Winter 2021 A Publication of Hearing Health Foundation hhf.org/subscribe
The Technology Issue Changing lives through advances in science and research
h e a ri n g h e alt h fo u n dation
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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® is a registered trademark of Ultratec, Inc. The Bluetooth® word mark and logos are registered trademarks owned by Bluetooth SIG, Inc. and any use of such marks by Ultratec, Inc. is under license. (v2.6 10-19)
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The mission of Hearing Health Foundation (HHF) is to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health. HHF is the largest nonprofit funder of hearing and balance research in the U.S. and a leader in driving new innovations and treatments for people with hearing loss, tinnitus, and other hearing and balance conditions. As part of our outreach, we provide this quarterly magazine for free to our vibrant community of readers and supporters, as well as to the dedicated professionals who work with them. Please subscribe at hhf.org/subscribe and make a donation at hhf.org/donate.
Winter 2021: The Technology Issue Innovations in technology, both tried-and-true and brand new, improve the daily lives of those with hearing conditions.
Timothy Higdon, President and CEO, HHF
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HEARING HEALTH The Technology Issue
Publisher Timothy Higdon, President and CEO, HHF
Winter 2021, Volume 37, Number 1
Editor Yishane
Art Director Robin
Features
Senior Editors
06 Family Voices Quite a Journey. Sahar Reiazi 08 Living With Hearing Loss A Community, Shared. Michael Miles 10 Planned Giving Focusing People’s Minds. Michael Kassabian 12 Managing Hearing Loss Out of the Box. Michelle Pitts. What Hearing Aids and a Chicken Dinner Have in Common. Karl Strom. What If You Could Lease Your Hearing Aids? Shari Eberts 16 Legislation A View of the Hill. David M. Sykes
17 Advocacy Click Your Community Out of Online Scams. 18 T innitus Tinnitus Care 2.0. Hazel Goedhart and Markku Vesala 20 Technology Tech Specs. 22 Research 2020 Emerging Research Grants. 26 Meet the Donor Hearing the Passion. Joe Mussomeli 28 Research Going Virtual. Anat V. Lubetzky, Ph.D. 30 Research Recent Research by Hearing Health Foundation Scientists, Explained.
Departments
Sponsored
27 Hearing Health Foundation 2021 Reader Survey
32 Advertisement Tech Solutions.
34 Meet the Researcher Z. Ellen Peng, Ph.D. General Grand Chapter Royal Arch Masons International
33 Marketplace
Hearing Health Foundation and Hearing Health magazine do not endorse any product or service shown as paid advertisements. While we make every effort to publish accurate information, we are not responsible for the accuracy of information therein. See hhf.org/ad-policy.
Cover Sahar Reiazi holds a tablet displaying the book she wrote and illustrated about her son’s hearing journey, titled “My Cochlear Implants.”
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Amy Gross, Lauren McGrath
Medical Director David Staff Writers Shari
S. Haynes, M.D.
Eberts, Kathi Mestayer
Advertising hello@glmcommunications. com, 212.929.1300 Editorial Committee
Peter G. Barr-Gillespie, Ph.D. Judy R. Dubno, Ph.D. Christopher Geissler, Ph.D. Lisa Goodrich, Ph.D. Anil K. Lalwani, M.D. Rebecca M. Lewis, Au.D., Ph.D., CCC-A Jay R. Lucker, Ed.D., CCC-A/SLP, FAAA Joscelyn R.K. Martin, Au.D. Board of Directors
Chair: Col. John T. Dillard, U.S. Army (Ret.) Sophia Boccard Robert Boucai Judy R. Dubno, Ph.D. Ruth Anne Eatock, Ph.D. Jason Frank, J.D. Jay Grushkin, J.D. Roger M. Harris David S. Haynes, M.D. Elizabeth Keithley, Ph.D. Cary Kopczynski Anil K. Lalwani, M.D. Michael C. Nolan Paul E. Orlin Robert V. Shannon, Ph.D. Hearing Health Foundation 575 Eighth Avenue, #1201, New York, NY 10018 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 2691-9044, print; ISSN 2691-9052, online) is published four times annually by Hearing Health Foundation. Copyright 2021, 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.
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Quite a Journey Cochlear implants, and the kindness of hearing healthcare professionals, help a young boy and his family succeed. By Sahar Reiazi
Above: Sahar Reiazi’s children (from left) are Ghazal and twins Sina and Saghar. Sina’s profound bilateral hearing loss was confirmed when he was 1 month old. Opposite page: Sina’s surgeon in Sydney, Dr. Catherine Birman, stands with the painting of the ocean that Sahar painted for her in gratitude (far right). Sahar also painted the delphiniums, a favorite flower of the teacher who worked with Sina after he received cochlear implants (near right).
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I’m a mother of three wonderful children: Ghazal, age 6, and twins, Sina and Saghar, age 4. We’ve had quite a journey with hearing loss. It all began when our twins were born in 2016. We already had a daughter, then we were blessed with boy-girl twins! Life was hectic. I got all the help I could from a daytime nanny. My mother, sister, and husband Keyvan were also extremely supportive. In the hospital our daughter, Saghar, passed the otoacoustic emissions (OAE) test that checks newborn hearing, while our son, Sina, needed a follow up after failing his. The doctors indicated there might have been amniotic fluid left behind in his eardrums. Always an optimist, I didn’t give Sina’s test results a second thought. However, Keyvan has always been a realist. He was worried. He was right to be. As directed, we returned to the hospital with Sina when he was 1 month old. He failed the OAE test a second time. The staff scheduled him for an auditory brainstem response test (ABR) test. I was somewhat worried at this stage, but I just wanted to get the test finished with so the family would be at ease, feeling it was all a mistake and that Sina could hear. The day of the ABR test was one of the most defining moments for me in the process. The audiologist placed electrodes (sensor stickers) on Sina’s head as he was sleeping in his striped yellow and white onesie. I sat beside him. The audiologist shook her head. “Profound hearing loss in the left ear,” she announced. Then it hit me! I started crying silent tears. But I stayed hopeful, telling myself he definitely had typical hearing in his right ear. I knew he did, I thought, because he reacts when we make sounds. He reacts! The audiologist shook her head a second time and said, “Profound hearing loss in the right ear.” I was shattered. My face was wet from all the tears, the uncontrollable tears. The audiologist gave me a box of tissues. I picked Sina up as he was still asleep and couldn’t believe that I was so disconnected from him. I couldn’t believe he couldn’t hear my voice. In retrospect I realized he did have visual cues to react to sound. I had been feeling excessively hopeful in order to deny the truth. At age 6 months, Sina was fitted for hearing aids. I gained hope again, as I usually do. I identified an auditory-verbal therapist who was willing to come to our home and train us and Sina. We practiced and practiced. But Sina’s hearing declined. My husband, still the realist, said it was time to pursue what we had already been contemplating: “Sina needs cochlear implants.” And so we began to move forward with cochlear implants (CIs). I was raised in Sydney and am an Australian citizen, and I married my
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Our toddler’s surgeon looked into my eyes, with her own also filling with tears, and told me, “I know it is the hardest thing in the world to hand your son to me for surgery, but I promise, I will return him back to you safe and sound.” I felt a big weight lift off my shoulders. husband in Iran. Our children were all born in Iran and were granted Australian citizenship because of my citizenship. After Sina was diagnosed as a candidate for CIs, my husband and I decided to move to Australia to give Sina the best care. After a year we moved back to Tehran for our families and my husband’s job. The night before we met Dr. Catherine Birman, Sina’s surgeon in Sydney, I read that she had received the New South Wales Woman of the Year Award for her work in CIs in 2017. I was impressed but intimidated. We were sitting in her reception area when she walked by. She is a very tall, blonde woman with a serious face and professional attire. I was even more intimidated. The receptionist then called us and we walked into Dr. Birman’s office. This would become another defining moment for me. Immediately Dr. Birman smiled at us and thoroughly explained what was going to happen. She was so nice, which was not at all what I had anticipated. She asked me a question—I can’t remember what it was—and I broke down crying. She got up from behind her desk, made her way to where I was sitting, knelt beside me, and hugged me tightly. She looked into my eyes, with her own also filling with tears, and told me, “I know it is the hardest thing in the world to hand your son to me for surgery, but I promise, I will return him back to you safe and sound.” I felt a big weight lift off my shoulders. At age 22 months, Sina was implanted with his first implant, and received his second six months later. At the early intervention center in Sydney, we worked with Maree Rennie, a certified teacher of the deaf at the Royal Institute for Deaf and Blind Children. She is also an extraordinary woman, very patient and kind. When Dr. Birman walked out of surgery, I asked her
what her favorite scenery was, and she replied, “The ocean.” I said, “You used the art in your hands for my son, and I will use the art in my hands to paint the ocean for you.” And I did. It is now hanging in her office. I also asked Maree what her favorite flowers were, and she said delphiniums. So I painted her a vase full of delphiniums. Sina is doing great. He is still receiving weekly speech therapy sessions, which we do online now because of the pandemic. I work with him every day, and we all read books together. My husband uses every opportunity to talk to him and explain things to him, and Sina has the funniest conversations with his sisters. Sina is speaking English quite well and—to my surprise and joy—using phrases like “don’t interrupt me.” He is even starting to learn a second language, Farsi. It is a happy ending.
