this article. For more, see lespaulfoundation.org. Hearing Health Foundation (HHF) is grateful to the Les Paul Foundation for its commitment to funding tinnitus research through HHF’s Emerging Research Grants program. For more, see hhf.org/erg.
Share your story: Are you a musician with a hearing condition? Tell us your tips at editor@hhf.org.
Support our research: hhf.org/donate
photo credit: christopher lentz/les paul foundation
the inventor who changed music and the guitar player who had a room full of music awards wore hearing aids. Legendary musician Les Paul spent his whole life looking for the perfect sound. Ironically, for a good portion of his life he had to pursue his passion for sound while wearing hearing aids. Les’s hearing loss started in 1969 when a friend playfully hit him over his right ear, causing his eardrum to break. Surgery to repair the damage had its own complications and Les was left with compromised hearing. A few years later another friend did the same thing to Les’s other ear with the same devastating results. Les disliked how his initial hearing aids made voices sound “tinny” and higher pitched than normal and began to look for a solution. He explored options with numerous audio and hearing aid companies. In the mid-1990s Les connected with Marty Garcia who over time became his go-to audio friend, helping to improve his hearing aids. The founder of audio and earphone company Future Sonics, Marty created the customized Ear Monitors brand to help entertainers reduce vocal and hearing fatigue. Les tried Ear Monitors during performances and said the devices’ special transducers took his hearing back 35-plus years. Each Monday night Les performed two sets at New York City’s Iridium Jazz Club. For two hours before the first performance, he did a sound check, analyzing every component. Les had the settings on all the sound equipment photographed so that each week he could tinker with them and study the effects of his changes. After the shows, Les wanted to be available to sign autographs and meet his audience. To his frustration, he found that it took him too long to change from his onstage
Accuracy Matters Getting details right over the phone is important. People with hearing loss can trust CapTel速 for accurate, word-for-word captions of everything their caller says.
CapTel 2400i includes Bluetooth速 connectivity and Speakerphone.
Traditional Model CapTel 840i
Low Vision Model CapTel 880i
www.CapTel.com l 1-800-233-9130 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. No cost is passed on to the CapTel user for using the service. CapTel captioning service is intended exclusively for individuals with hearing loss. CapTel速 is a registered trademark of Ultratec, Inc. The Bluetooth速 word mark and logos are registered trademarks owned by Bluetooth SIG, Inc. (v2.5 7-18)
family voices
h earing health foundation
Miracle MOMENTS
Getting cochlear implants for their infant daughter opens a world of communication for the entire family. By Casey Dandrea virginia toddler charlotte (charly)’s first experiences with sound using hearing aids captivated millions. The video, taken when Charly was an infant, aired on local TV networks and went viral on the internet. Charly’s mother, Christy Keane, is heard fighting back tears in response to her daughter’s expressions. “I’ve never seen that face before. You’re going to make me cry,” she says as Charly displays a smile and her
Christy Keane shares Charly’s experiences with cochlear implants on Instagram.
eyes light up. For the first time, Charly was visibly reacting to her mother’s voice. Charly’s one-minute viral video debut was more than heartwarming—it was educational. It helps underscore how with access to technology, a child born with hearing loss can learn to respond and communicate like any child with typical hearing. Keane’s understanding of profound hearing loss before Charly’s diagnosis was minimal. “I had never met a deaf person in my life and had absolutely no knowledge of hearing loss or intervention options,” she says. Following Charly’s birth, she immediately surrounded herself and family with a team of supportive specialists to learn more about pediatric hearing loss and options for treatment. Charly was diagnosed with a bilateral profound sensorineural hearing loss at age 1 month after failing all three hearing tests as a newborn. She was fitted with hearing aids at 2 months old, which she wore for eight months prior to her cochlear implant (CI) surgery with the Cochlear Nucleus N7 in June 2018.
24
hearing health
hhf.org
Keane and her husband chose cochlear implantation for their daughter because they wanted to give Charly the best access to speech and sound for her needs. Children who receive early intervention for hearing loss reduce their risk of falling behind in speech and language acquisition, academic achievement, and social and emotional development. The video’s reception inspired Keane to chronicle her daughter’s progress on Instagram. Now with more than 100,000 followers, she is thankful to have touched so many individuals all over the world. Her #miraclemomentsoftheday posts, in which she records Charly’s reactions to her daily CI activation (and previously her hearing aids) are especially popular. Big sister Birdie and soon-to-come baby brother also are featured in the feed. Keane is proud to have created a forum that provides encouragement to families with children with hearing loss. “Every day I receive a message from a parent of a newly diagnosed child and I can remember the exact emotions they are experiencing,” she says. “I love to be an example of how fulfilling it is to be a parent-advocate and how quickly your perspective changes as you learn more about hearing loss and language options.” She hopes to change perceptions of hearing loss offline, too, in part by volunteering with Virginia Hands & Voices, an organization that helps families of children with hearing loss. Ultimately, Keane wants families with children with hearing loss to come together to celebrate their achievements and share their experiences. HHF intern Casey Dandrea studies journalism at Long Island University Brooklyn. For more on Charly’s progress, see instagram.com/theblushingbluebird.
Share your story: Tell us your cochlear implant journey at editor@hhf.org.
family voices
Being There for My Brother By Joe Mussomeli
Joe Mussomeli (right) with his brother Alex.
my brother alex was born with severe hearing loss, the first in our family. His diagnosis marked the start of a very stressful period for all of us. It took some time for my mother to process his hearing loss, but our parents quickly recognized the importance of helping Alex get access to sound as soon as possible. He got hearing aids before he was 3 months old, and our journey began. I don’t remember too many of the details, as I was only 2 years old at the time, but I was told that my parents spent many nights with Alex, practicing the sounds of letters, and making sure he could distinguish and pronounce each of them correctly. What I do remember is initially feeling left out. At first, all of my parents’ time was occupied by Alex. This is understandable to me now, as a teen, but as a little kid it wasn’t. My parents picked up on my feelings and began to make sure I felt included. They taught me how to practice sounds with Alex, how to change his hearing aid batteries, and most importantly, how to be there for him when he needed me most. Today, whenever I think of my brother, I rarely think about his hearing loss. I think of him as just Alex. I’ve almost always treated him the way any other older brother would treat his younger brother. We roughhouse, tease each other, laugh together (mostly at each other), and most importantly we care for each other. I barely notice the cochlear implant on his right ear, or the hearing aid on his left. To me, they’re just ears, just like Alex is just Alex. But there are certain times when his hearing loss is very evident to me, like when he takes off his hearing aid and implant to go swimming (before he had a waterproof processor cover) or at bedtime, and just can’t hear our voices. These small daily moments remind me how lucky I am—how I’m able to hear our mom or dad without having to put my processor or hearing aid back on. This doesn’t make me pity Alex; it makes me admire him. I admire his strength and how he doesn’t let a hearing loss bring him down. I wouldn’t be as close to Alex as I am today if we never worked together to help him manage his hearing loss. Our family’s experience has shown me that if you can overcome the challenges that life throws at you, you can do anything.
HHF Giving
High school student Joe Mussomeli lives with his family in Connecticut. His brother Alex has been featured in Hearing Health magazine and has sold his artwork to raise funds for HHF, and he is a participant in HHF’s “Faces of Hearing Loss” campaign, at hhf.org/faces, and in HHF’s short video “Hearing Hope,” at hhf.org/video.
Support our research: hhf.org/donate
a publication of hearing health foundation
spring 2019
25
meet the donor
hearing health foundation
Helping Myself TO HELP OTHERS Advancements in hearing aid and assistive technology spell a bright future for this music enthusiast and medical student. By Ryan W. Brown my hearing loss was noticed around the time I started kindergarten. I started asking “what?” a lot, and I didn’t always respond to those around me. Some of my teachers thought I was ignoring them or missing instructions on purpose. At home I began to sit closer to the TV with the volume up high. Subtle behaviors like this in a child can sometimes go undetected, much like those of a student who struggles because he can’t read the board in the classroom. Thankfully, a teacher finally noticed that I was reading her lips and recommended that I see a speech-language pathologist. HHF Giving Eventually, I was referred to an audiologist, Sheila Klein, Au.D., who diagnosed me
with moderate to severe bilateral hearing loss, most likely caused by recurrent ear infections when I was younger. My mom distinctly remembers leaving Dr. Klein’s office with my new hearing aids. After we walked out the door into the parking lot, I took a few steps, stopped and looked around, then walked a few more. It was the first time I’d heard my jacket make a whoosh sound as I moved. I spent a lot of time that day hearing new things I had never noticed before. Soon after that, Dr. Klein came to visit my elementary school. She explained to my classmates what it means to have a hearing loss and why I needed hearing aids. I really appreciate this gesture because it encouraged my classmates to be
more accepting of someone who was different than them. One of my favorite hobbies is music, and hearing aids have been instrumental in helping me understand and practice it. I enjoy creating electronic songs using a production software called Ableton, which provides a means of arranging music as well as a visual representation of sound waves. This tool is crucial because there are certain frequencies I simply cannot hear, and people without hearing loss may hear harsh noises that disrupt the sound I was aiming for. This feature allows me to filter out those sounds visually. I am in my third year of medical school, pursuing a career in emergency medicine. My aspiration
JOIN OUR
Inner Ear Circle
inner ear circle members are monthly donors who can be confident that 100 percent of their contributions allow HHF’s research programs to thrive—because reliable scientific outcomes require time and stability. In addition to improving the lives of individuals with hearing and balance conditions through innovative, groundbreaking science, our Inner Ear Circle is helping to ensure HHF researchers have the resources needed to sustain their work without interruption. “Research is not effective when it happens in fits and starts. Consistency is necessary to find safe and effective ways to promote lasting advancements for hearing in humans,” says Hearing Restoration Project scientist Jennifer S. Stone, Ph.D., of the University of Washington School of Medicine.
