Sharing Mary Grace Whalen’s recent blog post.
Sharing Mary Grace Whalen’s recent blog post.
What does a hearing aid cost? At the moment, nobody really knows.
We’ve heard anecdotally about cheaper hearing aids, more places to buy them, non-traditional hearing aids, and unprecedented insurance coverage. Hearing Tracker, HLAA and I put together this survey to see if we could spot some trends.
Please fill out this survey so we have a better idea about the state of the business. Hearing Tracker will report on the results in a few weeks.
And please share it with other hearing aid users. Here’s the link again:
Two scholarly papers published this month discussed the impact of hearing loss on patient communication in older adults. Both found that unrecognized hearing loss may have a serious negative impact on health care in the elderly.
In the first, published in the British Medical Journal (BMJ) on January 18, researchers Jan Blustein, a professor of health policy and medicine at NYU, Barbara E. Weinstein professor of audiology at the CUNY Graduate Center, and Joshua Chodosh, a geriatrician at NYU, found that the rate of hearing loss is underestimated in medical settings, and analyzed the effect of undetected hearing loss on doctor-patient communication.
In the second, published in the Journal of the American Medical Directors Association (JAMDA) on January 30, the same authors as well as Ellen M. McCreedy, at the Center for Gerontology and Health at Brown University, discussed why hearing loss may be especially disabling in nursing home settings, and provided an estimate of the prevalence of hearing loss in those settings.
Hearing loss in older adults is measured in various ways. One is a catchall number that includes everyone over a certain age: two-thirds of those over 70 have hearing loss, four-fifths of those over 80 have hearing loss. Sometimes it’s measured by decades: half of those 70-79 have hearing loss; 80 percent of those over 80 do. These figures include everything from mild to profound loss.
Whatever way you count it, however, the elderly experience hearing loss in large numbers. So when the researchers found that federal data indicated that 68 percent of long-term nursing home residents over the age of 70 had “adequate” hearing, it seemed worth investigating. Was hearing loss just not being recognized in nursing homes? And if so, was it affecting care?
The Federal Data was compiled from the Minimum Data Set (MDS) that all nursing homes are required to report to the federal government. In 2016, nursing homes reported that 68 percent of their residents had “no difficulty in normal conversation, social interaction, or listening to TV.”
That number seemed “implausibly low” to Dr. Blustein and her colleagues. The National Health and Nutrition Survey (NHANES), which is the authoritative source about the rate of hearing loss among adults who live outside of institutional settings, found that only 44% of those 80 and older said that they had “excellent or good” hearing. As the JAMDA paper notes, these two figures are at “striking odds” with each other.
It stands to reason that the rate of hearing loss in nursing home residents should be about the same as that of adults living outside of institutional settings, which would mean that many people in nursing homes and other health care settings are having trouble hearing. They may not be having trouble hearing all the time, but crucial hearing situations are often the noisiest.
Many of those who say they hear adequately probably have mild to moderate age-related hearing loss. Their speech comprehension may be fine in quiet conversation. But nursing homes are far from quiet – studies show that social settings are often very noisy, with televisions blaring, dishes clattering in cafeterias, and residents crying out. Moreover, “high stakes” medical-care situations – emergency rooms, intensive care units, ambulances — tend to be the noisiest. These are also stressful situations, and stress also impacts comprehension.
Hearing aids are one solution, but hearing aid use remains low even in this population. Even if they do have hearing aids, people may leave them at home or in a safe place, to prevent loss or damage.
In both articles, the authors propose easy low-tech solutions for making sure hearing loss doesn’t get in the way of good patient care.
The first is for clinicians to be aware that their elderly patients may have hearing loss, even if they don’t know it. They should also check for impacted cerumen, or ear wax, which can affect hearing.
Every facility should have on hand personal amplifiers that can be shared with patients. The PocketTalker is perhaps the best known. The researchers also mention the Mino and the Sonido Listener. These devices cost about $150.
Health care workers also need to be mindful of communication strategies: they should make sure they have the listener’s attention, face the listener, speak clearly but not too slowly, rephrase rather than repeat words the listener has not understood.
Dr. Blustein (who has hearing loss herself and who serves on the Board of Trustees of the Hearing Loss Association of America, as do I) believes that hearing loss profoundly affects communication with patients. “Those of us with hearing loss often smile and nod so that the world thinks that we understand. It’s much more convenient. It’s easier. A patient may nod and smile, but not really understand what she is being told,” she said in an interview with the BMJ. Busy clinicians, too, may just want to move on, get their work done. So both the patient and the clinician may be contributing to the detriment of good patient care.
Unrecognized hearing loss can also sometimes be misdiagnosed as a cognitive impairment. “I think… my intuition… is that this is one of the great issues,” Dr. Blustein told the BMJ. “It’s sort of low-hanging fruit in clinical medicine, the assumption that someone has cognitive impairment when they don’t respond appropriately.”
Asked why the effect of hearing loss on good communication has remained unrecognized by many doctors, Dr. Blustein replied: “I think disability, generally, is not something that medicine is attracted to. We tend to be attracted to really dramatic, acute illness. Disability is complicated, it takes time.” And, she added, it occurs primarily in older people. “This is dismissed as ‘normal aging’. It’s ageism.”
People with hearing loss share some of the responsibility. Both patients and providers will benefit from the Guide for Effective Communication in Health Care, created by Jody Prysock and Toni Iacolucci. It includes information specifically for patients and their families (including a form that can be filled out in advance of medical interactions and should be entered into patient charts) and for providers. It can be found on the New York City Chapter’s website under Resources, with a link to the national website.
For people with hearing loss, it’s important to be honest, to disclose our disability. For providers, it’s important to recognize that hearing loss may be a factor. It’s a two-way street.
For more information about living with hearing loss, read my book “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.
Winter is most definitely here and that means taking special care on icy sidewalks and slippery driveways, and keeping those fingers, toes and noses warm.
For people with hearing loss, there may be other safety issues.
Wearing a hat that covers the ears affects how well you hear. It’s like putting your hands over your ears to block unwanted sound.
Wind, rain and even snow are noisy and will affect how you hear. Nature can easily drown out other sounds.
Traffic noise is louder when the roads are wet.
Snowplows, snow blowers and shovels scraping on sidewalks are noisy.
All this means your eyes are more important than ever in keeping you safe outdoors. But if you wear a coat or parka with a hood, that can affect your vision, especially your peripheral vision. You may need to turn your whole body to check for oncoming traffic.
These are all pretty routine precautions the deaf and hard of hearing should take.
For cochlear implant users, weather poses additional challenges.
A cochlear implant has an earpiece and a magnet attaching the device to the implanted component. The exterior magnet cannot be too strong because it will damage the skin. That means it’s fairly lightly attached. When I take off a hat or scarf, or pull a sweater over my head, it’s very likely to sweep the c.i. off with it. It flies across the floor or into the street or even into the path of oncoming traffic. This is not something they tell you in the c.i. manuals.
If you are unlucky enough to slip on ice or snow and hit your head, the c.i. may also fly off. I lost one that way on a blustery evening. (My head hurt too.)
If you’re not wearing a hat on a windy day, the wind itself can dislodge the earpiece. That happened to me on a ferry last summer. A gust of wind swept my hair and the implant flew right off. Fortunately, the deck of the ferry was metal and so the magnet stuck to the metal deck instead of skittering overboard.
Tight hats or headbands can also be a problem. For me, they put pressure on my hearing aid ear, making it uncomfortable and sometimes evoking a squeal. If I hold an umbrella too close to my head, the spokes act as a magnet and pull the c.i. off.
So what’s the solution? Nothing very insightful. Be careful. Make sure you’re aware of your surroundings at all times. Take your hats, scarves and sweaters off carefully. Don’t wear your cochlear implant out in the wind (especially near water) unless you’re also wearing a hat or scarf to anchor it.
What are your weather-related stories? Advice for others? Please share.
