One Potential Way to Cure Hearing Loss

At the end of May (May 30), a few days after Americans honored Veterans on Memorial Day, a New England biotech company announced that it had received a grant from the Department of Defense to research a therapeutic opportunity that may help reverse hearing loss.

Cochlear hair cells_Credit- W. McLean
Cochlear Hair Cells. Credit:W. McLean

A 2015 study of almost 50,000 soldiers showed that peak noise levels in combat can reach 180 dB. Combat veterans have a 63% increased risk for hearing loss. Two and a half million veterans have service-connected hearing disabilities.

Clearly there is a need for treatment.

Frequency Therapeutics based in Woburn, Mass., and Farmington, Ct., announced that it had received a $2 million grant from the Department of Defense to investigate the restoration of hearing after noise-related damage as a result of military service-related injuries.

Frequency’s Progenitor Cell Activation, or PCA Regeneration, technique, uses a combination of small-molecule drugs to stimulate inner ear progenitor cells to multiply and create new hair cells. Hair cell regeneration happens spontaneously in fish and birds, but not in mammals.

Humans are born with only 15,000 hair cells in each ear and do not develop any more after birth. Damage to these hair cells over time results in a loss of hearing. Figuring out how to make regeneration happen in mammals would be a major step towards finding a cure for hearing loss, and this goal is being pursued by others in addition to Frequency.

In December, Frequency announced the completion of the first in-human safety and tolerance study of its proprietary drug combination, FX-322. (You can read more about it here.) The drug is injected into the inner ear using a standard intratympanic injection, with the patient awake.  The Phase 1 trial was conducted at Victoria Eye and Ear Hospital in Melbourne, Australia, on 9 adults with severe to profound sensorineural hearing loss who were scheduled for cochlear implant surgery 24 hours after receiving the injection.

In the press release announcing the DOD grant, Frequency noted that the PCA Regeneration platform targets the root cause of disease without removing stem cells from the body. This avoids issues that can develop with traditional stem cell or gene therapy, which can affect cells other than those targeted. Frequency’s FX-322 awakens the dormant progenitor cells already in the ear, initiating cell division and differentiation to repair the damaged hair cells.

Frequency hopes this technique can be used elsewhere in the body as well, to restore healthy tissue, and it has a number of other programs in development including preclinical research in muscle regeneration and type 1 diabetes. Frequency plans to initiate a Phase 2 trial for hearing regeneration in the U.S. later this year.

This grant applies only to military personnel with service-related hearing loss, although of course if the technique is found to work it would be available to others with sensorineural hearing loss. More than 48 million Americans of all ages have some degree of hearing loss.

**

This study is one of many efforts to find a biological cure for hearing loss. I will be writing about others in the coming months. If you are a researcher with relevant information please email me at katherinebouton@gmail.com

 

The Noise of War

This Memorial Day, as we honor veterans with parades and flags and, yes, barbecues, we should remind ourselves of the toll that war takes on hearing.images

Two and a half million veterans have service-connected hearing disabilities. Tinnitus is the number-one claim for all service related disability, with more than 1.5 million veterans receiving disability benefits for it. Another million receive benefits for service-related hearing loss.

Master Sgt., Donald Doherty, a retired Marine and Vietnam veteran who is now the Chair of the Board of Trustees of the Hearing Loss Association of America, lost his hearing as a result of gunfire and artillery noise during his 1965-66 tour in Vietnam. He has worn hearing aids since June 1970. He recently retired from the Department of Veterans Affairs after 25 years of service.

Doherty is a member of “Heroes with Hearing Loss,” supported by HamiltonCapTel. Heroes with Hearing Loss is group of veterans who hold interactive workshops to help veterans and their families come to terms with hearing loss and find solutions. You can follow them on Twitter at @HWHLVeterans.

Hearing loss is even more an invisible disability in the military than it is elsewhere. Among veterans it is often overshadowed by other injuries. But as Heroes with Hearing Loss notes, hearing loss and other injuries are  “intertwined both physically and emotionally — as a trigger, a constant reminder or an everyday frustration. It is a very unique and personal challenge for many veterans.” The website has a useful list of resources and web addresses. 

For the past several years the group has held a packed workshop at HLAA’s annual convention, which will be held this year June 21-24 in Minneapolis. I wrote about their 2014 presentation in “An Invisible War Wound,” published on November 11th, 2014, Veterans’ Day.

