Only about 14 percent of Americans with hearing loss use hearing aids. For many others, this vital, life-changing treatment that facilitates participation in meaningful conversations with friends and family is out of reach financially.
Hearing Health Foundation (HHF)’s 2017 hearing loss survey, created to better understand our constituents’ opinions related to hearing loss, was cited by a WBUR-FM Here & Now radio segment highlighting the barriers to hearing loss treatment that Americans encounter.
The news story opens with commentary from retiree Betty Hauck, 72, who was shocked when her first pair of hearing aids cost her $5,600—with no assistance from Medicare.
“A price tag like that is often a surprise to people buying hearing aids for the first time. Four states—Arkansas, Connecticut, New Hampshire and Rhode Island—require health plans to cover hearing aids for children and adults,” explains reporter Peter O’Dowd.
“But those benefits are rare. A 2017 survey by the Hearing Health Foundation, a group that funds research and advocates for treatments and cures for hearing loss, found that 40 percent of the people they asked had no hearing aid coverage through health insurance.”
Kevin Franck, director of audiology at Massachusetts Eye and Ear, among other experts, are hopeful that the Over-the-Counter Hearing Aid Act of 2017 will reduce barriers—cost, stigma, and hassle—encouraging greater adoption.
You can access the full WBUR segment, here.
Note: The audio segment is not captioned but is summarized in print.
The Listening Project
By Vicky Chan and Lauren McGrath
“Most people still assume that if a person is deaf, they’re not able to speak,” narrates Jane Madell, Ph.D., in the opening moments of her documentary film “The Listening Project,” released in March 2018. Her statement sets the tone for the following 38 minutes of personal stories that shatter stigmas about hearing loss.
A New York City-based pediatric audiologist, speech language pathologist, and auditory verbal therapist, Madell created the documentary with award-winning filmmaker Irene Taylor Brodsky to reveal how technology has improved communication—and life—for people with hearing loss.
Richard, a cochlear implant recipient, is one of the participants in "The Listening Project" who works as a software engineer.
Brodsky captured interviews of 15 individuals with hearing loss, most of whom Madell treated when they were children. Madell says filming allowed her to reconnect with her former patients to “see what they had to say about growing up with a hearing loss and what advice they might have for parents of newly identified children with hearing loss.”
The subjects of “The Listening Project” are vibrant young adults living and working all over the world—connected by their gratitude for the technologies and treatments that enable them to hear and talk. The majority are cochlear implant recipients, while the remainder wear hearing aids. They experienced similar anxieties, including not being able to hear everything in social settings, disclosing hearing loss to new acquaintances, and accepting their hearing loss.
If not for modern medical progress, the film’s subjects may not ever have been able to overcome these hurdles. When Madell began her career in audiology 45 years ago, hearing loss treatments were very restrictive. Only children with mild to moderate hearing loss could hear well with hearing aids, and the Food and Drug Administration had not yet approved cochlear implants. Such limitations challenged Madell emotionally early in her practice. Though she smiled and appeared optimistic in front of her patients and their families following a hearing loss diagnosis, she knew how hard they would need to work with inadequate accommodations for their children to succeed.
Madell’s former patients and millions of others are fortunate changes in hearing technology and policies in recent decades have been dramatic. “We are so lucky we live now and not 30 years ago, 40 years ago,” says one. Another young man adds that the ability to communicate and feel comfortable doing so is “a core human value.” Advancements have made it possible for children with hearing loss to learn spoken language, which Madell believes is critical for educational, social, and professional development and gives them options they would not have otherwise.
Madell hopes the personal stories in “The Listening Project” will help parents of newly diagnosed children, as well as legislators, educators, and healthcare workers. “Parents of children with hearing loss have told me that if they had seen the film before the diagnosis, it would have been easier to deal with,” she says. It shows parents that with the resources and hearing technology available today, hearing and speech are possible for every child.
To learn more about the film for either personal or educational use, visit thelisteningprojectfilm.org.
On a Quest
By Sue Baker
From his earliest days, the concept of sound consumed musician and inventor Les Paul. How did sound work? Why did the record player produce sounds different from the player piano? Why does the sound of the train change as it moved down the tracks? Why did the body of his acoustic guitar vibrate when he plucked the strings? How could he make just the strings vibrate?
Although best known for his solid body electric guitar and industry-changing recording inventions, for Les the quest always came back to sound, even in his later years. “I’ve spent my life looking for the perfect sound, trying to build the perfect guitar to play the perfect note,” he wrote in his 2005 autobiography, “Les Paul in His Own Words.”
One of Les Paul's hearing-related inventions.