26
hearing health
hhf.org
As proof of our fiscal responsibility, HHF continues to earn top ratings with all charity watchdogs, and for the third year in a row we were named on the Consumer Reports list of “Best Charities for Your Donation.”
A monthly donation translates to:
• • • •
Sustained support of life-changing research Knowing your contribution consistently goes to your area of interest Reduced administrative efforts and cost Savings on postage and paper with fewer mailings printed
Please visit hhf.org/monthly to learn more, and thank you for your support.
meet the donor
I took a few steps into the parking lot, stopped and looked around, then walked a few more. It was the first time I’d heard my jacket make a whoosh sound as I moved.
to work in medicine came about during junior year of high school, when I sought help from my local Vocational Rehabilitation (VR) office. VR counselors provide career
assistance to people with disabilities. Medicine requires the use of a stethoscope, so the VR counselors found an electronic stethoscope and headphones I could fit over my hearing aids. The headphones can be confusing for patients sometimes, but they understand once I start listening to their heart and lungs. I’ve really enjoyed learning about the art and science of medicine. Problem solving and building trustworthy relationships with patients are crucial skills I will continue to develop for the rest of my life. While my hearing aids have been my mainstay, communication is still difficult at times even with them in. I have learned to be patient and understand that not everyone knows what it’s like to have hearing loss or wear devices like hearing aids. Sometimes there is a need for others to speak up or face me so that I
can read their lips, especially in crowded places. Having to overcome challenges like this has instilled an important trait that is essential in medicine: empathy.
Ryan W. Brown is a student at the University of North Dakota School of Medicine.
Share your story: Tell us your hearing loss journey at editor@hhf.org.
Support our research: hhf.org/donate
Why We Give
Hearing Health Foundation supporter Lori Brown with her son Ryan, who is studying medicine.
i first learned about hearing health foundation (HHF) from Ryan’s audiologist at Trinity Health in Minot, North Dakota, and we liked its mission to fund hearing research, as research leads to solutions. Ryan was diagnosed when he was about 6 years old. Not knowing if his hearing loss would continue to get worse was scary. Having hearing aids helped Ryan do well in school, and advancements in technology have allowed him to use a stethoscope and pursue his dream of becoming a doctor. A cure for hearing loss would be terrific, and at the same time advancements that allow patients to live as typical a life as possible should be funded. This is why I think research and the information HHF provides are both so important. —Lori Brown, Ryan’s mom
a publication of hearing health foundation
spring 2019
27
travel
h ear i n g h ealth foundation
H AV E LOOP WILL T RAV EL By Stephen O. Frazier
Travelers with hearing loss should look for the international hearing loop symbol, which is usually blue in the U.S. but may be maroon or green or some other color abroad. 28
hearing health
hhf.org
I’m 80 years old with a hearing loss. What I’ve learned through my travels is that I need more than just my hearing aids. in new york city not long ago, i expected to have a problem when I approached the fare booth to buy a subway pass. I knew the roar of trains constantly passing through makes it difficult for someone with typical hearing to communicate, let alone someone like me with a severe hearing loss. But when I noticed a sign for hearing loops, a blue symbol with an ear and a “T,” I turned off my hearing aids’ mics and turned on their telecoils. To my surprise and delight, I heard quite clearly the attendant’s voice, just as a train was passing through underneath. Telecoils, or T-coils, are tiny coils of wire in my hearing aids that receive sound from the electromagnetic signal from a hearing loop. A hearing loop, in turn, is a wire that surrounds a defined area and is connected to a sound source such as a public address system. It emits a signal that carries the sound from its electronic source to the T-coils in my hearing aids, which are already optimized for my hearing ability. It’s as simple as flipping a switch to gain access to sound in any looped setting. Beyond New York City, hearing loops are available around the country in auditoriums, train stations, airports, places of worship, theaters, and more. For a full and growing list, see time2loopamerica.com and aldlocator.com. The technology also works with devices called neck loops—personal loops that replace the headsets used in assistive listening situations (such as a museum audio guide, in-flight entertainment, or a live theater production) and send sound to the telecoils of hearing aids. Travelers with hearing loss should look for the international hearing loop symbol, which is usually blue in the U.S. but may be maroon or green or some other color abroad. If you aren’t sure whether your hearing aid has T-coils, talk to your hearing healthcare provider. Keep in mind the smallest-size hearing aids sometimes do not come with telecoils.
travel
Here are some of my other travel tips, as a lifelong travel enthusiast: » If you have a Pocket Talker or some other personal sound amplifier, take it along with a neck loop to hear over cabin noise in flight.
» Download a speech-to-text app like Live Caption
or InnoCaption to your cell phone to let you read what’s said to you by others.
» Download a captioned phone app such as the one
from Hamilton CapTel so you will have captioned phone access during your trip, for both placing and receiving calls.
» Pack extra hearing aid batteries and, if you have one, an extra hearing aid for the trip.
» If your hearing aids are rechargeable, be sure to
take the charger and put it in your carry-on in case your checked luggage doesn’t arrive with you.
so staff can be instructed to personally inform you of any emergency, e.g., fire alarms. If you feel you need it, ask for an Americans with Disabilities Act (ADA) deaf/hard-of-hearing kit from the hotel; they are required to have them available. These kits include such items as a door knock sensor, telephone handset amplifier, telephone ringer signaler, visual/audio smoke detector, and a special alarm clock. Not all hotels are in compliance with the ADA so check ahead on the availability of a kit.
» And most of all, relax and enjoy your travels!
» Take a pen and notepad with you to communicate with ticket/gate agents if needed.
» Download the SoundPrint app for its Quiet List that
identifies restaurants and bars in U.S. cities that are less noisy and more conducive to conversation. (See the following page for more information.)
» Print your ticket and boarding pass at home, or send it to your phone.
» Carry a Transportation Security Administration
(TSA) Notification Card about your hearing condition to hand to the TSA agent when you go through airport security. (Get one at tsa.gov.)
Stephen O. Frazier is a hearing loss support specialist. The former Hearing Loss Association of America (HLAA) chapter coordinator for New Mexico, he is now the director of Loop New Mexico. He also serves as the co-chair of the Committee for Communication Access in New Mexico and on the national HLAA Hearing Loop Steering Committee. For more, see hearingloop.org and loopnm.com.
» If available, take a seat near the information counter at the gate and alert the attendant to your hearing loss. Request that you be notified of any emergency or other announcements. Often the agent will add you to the group allowed to preboard.
Share your story: Tell us your travel tips at editor@hhf.org.
» As you board the aircraft, alert the flight
attendant(s) to your hearing loss so they will know to pay attention to your communication needs, and read the safety instructions in the pocket in front of you—you may have difficulty hearing verbal directions from the flight crew.
Support our research: hhf.org/donate
» Once you reach your destination, if staying in a
hotel, alert the desk clerk to your hearing difficulty
a publication of hearing health foundation
spring 2019
29
technology
h ear i n g health foundation
Gregory Scott says the idea for SoundPrint came from wanting to be able to easily chat with friends while out.
TELL ME WHERE IT’S Quiet A free app aggregates crowd-sourced information about volume levels in restaurants and bars. By Gregory Scott
1/3 nearly
of restaurants and
2/3
of bars
in New York City
potentially endanger
the hearing health of patrons and employees, measured at an average 81 dBA by users of the SoundPrint app.
30
hearing health
hhf.org
as someone with a severe bilateral hearing loss, i am sensitive to loud venues and have often struggled to hear companions in noisy bars and restaurants. Far too often I’ve sat with friends unable to fully follow the conversation and feeling completely lost. Before going out I’d Google “most quiet restaurants” in a given neighborhood in New York City, where I live, but my research was generally fruitless. A space classified as “quiet” often would be thrumming with loud music or chatter when I arrived to meet family, friends, or colleagues. It’s hardly a good setting to talk in or get to know someone. Contemporary restaurant design tends to be minimalistic with few soundabsorbing materials like carpeting or curtains. The result is poor acoustics and discomfort for customers—for everyone, regardless of hearing ability. After years of straining to hear while out with friends, I became determined to find a way to identify the quieter spots, while incentivizing venue managers to reduce the volume. I knew I couldn’t do it by myself. My solution was to create a free iPhone app called SoundPrint that leverages the power of crowd-sourcing. Using the app’s decibel meter and the smartphone’s microphone, the noise level of any venue can be captured and sent to a database. Every submission enriches the database, and the measurements are an effective way to alert both managers and potential patrons about how loud it is—like a Yelp for noise. We launched a trial in New York City during the summer of 2015, and by October 2017 over 3,000 venues had been measured, many of which were measured three times or more. It was enough data to produce results in a study that I published in the peer-reviewed Open Journal of Social Science that year.
technology
Average New York City Restaurant Noise Levels by Cuisine 76 to 80 dBA (rated “loud” by SoundPrint, difficult for conversation)
71 to 75 dBA (rated “moderate” by SoundPrint, good for conversation)
Mexican (80 dBA)
Japanese (74 dBA)
Latin, Spanish, American (79 dBA)
Indian, Chinese (73 dBA)
Mediterranean (78 dBA) Italian, French (76 dBA) The report says that average New York City restaurant volume levels were 78 dBA (A-weighted decibels are adjusted for human hearing), and bars were 81 dBA. Indian, Chinese, and Japanese restaurants were quieter overall, but in the study I note that “a person randomly walking into a restaurant or a bar in New York City during prime days and hours is more likely than not to encounter a Loud [76–80 dBA] or Very Loud [81 dBA or more] auditory environment.” These elevated decibel levels put people in danger of noise-induced hearing loss. With repeated exposure they are comparable to sound levels from movies, lawnmowers, or city traffic—none of which I enjoy listening to or talking over. SoundPrint is available in cities nationwide and to date has reached more than 55,000 submissions. When a city reaches a minimum number of submissions, we are able to refine the results and create a Quiet List. So it is thanks to SoundPrint users that I now have 30 go-to bars and restaurants in New York City where I can actually have a conversation. These crowd-sourced sound measurements are providing valuable data for the general public as well as public health officials. We also have Quiet Lists for San Francisco, Chicago, Minneapolis, and New Orleans, with Miami, Portland, Seattle, and Washington, D.C., coming soon. Also in the works is a version of the app for Android. A wider range of hardware devices use Android, which makes microphone consistency a bigger challenge, but we’re working on it. We are lucky to have spread through word of mouth, our “ambassador” program (volunteers who promote the app in their communities), and the press (our first was on Hearing Health Foundation’s blog!). While its accuracy and simplicity have resonated with users, I think the app’s biggest appeal is its mission to help people discover a quieter world— and the benefits of less noise. Every time a user takes a measurement and sends it to our database, we are sharing our concern about noise and standing up for quieter spaces. So keep making submissions for your city!
A lawyer by training and currently a financial research analyst in New York City, Gregory Scott is the founder of SoundPrint. He previously served on HHF’s Junior Board. For more, see soundprint.co. For references, see hhf.org/spring2019-references.
2/3 nearly
of restaurants and
9/10 of bars
in New York City are
too loud
for conversation (measured at an average 78 dBA).
Share your story: Do you use a smartphone decibel meter? Tell us at editor@hhf.org.
Support our research: hhf.org/donate
a publication of hearing health foundation
spring 2019
31
hearing health
hearing health foundation
WHAT Links ARE THERE BETWEEN Food AND Hearing? By Meagan Rowley
Lost hearing cannot be restored with a diet change, and should be addressed promptly. HHF encourages you to get your hearing tested if you experience difficulty hearing.
Rate at which risk of hearing loss increased among those with prediabetes, or elevated blood sugar.
30
percent
Rate at which risk of hearing loss decreased among women following healthy eating plans.
32
hearing health
hhf.org
as an aspiring doctor studying nutrition as an undergraduate, I understand how important it is to look at an individual’s state of health from different angles and perspectives. Nutrition is vital to every aspect of health, including the auditory system. There are no specific foods known to definitely cause or prevent hearing loss. Likewise, lost hearing cannot be restored through a diet change. However, research suggests an association between certain nutrition patterns and hearing health. Using data collected as part of the Boston-based Nurses’ Health Study II, a longitudinal study whose results were published in the Journal of Nutrition in May 2018 monitored the hearing health of more than 70,000 women on various diets for 22 years. These diets included the Alternate Mediterranean Diet (AMED), Dietary Approaches to Stop Hypertension (DASH), and Alternative Healthy Eating Index-2010 (AHEI-2010). These eating plans favor fruits, vegetables, seeds, nuts, legumes, whole grains, seafood, poultry, and low-fat dairy. All three also advise limiting foods that are high in sodium (salt) and LDL (low-density lipoprotein) cholesterol, and discourage the consumption of refined and red meats, processed foods, and sugary drinks. The study’s researchers, including 1987–88 Emerging Research Grants (ERG) scientist Roland Eavey, M.D., found that women following diets similar to AHEI-2010, DASH, and AMED decreased their likelihood of hearing loss by at least 30 percent, with DASH and AMED showing the greatest benefits. The B9 vitamin folate metabolizes the amino acid homocysteine, which can restrict blood flow. (The synthesized version of the B9 vitamin is folic acid.) Because the inner ear relies on a regular flow of blood, low folate levels have been linked with hearing loss. In a 2007 Annals of Internal Medicine paper, Dutch researchers showed that “folic acid supplementation slowed the decline in hearing of the speech frequencies associated with aging in a population from a country [the Netherlands] without folic acid fortification of food.” But the team cautioned that the effects in a country with folic acid fortification, such as the U.S., would need to be examined. Reporting in The FASEB (Federation of American Societies for Experimental Biology) Journal in February 2015, Spanish researchers showed that folate-deficient mice exhibited premature hearing loss. Their study found that lower folate appeared to impair the metabolism of homocysteine in the cochlea and associated oxidative stress. Capsaicin, the spicy component in chile peppers, appears to offer protection from hearing damage caused by cisplatin, a common chemotherapy drug, according to 2017 ERG scientist Sandeep Sheth, Ph.D., 2011 ERG grantee Debashree Mukherjea, Ph.D., and their Southern Illinois University School of Medicine colleagues. The group’s report in Scientific Reports in March 2019 showed that pretreating the rat ear with capsaicin appeared to protect the inner ear from cisplatin-induced inflammation that causes hearing loss. “Combining oral capsaicin with cisplatin-based chemotherapy could protect against hearing loss without compromising the chemotherapeutic efficacy of cisplatin,” the study says.
hearing health
Malnutrition is associated with earlier-onset hearing loss, according to a report in the American Journal of Clinical Nutrition in February 2018. Scientists found that malnourished children in Nepal were twice as likely to develop hearing loss as young adults compared with their well-nourished peers. Stunted inner ear development in utero due to maternal malnutrition contributes to a higher risk of hearing loss than does malnutrition once the babies were born, the researchers wrote.
Combining oral capsaicin (the spicy component of chiles) with cisplatin chemotherapy could protect against hearing loss without compromising the chemotherapy’s efficacy.
Former HHF intern Meagan Rowley is a senior on the pre-medicine track studying human nutrition at Case Western Reserve University in Cleveland. For references, see hhf.org/spring2019-references.
Share your story: Tell us your hearing loss journey at editor@hhf.org.
Support our research: hhf.org/donate
infographic bottom right: marjorie saavedra
Individuals with type II diabetes are also more likely to develop hearing loss than their nondiabetic counterparts, according to meta-analysis by Japanese scientists in the Endocrine Society’s January 2013 issue of the Journal of Clinical Endocrinology & Metabolism. Subjects with prediabetes—those whose blood sugar levels are elevated,
but not elevated enough for a diagnosis of diabetes—also have a 30 percent increased risk of hearing loss. The study authors attribute the higher risk to damaged nerves and blood vessels of the inner ear, a consequence of having type II diabetes for an extended period of time. While there is no direct cause and effect between specific foods and diets and hearing health, we may conclude the associations are strong enough to advise a healthy diet not only for overall health but also for the auditory system. As the nurses’ study concludes, “Consuming a healthy diet may be helpful in reducing the risk of acquired hearing loss.”
a publication of hearing health foundation
spring 2019
33
hearing aids
h e ar ing health foundation
OVER-THE-COUNTER (OTC) HEARING AIDS ON THE HORIZON Nonprescriptive hearing aids are set to disrupt the category. Here are ideas for making sure they fulfill their promise.
For references, see hhf.org/spring2019references.
34
hearing health
hhf.org
WHAT WILL BEST PRACTICES BE FOR OTC HEARING AIDS? By Laurie Hanin, Ph.D., CCC-A
in an effort to create more affordable amplification options for consumers with mild to moderate degrees of hearing loss, in August 2017 Congress passed legislation to begin the process of establishing a category of OTC hearing aids. By August 2020, the Food and Drug Administration (FDA) will publish proposed regulations for this new category, and after a period of public comment, final regulations will be published. When the regulations go into effect and the devices are readily available, this new category of “basic” hearing aids will be available to people with mild to moderate hearing loss without the intervention of an audiologist or other hearing healthcare professional. The FDA has stated their hope is that the outcome of the legislation will increase the use of hearing aids, especially among older adults. Research now indicates that untreated hearing loss in older adults is associated with cognitive decline, an increased risk of falls, isolation, loneliness, and depression. Given that only about 20 percent of older adults who could benefit from hearing aids use them, clearly there is a need for a way to increase hearing aid use in this population. As the executive director of New York City’s Center for Hearing and Communication (CHC), I support
the advent of this new class of hearing aids and anticipate that we will be able to provide care to those who choose to use them. However, the current legislation, as proposed, does not require that the patient has a hearing test by a licensed audiologist, which I believe is a best practice in hearing healthcare and the first critical step for an individual to take in order to obtain optimal benefit from any kind of amplification device. A hearing test is also a means to ensure there is not an underlying medical condition related to the hearing loss requiring medical intervention. Numerous consumer blogs have been written about the excitement surrounding lower cost hearing aids and the elimination of “the middleman”—that is, the audiologist. The audiologist is not a middleman in the dispensing process; the audiologist is a doctoral-level trained professional who provides expertise and insight into the fitting of the various features of modern hearing aids. This begins with the selection of the most appropriate device for the patient, and ends with objective testing to ensure the expected benefit of improved hearing is obtained. It’s reasonable to assume that the OTC hearing aids will have fewer sophisticated features, and as a
hearing aids
I would advise patients to begin the process with a hearing test conducted by a licensed audiologist, one who is willing to recommend an OTC hearing aid if appropriate, and to seek their advice on which OTC device would be best suited for the individual’s hearing loss and communication needs. result, perhaps require less expert fitting. That said, our experience over many years at CHC suggests that for hearing aids to work well, they need to be directional, filter out noise, adjust to different inputs, and adjust to the almost infinite configurations that hearing loss may take, both for loudness and speech discrimination. Recent research from Indiana University examined delivery models of hearing aids, comparing audiologist-fitted hearing aids with pre-programmed hearing aids, similar to those that would be used in an OTC fitting model. The study found that users experienced similar benefits in terms of improved speech recognition and ease of communication, but that hearing aid satisfaction and retention was better when an audiologist was involved with the fittings. It is still a big unknown as to what features will be incorporated into OTC hearing aids, and it is likely that it will be at least two to three years until OTC hearing aids are readily available to consumers. When they do, I would advise patients to begin the process with a hearing test conducted by a licensed audiologist, one who is willing to recommend an OTC hearing aid if appropriate, and to seek their advice on which OTC device would be best suited for the individual’s hearing loss and
communication needs. (A visit with a licensed hearing aid dispenser can provide similar input regarding OTC devices, although only an audiologist can rule out whether there is a medical condition related to the hearing loss.) Hearing loss is simply not “one size fits all,” and a licensed audiologist often blends art with science to ensure that the consumer gets the most benefit from amplification in order to improve quality of life. At CHC, we will be pleased if the new regulations result in more adults who need amplification actually purchasing, using, and deriving benefit from their hearing devices, and look forward to adapting our clinical model to provide the support needed for all patients.
Share your story: Tell us your opinion of the coming OTC hearing aids category at editor@hhf.org.
Support our research: hhf.org/donate
Laurie Hanin, Ph.D., CCC-A, is the executive director of the Center for Hearing and Communication in New York City. For more, see chchearing.org.
a publication of hearing health foundation
spring 2019
35
hearing aids
h e ar ing health foundation
REACHING ACROSS THE AISLE FOR OTC HEARING AIDS By Rebecca M. Lewis, Au.D., Ph.D., CCC-A mild to moderate hearing loss accompanies noise exposure and getting older, and all of these are becoming increasingly common. Researchers, audiologists, and patients agree that well-fit amplification (i.e., hearing aids) can improve patient quality of life. Hearing aids have been shown to improve quality of life when fit appropriately, but on the flip side, improperly fit devices can lead to poor outcomes and frustration. Direct access to amplification has been a goal of many groups to help mitigate the high price tag for professionally fit hearing aids, delays until clinical care is pursued, and the increasing need for access to hearing healthcare. When the guidelines are published by the FDA by August 2020, OTC hearing aids should offer a more affordable first step toward better hearing health, with particular benefit to those who don’t typically make it to a clinic due to health issues or a long travel distance. With the cost of an average pair of hearing aids with professional fitting services totaling roughly $5,000, the OTC movement offers devices that are a fraction of the cost. The potential for benefit does not come without challenges. The safety and efficacy of OTC hearing aids are the largest concerns from the hearing healthcare perspective because the implication of “OTC” removes oversight and services that ensure optimal performance. An increasing number of research studies highlight the importance of hearing in relation to other age-related health
36
hearing health
hhf.org
Direct access to amplification has been a goal of many groups to help mitigate the high price tag for professionally fit hearing aids, delays until clinical care is pursued, and the increasing need for access to hearing healthcare. outcomes. As a result, professionals are also concerned that a poor first experience with OTC hearing aids may steer people away from seeking professional hearing healthcare if needed, ultimately affecting other health-related outcomes. While we wait for the guidelines, I am cautious when it comes to current over-the-counter devices. Some companies do not require a hearing test, even online, and rely on self-reported hearing loss. Another concern is earpiece selection, as an improper fit with your ear canal can lead to feedback; one (earpiece) size literally does not fit all. The potential extensive variability of the devices points to the importance of in-person assistance, ideally using some verification measures that customize the sound to an individual. Incorporating future OTC hearing aids into the audiology practice offers many challenges to smooth implementation, but it is critical to maintain professional and open dialogue about the benefits and drawbacks. If clinicians, patients, and researchers share their knowledge and experience, we can work together
and ensure the safety and efficacy of OTC hearing aids are optimized, and support more people with hearing loss more efficiently. Rebecca M. Lewis, Au.D., Ph.D., CCC-A, is a clinical audiologist and researcher at Massachusetts Eye and Ear/Harvard Medical School in Boston.
Share your story: Tell us your opinion of the coming OTC hearing aids category at editor@hhf.org.
Support our research: hhf.org/donate
hearing aids
CAN OTC HEARING AIDS ACT AS A CATALYST FOR AUDIOLOGY REIMBURSEMENT UPDATES? By Kim Cavitt, Au.D., and Nicholas S. Reed, Au.D. hearing loss impacts two-thirds of Americans over the age of 70 years. Traditionally ignored as a benign chronic condition, “hearing loss” has begun to cement its status as a public health concern. Recent literature suggests hearing loss is independently linked to important health markers and outcomes, such as cognitive decline, dementia, falls, and depression, and increases health resource utilization. Hearing loss may be a modifiable risk factor such that appropriate hearing care could help overcome the mechanistic pathways that relate these outcomes. For example, although research is ongoing, hearing aid use could help improve the signal presented from the peripheral auditory system to the brain to improve cognitive load or reduce the impact of hearing loss on working memory (i.e., cognitive decline). In the U.S., the uptake of hearing aids by persons with hearing loss remains low at less than 20 to 30 percent. This statistic, when taken in the context of the strain that many of the comorbidities associated with hearing loss place on the healthcare system and quality of life, has played a central role in calls to improve access and affordability of hearing care. The current model of hearing care, which has remained relatively stagnant for decades and premised on the medical model, diminishes the importance of audiologists’ services from the public view when bundled with the sale of the hearing aid.
From an audiologic perspective, we believe the OTC Hearing Aid Act of 2017 is an opportunity. Decoupling the sale of devices from the audiologist or dispenser will highlight the importance of services provided by the professional. Moreover, whereas hearing care was a single point of entry model system, it now becomes a pyramid of multiple care offerings and entry points for the healthcare consumer. OTC Hearing Aid Market Provides Optimism
The passage of the OTC Hearing Aid Act of 2017 enables the FDA—by the year 2020—to create a regulatory system for self-fitting hearing aids. These devices are aimed at those with mild to moderate hearing loss that will be available OTC. The law aims to increase accessibility by providing direct access to devices for those unwilling or unable to see an audiologist. Likewise, affordability, technologic innovation, and public awareness of hearing loss may increase as new companies become involved with the hearing aid sector and target the healthcare consumer. From an audiologic perspective, we believe the OTC Hearing Aid Act of 2017 is an opportunity. Decoupling the sale of devices
from the audiologist or dispenser will highlight the importance of services provided by the professional. Moreover, whereas hearing care was a single point of entry model system, it now becomes a pyramid of multiple care offerings and entry points for the healthcare consumer. Given that OTC hearing aids address mild to moderate hearing losses, it is plausible that numerous persons will enter hearing care via this new pathway and end up in the audiologists’ services as their hearing loss or perceived handicap from hearing loss progresses.
Warranted Changes Needed to Cover Services Despite the optimistic outlook, changes to the current system are still warranted. A lack of access to support services could limit
a publication of hearing health foundation
spring 2019
37
hearing aids
h e ar ing health foundation
1 4 in
Persons surveyed who said they had help paying for their hearing aids, according to a 2018 Hearing Tracker/ Hearing Loss Association of America survey of roughly 2,000 hearing aid consumers.
1 20 in
Those saying they had full coverage from their insurance company, according to the survey.
22
Number of states that mandate insurance coverage for hearing aids for children, according to the American Speech-Language-Hearing Association (ASHA).
5
Number of states that mandate insurance coverage for hearing aids for children as well as adults— Arkansas, Connecticut, Illinois, New Hampshire, and Rhode Island— according to ASHA.
3
Professional groups—the American Academy of Audiology, the Academy of Doctors of Audiology, and ASHA, whose memberships comprise tens of thousands of audiologists— now working together to develop legislation to update Medicare to expand access to and coverage of audiology services, including diagnostic as well as treatment services by audiologists.
38
hearing health
hhf.org
the impact of OTC devices, while proper coverage of these services by Medicare could go a long way in improving hearing care in the U.S. We have previously written about the need for Medicare to consider coverage of these services to improve access to necessary care. Presently, a great number of diagnostic, treatment, and rehabilitative services are either not currently covered by Medicare or are covered only under specific circumstances. Hearing aids and related services are considered a statutory exclusion. For example, Medicare currently does not cover audiometric testing for the sole purpose of fitting or modifying a hearing aid. Medicare only covers audiologic and vestibular testing that is physician-ordered and medically reasonable and necessary, by their definition. As a result, many procedures and services become the financial responsibility of the patient. Treatment and rehabilitation currently have even more limited coverage, especially when provided by an audiologist, even when the audiologist is the most trained and appropriate provider to provide the services. Unfortunately, there is currently no code or mechanism to capture third-party coverage for most audiologic treatment. The codes 92626 and 92627 (evaluation or aural rehabilitation status) are only appropriate, for third-party coverage, for pre- and post-operative services in and around an auditory prosthetic device, such as a cochlear implant. Also, the code 92626 requires at least 31 minutes of patient engagement. These codes currently lack legitimate coverage related solely to a hearing aid or assistive listening device. The codes an audiologist can use to represent a communication needs assessment/hearing aid
examination and selection are 92590/1 or V5010. Medicare never covers these codes and their associated procedures because of the hearing aid coverage exclusion. These codes typically only yield third-party coverage when payers cover the resulting amplification. Also, the code 92507 (treatment of speech, language, voice, communication, and/ or auditory processing disorder; individual) is currently used—by speech-language pathologists—to receive coverage for medically necessary aural rehabilitation. Audiologists cannot utilize this code, within the Medicare system and many other payers, to represent the same service. Instead they must use the codes 92630 and 92633 (aural rehabilitation, pre- and post-lingual), which carry little to no third-party coverage, regardless of the payer. Lack of coverage of these codes, when the service is provided by an audiologist, is especially problematic because it is often the audiologist who is the most appropriate and best trained provider to treat the communication and listening difficulties surrounding the hearing loss. Instead, these services are not provided or are bundled into the cost of the amplification, making the device more expensive to obtain. Essentially there are no items or services surrounding the evaluation, fitting, or modification of a hearing aid that have consistent thirdparty coverage. The vast majority of the treatment or rehabilitation of hearing loss and its associated communication difficulties also has limited coverage, except if provided by a physician or speechlanguage pathologist. This greatly restricts affordable access to valuable audiologic care and limits the impact of over-the-counter hearing aids.
hearing aids
Next Steps
The overriding goal of the delivery of all audiologic and vestibular care is to provide patients with access to patient-centered and evidencebased diagnostic, treatment, and rehabilitative services. Audiologists can succeed and thrive, both professionally and financially, in this paradigm. Monetization and patient care are not mutually exclusive. In the context of the importance of hearing loss as a public health concern and changes in hearing aid regulations and classifications, a call for Medicare to realign coding coverage and reimbursement for these services should be made.
Clockwise from top left: Grace Gleba in the red sweater at the ceremonial signing of her namesake law in 2008; Grace today, a Penn State University Schreyer Honors College student; and volunteering with Jennifer Titus, Au.D., CCC-A, in New Jersey.
GRACE’S LAW AND HEARING AID COVERAGE FOR CHILDREN By Jeanine and Grace Gleba
A version of this article originally appeared in Hearing Health & Technology Matters, hearinghealthmatters.org. A past president of the Academy of Doctors of Audiology, Kim Cavitt, Au.D., oversees her consulting firm, Audiology Resources Inc., in Chicago. Nicholas S. Reed, Au.D., is an instructor of audiology at the Johns Hopkins School of Medicine and is on the faculty at the Cochlear Center for Hearing and Public Health at the Johns Hopkins Bloomberg School of Public Health in Baltimore.
Support our research: hhf.org/donate
in december 2008, a small (Christmas) miracle happened in the state of New Jersey and personally for our family. It’s hard for us to believe that it has been a decade since Governor Richard Codey said these words: “I want to personally thank Grace and the entire Gleba family for their years of advocacy on behalf of children with hearing loss. Grace’s tenacity, and her own example of what children can achieve with the proper treatment for hearing loss, are a major reason why kids in New Jersey will be able to receive the gift of hearing for years and years to come. Grace and her family have taken personal adversity and turned it into something positive for the people of New Jersey. We all owe her a debt of gratitude.” The governor spoke as we witnessed the passage of Grace’s
Law S467/A1571. These bill numbers are emblazoned forever for our family. Grace’s Law is known as Hearing Aid Insurance Legislation (HAIL) and mandates hearing aid coverage for New Jersey children 15 years old and younger. For our family and all of the families who advocated in the state capital of Trenton with us, it was a monumental accomplishment. In fact, it took nine years to raise awareness and fight for this law to become a reality. The statistics validate this being quite a feat as only 3 percent of all bills introduced ever become a law. Now, in 2019, we are happy that as a result of the Affordable Care Act, the state has made hearing aid coverage an essential health benefit, and since 2014 there is no longer a maximum benefit limit of $1,000 per hearing aid (after deductibles, copays, etc.). Now that’s something to celebrate—even better coverage for children.
The Gleba family lives in New Jersey.
a publication of hearing health foundation
spring 2019
39
$ hearing health
hearing health foundation
HOW TO PLAN FOR THE COST OF HEARING CARE By Matthew Phillips
out of the estimated 48 million Americans living with some degree of hearing loss, only one in five wears hearing aids. The main reason? Cost. And these aren’t the only costs associated with hearing loss. Over the course of a lifetime, healthcare fees can add up to tens of thousands of dollars—or more. Here are tips to help you budget and plan for these expenses. Find a health insurance plan tailored to your needs. Hearing aid devices usually range from $1,000 to $4,000 each and may require replacement roughly every five years. Many insurance companies do not provide full or even partial hearing aid coverage. Currently, only 22 states require insurance companies to provide hearing aid coverage for children, and only five states have provisions that include coverage for adults. Government healthcare programs such as Medicare offer little to no coverage, with the breadth of coverage varying from state to state for Medicaid. If your current health plan does not cover hearing aids, an accredited insurance broker or agent can help you identify a plan that will work best for your situation and location. Make sure your agent represents several major insurers to ensure they are not incentivized toward selling you a specific plan. Plan and budget to cover your healthcare costs. Plan for three types of expenses: fixed monthly premiums to your insurance company; routine out-of-pocket expenses (e.g., hearing devices); and unexpected costs (e.g., 40
hearing health
hhf.org
emergency room visits). In addition, make sure you understand all the costs included with your health plan, including deductibles, copays, co-insurance, and the out-of-pocket maximum. Once you’ve identified all these expenses: » Add up the cost of your fixed premiums and routine out-ofpocket expenses. Divide the total by 12 and aim to save that amount each month. » Open a separate medical emergency fund. You’ll want to start saving enough to cover your deductible and eventually, your plan’s annual out-of-pocket maximum. Consider opening a high-yield savings account, as they often have no fees and no minimum balance and offer higher returns than a typical savings account. » Ask your employer whether you’re eligible for a Health Savings Account (HSA) or Flexible Spending Account (FSA), both of which allow you to make tax-free contributions to save for medical costs. You may be able to use HSA or FSA funds to pay for hearing aid devices and hearing aid batteries. One key difference is that HSA funds automatically roll over from year to year, while FSA accounts have a use-it-or-lose-it provision. If you’re raising a child with hearing loss, consider developing an estate plan to help ensure they are financially secure. A financial planner or estate planning attorney can help you navigate this complex topic and develop a plan tailored to
your financial situation as well as to your child’s needs. A trust, for example, can ensure your child’s inheritance is carefully managed according to your wishes. If your child is eligible for Medicaid or Supplemental Security Income (SSI), a special needs trust will ensure that he/she will remain eligible for federal benefits. The costs associated with hearing loss can be overwhelming, but you don’t have to navigate them alone. A trusted financial professional can help you plan for these expenses or ensure your loved one’s costs are taken care of after you’re gone. Matthew Phillips is a wealth adviser at Trilogy Financial, a privately held financial planning firm with advisers across the country. Based in Corona, California, Phillips partnered with RISE Interpreting and California Baptist University to deliver American Sign Language–certified translation, workshops, and other services to better serve his clients. For more, see trilogyfs.com. For references, see hhf.org/spring2019-references.
Share your story: Tell us your hearing loss journey at editor@hhf.org.
Support our research: hhf.org/donate
THE
hearing health
4 TYPES OF HEARING LOSS
By Lauren McGrath with illustrations by Marjorie Saavedra
If you’ve been diagnosed with hearing loss, your hearing healthcare professional may have used a term to describe the type, such as conductive or sensorineural. But what do these terms mean, exactly? Here are the four types of hearing loss.
1 Conductive:
3 Combined (or mixed):
2 Sensorineural:
4 Auditory neuropathy:
Sound waves are not able to efficiently go through the outer ear canal to the eardrum and the small bones of the middle ear. There is typically a reduction in sound levels or the ability to hear faint sounds. This type of hearing loss can often be corrected medically or surgically, and bone conduction hearing aids are available when medical or surgical correction are insufficient. This is caused by damage to the hair cells or spiral ganglion neurons of cochlea in the inner ear, with the result that sound cannot be converted into electrical signals for the auditory nerve to transmit to the brain. Treatments include amplification through hearing aids or cochlear implants.
Lauren McGrath is Hearing Health Foundation’s marketing and communications director.
This is a combination of conductive and sensorineural hearing loss. Auditory Nerve The conductive component may be able to be treated and reversed medically or surgically. However, the sensorineural component is often permanent. Hearing aids can be beneficial for persons with a mixed hearing loss, but if ear infections are a cause, additional attention is needed to ensure the successful use of the hearing aids. In this emerging type of hearing loss, sound is processed well by the inner ear but the transmission of signals from the inner ear to the brain is impaired. Those with auditory neuropathy, regardless of an underlying hearing loss, have trouble with understanding speech clearly. Research is ongoing to better diagnose and define this type of hearing loss.
HHF web design and development intern Marjorie Saavedra studies graphic design at City College of New York.
Make an Appointment If you believe you or your loved one may have a hearing loss, tinnitus, and/or balance issue, please make an appointment with a hearing healthcare professional, such as an audiologist or an ear, nose, and throat specialist (ENT, or otolaryngologist).
For references, see hhf.org/spring2019-references.
A comprehensive evaluation will determine the types and severity of hearing loss present and assist hearing healthcare providers in making appropriate recommendations for hearing aids, cochlear implants, or other assistive devices. An ENT appointment can also help rule out a medical cause for hearing loss. a publication of hearing health foundation
spring 2019
41
research
The goal of Hearing Health Foundation’s Hearing Restoration Project (HRP) is to determine how to regenerate inner ear sensory cells in humans to eventually restore hearing. These sensory hair cells detect and turn sound waves into electrical impulses that are sent to the brain for decoding. Once hair cells are damaged or die, hearing is impaired, but in most species, such as birds and fish, hair cells spontaneously regrow and hearing is restored. The HRP is tasked with uncovering how to replicate this regeneration process in humans.
42
hearing health
hhf.org
A NEW ROLE FOR THE HEARING RESTORATION PROJECT’S SCIENTIFIC DIRECTOR By Tamara Hargens-Bradley
Peter Barr-Gillespie, Ph.D., now oversees Oregon Health & Science University’s research initiatives in a newly created position that dovetails with Hearing Health Foundation’s international research consortium, the Hearing Restoration Project, and its efforts to find better therapies for hearing loss and related conditions. peter barr-gillespie, ph.d., became oregon health & Science University’s (OHSU) first chief research officer and executive vice president on Jan. 1, 2019. Barr-Gillespie has served as interim senior vice president for research at OHSU since 2017. In his new role, Barr-Gillespie is the principal adviser to OHSU President Danny Jacobs, M.D., MPH, FACS, on research strategy and research resource allocation. The position calls for leading and managing OHSU’s research enterprise—comprising dozens of internationally and nationally acclaimed basic, translational, clinical, and public health research programs—and serving on the president’s executive leadership team. “Dr. Barr-Gillespie has done a tremendous job leading the OHSU research mission on an interim basis. I’m delighted to appoint him to a new, permanent position that reflects his contributions and capabilities as well as the vital role of research at OHSU,” Jacobs says. Barr-Gillespie also will collaborate with external academic, industrial, and community research partners, and the various funding, regulatory, and accrediting bodies. Moreover, he will represent OHSU in research collaborations with other universities in Oregon and the northwest region. “I am excited to support Dr. Jacobs in developing OHSU’s 2025 strategic plan for research,” Barr-Gillespie says. “To be among the top-ranked research universities for NIH [National Institutes of Health] funding in the country and maintain our national reputation for cutting-edge research, we need to empower our researchers to do their best science by smartly investing in people, core resources, and space, and enhancing our graduate programs.” Barr-Gillespie is an internationally recognized scholar, biomedical researcher, and visionary academic leader who has been on faculty at OHSU since 1999. He currently holds faculty appointments in the departments of Otolaryngology/Head and Neck Surgery, Biochemistry and Molecular Biology, and Cell and Developmental
research
photo credit: kristyna wentz-graff/ohsu
An NIH-funded investigator, Barr-Gillespie’s research focus, his passion, is understanding the molecular mechanisms that enable our sense of hearing. Specifically, the Barr-Gillespie lab endeavors to determine how sensory cells in the inner ear, called hair cells, allow humans to perceive sound. Biology in OHSU’s School of Medicine and Oregon Hearing Research Center. He also is a senior scientist in the OHSU Vollum Institute. An NIH-funded investigator, Barr-Gillespie’s research focus, his passion, is understanding the molecular mechanisms that enable our sense of hearing. Specifically, the Barr-Gillespie lab endeavors to determine how sensory cells in the inner ear, called hair cells, allow humans to perceive sound. Barr-Gillespie will maintain his active research program while serving as chief research officer. Barr-Gillespie is also the scientific director of the Hearing Restoration Project (HRP), an international consortium of 14 investigators funded by Hearing Health Foundation. The HRP’s goal is to develop a biological therapy for hearing loss arising from destruction of hair cells, which are not regenerated after damage from noise, ototoxic drugs, or aging. Barr-Gillespie earned his bachelor’s degree in chemistry from Reed College in 1981, carrying out his senior undergraduate thesis at OHSU after a summer fellowship in OHSU’s biochemistry department. He received his doctorate in pharmacology at the University of Washington in 1988, and completed a postdoctoral fellowship in physiology, cell biology, and neuroscience with Jim Hudspeth, M.D., Ph.D., at the University of California San Francisco and the University of Texas Southwestern Medical Center in 1993. Following his fellowship, he accepted a faculty position in physiology at Johns Hopkins and remained there until accepting the position of scientist at the OHSU Vollum Institute and associate professor of otolaryngology/head and neck surgery in the OHSU School of Medicine in 1999. In 2014, Barr-Gillespie was appointed associate vice president for basic research at OHSU. As a young investigator, Barr-Gillespie was named a Pew Scholar in Biomedical Sciences, a program that funds
research “that shows outstanding promise in science relevant to the advancement of human health.” During his tenure at OHSU, he has been honored with the Faculty Excellence in Education Award and the John A. Resko Faculty Research Achievement and Mentoring Award. Over his distinguished career, he has published more than 115 scholarly articles, chapters, and reviews, and has been an invited lecturer at dozens of research universities, academic conferences, and scientific events. He will be the keynote speaker at a New York Academy of Sciences conference on “Hair Cell Regeneration and Hearing Restoration” in New York City in October. Barr-Gillespie and his wife, Ann Barr-Gillespie, D.P.T., Ph.D., live in Portland. She is the vice provost and executive dean of the College of Health Professions at the Pacific University Hillsboro campus. Their children are Aidan Gillespie, 17, and Katie Gillespie, 24, whom Peter and Ann share with their mother, Susan Gillespie. In their spare time, Peter and Ann enjoy cycling and hiking.
A version of this story originally appeared on the OHSU News website, at news.ohsu.edu.
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
spring 2019
43
research
Recent Research by Hearing Health Foundation Scientists, Explained Single-Cell RNA Sequencing Reveals More Clues for Hair Cell Regeneration Mantle cells 5
A/P pole support cells
6 13
8
Central support cells 9
7
12 14 11
D/V pole amplifying support cells
10
4
Dividing, differentiating hair cell progenitor
Young/Mature hair cells
3
2
1
The lateral line is a sensory system that allows aquatic vertebrates to orient themselves by detecting water motion. The lateral line organs (neuromasts), distributed on the head and along the body, contain approximately 60 cells, composed of central sensory hair cells surrounded by support cells and an outer ring of mantle cells. Using single-cell RNA sequencing, we combined some of the less well-defined clusters and identified major neuromast cell types, shown in this illustration, ranging from support cells to mature sensory hair cells.
sensorineural hearing loss in mammals can often be attributed to damage or destruction of the delicate hair cells located within the inner ear. The microscopic hairlike projections on the surface of these cells are the key structure responsible for converting sound waves to electrical signals that travel to the brain through the auditory nerve. Unlike mammals, other vertebrates such as fish, birds, and reptiles routinely regenerate sensory hair cells during homeostasis and following injury. By studying the genetic program of hair cell regeneration in nonmammalian vertebrate organisms, researchers may discover therapeutic targets for treating hearing loss in humans. One such organism, the zebrafish, has emerged as a powerful model for studying sensory hair cell regeneration. Like other fish, the zebrafish contains a network of sensory hair cells throughout its body to detect changes in water movement. The hair cells are located in small organs in the skin called neuromasts, which also contain cell types that are remarkably similar to those found in the mammalian inner ear. To study the genetic program of hair cell regeneration in zebrafish, we sequenced the RNA of individual cells within neuromasts, allowing us to classify cell types based on their gene expression signature. This included cells transitioning from support cells to fully mature sensory hair cells, thereby identifying new genes that are expressed during hair cell development. In addition, we characterized the role of the growth factor fgf3, and found that it acts to inhibit hair cell progenitor proliferation. Our results were published in the journal eLife on Jan. 25, 2019. Future work will examine the function of these genes in sensory hair cell regeneration. —Mark E. Lush, Ph.D., and Daniel C. Diaz Mark E. Lush, Ph.D., and Daniel C. Diaz both work in the lab of Tatjana Piotrowski, Ph.D., at Stowers Institute for Medical Research in Kansas City. Piotrowski is a member of the Hearing Restoration Project, which helped fund this study. For references, see hhf.org/spring2019-references.
44
hearing health
hhf.org
research
EMERGING RESEARCH GRANTS
illustration credit: the lab of tatjana piotrowski, ph.d., stowers institute for medical research
Improved TMC1 Gene Therapy Restores Hearing and Balance in Mice half of all inner ear disorders, which have a negative impact on hearing and/or balance, are caused by genetic mutations. A study published in January 2019 in Nature Communications demonstrates the effectiveness of a gene therapy targeting one specific gene mutation, TMC1 (transmembrane channel-like 1). The research was conducted by Carl A. Nist-Lund in the Harvard Medical School lab of Gwenaëlle S. Géléoc, Ph.D., and Jeffrey R. Holt, Ph.D., with contributions from colleagues including 2017 Emerging Research Grants (ERG) recipient Jennifer Resnik, Ph.D., and her ERG co-principal investigator Daniel B. Polley, Ph.D., both also of Harvard Medical School. So far, 35 TMC1 mutations have been identified in humans, including several that are responsible for moderate to severe hearing loss, representing between 3 to 8 percent of cases of genetic hearing loss. This TMC1 gene therapy has had an encouraging level of success in mice and may prove capable of addressing similar genetic mutations in humans in the future. Previous studies targeting this gene were only moderately successful in restoring function in inner hair cells, with little or no success in outer hair cells. Both types of hair cells are necessary for hearing. The team decided to look at improving the mechanism that encodes TMC1 in affected mice, using a synthetic delivery vehicle they hoped would be more effective than the conventional one used in previous studies. In mice with this TMC1 mutation, hair cells begin to die when the mouse reaches 4 weeks of age. The treated mice in this study showed improved rates of survival in both inner and outer hair cells. Most importantly, the improvement in hearing in the mice that received this intervention occurred primarily
in the lower frequencies. Human speech is at the low to mid frequency range of the auditory spectrum, so if future human trials are able to replicate the success of this study, speech perception may improve. The study additionally provided evidence of improved responses in the brain of the treated mice. This indicates that treatment of the cochlea by injection had knock-on effects in the auditory cortex, the part of the brain that plays an important role in hearing. Finally, the team recorded improved balance function in the mice that received the gene therapy. While only very young mice experienced better hearing, even older mice showed improvement in balance. The team writes that this improvement in balance function in mature mice may contribute to eventually developing a way to treat balance disorders in humans. —Christopher Geissler, Ph.D.
Jennifer Resnik, Ph.D., is a postdoctoral fellow in the Polley Lab, part of the Eaton Peabody Laboratories, Massachusetts Eye and Ear/Harvard Medical School. Her 2017 Emerging Research Grant was generously funded by Hyperacusis Research Ltd. Christopher Geissler, Ph.D., is HHF’s director of program and research support. For references, see hhf.org/spring2019-references.
Support our research: hhf.org/donate
a publication of hearing health foundation
spring 2019
45
research
SHARED KNOWLEDGE IS POWER
2018 ERG scientist Tenzin Ngodup, Ph.D., of Oregon Health and Science University presents his research poster at the Association for Research in Otolaryngology (ARO) MidWinter Meeting.
Hearing Health Foundation scientists at the Association for Research in Otolaryngology MidWinter Meeting share—and gain—ideas from their colleagues in the research field. By Lauren McGrath each winter, thousands of hearing and balance scientists join their colleagues from around the world at the Association for Research in Otolaryngology (ARO) MidWinter Meeting. It is one of the premier international conferences for those in the field, providing hearing and balance researchers opportunities to present their latest findings and engage in stimulating discussions with one another. I was fortunate to attend this year’s 42nd meeting in Baltimore on behalf of Hearing Health Foundation (HHF), along with Emerging Research Grants (ERG) awardees past and present, Hearing Restoration Project (HRP) consortium scientists, and members of HHF’s Council of Scientific Trustees—all of whom are integral to HHF’s mission to prevent, treat, and cure hearing and balance conditions. One forum through which scientists share their knowledge at ARO is in the poster hall. The research poster by Oregon Health and Science University’s Tenzin Ngodup, Ph.D. (2018 ERG), visually explains his progress quantifying inhibitory neurons in the ventral cochlear nucleus in order to prevent and treat tinnitus. The University of Maryland’s Samira Anderson, Au.D., Ph.D. (2014 ERG), a clinician who transitioned to research, was represented in an impressive half dozen posters with her colleagues, many about the effects of aging on hearing. ARO attendees also conduct topic-specific seminars. University of Colorado Denver’s Elizabeth McCullagh, Ph.D. (2016 ERG), led a symposium in which she and other speakers—including Kelly Radziwon, Ph.D. (2017 ERG), and Khaleel Razak, Ph.D. (2018 ERG)—presented their novel findings related to Fragile X syndrome: a genetic model for autism, difficulties in sound localization, and overstimulation by sound in mouse models. Thanks to seed funding from HHF, McCullagh was able to investigate and publish information about a previously underfunded topic. “The ERG program is immensely valuable for helping young scientists advance to receive a Research Project Grant [R01] from the National Institutes of Health,” says Allen Ryan, Ph.D., a member of HHF’s Council of Scientific 46
hearing health
hhf.org
Trustees, which reviews grant proposals. Every dollar invested in ERG grantees yields $91 from the NIH. The HRP consortium also convened at ARO to deliver updates on five active projects following their most recent Seattle meeting. Bioinformatics and epigenetics were major focal points, with the University of Maryland’s Ronna Hertzano, M.D., Ph.D., showcasing updates to the gEAR database that she created, and Neil Segil, Ph.D., of University of Southern California, reporting on gene changes in the mouse inner ear. Stanford University’s Stefan Heller, Ph.D., spoke about changes in gene expression after hair cell loss in the chick cochlea and noted the progress made. “The investments in the HRP are truly paying off, especially in the past one to two years. HRP investigators had major papers published and obtained NIH support with the help of funding for the HRP consortium,” he says. “Regarding my lab’s work, HRP support has given us the chance to focus on getting the highest possible quality of data—in my mind, the most important foundation for future work.” On behalf of our researchers, HHF sincerely thanks our generous donors and supporters who make this life-changing science possible.
EMERGING RESEARCH GRANTS
Lauren McGrath is HHF’s director of marketing and communications. For references, see hhf.org/spring2019-references.
research
A HOME FOR HEARING RESEARCH The National Institute on Deafness and Other Communication Disorders, which recently celebrated its 30th year, has been connected to Hearing Health Foundation from the start. By Neyeah Watson the national institute on deafness and other Communication Disorders (NIDCD) commemorated 30 years as an institute of the National Institutes of Health in October 2018. Hearing Health Foundation (HHF) is proud to both honor and share in this milestone for the NIDCD, which focuses on biomedical advancements in hearing, balance, taste, smell, voice, speech, and language. The need for the NIDCD was first championed by Geraldine Dietz Fox, a Philadelphia preschool teacher who, at 27, had developed a sensorineural hearing loss in her left ear from the mumps virus. In her search for resources and treatments, she discovered HHF, at the time known as Deafness Research Foundation, and joined its Board of Directors. An advocate for hearing loss research, Fox was an influential member of HHF’s board but recognized the need to look beyond its nonprofit resources and toward government funding. Already politically connected by way of her father and husband, who worked on the campaigns of Florida Senator Claude Pepper and
HHF’s lasting relationship with the NIDCD has been vital to new discoveries in hearing and balance science, and for launching the independent research careers of many investigators.