“Marines — and anyone in the armed forces — have been instilled with a sense of pride, the need to act independently, to do it yourself. It’s a sign of weakness if you reach out for help,” Doherty said at that event. Eventually, you realize it’s affecting “not only yourself but everyone around you.” Heroes with Hearing Loss helps veterans accept help.

Captain Mark A. Brogan, Ret., was one of the speakers that year. He was injured in a suicide bomb attack while on active duty in Iraq in 2006, sustaining a severe penetrating head injury, multiple shrapnel wounds, and a nearly severed right arm. He spent months in a coma at Walter Reed Medical Center. It was not until his traumatic injuries had been treated, he said, that he began to be aware of his hearing loss and its permanency.  He also began to realize how hearing loss and TBI were entwined.  The part of the brain that controls speech perception was injured in the blast, he said, and that damage combined with physical injury to the ear to make speech difficult to understand. He knew he needed help, but like many in the military asking for help was difficult.

HLAA was founded in 1979 by Rocky Stone, who also suffered service-related hearing loss. HLAA continues to honor and offer resources for veterans, on both the national and chapter level. Mark Brogan joined the Knoxville, Tenn., chapter: “It’s just good to get with  others who have the same type of disability,” he says.

To see some of the ways HLAA is involved with veterans nationally, go to HLAA’s website, or just click through directly to “Veterans.”

For more information about living with hearing loss, see Katherine Bouton, Amazon.com.

Debunking the Stigma of Age

Whenever I give talks, there’s one Power-Point slide I use that surprises people. That’s because it directly contradicts the notion that hearing loss is something for the elderly.

As this graph shows, hearing loss is for all of us, male or female, at any age.

Slide05

The majority of people first realize they have hearing loss between the ages of 20 and 59. That’s especially true for men: 64 percent. And it’s close to true for women: 50 percent. This survey was based on self-report, so we don’t know if they “developed” hearing loss at a certain age. More accurately, they first noticed it at a certain age. People are notoriously slow to recognize hearing loss. A study using audiologic metrics would probably find even higher numbers.

So, 64 percent of men with hearing loss first knew they had it between the ages of 20 and 59, and 50 percent of women did. Add those whose hearing loss was detected before the age of 20, and you’ll find that that 79 percent of men had hearing loss by age 60, as did 70 percent of women.

So why do we associate hearing loss with aging? Why is this stigma so powerful?

The elderly do develop hearing loss: But new hearing loss over the age of 60 constitutes a much smaller percentage of the total than those who knew they had a hearing problem when they were younger.  Where does this age=hearing loss idea come from?

Hearing tends to decline with age, so the loss among the elderly is on average more severe than it is in younger people. This prompts people who have had untreated hearing loss for decades to finally get hearing aids.Slide13

Those we notice wearing hearing aids are usually old. This 2012 graph shows that approximately 15 percent those over 80 who need hearing aids have them. It’s not a large number but it’s a whole lot larger than those wearing hearing aids who are younger than 70.

A huge majority of elderly people have hearing loss, and among them a fair number wear hearing aids. This leads to a natural association of hearing loss with aging. Look at the top graph again. The majority of those with hearing loss developed it before they turned 60.

Hearing loss isn’t just for the elderly. So let’s dispense with that stigma of age and take care of our hearing. Get hearing aids!

 

 

 

Not Much of a Joiner?

NYnewyorkcitychapter

“I’ve never been much of a joiner.”

I was encouraging an acquaintance with hearing loss to come to one of our HLAA Chapter meetings. I told her about our informative programs and guest speakers. I also said the meetings were a chance to meet other people with hearing loss.

She agreed to give it a try, meanwhile explaining that she wasn’t much of a joiner and not to expect to see her often.

That’s what I always used to say too. “Thanks, but I’m not much of a joiner.”

Here are some groups I never joined: the PTA, a church, the co-op board, the block association, political action groups, yoga classes, meditation groups, group therapy, French classes, Al-anon, dog training.

I always thought I just wasn’t much of a joiner. But suddenly (how could I not have seen this before?) I realized that it had everything to do with my hearing. It’s not that I don’t like people. Or committees. Or volunteer work. Or meditation. Or a well-trained dog. I just can’t hear.