In the 1960s, Les’s eardrums were ruptured due to playful roughhousing. The resulting infection and, later, mastoidectomy surgery, left him with a hearing loss. He wasn’t happy about the hearing aids’ sound quality for music.
I met Les when I was the executive director at a museum in his hometown of Waukesha, Wisconsin. We were creating an exhibit about his career. Over the course of what would be the last decade of his life, our friendship grew. Two years after Les passed away at age 94 in 2009, his business manager Michael Braunstein asked me to work at the Les Paul Foundation.
During one of my visits to Les’s home in 2001, I asked him about an unusual piece of equipment in a corner. “Oh, it’s just an experiment I was doing,” he said. “I was trying to replicate how the human ears work.” He was a tinkerer by nature and necessity, always wanting to invent something to fill a void or to improve what was available.
Musician Jon Paris says Les’s audiologist (whom he met at New York City’s Iridium Jazz Club, where Les performed every Monday night) told him that Les “drove him nuts—in a good way—constantly demanding better quality from his hearing aids.”
Another friend, Chris Lentz, says that Les worked with Marty Garcia of Future Sonics to improve his hearing aids. In a note to Chris, Marty wrote, “Throughout our years together, Les validated just about every voice coil transducer Future Sonics developed.”
In a 2008 interview in Audiology Today, Les talked about how he wanted to improve hearing aids for music. He cited the importance of extending the audio range to capture more of the harmonic structure than what is needed for speech. Les also wanted hearing aids that could be worn in the shower and would work optimally when using the telephone.
Les Paul’s 103rd birthday would have been this June 9. He would have been gratified to see how far hearing aid technology has come.
Sue Baker is the program director for the Les Paul Foundation. For more, see lespaulfoundation.org.
Researchers Fighting the Effects of Noise
By Yishane Lee
The cornerstone of Hearing Health Foundation, ever since its founding in 1958 as the Deafness Research Foundation, has been funding early-career researchers who bring innovative thinking to hearing and balance research. HHF’s Emerging Research Grants (ERG) are awarded to the most promising scientists in the field, with many going on to earn prestigious National Institutes of Health backing.
HHF is always proud to see ERG grantees thrive in their careers and research. Most recently, two ERG scientists funded in the mid-1990s have made headlines, each for treatments for noise-induced hearing loss (NIHL).
1996 and 1997 ERG scientist John Oghalai, M.D., of the University of Southern California, coauthored a study showing promise for preventing NIHL. Published May 7, 2018, in the Proceedings of the National Academy of Sciences, Oghalai and team used miniature optics to examine the mouse cochlea after exposure to extremely loud noise, and found that in addition to immediate hair cell death, a fluid buildup in the inner ear over several hours eventually led to nerve cell loss. The fluid buildup, or endolymph hydrops, contributes to synaptopathy, or damage to the auditory nerve cell synapse. In a USC News press release, Oghalai described the excess fluid as a feeling of fullness and ringing in the ear that a person may experience after attending a loud concert.
Because the extra fluid showed a high concentration of potassium, the team saw a method to re-balance the fluids that naturally occur in the inner ear by injecting a salt (sodium) and sugar solution into the middle ear three hours after exposure. Nerve cell loss was reduced by 45 to 64 percent, which may help preserve hearing. The researchers see applications for this treatment for military service members who experience blast trauma as well as for people who have Ménière’s disease, the hearing and balance condition that is associated with inner ear fluid buildup.
Images from the cochleae of guinea pigs show the presence of more hair cells in animals treated with a short interfering RNA that interrupts a gene upregulated after damage (right; control on left). Inner and outer hair cells (IHC and OHC) are labeled in green, stereocilia in yellow, and nuclei in blue. Arrowheads indicate ectopic hair cells. Credit: The Scientist via Molecular Therapy.
1996 ERG scientist Richard Kopke, M.D., FACS, of the Hough Ear Institute in Oklahoma, spent more than 20 years serving with the U.S. Army, becoming well aware of the dangers of NIHL for service members. In a paper in Molecular Therapy, published online in March 2018, Kopke and colleagues used “small interfering RNAs” (siRNAs) to block the activity of the Notch signaling pathway gene Hes1 that itself blocks hair cell differentiation in developing supporting cells and may contribute to the failure of hair cells to regenerate after injury.
These siRNAs were delivered using nanoparticles directly injected to the cochleae of live, adult guinea pigs. Kopke’s team had previously shown using siRNAs to block Hes1 to be effective in regenerating hair cells in cultured mouse cochlea. In the current study, the 24-hour, sustained-release of siRNAs through nanoparticles three days after deafening resulted in the recovery of some hearing ability, measured using auditory brainstem responses, at three weeks and continuing to nine weeks, when the study ended. Compared with the control mice, the RNA-injected mice showed less overall hair cell loss and early signs of immature hair cell development, which the authors say may signal hair cell regeneration. Hearing loss caused by noise, chemotherapy drugs, or aging that damages or kills hair cells are all targets for this potential treatment.
In an article in The Scientist, HHF’s Hearing Restoration Project consortium member Jennifer Stone, Ph.D., who was not involved in the paper, echoed the study authors in saying further research should work to determine which cells are turning into hair cells, and whether the observed hair cell development is truly new hair cells and not the repair of damaged hair cells. Kopke and team plan to test the treatment using longer periods between deafening and injection, while also modifying dose and delivery.
We need your help supporting innovative hearing and balance science through our Emerging Research Grants program. Please make a contribution today.
The Countdown to Operation Regrow
By Gina Russo
Hearing Health Foundation (HHF) is counting down the days until the start of Operation Regrow, a two-week movement when you can help us to further progress toward better treatments and cures for hearing loss.
Beginning Tuesday, June 5, at 8:00 AM EDT, you can support the team of scientists conducting life-changing research to restore lost hearing, and more importantly, your generosity will have double the impact! All contributions received by 11:59 PM EDT on Tuesday, June 19 will be matched by an anonymous donor.
Transverse section through the embryonic day 20 chicken utricle (inner ear organ) at 20X magnification. Photo by Amanda Janesick, Ph.D., of the lab of Stefan Heller, Ph.D., a Hearing Restoration Project consortium member
With just five days remaining until launch, you can share the five most important facts about Operation Regrow with friends and family:
The Hearing Restoration Project (HRP) is the HHF-funded scientific consortium dedicated to finding biological cures for hearing loss.
Damage to the sensory cells in the human inner ear causes irreversible hearing loss.
The HRP members know that the key to hearing loss cures is the human ability to regrow cells in the inner ear. This phenomenon is already possible in certain species. The HRP has observed cell regrowth in chickens, fish, and young mice.
The HRP is comprised of 15 senior scientists who work collaboratively by openly sharing data and ideas, and this collaboration helps to speed up the research process.
HHF maintains stellar charity ratings from Better Business Bureau Wise Giving Alliance, Guidestar, Charity Navigator, and CharityWatch for using 100% of donations to support critical research, ensuring that all Operation Regrow contributions will directly help the HRP.
If you are able to make a gift to Operation Regrow, please visit www.hhf.org/regrow between June 5 and June 19. Gifts may also be made by phone during business hours, 9:00 AM to 5:30 PM EDT, at 212-257-6140. We’ll be sure to keep you updated on our progress. Thank you for supporting HRP and hearing health!
One Person’s Lifelong Experience with Hearing Loss
By Dr. Bruce L. Douglas
I am a 93-year-old healthy adult with hearing loss. Many parts of my body don’t work perfectly right anymore, but my hearing loss is my biggest physical difficulty.
When it comes to hearing loss, I’ve been there and done that. Despite the fact that I am legally deaf, I can hear. Why? Because I’ve stubbornly fought back every time a hearing pitfall appeared in my path.
The reason I can hear is because I refuse to give into my disability. I try out every kind of useful assistive hearing device I can lay my hands on or is given to me by my Department of Veterans Affairs (VA) audiologist. I’ve become a hearing loss activist and fight for coiling of public facilities whenever I have the chance to do so. And I recently had a cochlear implant installed about a year ago.
As a boy, I remember always taking a seat at the front of the room, when most other kids would vie for one in the back, so they could cheat on exams without being seen by the teacher. I didn’t realize how poor my hearing was until I was reprimanded for inconspicuously (I thought) using a nail clipper under my desk in my elementary school classroom. I had no idea because I couldn’t hear it!
I tried to come to terms with my hearing loss for many years. I refused to hide in corners of rooms and restaurants, and dealt with my problem largely by disclosing my hearing loss to people and asking for their cooperation in our verbal relationships. My early hearing aids only allowed me to hear sounds but not comprehend them, so I learned to lip read and stare at my companions, often to the point of distraction.
I have presbycusis, I’m suffering from acoustic trauma from my time in the Korean War, I have sensorineural deprivation, and I’ve experienced every imaginable kind of sound and sensation in the form of tinnitus.
Call us what you will, but don’t ignore us; don’t make fun of us. Most importantly, respect us; and treat us as equals. Be patient with us and accept the reality that we have an invisible condition that wove its way into our nervous system, most often beyond our control, and we do all we can to listen to you and respond to the best of our ability.
Dr. Bruce Douglas is a Professor of Health and Aging at the University of Illinois at Chicago School of Public Health. He is a participant in HHF’s Faces of Hearing Loss campaign.
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You Are a Masterpiece
This retinal eye specialist—who was the first person to utter, “You have Usher syndrome” to me—had the worst bedside manner. Immediately after I left his office I cried—a lot—but then regained my composure and made a few calls to see a second retinal eye specialist doctor for a second opinion.
Stenting to Relieve One Specific Cause of Pulsatile Tinnitus
By Jayne Wallace for the Weill Cornell Medicine Brain and Spine Center
The Centers for Disease Control and Prevention estimates that 15 percent of the U.S. population, or 48 million people, have some type of tinnitus, hearing a ringing or buzzing in the absence of an external sound source.
Pulsatile tinnitus, in contrast, usually has a sound source. In these cases, affecting fewer than 10 percent of tinnitus patients, sounds are caused by turbulence in the blood flow around the ear. And among these cases, intracranial hypertension comprises about 8 percent of cases. This is when narrowing in one of the large veins in the brain causes a disturbance in the blood flow, leading to the pulsatile tinnitus.
Dural arteriovenous fistula, MRA showed only subtle alterations as a result of atypical flows in the right transverse sinus (arrow). Photo courtesy of Deutsches Ärzteblatt International.
“Traditionally there has been no good treatment for many of these patients who are told to learn to live with it,” says Athos Patsalides, M.D., an interventional neuroradiologist at New York City’s Weill Cornell Medicine Brain and Spine Center, where he also serves as an associate professor of radiology in neurological surgery.
Till now, available treatments—medication or more complicated surgery—were either ineffective or produced side effects and other problems just as bad or worse. “That’s why we started the clinical trials for venous sinus stenting, a minimally invasive procedure that is very effective in alleviating the narrowing in the vein,” says Patsalides, who pioneered the use of VSS to treat patients with idiopathic intracranial hypertension (IIH), also known as pseudotumor cerebri because the symptoms tend to mirror those of a brain tumor.
“Many IIH patients suffer from vision loss, headaches, and pulsatile tinnitus, and I saw a pattern with patients experiencing resolution of the pulsatile tinnitus immediately after VSS,” Patsalides says.
This led to the possibility of using VSS for selected patients with pulsatile tinnitus. After the Food and Drug Administration approved the clinical trial, it began in May 2016 and has an estimated completion date of January 2021.
“In the stenting procedure, with the patient under general anesthesia, we insert a tiny, soft catheter into a vein located in the upper part of the leg and thread it up to the affected vein in the brain,” Patsalides says.
A self-expanding stent is deployed into the narrowed segment of the vein, relieving the stenosis, restoring normal blood flow, and reducing or eliminating the pulsatile tinnitus. “Happily, the patient is typically discharged from the hospital within 24 to 48 hours,” he says.
To learn more, see weillcornellbrainandspine.org. Hearing Health Foundation notes that the trial is ongoing, and that the procedure is potentially able to address only one specific cause of pulsatile tinnitus and should not be taken as a solution for other forms of tinnitus, which often has no known cause.
You can empower work toward better treatments and cures for hearing loss and tinnitus. If you are able, please make a contribution today.
Intern Awareness: Reflections from HHF
By Vicky Chan, Lauren McGrath, and C. Adrean Mejia
This spring, Hearing Health Foundation (HHF) has been fortunate to welcome two outstanding, dedicated young professionals to its office: Vicky Chan, Copywriting Intern and C. Adrean Mejia, Social Media and Digital Communications Intern. In honor of Intern Awareness Month, celebrated each April, Vicky and Adrean reflected on their experiences as members of the small yet mighty HHF team under the supervision of Lauren McGrath, Marketing Manager.
Vicky, a recent graduate from Brooklyn College with a Bachelor’s Degree in English, believes that interning at HHF has equipped her with invaluable, real-world experience to grow as both a professional and an individual. So far, Vicky has utilized her skills by editing, researching, and conducting interviews for HHF’s blog and magazine. A former writing tutor, Vicky acknowledges that writing for an official publication like Hearing Health magazine is markedly different than completing a college professor’s assignment. Unlike academic essays, Vicky’s articles at HHF must fit the voice of an established organization. And to effectively craft interview-style stories, Vicky has learned to put herself in the subject’s position to determine how they want their story to be portrayed.
Adrean Mejia (left) interned with HHF as a Social Media and Digital Communications Intern this semester. Vicky Chan is a current Copywriting Intern.