Sahar Reiazi is the author and illustrator of the children’s book “My Cochlear Implants,” which she has dedicated to “all the little ones with hearing loss.” To download the book, see srdawn.wixsite.com/ mycochlearimplants.
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A Community, Shared
An educator diagnosed with a hearing loss later in life finds meaning in sharing his experiences with those just starting on their hearing loss journey. By Michael Miles I was first diagnosed with mild hearing loss around 1999, when I was in my early 40s. At the time I was the CFO of a publicly held company and was attending a lot of board meetings. As the youngest officer of the company, I typically sat at the far end of the board table, away from where the CEO and chairman sat. However, I started noticing that I was missing a few words here and there, including one time when they were directed at me. So I gradually started moving toward the middle of the table at future meetings. But I didn’t think it was serious enough to get hearing aids. I went back to school in 2004 to become a math teacher and noticed I was not hearing a lot of the lectures clearly unless I was near the front of the class. My wife also had noticed a change in my hearing. So I went to an audiologist, and after reviewing my audiogram results she sent me to the ENT (ear, nose, and throat specialist) at her practice. The ENT requested a CT scan, and it turned out I had otosclerosis in both ears. Otosclerosis is a bony overgrowth in the middle ear that prevents the ear from hearing properly. Thought to have a genetic component, this cause of hearing loss is not that common and I next saw an otolaryngologist experienced in treating otosclerosis, Thomas Willcox, M.D., at Jefferson University Hospital in Philadelphia. The stapes bone in my left ear collapsed first, and I had a successful stapedectomy on that ear in June 2006 performed by Dr. Willcox. The stapes in the right ear collapsed in 2015 and another stapedectomy was done. I had to go back in a few months because I was hearing a clicking in the ear, but the surgeon corrected it and I was fine afterward. As a result of the otosclerosis, I have a mixed hearing loss, a combination of conductive (middle ear) and sensorineural (inner ear) hearing loss. The conductive loss has been handled pretty well by hearing aids. But the sensorineural loss has gotten worse and I have progressed to wearing the most powerful aids I can find to handle soft voices and noisy environments. When I was diagnosed, I knew no one personally with a hearing loss, so I was pretty much on my own for a few years. Then I learned about the Hearing Loss Association of America (HLAA) in my internet searches for hearing support or education groups. That was when my hearing loss world really changed. I started attending the HLAA’s annual convention, meeting others with hearing loss and learning about hearing-related products to help me. I joined a local chapter and the Pennsylvania office, so I now had support groups where I could ask questions and get advice. Little by little I learned more about my condition and the assistive technology to help me (my current favorites are the speech-to-text apps on smartphones). I became more involved with the HLAA, conducting outreach at senior events as well as giving presentations at senior centers. It was at an HLAA convention where I first heard someone from Hearing Health Foundation talk about the Hearing Restoration Project (HRP). I was hooked. I love learning about new technology and research and the potential for something to help us in the future. In October 2019 I came to New York City to attend the New York Academy of Sciences conference on the topic of hair cell regeneration, where Peter G. Barr-Gillespie, Ph.D., the head of the HRP, was the keynote speaker. More recently, this past October I watched HHF’s inaugural Hearing Health Hour webinar on age-related hearing loss. I 8
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promote HHF’s funded research in my presentations, as they are topics of interest, and I believe it gives our community hope for new treatments. If I had found a hearing loss community earlier on, I would have been more open with the students at the all-girls high school where I taught instead of trying to hide my hearing aids like I did for eight years. I wore in-the-canal models when I probably should have been using more powerful over-the-ear models due to the severity of my loss. Eventually because of my declining hearing, I decided to stop teaching, but my volunteer work with the HLAA and on hearing loss-related blogs allows me to continue to give back to the community. I am very happy trying to educate others who are in the same situation I was in, when I had no one to turn to for information or support. Like others with hearing loss I still sometimes have to fake being able to fully hear, but I have gained much more confidence and do not hesitate to ask people to recognize my hearing loss and make accommodations. I stay current on the newest technology for hearing loss and look forward to receiving this magazine to catch up on the HRP’s research efforts and each year’s new Emerging Research Grants scientists. I am lucky that after my initial diagnosis I didn’t ignore my hearing loss for too long and was able to treat it. It pains me to hear of those who have had hearing problems for years yet procrastinate about getting treated using hearing aids, or who cannot afford them. Cost is a big stumbling block and I hope that Congress wakes up to the needs of such a large part of our society, especially seniors, whose everyday lives are affected by this hidden disability. With the research being funded by HHF and the new technology being made available to those with hearing loss, I am confident that the quality of life for people with all levels of hearing loss will continue to improve.
Michael Miles lives in Pennsylvania.
My volunteer work allows me to give back to the community. I am very happy trying to educate others who are in the same situation I was in, when I had no one to turn to for information or support. Thanks to research and technology, I am confident that the quality of life for people with hearing loss will continue to improve.
Share your story: Tell us your hearing loss journey at editor@hhf.org.
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f o c u s i n g People’s Minds Need to create or update your estate plan? The pandemic is one great reason to finally get it done. By Michael Kassabian In April 2020, CNBC reported a surge in the demand for wills and estate planning services due to the escalation of the COVID-19 pandemic. According to a representative from a financial advisory firm quoted in the article, the lockdown “focused people’s minds” on an area of planning that is often neglected. For context, nearly 70 percent of American adults don’t have an updated legal will. With social distancing measures, many people began turning to online estate planning tools, which allow a user to create a legal will online by answering a series of questions. In an August 2020 article, Forbes noted a rise in this do-ityourself approach to will writing, both from a safety and ease-of-use standpoint. Creating or updating a will has also focused attention on one’s legacy. In addition to an increased interest in estate planning, charitable gifts in estate plans have also seen a sharp increase over the past year. Online estate planning service FreeWill, which partners with Hearing Health Foundation to help create wills online for free, saw a significant uptick in charitable bequests to a variety of nonprofit organizations in addition to the number of wills created. In August alone, for example, the number of wills created on the FreeWill site nearly doubled and the number of charitable bequests increased nearly fourfold. These trends speak to the way that nonprofit organizations have adapted to changing times, as well as the increased role technology is playing in this sector. Charity review sites like Guidestar and Charity Navigator make it easier than ever for supporters to research their favorite charities, as they enforce transparency and credibility among nonprofits. Users can now easily access information about fiscal efficiency to ensure their gifts are used responsibly. Because so much of our daily life is conducted online—including researching charities and donating to them—it’s not surprising that Philanthropy News Digest reported a steady increase in the rate of online giving over the past few years. As the COVID-19 pandemic lingers, technology continues to play a greater role than ever in how we interact, work, and support our favorite causes. It stands to reason that these trends of increased transparency, credibility, and ease of use—both for online estate planning and charitable giving in general—are set to persist long into the future. If you’re interested in learning more about FreeWill and their online estate planning services, HHF supporters can visit freewill.com/hhf to get started on creating a will for free, with the option to include a legacy gift to support those with hearing loss and tinnitus, for generations to come.
Michael Kassabian is a content associate at FreeWill. If you already have a will and want to update it, you can use your attorney or you can use FreeWill to create a new will for free, destroying the old document to prevent confusion. For more, see freewill.com/hhf or email development@ hhf.org. For references, see hhf.org/winter2021-references.
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Technology continues to play a greater role than ever in how we interact, work, and support our favorite causes. These trends of increased transparency, credibility, and ease of use—both for online estate planning and charitable giving in general—are set to persist long into the future.
Support our research: hhf.org/donate
6 Ways to Make an Impact Today and Tomorrow You can make a meaningful difference in hearing loss research. Whichever method below you choose, every gift to Hearing Health Foundation (HHF) counts.
The De Francescos named HHF in their estate plans.
Check or credit card gifts online or by mail are easy and immediate. For more of an impact, schedule a monthly gift that helps sustain research without interruption.
If you are in possession of life insurance policies that you no longer need, you can designate HHF as the beneficiary.
Donating appreciated stock can reduce your tax bill. You receive a charitable tax deduction for the full value of the stock, and avoid paying taxes on the stock as it appreciates.
IRA distributions that begin when you turn 70 1/2 can be taxed as income, but if you choose to donate them to HHF, you avoid the penalty.
A charitable bequest in your will can be a more substantial gift if you are unable to donate today. If you do not have a will, create one for free at freewill.com/hhf.
Retirement plan benefits left to heirs are more highly taxed than other assets. Make a meaningful gift to HHF instead, leaving lower-taxed assets to loved ones.