It took me a while to join HLAA. I first went to one of the annual conventions in the course of reporting for my first book. The research seminar that year was on advances in finding a cure for hearing loss, primarily through gene therapy and stem cell therapy. It was fascinating but, more important, I could “hear” it. I could hear it by virtue of the live captioning and the hearing loop that had been installed for the event.

Someone I met there invited me to come to a chapter meeting back in New York. I’m not really a joiner, I said, but come September I did show up at a chapter meeting. Captions! A hearing loop! A really interesting program, with a panel of audiologists talking about hearing strategies.

What I could not do then and still cannot do is join in the socializing before and after the formal program. Luckily we have name tags so I know who I’m talking to, which is a tremendous help. But a substantive conversation is out of the question. Just as I always did before I told people I had hearing loss, in the old days of denial, I nod and smile and ask encouraging questions. But if you’re reading this, and you’ve tried talking to me at a meeting, it’s possible I haven’t heard a word. Follow up with an email!

I’m open about my hearing loss. In fact, I joke that hearing loss has become my profession. But there are certain circumstances that just don’t work for me. One is social time at our chapter meetings. Another is exercise class, which I will write about in my next post.IMG_3613

The photo at left was taken at last year’s New York Walk4Hearing, an annual event that will be held this year on September 23. If you’re not sure you want to try a chapter meeting, come to the Walk. No need to register. Details on our website. 

Learn How to Listen

One of the ways I’ve learned to hear better with my severe hearing loss is by working with Geoff Plant, of the Hearing Rehabilitation Foundation, just outside of Boston. photo-HRF

Over the course of a couple of summers, I would drive to Boston from my house in Western Mass. for a two hour session with Geoff. A few years ago I wrote about a four day summer program I did with Geoff at the University of Connecticut.

Geoff is speaking tomorrow night (March 20th) at the New York City Chapter of HLAA. The meeting starts at 5:30 with socializing and refreshments and the formal program starts at 6. The room has a hearing loop, so those with hearing aids and cochlear implants need just to switch to telecoil mode to hear clearly, and we also have CART captioning. The address is 40 East 35th Street, in the downstairs assembly room of the Community Church of New York. The room is fully accessible and no advance registration is needed. For more information, go to our chapter website: hearinglossnyc.org.

Aural rehabilitation, in the broadest sense, teaches you to listen better. It is often used for people getting cochlear implants and sometimes for those getting hearing aids for the first time. It can take many forms, from computer programs to group sessions to individual sessions with an audiologist or speech-language therapist.

One of the techniques Geoff uses is called KTH speech tracking, a program originally developed by Swedish researchers. Another version was designed by a team at Gallaudet University, a Washington, D.C.

Here’s how speech tracking works: In alternating five- and 10-minute sessions, the audiologist reads from a prepared script, stopping at the end of each line whether or not it’s the end of a sentence or even makes sense. The client repeats what has been read. The audiologist’s computer keeps track of how fast the client is responding. This is done with the speaker’s face visible, and with it covered. Not surprisingly, most everyone does better when the speaker’s face is visible. The exercises are designed to enhance the speed and agility of the brain to hear sound and repeat exactly what was read.

If you’re new to hearing aids or a cochlear implant, auditory rehabilitation helps your brain adjust, which ultimately helps you hear better. The result is improved, faster, more accurate word recognition. If auditory rehab isn’t offered in your area, there are lots of ways to create your own version.

The most important thing I learned from my sessions with Geoff was what I call “mindful listening.” Instead of jumping in with “What?” he helped me learn to think first, to consider the context and what might make sense. This sounds time consuming but in fact it becomes an unconscious habit.

If you’re in New York on March 20, please join us at our chapter meeting to hear Geoff speak.

Geoff Plant’s aural rehabilitation technique is just one of many ways you can practice hearing better. In-person rehab, either singly or group, may be available at a nearby medical center or audiological practice.

You can also try one of the many online programs: L.A.C.E., Read My Quips, Angel Sound, The Listening Room (Advanced Bionics)., Hear at Home (Med-El).

The website for Cochlear Americas includes an excellent article, “Cochlear Implant Rehabilitation: It’s Not Just for Kids!).

HLAA also offers a guide to listening training programs.. 

Photo Courtesy of the Hearing Rehabilitation Foundation.

 

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

What Does a Hearing Aid Cost?

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: