By Sarah Farnham
Swine flu, SARS, Zika, coronavirus—it seems there is a new epidemic every day. The media claims these diseases demand our attention. Flashy headlines and misinformation quickly spread.
But what if I told you there was a silent chronic disease currently impacting one-third of all adults world-wide, that billions of dollars are wasted attempting to care for its side effects every year because no one knows the root of the problem or that anyone could be its victim?
What if I told you that almost no one was talking about it?
No one except Dr. Keith Darrow, a clinical audiologist and neuroscientist, and his eager research students, Marissa Merrifeild and Aviya Singer. On Tuesday, January 13th, 2020, they decided to say something.
Merrifield, an undergraduate research student at Worcester State University, reached for the handle of the Massachusetts State House only to find that her hand was too sweaty to open it. She wiped her palm on the front of her shirt and succeeded on the second attempt. Her photographer followed her inside. Merrifield’s shoes fell heavily on the linoleum as the weight of the topic she was here to discuss pressed down on her. Would her audience listen?
Merrifield and her partners were here with a very important job. They were about to start the conversation about the debilitating impact of hearing loss on the community.
Legislators need to hear the sufferings of their constituents, and this issue is important. Aviya Singer, a research assistant at Worcester State University, was not expecting a large group in attendance. Sure, they had sent out emails and hung up posters, but they didn’t know if anyone would come. The thought that no one would was disheartening.
Talking about hearing loss is hard. The condition has no visible signs. It progresses slowly, causes no pain, and is difficult to detect early (as people with hearing loss often deny there is a problem).
The silent nature of the disease is not reflective of its scope. Many people have a loved one who, at a holiday gathering or full dinner table, does not talk. Often, they sit quietly in the corner or offer blank stares instead of replies. Hearing loss may be a public health issue, but for many it is also personal.
For the presenters, it was no different. Singer’s grandfather has hearing loss, making him one of the eight million Americans with hearing loss (out of 48 million) who seek treatment. He is part of the reason why Singer chose to pursue her clinical doctorate in audiology. Dr. Darrow’s grandmother suffered from hearing loss and eventually dementia before she passed away. Presumably, many of the people who would come to the stateroom hearing would have similar stories.
As the presenters entered the room, they began to set up their materials. Singer couldn’t find a comfortable spot. Slowly but surely, professionals and staff members trickled inside and took a seat in the wooden rows.
Merrifield calmed down a bit. “It’s just staff,” she thought. “Interns that are all my age.” Singer also began to find comfort in this.
Five minutes before the presentation was supposed to start, the room was nearly full. The door suddenly swung open. A state representative walked in, speaking on the phone. The dynamic in the room immediately changed. The presenters’ hearts began to thump in their chests. Now it was real.
In her mind, Merrifield began to recite her section of the presentation to calm her nerves. “Even a mild hearing loss can increase your risk of developing dementia by two hunudred to five hundred percent,” she thought.
Singer twiddled her thumbs and started to do the same, finding comfort in repetition. “Hearing loss leads to depression, anxiety, an increased risk of falls, dementia, and even premature death,” she thought. Her heart slowed and her breathing relaxed as she practiced. “Fifty percent of the adult population ages sixty to seventy have hearing loss,” she thought. “That’s two million Massachusetts residents at risk.”
Many diseases and conditions increase your risk of hearing loss. The two students summarized the conditions in their nearly forty page, single-spaced recommendation report.
Aside from age and noise exposure, there are dozens of health conditions that can worsen or even cause hearing loss. These include diabetes, cardiovascular disease, kidney disease, thyroid disease, smoking and even ototoxicity.
Knowing this, it is clear that hearing care is health care—something that Merrifield and Singer now had to convince others.
Camera flashes seemed to time themselves with the women’s heartbeats. Then the door swung open again. Another state representative walked into the room, causing another photo shoot. Merrifield could not believe her eyes.
Smiling for the photos, Merrifield continued to recite her main points in her head. It was essential to get this presentation right. “The national average rate of dementia is eleven percent,” she thought. “In Massachusetts, it is much higher, averaging fourteen percent but exceeding twenty-four percent in some communities.”
Massachusetts has a need that is not being met. Affected adults over the age of twenty-one are not covered. This means that $2,000 hearing aids and hundreds of dollars in copays are the responsibility of the patients and their families.
Medicare, a federally-funded public insurance program that is intended for older, often retired communities, covers nothing for hearing healthcare.
Singer considered these problems, trying to plan the right words to convey her urgency. “It seems in our country, when it comes to hearing healthcare, we are willing to give aid to the young and poor,” she thought, “but we do not care for the elderly.”
The room was now packed. The trio had never spoken to such a large audience, let alone a large group of officials.
To start, the crowd was tough. There were a lot of blank stares.
Dr. Darrow began by telling the room hearing loss is a “progressive degenerative disorder” that robs us of our balance, human connection, and brain tissue. And this isn’t even the worst part, he warned. There is a larger, more aggressive disease looming on the horizon of hearing loss: dementia.
People started to lean forward in their seats and sit upright. Interns looked up from their notebooks.
Singer took this opening to assure her audience of a silver lining: “Hearing loss is the number one modifiable risk factor for dementia.” The key word, Singer assured, is “modifiable.” If treated early and correctly by professionals, hearing loss is preventable.
“If you don’t use it, you lose it,” Merrifield said of the brain. The brain is programmed to receive and decipher information all day, every day. If we can’t hear anything, our ears will make up sounds. This is frequently referred to as a phantom ringing in our ears (formally known as tinnitus). Our brains strain to hear whatever they can when there is no input. Not only does our brain make up sound in the absence of real sound, but the brain itself starts to deteriorate. There is evidence that our brains shrink or atrophy as we go long periods without simulation. Cerebral atrophy combines with social isolation and cognitive overload to result in memory loss and dementia for which there is no effective intervention.
But there is hope. Singer and her colleagues postulate that covering the cost of hearing healthcare and talking more about the devastating impact of hearing loss can help prevent cases of dementia, depression, anxiety, and falls. It is far less expensive to pay for hearing healthcare as a preventative measure than it is to care for a loved one with dementia or who has suffered a fall.
The room was completely absorbed as the presentation came to a close. Everyone wondered the same thing: what do we do?
When the panel opened up for questions, audience members asked about specific family members, how to help them, and from whom it was best to seek help. The crowd did not wonder about the research or the evidence. They wondered how they could help their own loved ones avoid this terrible fate.
That is, they cared. The needs of the people would be addressed. Merrifield and Singer found themselves, once again, in a room with Dr. Darrow and state legislators almost a month after the initial presentation. The hour and a half meeting, in the president’s conference room at Worcester State, the three colleagues and state legislators made a plan of action. Every possible opportunity was discussed.
“I was surprised at how receptive everyone was,” said Singer. “It was really very moving.”
One plan, Merrifield reports, could be set into motion as early as this month. Currently, motions are underway to amend the budget plan for the upcoming year to cover the cost of hearing healthcare for everyone under twenty-six. This would add five years to the current age restriction.
“It’s not perfect,” Merrifield says, “but it is progress.”