This publication is made possible through the generous support of readers like you and our advertisers. To learn more, visit hhf.org/how-to-help, email development@hhf.org, or call 212.257.6140.
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Out of the Box The hunt for a successful hearing solution leads to greater self-knowledge and empathy. By Michelle Pitts
Michelle Pitts with her husband Adam and their sons Elijah and Jack.
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I have been struggling with my hearing for quite some time, but finally made the decision to do something about it now, in my early 40s. Even though I work with individuals with disabilities, starting the process of treating my hearing loss feels like I’ve been thrown into a new world about which I know so little. After my hearing test and official diagnosis, I was shown a few hearing aid models to choose a pair. Simple, right? So I thought. Over the course of a few minutes, my audiologist tried to explain the different technological features, colors, and brands available. I knew that agreeing to one of her suggestions would also be an agreement to thousands of dollars of my family’s healthcare savings. I felt guilty and sick to my stomach about spending this money if, God forbid, a bigger health emergency came up. Making such a big purchase felt like rolling the dice. I still knew almost nothing about the hearing aid options and I felt like I wasn’t given enough clarity on the matter. With every hearing aid brand making similar claims about their technology, it’s difficult to be sure you’re making the right choice for your hearing loss. Testing pairs of hearing aids wasn’t easy for me, either. “How’s that sound?” my audiologist would ask after putting them in my ears. And I’d just think, I have no idea! Only a few seconds have passed, and this is a quiet room with only one other person in it. Then I’d leave the office and everything sounded harsh, giving me a headache, and then I’d be at home having a difficult time understanding my kids. I tell myself, So maybe this will be harder than I expected, with trial and error adjustments. And maybe I need to do some of my own research to find the best technology for my ears. I dug into the technology offerings from each brand using their data sheets, only to find that often the features I desired were not available for my preferred style of hearing aid. And back to square one I’d go. Eventually I discovered an exceptionally helpful internet forum. It contains users’ personal experiences with various aids, technology information, links to data sheets, and definitions of technical terms. One of the terms I came across on the forum was a “cookie bite.” Someone wrote in a comment to another user, “Since you have a cookie bite, it’s more difficult to fit you with hearing aids. You need to find a very well-trained audiologist to handle your type of hearing loss.” What’s a cookie bite? I wondered. Down the internet rabbit hole I
managing hearing loss
When some people who have hearing loss won’t wear their hearing aids, chances are their devices don’t fit right, they are uncomfortable, or they are incorrectly programmed for their hearing loss—or any combination of these reasons. If this is you, please know that things can be much better after your audiologist works with you to adjust your hearing aid programming so you can hear better. went—and found that a cookie bite is a midrange frequency hearing loss, and the audiogram is shaped like a bite taken out of a cookie. Wait a minute! I grabbed my audiogram, and lo and behold, I have a midrange frequency loss. So what does this mean? Midrange frequency loss is a type of sensorineural hearing loss that is genetic. It is present from birth, but usually isn’t severe enough to be noticed until someone is in their 20s or 30s. The midrange is where sounds like speech and music occur. Usually hearing loss is more prominent in the high frequencies or the low frequencies, like what my parents and my brother have. Learning more about my hearing loss has prompted significant recent revelations about my life, too. Now I know why I have such a hard time understanding speech sometimes. I see why I miss a lot of lyrics in music and dialogue in movies. I can even remember being at a wedding reception in my 20s when someone asked me, “Isn’t this your favorite song?” All I could hear was the thump of the bass. I was pretty amazed that they could hear the song, and they were pretty amazed that I couldn’t. I think that was one of the first times I started to question if I had a problem. I usually have to turn the radio down in my husband’s car or tell my kids to lower the TV volume because I can’t handle the noise. Noise drives me crazy, and sometimes I think I’m turning into my mother. But now I know that it’s actually loud high frequency and occasionally low frequency sounds that drive me crazy, because these correspond to my hearing loss. And I can pretty much forget about being able to understand someone if there are multiple, competing sound sources. While I’ve wanted to throw in the towel several times on the whole hearing aid business, I have been working with my audiologist to help me find a pair that will work for me, in part by using real ear measurements, a way to directly measure the sound that hearing aids produce in the ear canal.
Now I can understand when some people who have hearing loss won’t wear their hearing aids. Chances are their hearing aids don’t fit right, they are uncomfortable, or they are incorrectly programmed for their unique hearing loss—or any combination of these reasons—and they can’t hear right. If this is you, you should know that things can be much better after your audiologist works with you to adjust your hearing aid programming. I’m learning to advocate for myself while also better understanding what my clients experience, so that we can overcome our challenges together. My clients often come in and don’t know what services are available for them or what technologies are available that can help them. These things can change their lives, but sometimes service providers don’t take the time to educate their clients or don’t keep up to date themselves. I try to make sure I pass along any of this information because I too have experienced the difficulties of navigating a disability.
Michelle Pitts is an instructor for vocational rehabilitation with the state of Tennessee. After primarily working with people with vision loss, Pitts’ role has expanded to include people with all types of disabilities who are seeking to enter or re-enter the workforce through vocational rehabilitation.
Share your story: Are you new to hearing aids? Tell us your hearing loss journey at editor@hhf.org.
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What Hearing Aids and a Chicken Dinner Have in Common By Karl Strom
Hearing aids can cost thousands of dollars for many reasons: the research and development that goes into advanced hearing aids, the associated professional investments and service costs, the relatively small number of hearing aids manufactured, the demand for customizable hearing solutions, and more. However, the advent of personal amplification products, Big Box options, and straight-to-consumer hearing devices have made price sensitivity an even larger issue. To illustrate why hearing aids dispensed by audiologists are more expensive than if purchased online, Washington University in St. Louis clinician-researcher Michael Valente, Ph.D., uses the example of buying a chicken dinner three different ways: 1) a $5 grocery store frozen chicken; 2) a $10 cooked rotisserie chicken; and 3) a $30 chicken cooked and served in a nice restaurant.
Numerous studies show that hearing aid price, while certainly not the only factor, remains a major obstacle in obtaining appropriate hearing care. It’s the same meal, but you must do more work for the least expensive option, while the most costly is served to you on a platter. There is value and benefit in a hearing aid fit with best practices, but that value and benefit comes with necessary associated costs. Numerous studies show that hearing aid price, while certainly not the only factor, remains a major obstacle in obtaining appropriate hearing care. According to hearing aid website Hearing Tracker, the average price of a hearing aid is about $2,500. A July 2020 survey by senior resources website Senior Living shows that cost (38.2 percent of survey respondents) is the second most important reason for not adopting hearing aids (after “Can manage without one” 14
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at 56.9 percent of respondents). One issue: “There’s no single standard across the country for whether hearing aids are covered by health insurance,” the report says. As a result, hearing aid financing is becoming more common. Ask your hearing care practice if hearing aids can be purchased using low- or no-interest monthly payments. Some financial services companies offer long-term, low-payment financing options that you can apply to hearing aid purchases. (You can also explore using a health savings or flexible spending account to save on taxes.) Hearing care professionals are increasingly carrying a wider selection of hearing aid products, including more economy and basiclevel hearing aids. They are also unbundling their prices and may offer optional service packages as add-ons, to separate out and reduce the overall “device cost.” You may be able to purchase amplification online (a precursor to the Food and Drug Administration’s eventual over-the-counter hearing aids category) on your own or even at a hearing provider with the provider fitting the device and charging for fittings and/or followups. The provider may also give the option of applying all or part of the device cost toward the purchase of a traditional hearing aid later on. The bottom line is that financing options and lower-priced hearing devices are available and can be viable solutions. Just ask your provider and if needed, ask more than one. And then go ahead, treat yourself to dessert afterward.
Karl Strom is the editor of the hearing professionals journal The Hearing Review, from which this article is adapted. For more, see hearingreview.com. For references, see hhf.org/winter2021-references.
managing hearing loss
What If You Could Lease Your Hearing Aids?
By Shari Eberts
The growing popularity of auto leasing makes sense to me. You get the benefits of ownership without putting all the money down. You enjoy the use of the car while you pay over time. Leases also often include regular maintenance and if something breaks or goes wrong, repairs are usually covered too. For time-consuming repairs, a replacement car may be provided. After a few years, your lease ends and you are free to swap into a newer model with all the latest bells, whistles, and safety features. Or you can choose a different brand of car altogether. You have ultimate flexibility. What if you could do this with hearing aids? Here are some issues to consider. Hearing aids are often custom fit. Hearing aids are highly personal items, typically custom-made to fit your specific ear—especially those worn in the ear canal. This could make them hard to repurpose for another user. But, there is the growing popularity of open-fit, behind-theear models. Even when used with custom ear molds, the behind-the-ear devices are fairly standard and could likely be repurposed for another user quite easily. Complexity may temper ease of upgrade. Hearing aids are highly sophisticated devices, programmed to meet your specific hearing challenges. Things sound differently through each pair of hearing aids, so it often takes time and energy to get used to them. Swapping to a new pair every two or three years may not be desirable. Hearing loss can also change over time, making a different type or brand of device more appropriate. This would make the flexibility of a lease attractive, but it could also add complexity if the lease was tied to a particular manufacturer. Industry structure would need updating. Sometimes old hearing aids are collected and repurposed for markets in developing countries, but less so in the U.S. Given the high price of hearing aids, a used-device option—assuming they can be reprogrammed and updated with fresh ear molds—could be an exciting new market especially for first-time users put off by the typical cost. Today, a few alternative hearing aid purchase models do currently exist. For example, Phonak’s Lyric hearing aids are sold as a subscription, although the “rental” is paid annually and the cost can compare to buying a new device.
Hearing loss can change over time, making a different type or brand of device more appropriate. This would make the flexibility of a lease attractive, but it could also add complexity if the lease was tied to a particular manufacturer. Audicus, an online hearing aid company, offers a “membership model” option. Users pay a nominal monthly fee entitling them to hearing aids, batteries, insurance, and the ability to upgrade to new devices every 18 months. Another new entrant, Whisper, recently launched a subscription model product that includes ongoing care from a local audiologist, regular software upgrades, and a three-year warranty. Telehealth is becoming more prevalent with COVID-19 health practices in place, and some audiologists already offer financing for hearing aids. It could be time to consider a leasing model option as well.
Shari Eberts serves on the Board of Trustees of the Hearing Loss Association of America and is a past chair of HHF’s Board of Directors. A version of this originally appeared on her blog, livingwithhearingloss.com.
Share your story: Are you new to hearing aids? Tell us at editor@hhf.org. Support our research: hhf.org/donate
a publication of hearing health foundation
winter 2021
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legislation
h ear i n g health foundation
A View of THE HILL
Let’s watch what 2021’s blue, red, and purple changes on Capitol Hill will bring to hearing health. By David M. Sykes
Share your story: Have you taken a stand against noise? Tell us at editor@hhf.org.
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hearing health
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David M. Sykes leads several professional organizations in acoustical science, including the Quiet Healthcare Council and the Quiet Coalition, both programs operated by Quiet Communities Inc., and the Facility Guidelines Institute Acoustic Advisory Committee, which he wrote about in the Fall 2020 issue of Hearing Health, at hhf.org/magazine. For references, see hhf.org/winter2021-references.
photo credit: m. ascher 2019
It’s worth noting that the 2018 Federal Aviation Administration Reauthorization Act approved several new, potentially noise-causing transportation systems: drone deliveries, air taxis, and “vertiports”— vertical-takeoff airports for these drones and taxis to use.
The history of hearing health legislation has been one of flip-flops. In 1981 a White House executive order abruptly ended funding for research, shuttered the Environmental Protection Agency’s scientific and regulatory work on noise control, and halted momentum that had been building since 1968, when U.S. Surgeon General William H. Stewart first called for action on noise pollution. But the ground shifted again a decade ago, when interest in hearing health began to climb again, due to a convergence of research breakthroughs, technological innovation, crowdsourced funding, and regulatory changes. This forward motion led to two federal reports—from the President’s Council of Advisers on Science and Technology in 2015, and from the National Academy of Medicine in 2016—which led to the passage of the WarrenGrassley Over-the-Counter Hearing Aid Act in 2017. It created a new Food and Drug Administration category of hearing devices available without prescription. Also, the McBath-Dingell Medicare Hearing Aid Act passed Congress in 2019 and is also meant to ease the cost of treating hearing loss. Yet the actual implementation of these two pieces of legislation continues to languish. With the 117th Congress starting Jan. 3, 2021, let’s keep our eyes on two congressional groups focused on hearing health. First, watch the chairs and members of the Congressional Hearing Health Caucus and the private-sector and nonprofit organizations that support them, including Hearing Health Foundation. With bipartisan cochairs, this caucus is well-positioned to get stuff done. The Republican is an engineer, Rep. David McKinley (R-WV)—and he wears a cochlear implant. His cochair is Rep. Mike Thompson (D-CA). As a representative of parts of Silicon Valley, Thompson will be aware of the technologies driving change in assistive devices. Second, let’s watch the chairs and 50 members of the Congressional Quiet Skies Caucus and their regional support groups, called the National Quiet Skies Coalition. The four caucus chairs are Reps. Eleanor Holmes Norton (D-DC), Stephen Lynch (D-MA), Tom Suozzi (D-NY), and Mike Quigley (D-IL). In February 2020, the coalition expressed disappointment about the Federal Aviation Administration’s lack of initiative in mitigating airplane noise, as part of the 2018 FAA Reauthorization Act. This act also approved other potentially noise-causing transportation systems: drone deliveries, air taxis, and “vertiports”—vertical-takeoff airports for these drones and taxis to use. Many, many other federal agencies have a hand in controlling noise pollution and promoting hearing protection, and we will continue to monitor progress. We are hopeful that this past decade’s increased awareness of the harmful effects of noise not just to hearing but to overall health will continue to push forward hearing-friendly legislation.
advocacy
Click Your Community Out of Online Scams “Let me tell you how I became the victim of fraud in the last way I ever expected. It started when my friend, Joe, who I’ve known for years and who is also Deaf, passed along some investing tips he received from someone in our Deaf meetup group on a social networking app.” Learn more in an investor video, told in American Sign Language with captioning and animation, from the U.S. Securities and Exchange Commission’s Retail Strategy Task Force (sec.gov/news/sec-videos/protecting-deaf-and-hearing-loss-communitiesinvestment-scams). The video and a recent SEC case affecting Deaf community members (sec.gov/news/press-release/2020-232) share important information about how members of Deaf, hard of hearing, and hearing loss communities can avoid investment scams. Block Online Affinity Fraud
We all have communities that play important parts in our lives. Especially now more than ever, we rely on technology and virtual communities for support, information, connection to others, and access to opportunities. Unfortunately, fraudsters see online communities as places to exploit tight-knit groups, relationships of trust, and communication barriers. The U.S. Securities and Exchange Commission (SEC) calls group-targeted frauds community-based fraud or affinity fraud. Fraudsters are always adapting their fraud and exploiting vulnerabilities to undermine investor protections. For example, in a past SEC case fraudsters targeted Deaf investors at Deaf community centers, but online tactics may include posing as a member of a group or recruiting group members through websites, email, social media, and other online environments. A friend or community member who tells you about an investment opportunity may not know it is a fraud and may have invested themselves, so know the warning signs. To avoid scams look out for high investment returns, promises of false riches, high-pressure sales tactics, short deadlines to invest, and pressure to send payments abroad or to unknown individuals or entities—these are all hallmarks of fraud. In the SEC video, Joe and his friend learn that when someone offers you an investment opportunity, it’s best to verify the investment professional is registered, research the investment, keep records about the investment and your communications, and report potential investment fraud to the SEC.
Click to Empower and Protect Your Community
The SEC’s Investor.gov website has free, easy-to-use online tools and resources for investors. You can research certain companies and investment products on the SEC’s EDGAR database, which provides free access to corporate information. Questions? Call the SEC’s Office of Investor Education and Advocacy (OIEA) at 800.732.0330, access sec.gov/oiea/QuestionsAndComments.html, or email help@sec.gov; and follow OIEA’s social media at investor.gov/follow-us. Remember, taking the time to learn more about an investment, and the person offering it, may save you or a member of your community from online investment scams.
This article was provided by the U.S. Securities and Exchange Commission (SEC). The SEC disclaims responsibility for any private publication or statement of any SEC employee or Commissioner. This article expresses the authors’ views and does not necessarily reflect those of the Commission, the Commissioners, or other members of the staff.
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a publication of hearing health foundation
winter 2021
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tinnitus
h ear i n g health foundation
Tinnitus Care
2.0
“Don’t look online.” This is often a warning from healthcare professionals. The premise is that the internet is a dangerous place full of doom and misinformation, potentially making you feel more worried and alarmed. Still, people often seek help online because they may have nowhere else to turn. They may lack a community that understands their problem. This is particularly true for people struggling with tinnitus, or the experience of hearing ringing or buzzing without an external sound source. There is no cure for tinnitus, and current treatment options offer, at best, management of the condition. At Tinnitus Hub, a U.K.-based nonprofit with a global reach that is led by volunteers who all have tinnitus, we believe in the power of online communities to connect with others and provide support. More than that, we believe that online communities can be influential players with the power to change the future of tinnitus research and care.
The Struggle to Cope
If you visit your general practitioner, audiologist, or ENT (ear, nose, and throat specialist) for help with your tinnitus, they are likely to utter some variation of “you’ll need to learn to live with it.” That is easier for some than for others. In a 2020 online survey we conducted, we found
Tinnitus research is a small field. According to a 2019 analysis, other neurological conditions such as depression and anxiety receive more funding and attention.
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Tinnitus patients find support online while providing valuable data for future research. By Hazel Goedhart and Markku Vesala
that 30 percent of people seeking help on the internet for their tinnitus have had tinnitus-related suicidal thoughts. This is a scary statistic, telling us that “learning to live with it” can mean a few months until habituation for some—yet seem like a near-impossible task for others. Those who are struggling with their tinnitus deserve more effective treatments than currently available. In the absence of that, counseling can help to cope, but inevitably many will seek solace online, where they may encounter shady scams, unstructured social media groups, and overpriced “cures.” Recognized tinnitus associations can offer resources, but may not have a community aspect. This is where Tinnitus Talk comes in, the community arm of Tinnitus Hub. Tinnitus Talk is the largest online tinnitus support forum, with over 32,000 registered members around the world and millions of annual unique visitors. Having managed the forum since 2011, we truly believe it fulfills a key role by offering peer-to-peer support for tinnitus sufferers. After a sophisticated language analysis of a random sample of nearly 3,000 posts in the Tinnitus Talk Support Forum over four months (late 2019 to early 2020), a computer science graduate student found that the vast majority of discussions have a neutral or positive sentiment. People may vent their frustrations, but they also lift one another up.
tinnitus
We always encourage Tinnitus Talk forum users to filter advice and information from other users wisely, and we are working with researchers and clinicians to provide objective, evidence-based information to balance out the multitude of voices and opinions on the forum. For instance, in our 2018 survey 58 percent of respondents found advice from other users helpful, but 29 percent found the advice can be conflicting. While we always encourage users to filter advice and information from other users wisely, we are working with researchers and clinicians to provide objective, evidence-based information to balance out the multitude of voices and opinions on the forum.
graph credit: frontiers in neuroscience, aug. 6, 2019
Boosting Data Collection
We realized some years ago that online communities can do more than just provide peer-to-peer support. In fact, they contain a wealth of potential data for research. Hence, we started collaborating with qualified researchers wanting to mine Tinnitus Talk for data or recruit study participants. We also began to collect our own datasets, focusing on topics that are important to those who have tinnitus. Using our online surveys, we have been aiming to achieve the highest response rates ever in tinnitus research. Since 2016 we have conducted five surveys, about once a year, with responses ranging from 1,800 to 8,000-plus. We have shared our data with interested academics, co-authored on multiple academic papers, and also provided articles like this one to interested patients and professionals. We are now looking at how to take our data gathering to the next level by building a database to collect longitudinal data, following a group of people over a longer period of time. This could enhance insights into how tinnitus changes over time and which factors affect any changes.
Steering Research
Tinnitus research is a small field. According to a 2019 analysis in Frontiers in Neuroscience, other neurological conditions such as depression and anxiety receive more funding and attention. We want to make sure that the limited resources available for tinnitus research are spent wisely and meet the needs of those who suffer from tinnitus. To this end, we have taken up the concept of Citizen Science, involving ordinary people in science, not just as research subjects but as active participants or even co-creators.
Our surveys indicate the type of academic research we want to stimulate with our data collection—that is, cure-focused research, mainly studies that uncover the underlying mechanisms of tinnitus and/or identify effective treatments. In addition, results from a Tinnitus Talk poll demonstrated a desire for more involvement in the earliest stages of research, determining the priorities of new research projects. We formed our own Patient Expert Panel to collaborate directly with researchers. The panel has worked with, among others, Will Sedley, M.D., Ph.D., of Newcastle University in the U.K., advising him on a new research project related to predictive brain processing and tinnitus. We also asked Tinnitus Talk users to vote on newly published tinnitus research papers to help indicate which area they find most meaningful to their own experience. We have so far conducted two pilot votes of papers on a wide range of topics (e.g., causes, related conditions, treatments), and will be communicating our results to the research community. The hope is that this will make tinnitus research even more driven by the needs of those afflicted. Thanks to technology and greater connectivity, online communities will only grow in number and force, and we hope to continue harnessing these forces to the benefit of people with tinnitus.
Hazel Goedhart is a director and the chief strategist for the U.K.-based organization Tinnitus Hub, founded by Markku Vesala. For more, see tinnitushub.com and tinnitustalk.com. For references, see hhf.org/winter2021-references.
Share your story: Tell us your tinnitus journey at editor@hhf.org.
Support our research: hhf.org/donate a publication of hearing health foundation
winter 2021
19
technology
h e ar i ng health foundation
Tech Specs Tracking Data From the Ears
Custom-fit ear devices, such as earphones and hearing aids, can be three-dimensionally printed. Scientists have also 3D printed prosthetics for the tiny bones in the middle ear.
AI Artificial intelligence, sometimes termed machine learning, is transforming hearing technology, such as in the software hearing devices use, the smartphone apps that work with them, and in clinicians’ diagnostic evaluations.
VR/AR Glasses using virtual or augmented reality may soon allow you to look toward and focus on a sound and then enhance it, while lowering background noise. One prototype combines an in-ear monitor with an eye-movement tracking device to “zoom in” on a sound.
Consumer Devices Get a Boost
Consumer earbuds today not only stream audio from smartphones and computers but can also amplify live sound. Could the chips that power these earbuds also run accurate hearing tests and help users compensate for mild to moderate hearing losses? The answer is yes. The Belgian company Jacoti recently announced that its suite of hearing software technology—registered with the Food and Drug Administration as a medical hearing aid—can indeed run on the same chips used in many consumer wireless earbuds. (Full disclosure: I consult for Jacoti.) In the near future, you will be able to buy new earphones and use them to take a clinically valid hearing test in any quiet room. The results will be used to personalize the sound of your earphones based on traditional audiological practices. Your audiologist will be able to access your hearing tests to fine-tune the sound to your ears. While companies like Apple currently offer hearing personalization, it is based more on consumer preferences than audiology. Combining consumer hardware with audiological science and medical regulations promises to help make treating hearing more affordable and accessible. —Richard Einhorn
IDTechEx is a U.K.-based, business intelligence firm that focuses on emerging technologies. For its full report, see idtechex.com/hearables. New York City composer and producer Richard Einhorn is a well-known advocate for better hearing health technology and a consultant for Jacoti and other companies. For references, see hhf.org/winter2021-references. 20
hearing health
hhf.org
illustrations credit: istockphoto.com/-victor-
3D
Roughly one in five Americans now wears a fitness or activity tracker, according to a January 2020 survey by the Pew Research Center. While today most are commonly worn on the wrist, future biosensors may make use of the ear because of its unique window into the body’s functions. The ear is the ideal portal for data on heart rate, blood oxygen levels, movement, temperature, eye movements, skin resistance, stress hormone levels, and brain electrical activity, according to Poppy Crum, the chief scientist at Dolby Laboratories and an adjunct professor at Stanford University, in the journal IEEE Spectrum. The ear canal has a shallow, rich, capillary bed which makes it suitable for noninvasive monitoring (like heart rate). Placing sensors in the ear brings them closer to the body’s core, giving better measurements for body temperature. And the ear is close to important signals such as brainwaves, eye movement, speech recognition, and head tracking. Comfortable, unobtrusive, ear-worn biosensors may help boost medical monitoring of chronic conditions as well as general diet and fitness, along with larger crowd-based studies such as drug efficacy trials and noise pollution monitoring. —IDTechEx
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research
2020 Emerging Research Grants The seven Emerging Research Grants (ERG) recipients for the year E M E R G I N G starting October 2020 were chosen following a rigorous review by R E S E A R C H Hearing Health Foundation’s Scientific Review Committee and Council GRANTS of Scientific Trustees, comprising senior expert scientists and physicians from across the U.S. Starting with this 2020–2021 ERG cycle, HHF is increasing the available annual amount per project to $50,000 and will also make grants renewable for a second year. We look forward to learning about the advances these promising researchers will undoubtedly make in the coming year and beyond. James Dewey, Ph.D.
University of Southern California Project: Filtering of otoacoustic emissions: a window onto cochlear frequency tuning Description: Healthy ears emit sounds that can be measured in the ear canal with a sensitive microphone. These otoacoustic emissions (OAEs) offer a noninvasive window onto the mechanical processes within the cochlea that confer typical hearing, and are commonly measured in the clinic to detect hearing loss. Nevertheless, their interpretation remains limited by uncertainties regarding how they are generated within the cochlea and how they propagate out of it. Through experiments in mice, this project will test theoretical relationships that suggest that OAEs are strongly shaped (or “filtered”) as they travel through the cochlea, and that this filtering is related to how well the ear can discriminate sounds at different frequencies. This may lead to novel, noninvasive tests of human cochlear function, and specifically frequency discrimination, which is important for understanding speech. Long-term goal: To understand the mechanical amplification processes within the cochlea that provide typical hearing, and to develop objective, noninvasive tests of cochlear hair cell function for the early detection, differential diagnosis, and prevention of hearing loss. Dewey received his doctorate in communication sciences and disorders from Northwestern University in Illinois. He has since been a postdoctoral research associate, first in the otolaryngology–head and neck surgery department at Stanford University, and currently at the University of Southern California.
Mishaela DiNino, Ph.D.
Carnegie Mellon University Generously funded by the Meringoff Family Foundation Project: Neural mechanisms of speech sound encoding in older adults Description: Many older adults have trouble understanding speech in noisy environments, often to a greater extent than their hearing thresholds would predict. Age-related changes in the central auditory system, not just hearing loss, are thought to contribute to this perceptual impairment, but the exact mechanisms by which this would occur are not yet known. As individuals age, auditory neurons become less able to synchronize to the timing information in sound. This project will
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hhf.org
research
examine the relationship between reduced neural processing of fine timing information and older adults’ ability to encode the acoustic building blocks of speech sounds. Limited capacity to code and use these acoustic cues might impair speech perception, particularly in the presence of background noise, independent of hearing thresholds. The results of this study will provide a better understanding of how the neural mechanisms important for speech-in-noise recognition may be altered with age, laying the groundwork for development of novel treatments for older adults who experience difficulty perceiving speech in noise. Long-term goal: To identify neural mechanisms that contribute to older adults’ challenges perceiving speech in noise, leading to development of therapeutic techniques that accentuate the particular aspects of the auditory signal that are not well-encoded in the central auditory system of older adults. DiNino received her doctorate in neuroscience from the University of Washington. She is currently a postdoctoral fellow in the department of psychology at Carnegie Mellon University, Pennsylvania.
Z. Ellen Peng, Ph.D.
University of Wisconsin-Madison Generously funded by the General Grand Chapter Royal Arch Masons International Project: Investigating cortical processing during comprehension of reverberant speech in adolescents and young adults with cochlear implants Description: Through early cochlear implant (CI) fitting, many children diagnosed with profound neurosensorial hearing loss gain access to verbal communications through electrical hearing and go on to develop spoken language. Despite good speech outcomes tested in sound booths, many children experience difficulties in understanding speech in most noisy and reverberant indoor environments. While up to 75 percent of their time learning is spent in classrooms, the difficulty from adverse acoustics adding to children’s processing of degraded speech from CI is not well understood. In this project, we examine speech understanding in classroom-like environments through immersive acoustic virtual reality. In addition to behavioral responses, we measure neural activity using functional near-infrared spectroscopy (fNIRS)—a noninvasive, CI-compatible neuroimaging technique, in cortical regions that are responsible for speech understanding and sustained attention. Our findings will reveal the neural signature of speech processing by CI users, who developed language through electrical hearing, in classroomlike environments with adverse room acoustics. Long-term goal: To understand the impact of profound childhood hearing loss treated by cochlear implants on both behavioral outcomes and neural mechanisms involved in understanding speech in adverse auditory environments. This work will add to our knowledge in developing personalized clinical device fitting strategies for children with hearing loss to enhance communication and learning in realistic indoor environments. Peng received her doctorate in engineering from University of Nebraska–Lincoln. She completed her first postdoctoral fellowship as part of the European Union–funded Marie Curie Initial Training Network at the RWTH Aachen University in Germany. She is now a research associate at the Waisman Center and lecturer at the department of communication sciences and disorders, both at the University of Wisconsin–Madison.
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research
Pei-Ciao Tang, Ph.D.
Indiana University
Project: Elucidating the development of the otic lineage using stem cell–derived organoid systems Description: One of the main causes of hearing loss is the damage to and/or loss of specialized, cochlear hair cells and neurons, which are ultimately responsible for our sense of hearing. Stem cell–derived 3D inner ear organoids (lab-grown, simplified mini-organs) provide an opportunity to study hair cells and sensory neurons in a dish. However, the system is in its infancy, and hair cell–containing organoids are difficult to produce and maintain. This project will use a stem cell– derived 3D inner ear organoid system as a model to study mammalian inner ear development. The developmental knowledge gained will then be used to optimize the efficacy of the organoid system. As such, the results will progress our understanding of how the inner ear forms and functions, with the improved organoid system then allowing us directly to elucidate the factors causing the congenital hearing loss. Long-term goal: To advance our understanding of human inner ear development, which is critical for studying and understanding congenital disorders, while also establishing a robust, high-yield protocol for both mouse and human stem cell–derived 3D inner ear organoid systems that can be used to study inner ear development and disease, and to advance regenerative medicine for combating hearing loss and high-throughput drug screening. Tang received her doctorate in biology from the University of Louisiana at Lafayette, followed by postdoctoral research at the Indiana University School of Medicine. She is an assistant research professor in the department of otolaryngology–head and neck surgery at the Indiana University School of Medicine.
Bryan Ward, M.D.
Johns Hopkins University Project: The effect of fluid volume on vestibular function and adaptation in patients with Ménière’s disease Description: Individuals with Ménière’s disease experience spontaneous attacks of spinning vertigo, ear fullness, tinnitus, and hearing loss. We do not know the pathophysiology of Ménière’s disease. On some tests of the inner ear, individuals with Ménière’s have responses indicating inner ear balance is not functioning well (absent caloric responses), but other tests suggesting it is (head impulse testing). The reason for this is debated. Strong magnetic resonance imaging (MRI) scanners cause dizziness and nystagmus (back-and-forth beating of the eyes from inner ear stimulation) in all healthy humans due to magnetic vestibular stimulation (MVS). The combination of MVS and MRI imaging provides a unique opportunity to better understand the physiology of patients with Ménière’s disease. This project will assess nystagmus in strong MRI machines in individuals with Ménière’s and compare this to tests of vestibular function and to imaging of the inner ear. Long-term goal: To identify novel treatable diseases of inner ear vestibular disorders and to better understand the pathophysiology of diseases such as Ménière’s in order to develop effective treatments. Ward received his medical degree from the University of Pittsburgh School of Medicine. A clinician-scientist, he is an assistant professor in the department of otolaryngology–head and neck surgery at Johns Hopkins University School of Medicine, Maryland.
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research
Ross Williamson, Ph.D.
University of Pittsburgh
Project: Characterizing tinnitus-induced changes in auditory corticofugal networks Description: The irrepressible perception of sounds without an external sound source is a symptom that is present in a number of different auditory dysfunctions. It is the primary complaint of tinnitus sufferers, who report significant “ringing” in the ears, and it is one of the primary sensory symptoms present in schizophrenia sufferers who “hear voices.” Tinnitus is thought to reflect a disorder in gain: A loss of input at the periphery shifts the balance of excitation and inhibition throughout the auditory hierarchy leading to excess hyperexcitability, which then leads to the perception of phantom sounds. This project aims to quantify how such “phantom sound” signals are routed and broadcast across the entire brain, and to understand how these signals impact our ability to perceive sound. Identifying improper regulation of brain-wide neural circuits in this way will provide a foundation for the development of new treatments for tinnitus and other hearing disorders. Long-term goal: To understand how hyperexcitable phantom sound signals are propagated and broadcast throughout the brain, and how these signals impact our ability to both perceive and utilize sensory information in the world around us; to identify how sensory processing is altered in auditory cortical circuits after peripheral insult; and to leverage this knowledge to guide the development of new treatments and therapeutic interventions for hearing disorders. Williamson received his doctorate from the Gatsby Computational Neuroscience Unit, University College London, U.K., before carrying out postdoctoral training at Massachusetts Eye and Ear, Harvard Medical School. He is currently an assistant professor in the departments of otolaryngology and neurobiology at the University of Pittsburgh, Pennsylvania.
Calvin Wu, Ph.D.