In November, the FDA issued a ruling that will make life easier for cochlear implant recipients living in rural areas.
Implant surgery and immediate follow-up for mapping and programming must be done at a medical center or specialized clinic, but the new FDA ruling would allow remote programming for later adjustments. The audiologist and patient communicate via two-way video, with the audiologist programming the implant via computer just as he or she would in person.
The new ruling applies to Cochlear America’s Nucleus Cochlear Implant System, but other implant companies will probably follow with similar features. The ruling may eventually apply to programming hearing aids as well.
The FDA approved remote programming for patients age 12 and over who have had their implant for at least six months and who are comfortable with the programming process.
The FDA based its ruling on a clinical study of 39 patients, each of whom had had an implant for at least one year. The study included one in-person programming and two remote programming sessions for each patient. “Speech perception tests one month after each session showed no significant difference between in-person and remote programing,” the FDA said.
This comes to about 62 million Americans, for whom access to affordable healthcare is a major concern, according to an earlier article in Health Data Management. David Schmitz, M.D., president of the National Rural Health Association, testified to a congressional committee last July. He added that broadband providers must invest in the necessary technological infrastructure to make telemedicine possible.
Audiologists in rural areas are even rarer than physicians. Telemedical programming allows qualified audiologists to reach far more patients than they would ordinarily be able to do.
Speaking of the November FDA ruling, Malvina Eydelman, MD, director of the Division of Ophthalmic, and Ear, Nose and Throat Devices in the FDA’s Center for Devices and Radiological Health, said that telemedicine can “reduce the burden to patients and their families, especially those who must travel great distances or need frequent adjustments.” Cochlear implants need adjustments not only as the user’s hearing adjusts to the implant, but as new technology becomes available. Since programming is done via the external processor, telemedicine is an easy and appropriate tool.
Almost half of all hearing loss has an underlying genetic cause. Late-onset hearing loss, which occurs after the acquisition of speech, may appear in generation after generation, often progressing to a severe or even profound loss. Or it may skip generations, passing the faulty gene along to unsuspecting offspring.
Those affected, even if they were aware that they might eventually lose their hearing, are usually part of the hearing world and do not know sign language. The loss may be severe enough to be disabling, even with sophisticated hearing technology. Preventing this loss, even when anticipated, has not been possible.
On December 20th, researchers at the Broad Institute of MIT and Harvard and the Howard Hughes Medical Institute published a study in the prestigious journal “Nature” that holds promise for prevention of hereditary loss.
Why do we care about a study on mice? Mice, like all mammals including humans, cannot regrow damaged hair cells. If prevention works on mice, it may work on other mammals. Mice are also the test subject for studies on regeneration of hair cells, which would allow a reversal of hearing loss.
The mutant gene, whimsically called Beethoven by researchers, is found in the hair cells of the inner ear. Because the gene is dominant, it takes only one to cause damage. That also means it may exist alongside a healthy copy of the gene. One of the challenges for researchers was to find a way to target just the mutated gene without disrupting the normal copy.
The technique the researchers used, called CRISPR, is a gene editing technique that the journal “Science” cited as the 2015 Breakthrough of the Year. I won’t try to explain the technique (or even the acronym) but here’s a link to a reader-friendly article in the L.A. Times that laid out the technique – and its potential dangers.
What distinguished the new study, according to the scientists, is that this is the first time a genome-editing protein has been ferried directly into the relevant cells to halt progression of genetic hearing loss.
Direct delivery of the protein allows “exquisite DNA specificity,” according to the press release. The specificity is needed to selectively disrupt the pathogenic copy of the gene without disrupting the normal copy.
Since this type of genetic hearing loss generally manifests as late onset, it would allow researchers to test suspected carriers of the defective gene (the Tmc1 gene) and to treat carriers. As co-senior author Zheng-Yi Chen, associate professor at Massachusetts Eye and Ear said, the later onset allows “a precious time window for intervention.”
The subjects of the study were 100 Beethoven-model mice carrying one copy of the defective gene and one normal copy. Untreated, the mice began to show hearing loss at four weeks, and by eight weeks were profoundly deaf (as measured by auditory brain-stem response). The treated mice, in comparison, responded to sound at about 65 decibels, the level of normal human speech.
Peter Barr-Gillespie, a sensory biologist at Oregon Health and Science University who was not involved in the study, praised it (in the “New Scientist”) as a “pretty significant piece of work.” He noted, however, that the decibel level at which the treated mice could hear was relatively loud compared to the hearing threshold in wild mice, which is 30 to 40 decibels. “It’s nowhere near the threshold of the wild-type mice, [but] the 10-15 decibels could make a huge difference in humans,” he said. “That sort of loss of hearing is very noticeable in people and could make for substantial improvements in quality of life.”
As always with gene editing, one concern is possible undesirable changes in the DNA. Senior co-author David Liu said the researchers had not observed “any off-target editing in the animal.” In the specific cells treated, they found only one modification, in an area not known to play a role in hearing. One major concern, however, would be the potential to develop cancer. Stephen Tsang, a clinical geneticist at Columbia, praised the study as “good for basic research“ (in “Axios”) but, like others, noted that there are many more steps to prove it safe and effective for humans.
This study showed that gene editing prevented, rather than reversed, hearing loss in mice. But for those affected by genetic hearing loss, it’s a promising step. “A lot of additional work is needed before this strategy might inform the development of a therapy for humans,” co-senior author David Liu said, “but at this stage, we’re delighted and excited that the treatment preserved some hearing in the animal model.”
For more information on living with hearing loss, see my books on Amazon.com.
Hearing loss is often referred to as an invisible disability, because there are no telltale markers — no wheelchair, no white cane. It’s invisible even compared to Deafness, with its vibrant silent language.
For a long time, people with hearing loss wanted to keep it invisible. They wanted hearing aids no one could see, they pretended they could hear when they couldn’t. Even today hearing aid companies advertise: “So small no one will ever know you’re wearing them.” Hearing loss is for old people, or damaged people, and our culture values youth and health.
But as more and more of us use hearing aids – both because we are getting older and because we live in a noisy society – we want accommodations. We want captions on our TV’s and in movie theaters, we want hearing assistive devices that work in lectures and live theater. (The hearing assistive device that works best in large venues is the induction loop, hands down.) We want to be able to hear – even if it means “hearing” through captions – in an emergency room or hospital, in a courthouse, at a town hall meeting, at a house of worship, at a lecture, on an airplane, at a political rally, on public transportation.
We want to be able to work, and we want the accommodations that make that possible.
Hearing loss is a disability that prevents us from participating in corporate, municipal, religious, cultural, and educational life — unless accommodations are provided. Accommodations insure equal access.
We are guaranteed accommodations under the Americans with Disabilities Act. But if we want to claim those accommodations, we need to acknowledge not only that we have hearing loss but that it is a disability. (That’s the name of the act, after all.)
This notion was reinforced by the speaker at our HLAA-NYC chapter meeting last week. Dan Carione, a New York City police offer with an illustrious 28-year career, was forced to retire in 2011 when the NYPD decided officers could not wear hearing aids. He fought that ruling and won. (You can read about his four-year fight in an article published by Hearing Loss Magazine, or in a New York Times Op-Ed.) But before he had any legal ground to stand on, he had to make an important admission to himself.
“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled. That was very difficult for me to accept.”
Dan Carione does not look disabled. He was – and is – a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality. “God bless Colleen [his attorney Colleen Meenan],” he said. “One of the first things she taught me was to use the word disabled. It’s counter-intuitive. Counter-intuitive, it hit me in the head like a dart because I didn’t want to use the word disabled. But if you’re not disabled, the ADA can’t protect you.”
So if we want access equal to the access that hearing people have, we have to be open about our hearing loss. We have to acknowledge that it is a disability. That does not mean it’s disabling – it’s only disabling if we are denied the accommodations that make us equal.