“Everyone at HHF has been open to my questions or suggestions to create an inviting learning environment,” Vicky notes. She’s pleased that HHF has given her purpose and the responsibility to produce written content about hearing health awareness. “Each time I complete an article or see my name on the byline, I feel a sense of satisfaction and pride because it shows that I am working towards my career goal—one step at a time.” Vicky plans to pursue a career in the book publishing field.
Adrean, who will soon complete his Bachelor’s Degree in Corporate Communications from Baruch College, recently ended his internship feeling inspired by HHF’s mission and enlightened by what he’s learned. Adrean, speaking honestly about the experience, admits, “At the beginning, adapting to the nonprofit sector and understanding the concepts related to hearing health were challenges for me.”
Fortunately, the role turned out to be enjoyable for Adrean thanks to the accommodating, communicative staff. He is grateful for the experience, which has opened up his eyes to new horizons and enabled him to contribute to an inspiring mission. Now ready to begin his postcollegiate career, Adrean’s long-term professional goal is to achieve a high position in the entertainment and beauty industry to showcase his vision as an artist.
HHF is grateful to Vicky, Adrean, and the dozens of other interns who have offered their time and talents to further hearing loss research and awareness. The foundation looks forward to meeting its Summer 2018 interns, who will pursue projects related to awareness, advocacy, video production, communications, digital media, fundraising, and donor management. To learn about Fall 2018 opportunities, contact us at careers@hhf.org or visit www.hhf.org/join-our-team in August.
Making Entertainment Relatable and Accessible for More
By C. Adrean Mejia
Films, plays, and television series have long served as platforms to create awareness of important topics that have otherwise been kept out of the spotlight. Hearing loss is one example of such a topic.
As an organization that seeks to inform the public about the prevalence, prevention, and treatment of hearing loss, Hearing Health Foundation (HHF) applauds the growing prioritization of this issue in entertainment. We are pleased to know that the number of films featuring characters with hearing loss—played by actors with hearing loss—has risen with the years, generating greater public awareness of the third most common health condition in the United States. Complementing this trend of an increased presence of hearing loss on screen is the introduction of recent legislation to make entertainment more accessible to viewers with hearing loss.
Actors and characters with hearing loss expand society’s understanding of the condition. Hearing loss empowers abilities, emotions, and experiences unlike those of people with typical hearing. Some recent works with characters with hearing loss include the following:
The Silent Child tells the story of a profoundly deaf four-year-old girl who is about to attend a mainstream school with minimal support—until a social worker teaches her American Sign Language (ASL). The film communicates the disappointing statistic that over 78% of deaf children attend mainstream school without accommodations. A final comment that states that the creators “hope this film contributes in the fight for sign language to be recognized in every school across the globe.”
Children of a Lesser God, a play written in 1979, made its Broadway debut last April. The piece focuses on the professional and romantic relationship between a deaf janitor and a typical hearing teacher and shows the contrasting worlds off sound and silence. To Sarah, the janitor, deafness is an identity, not a defect.
This Close is a TV series by two deaf writers and actors that narrates the true story of their lives. The show provides a close look of the everyday day life of two best friends, emphasizing their challenges and frustrations while highlighting the positive and beautiful things that their hearing loss brings to their existence.
HHF commends these and the artists behind similar works for the awareness their creations have generated. Likewise, the organization is proud to witness the introduction of new laws and procedures to make entertainment more accessible to the hearing loss community.
Credit: Naugatuck Patch
The American with Disabilities Act (ADA) first broke barriers by advocating for the requirement that all video program distributors close caption their TV shows. But it wasn’t until recently, with the help of technology, that these rules have expanded. On November 2016, the Final Rule on the ADA Title III was signed, requiring all American movie theaters to provide accessibility for captions. Large cinemas now offer assistive listening, closed captions, and descriptive audio.
Broadway, too, has made tremendous improvements. In 2016, the Theater Development Fund (TDF) and The Broadway League, launched www.theatreaccess.nyc, a website with information about tickets prices, dates and accommodations for theatergoers with disabilities. In addition, TDF now provides accessibility programs with open captioning and/or ASL at select Broadway performances.
Entertainment has made progress in becoming more inclusive for people with hearing loss since the implementation of these programs, but additional work is needed. Though mandating captioning at movie theaters represents great progress, other entertainment settings, including sports arenas and concert halls, must follow suit.
To optimize the listening experience for audience members with hearing loss, more must adopt the use of hearing loops, which transmit sound from a PA system to hearing aids and cochlear implants. In December 2017, the state of Minnesota passed a bill requiring hearing loops in public meeting spaces, taking after similar New York City legislation from earlier in 2017.
HHF looks forward to a day where no one must live with hearing loss. As long as hearing remains out of reach for tens of million Americans, fair accommodations are the most ethical choice.