University of Michigan Generously funded by the Les Paul Foundation Project: Development and transmission of the tinnitus neural code Description: Noise overexposure is a common risk factor of tinnitus, and is thus used as a common tinnitus inducer in animal research. However, noise exposure does not always cause tinnitus, and researchers would rely on behavioral testing to infer an animal’s subjective pathology. Behavioral tests only work under the assumption that tinnitus is unchanging during the long testing period, which does not reflect the dynamic nature of tinnitus as well as ignoring variability. This inability to measure tinnitus within a short time window impedes our understanding of its emergence and progression. The project addresses these limitations through bypassing behavioral testing and directly identifying and locating an objective code for tinnitus in real-time spiking neurons. Using a novel data-driven approach, we can pinpoint exactly when/where tinnitus emerges and examine how noise trauma triggers and transmits the tinnitus signal throughout the auditory pathway. Long-term goal: To understand how tinnitus is encoded by the auditory system. This will reveal novel therapeutic targets (e.g., specific circuits or optimal time for intervention) for treating tinnitus. Wu received his doctorate from the University of North Texas and is now a research investigator at the Kresge Hearing Research Institute, University of Michigan, where he also completed postdoctoral work. For more, see hhf.org/erg and hhf.org/mtr. Support our research: hhf.org/donate a publication of hearing health foundation
winter 2021
25
meet the donor
h earing health foundation
Hearing the Passion My younger brother Alex has for many years been deeply passionate about learning, reading, writing, and speaking world languages. For Alex, each new language is a hidden art with its secrets and beauty waiting to be discovered. Alex was in elementary school when he developed an interest in television cartoons in other languages, including Italian and Joe (left) watched his Japanese. His discovery brother Alex learn Japanese of their cultures soon on his own. evolved into a fascination with their languages. But his passion for international vocabularies has been constantly challenged. Alex was born with a hearing loss and was discouraged from pursuing world language studies. Taking advice from Alex’s audiologist, my parents maintained that it would be harder for my brother to master English than for children with typical hearing. They were reluctant to introduce him to other languages, including our mother’s native tongue, Arabic. After Alex received a cochlear implant and hearing aid at age 2 1/2 years old, my parents made sure he was surrounded by English speakers to foster his language comprehension. In elementary school, Alex attended speech therapy while his peers learned Spanish, and his exclusion from language courses continued into middle school, where he was dissuaded from enrolling in his choice of Spanish, French, or Mandarin. Undeterred, Alex was determined to prove to himself and others that he could learn other languages successfully. He began to study, read, and listen to Japanese in his free time. A couple years ago, when selecting his classes for his freshman year of high school, Alex was advised to opt out of learning another language yet again, even though he eagerly wanted to learn one at school. He came to me for advice but I asked him, with one eyebrow raised, “Why should my opinion matter?” Alex was confused and asked what I meant. I explained to him something that our mom likes to say: “When it comes to our passions, we shouldn’t need others’ approval to follow them.” Alex smiled and said, “I know what I want to do now.” 26
By Joe Mussomeli The next day, Alex spoke with my parents and his speech therapist at school. Alex told everyone that he had been teaching himself Japanese using YouTube, language websites, and apps. Impressed, all parties agreed that he should be able to take a world language of his choice in high school.
A couple years ago, when selecting his classes for his freshman year of high school, Alex was advised to opt out of learning another language yet again, even though he eagerly wanted to learn one at school. He came to me for advice but I asked him, with one eyebrow raised, “Why should my opinion matter?” Today, Alex is excelling in his high school Italian class. He loves it and says that Italian is one of the most beautiful languages he’s ever heard. Impressively, outside of school, Alex continues to study and learn Japanese in his free time. He practices listening to, speaking, and reading the language for hours every day. Alex’s determination and perseverance has allowed him to pursue and succeed in other languages. My brother inspires me to remember that we can overcome challenges if we choose, and that we should never give up on following our passions.
Longtime Hearing Health Foundation supporters, the Mussomelis live in Connecticut, where Alex held a gallery fundraiser selling his paintings to benefit HHF. The family was featured in Hearing Health’s Summer 2015 issue, at hhf.org/magazine.
Share your story: Tell us your hearing loss journey at editor@hhf.org. Support our research: hhf.org/donate
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survey
Hearing Health Foundation 2021 Reader Survey Hearing Health Foundation would like to hear from our community to better serve your needs. Please fill out this survey (also accessible at hhf.org/survey) and mail it back using the envelope. Thank you for taking the time! 1. What is your level of hearing loss? Mild Moderate Moderately severe Severe Profound I don’t know I don’t have a hearing loss
complete the survey online at hhf.org/survey
2. If applicable and known, please indicate the cause of your hearing loss. Check all that apply. Age-related hearing loss Noise-induced hearing loss Genetic or hereditary factors (e.g., Connexin 26, Usher syndrome) Medication Otosclerosis Head trauma or tumor (e.g., acoustic neuroma) Viral or bacterial infections (e.g., ear infections) I don’t know Other: _________________ 3. Do you use hearing assistive technology (e.g., an FM system, hearing loop, PockeTalker, captioned telephone)? Yes No
5. Do you plan to purchase new hearing aids? In the next 3 months In the next 6 months In the next year I don’t plan on purchasing new hearing aids 6. What is your primary source for information about hearing aids? Hearing healthcare professional Hearing Health magazine Online research Other: _________________ 7. Do you wear a cochlear implant (CI)? Yes No 8. Where do you read Hearing Health magazine? Print Online Both 9. How did you hear about the magazine? Check all that apply. I subscribe Doctor’s office Family member Friend Social media Other: _________________
10. Please indicate your age. Under 18 years old 18 to 34 35 to 54 55 to 74 75 or older 11. What is your employment status? Employed or homemaker Out of work or looking for work Student Unable to work Retired 12. What is your pretax household income? Under $25,000 $25,000 to $49,999 $50,000 to $99,999 $100,000 to $149,999 $150,000 or more 13. Are you a veteran or active military service member? Yes No We’d also like to hear responses from your family and friends. The survey can be completed online at hhf.org/survey. If you have any questions, please contact us at 212.257.6140 or info@hhf.org.
4. Do you wear hearing aids? Yes No
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research
EMERGING RESEARCH GRANTS
Going Virtual
Portable head-mounted displays are changing the landscape for the rehabilitation and assessment of balance conditions. By Anat V. Lubetzky, Ph.D.
A screenshot from the virtual reality application that Anat Lubetzky, Ph.D., and team designed to study multisensory integration for postural control in different contexts.
Sensory integration for balance was a main focus of my clinical and doctoral work, and I have done several studies in the field examining what happens when vision and somatosensory (joint position) information is altered. When my team and I first developed our assessment paradigm, we were excited to utilize head-mounted, virtual reality displays to literally expand our view of balance to better understand visual dependence. After my first year testing patients with vestibular disorders, Maura Cosetti, M.D., the director of the Ear Institute at Mount Sinai’s New York Eye and Ear Infirmary, asked me about the relationship between what we hear and the control of balance. This was fascinating to me and she became a co-investigator on the project. We have been investigating several mechanistic questions: Does hearing loss independently lead to balance problems in some individuals, and if so, why? Why do some people with vestibular loss improve with rehabilitation while others do not? Resolving these questions will have important implications for balance and hearing screenings and interventions. We created a clinical virtual reality application for a head-mounted display (such as the HTC Vive headset) to provide a graded method for patients to experience diverse environments in a functional, safe, and nonthreatening context. As we continue to conduct research, we have seen the enormous value in using these virtual reality headsets for both assessment and rehabilitation.
Balance Assessment
There is an urgent need to evaluate balance in a manner that is sensitive, has real-world applications, and is broadly accessible. Head-mounted displays have been proposed as a promising paradigm for this purpose due to their 28
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portability and low cost relative to lab-based equipment. These head-mounted displays open the window to studying head movement in response to controlled manipulations of the environmental conditions in a systematic manner with a potential direct clinical translation. In a series of studies, we have established the accuracy of head-mounted displays to measure head kinematics (movements) as well as the sensitivity of head kinematics to different vestibular disorders. Overall our findings so far indicate that for postural control, head movements provide complementary information to body sway. It helps enrich data gathered from our use of a force platform, which measures the forces applied to the ground by the body, and from that we can quantify body sway. It is also possible that head patterns provide a more sensitive characteristic of vestibular dysfunction than body sway, the rhythmical movement of the body front to back or side to side. The long-term goal of this line of work is to create a way to accurately diagnose between different but similar vestibular disorders in the clinic. Sensory integration for balance has been primarily studied within tasks that include the complete elimination of visual input (such as standing with your eyes closed) or visual input that moves with the person (swayreferences), and a reduction of auditory cues (such as wearing hearing protection). Our interdisciplinary approach to the investigation of sensory integration for balance allows us to apply cutting-edge technology to investigate the functional needs of patients based on mild controlled manipulations of sensory cues within diverse environmental contexts. As mentioned, a primary question that we are working on is: Does what we hear matter for balance? Our group has research expertise in spatial and immersive three-dimensional audio and its application in virtual
research
Head-mounted, virtual reality displays literally expand our view of balance to better understand visual dependence.
We developed a virtual subway station scene in response to patients’ reports of where they experience difficulty with balance in daily life. Loaded with visual and auditory cues, the scene requires navigating public transportation, crowded spaces, flow of people, background chatter, and more. Our hope is to better understand postural responses to sensory inputs in different contexts.
reality. This expertise allows us to perform an innovative inquiry of auditory input for balance in combination with diverse visual input. Over the past few years members from our technical team have worked to capture sounds in various New York City environments and to scale them to the visual environments. We have developed, for example, a subway station scene in response to patients’ reports of where they experience difficulty with balance in their daily living. Loaded with visual and auditory cues, the subway station scene requires navigating public transportation, crowded spaces, flow of people, background chatter, etc. Our hope is to better understand postural responses to sensory inputs in different contexts.
Balance Rehabilitation
Our head-mounted display app allows for contextual sensory integration where patients are immersed in safe, increasingly challenging environments while practicing a variety of tasks (e.g., turning, walking, dodging balls, etc.). These environments are designed to mimic visual and auditory loads that patients may encounter in their everyday environments and are not easily reproducible in traditional vestibular (balance) rehabilitation. Indeed, virtual reality rehabilitation has been shown to be more effective than traditional rehabilitation with regard to physical outcomes for patients with vestibular dysfunction. Patients performing balance exercises in VR have reported more enjoyment and less fatigue after the activity, and a perception of less difficulty compared with traditional exercises. In our preliminary work, therapists at the vestibular rehabilitation clinic at New York Eye and Ear Infirmary viewed the system as an effective bridge for the patient going from the clinic to the outside world. The COVID-19
pandemic then exposed an urgent need to advance and also provide access to digital physical therapy and telehealth at local and international levels. The portability and affordability of the hardware and software enhance the potential clinical outreach, and immersive VR rehabilitation sessions have the potential to be delivered remotely while the patient is at home. Existing supervised telerehabilitation programs are showing promise by obtaining comparable results to in-person programs, such as for people after stroke and people with Parkinson’s disease, at lower costs. Because of its ever-improving ability to mimic reality, capture data, and provide a complementary low-cost approach to traditional methods, we’re confident that virtual reality technology will continue to be a prominent part of scientific research.
A 2019 Emerging Research Grants scientist, Anat V. Lubetzky, Ph.D., is an assistant professor in the physical therapy department at New York University. For references, see hhf.org/winter2021-references.
Share your story: Have you done balance rehab? Tell us at editor@hhf.org. Support our research: hhf.org/donate a publication of hearing health foundation
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research
Recent Research by Hearing Health Foundation Scientists, Explained Discovery of a New Type of Neuron Holds Clues About Tinnitus
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Small cells (L-cells) 6X10 * Reconstruction of* the structure of both D-stellate (A) and novel * T-stellate cells 600 L-stellate (B) cells. D-stellate *cells show radiated structures * while L-stellate cells show profusely branched processes.
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Tinnitus is the perception of a phantom sound, commonly known as “ringing in the ears.” It is a highly prevalent condition and in some cases, can significantly impair the quality of life. Unfortunately, the underlying causes of tinnitus are unknown. However, animal and human studies have linked tinnitus with hyperactivity of auditory neurons in the brain. Specifically, recent studies implicated hyperactivity in the ventral cochlear nucleus (VCN) as a possible source of tinnitus generation. The VCN is one of the first brain structures to receive auditory information from the ears, and electrical activity in the VCN leads to activity in higher auditory centers. Therefore, an increase in the excitability of neurons in the VCN could lead to higher excitability of neurons observed in higher auditory centers. This early-level activity of excitatory neurons is regulated by inhibitory neurons. Since inhibitory neurons act to prevent hyperactivity, it is logical to look to them as we examine normal and damaged auditory function, but the sources of these inhibitory inputs onto the excitatory cells in VCN are not well understood. Within the VCN, the activity of excitatory neurons is regulated by a single known inhibitory cell class, called the D-stellate cell. The goal of this study was to take a closer look at the VCN, which may reveal new types of inhibitory neurons with functions that could be of clinical significance. By carefully examining the diversity of inhibitory neurons in the VCN using transgenic mice, super-resolution microscopy, and the latest tools to study the structure and properties of individual neurons, we discovered a novel class of inhibitory cell, which we termed L-stellate cells, in the VCN. Our study published in eLife in November 2020 described this novel inhibitory cell class. We were surprised to find that the vast majority of inhibitory neurons in the VCN are this L-stellate cells class, as compared with the better-known D-stellate cells. The L-stellate cells differ from D-stellate cells both in structure and physiological properties. We also showed that the L-stellate cells provide inhibitory signals to excitatory cells in the VCN—that is, they reduce the electrical activity. This is an exciting and significant finding because the
A 2018 Emerging Research Grants (ERG) scientist generously funded by the Les Paul Foundation, Tenzin Ngodup, Ph.D., is a postdoctoral fellow at Oregon Hearing Research Center, Oregon Health & Science University. His colleague and study coauthor Lawrence O. Trussell, Ph.D., is a 1991 ERG alumnus.
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200 balance of excitation and* inhibition is critical for normal cell activity. The disruption of inhibitory neurons could 0 0 Shorter Longest D Further L T underlie the hyperexcitability of neurons. study 0 is needed to test whether the L-stellate cells might be G * 15 potentially damaged with the onset of hearing loss and tinnitus. If compromised, loss of such activity could lead to * 10 hyperactivity and auditory dysfunction. This result could suggest new targets for tinnitus 5 therapies through inhibitory neuronal activation and insights into new prevention strategies. The identification 0 and characterization of inhibitory cells are critical 0 200 400 600 Distance fromboth soma (µm) for understanding auditory processing and the pathophysiology of tinnitus. —Tenzin Ngodup, Ph.D.
# Intersections
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These heatmaps show the differences in the brain’s gamma oscillations between young (age 3 months) and old (age 24 months) mice. Red indicates increases from the baseline, while blue shows decreases. The top row are the differences after 70 dB sounds were introduced to the young mice and 90 dB SPL to the old mice, to account for age-related hearing loss. In the bottom row, significant differences in gamma brainwaves are shown as the mice aged in both the auditory cortex (AC) and the frontal cortex.
Age-Related Hearing Loss and Brainwave Changes Brain oscillations (brainwaves) are associated with specific cognitive and sensory processes. How age-related hearing loss (presbycusis) alters the oscillations is unclear. Agerelated speech recognition problems can be caused by changes in neurotransmission (chemical messaging between nerve cells) and temporal processing (the perception of sound within a defined time frame). We set out to test the hypothesis that gamma oscillations in the brain, whether in the resting state or in the presence of noise, decline with presbycusis. We used a mouse model genetically modified to acquire presbycusis across three different ages (young, middle age, old). Electroencephalograms (EEGs) measured the brain’s electrical activity. Published in Hearing Review in October 2020, our study found several age-related changes: gamma oscillations and entrainment (synchrony) decrease with age in the mice, but there was not an age-related difference when it comes to the effect of movement on gamma oscillations; movement was found to increase gamma power in all age groups of mice. We also found that even when auditory responses were robust in older mice, we saw a decline in their temporal processing.
The results of this study provide novel markers of presbycusis-related auditory processing deficits. Because EEGs are commonly recorded in humans, the mouse data may help facilitate the development of therapeutics to delay or reverse central auditory processing deficits in presbycusis. —Khaleel Razak, Ph.D.
A 2009 and 2018 ERG recipient, Khaleel Razak, Ph.D., is a psychology professor at the University of California, Riverside. His 2018 grant was generously funded by the General Grand Chapter Royal Arch Masons International. For references, see hhf.org/winter2021-references. Support our research: hhf.org/donate a publication of hearing health foundation
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meet the researcher
hearing health foundation
EMERGING RESEARCH GRANTS
Meet the Researcher
Emerging Research Grants (ERG) As one of the leading 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.
Z. Ellen Peng, Ph.D.
University of Wisconsin–Madison
Peng received her doctorate in engineering from University of Nebraska–Lincoln. She completed a postdoctoral fellowship at RWTH Aachen University in Germany and is now a research associate at the Waisman Center and a lecturer at the department of communication sciences and disorders, both at the University of Wisconsin–Madison. Peng’s 2020 Emerging Research Grant is generously funded by the General Grand Chapter Royal Arch Masons International. the origin of my present research goes way back: In my college application I wrote that I wanted to study how poor indoor acoustics affects kids’ ability to learn. At the time, my high school had decided to put in a loudspeaker system without altering classroom interiors, and afterward I noticed I had a hard time concentrating in class, possibly because it took too much effort to fully hear everything. This high school experience and my subsequent training led to my current project. through early cochlear implant (CI) fitting, many children diagnosed with profound hearing loss gain access to verbal communication and, through electrical hearing, go on to develop spoken language. But despite good speech outcomes as tested in the sound booth, many children who use CIs experience difficulty understanding speech in most noisy and reverberant indoor environments, like classrooms. I will be using acoustic virtual reality and measures of neural activity to better understand how CIs process degraded speech in adverse sound environments. my dad, an acoustician, taught me how to do logarithmic decibel addition before multiplication—it was fun to show this off as a second grader! As a young kid, I also saw my mom, a pediatrician, working overnight in the NICU (unintended “bring your daughter to work” experiences!) and where I remember seeing very sick babies. I think this primed me for a career using science/ engineering to help children in need. 34
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so it was not a personal connection to hearing loss that led me to what I do now. It was more the realization that not every child has a fair start in life, and wondering how can I make it more fair? I am grateful to have the technical background and scientific training to contribute to making this world a better place for children with hearing loss. i’m bilingual in Cantonese and Mandarin Chinese, and I managed to teach myself Korean after I met my husband, who’s from South Korea. In Germany I could eventually understand 10 to 20 percent. Now I enjoy confusing and teaching our toddler the names for various objects in different languages!
Z. Ellen Peng, Ph.D., is generously funded by the General Grand Chapter Royal Arch Masons International. We thank 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.
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