U.S. President Ronald Reagan, respectively, Fox headed to Washington, D.C., on behalf of HHF. She befriended Robert Ruben, M.D., a chairperson for the National Committee for Research in Neurological and Communicative Disorders, a coalition of health agencies and scientists that worked to increase funding for the National Institute for Neurological and Communicative Disorders and Stroke, as it was then known. A fourtime Emerging Research Grants (ERG) recipient and otolaryngologist, Ruben had been urging Congress for support of more communication sciences research. Fox’s new friendship with Ruben and other scientists, combined with her impressive zeal and demeanor as a private citizen with hearing loss, helped her gain an appointment to the advisory committee of the National Institute for Neurological and Communicative Disorders and Stroke in 1986. But Fox was disappointed in the amount of hearing research supported by the institute, and she collaborated with Ruben and Peter Reinecke, a congressional staffer, to move toward crafting a bill for the creation of the NIDCD. Reinecke worked closely with Pepper, who had a hearing loss of his own, and who teamed up with Iowa Senator Tom Harkin, whose brother had a hearing loss. The legislation received bipartisan support and was signed into law by President Reagan in 1988, forming the NIDCD. HHF’s lasting relationship with the NIDCD has been vital to new discoveries in hearing science. For example, HHF’s ERG program provides seed funding for talented researchers, most of whom go on to expand their investigations after successfully competing for larger NIDCD research grants. “HHF plays a seminal role in launching the independent research careers of many scientists in hearing research,” says former NIDCD director James F. Battey Jr., M.D., Ph.D. With gratitude to Fox, Ruben, and Reinecke for giving a home to hearing research, HHF is proud to have been associated with the NIDCD’s creation and celebrates the shared commitment to find better cures and treatments for hearing loss and related conditions.
HHF intern Neyeah Watson studies communications at Brooklyn College. For references, see hhf.org/spring2019-references.
Support our research: hhf.org/donate a publication of hearing health foundation
spring 2019
47
h earing health foundation
Tech Solutions
advertisement
This collection of sponsored products represents current trends in hearing technology.
CapTel® Captioned Telephone
Hear Every Word, Not Every Third
Enjoy the phone again with confidence! Ideal for people with hearing loss, the CapTel® Captioned Telephone shows captions of every word the caller says over the phone. You can listen to the caller, and read the written captions in the CapTel® display screen. Only CapTel® gives you several models to choose from, including contemporary touch-screen options and traditional telephone styles. All CapTel® phones include a large display screen, adjustable font sizes and colors, and a built-in answering machine that shows captions of your messages. CapTel® gives you the confidence to reconnect over the phone, knowing you won’t miss a word! Visit CapTel.com.
The easy-to-use Panasonic KX-TGM430B amplified phone is ideal for anyone affected by hearing loss. Bright LEDs signal incoming calls. Boost caller volume up to 40 decibels (dB) and ringer volume up to 100 dB. Slow down fast talkers while conversing/checking messages with the slow talk feature. Sync up to two smartphones to make/take amplified cell calls from anywhere in the house. Includes enlarged dial pads, speakerphone, bilingual talking caller ID and call block. Expandable to six handsets. Visit shop.panasonic.com/amplified.
These featured products are paid advertisements. To advertise in Hearing Health magazine, please email advertising@hhf.org or call 212.257.6140.
48
hearing health
hhf.org
marketplace
SUPPORTERS OF HEARING HEALTH Cochlear™
Captioned Telephone
CapTel captioned telephone shows word-for-word captions of everything a caller says over the phone. Like captions on TV—for your phone. Helps people with hearing loss enjoy phone conversations, confident they’ll catch every word.
ClearCaptions is a federally funded, call-captioning service for those whose hearing loss makes it difficult to use the phone, letting them read the words their callers say. To learn more, visit clearcaptions.com.
At Cochlear, we strive to connect your life to a world full of sound. We’re committed to delivering revolutionary cochlear implant and bone-anchored hearing technologies to help you enjoy, connect to, and interact with a world of sound.
captel.com 800.233.9130
clearcaptions.com 866.246.7850
cochlearamericas.com 800.523.5798
pages 23, 48
page 21
page 7
You no longer need to miss out on what was said during a telephone call. Visit hamiltoncaptel.com to learn about a free service that provides captions for your telephone conversations.
The Les Paul Foundation inspires innovative and creative thinking by sharing the legacy of Les Paul through support of music education, recording, innovation, and medical research related to hearing.
By advancing the field of hearing implant technology, MED-EL’s people and products connect individuals around the globe to the rich world of sound.
hamiltoncaptel.com 888.514.7933
lespaulfoundation.org 212.687.2929
medel.com 888.MEDEL.CI (888.633.3524)
page 51
page 22
page 52
Hear and be heard, loud and clear. Panasonic’s amplified cordless phone systems are ideal for everyone affected by hearing loss. Among many features, the Volume Booster amplifies the call volume up to 50 decibels.
Phonak is passionate about creating hearing solutions that change lives and allow people to thrive socially and emotionally. Join our community at HearingLikeMe.com or visit us at TryMarvel.com to learn about our latest Marvel technology.
ReSound offers hearing aids for any listening environment and lifestyle. Find the perfect hearing aid for your needs from one of the world’s largest manufacturers.
shop.panasonic.com/amplified
phonak-us.com
resound.com 800.248.4327
pages 2, 48
page 17
page 5 a publication of hearing health foundation
spring 2019
49
meet the researcher
hearing health foundation
EMERGING RESEARCH GRANTS
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.
Meet the Researcher Khaleel Razak, Ph.D.
University of California, Riverside
Razak received his doctorate in neuroscience at the University of Wyoming and is now an associate professor of psychology and neuroscience at the University of California, Riverside. Razak’s 2018 Emerging Research Grant is generously funded by the General Grand Chapter Royal Arch Masons International.
In His Words brain plasticity is the major topic of interest in my research career. When it comes to presbycusis (age-related hearing loss), we know there are changes in cellular and circuit mechanisms in the auditory system. But the relative contributions of brain aging and hearing loss are not easy to disambiguate. To do this, we will compare genetically engineered, age-matched mice with one group experiencing presbycusis and a second group that ages without considerable hearing loss. We will measure spectrotemporal processing—the processing of sounds with complex changes in frequency over time, such as speech processing. understanding how the auditory system processes behaviorally relevant sounds and how such processing changes during development, or as a result of disorders with communication implications, are long-term goals of this project. I hope to contribute new data regarding auditory processing in the aging brain and to determine how hearing loss contributes to aging trajectories. I also hope to develop therapeutic strategies to delay or prevent central auditory processing decline due to presbycusis. my dream as a child was to play cricket for India, and I actually made it to the university level! But I became seriously interested in science while working on my senior thesis, which was to develop a texting device (this was in the early ’90s!) for the hearing impaired. It used push-button phones to encode English letters to be transmitted through a regular landline. A decoder at the receiving end would display the 50
hearing health
hhf.org
text. We tested a prototype in a school for deaf children in Chennai, India, sparking my interest in hearing and auditory processing. having worked in hearing science since 1996, I’d say a career highlight is receiving the National Science Foundation Career Award in 2013. It considers research as well as research/education integration, and I am passionate about both aspects. I also enjoy taking photos. Thinking about their composition makes me stop and look at a subject from multiple perspectives—I find that it’s not unlike examining research data.
Khaleel Razak, Ph.D.’s grant is generously funded by the General Grand Chapter Royal Arch Masons International. HHF thanks the Royal Arch Masons for their ongoing commitment to research in the area of central auditory processing disorders (CAPD).
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.
Cisco® 8851 Hamilton® CapTel® 840i
Hamilton® CapTel® 2400i
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/HHM419 The Hamilton CapTel phone requires telephone service and high-speed Internet access. Wi-Fi capable.
020519
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. 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.
Struggling with simple conversations and social situations?
YOUR HEARING AIDS MAY NOT BE ENOUGH. MED-EL offers the most advanced portfolio of hearing solutions to help thousands of people like you hear again. We can help you take the next step.
VISIT
JourneyToBetterHearing.com FOR YOUR FREE WELCOME KIT!
Most reliable system
Superior performance
Most natural hearing
JourneyToBetterHearing.com COCHLEAR IMPLANT SYSTEMS
|
ELECTRIC- ACOUSTIC SYSTEMS
|
MIDDLE EAR IMPLANT SYSTEMS
For information on potential risks and contraindications relating to implantation, please visit www.medel.com/us/isi-cochlear-implant-systems/