Does hearing loss research & development understand what we need?

Posted by Julie, Volunteer Mentor @julieo4, May 28 8:35am

On May 25th HLAA, in collaboration with the Federal Drug Administration (FDA), held an open webinar. The purpose of this 4 hour event was to provide an opportunity for people with hearing loss to share their experiences and concerns. Polls identified the greatest concerns hard of hearing people have, and identified their hopes for a future where hearing loss is better understood and treated with a higher priority.

Managing background noise was identified as the most frustrating issue people have whether they are using sophisticated hearing technology or not. This is no surprise to anyone with hearing loss. It is interesting to note, however, that developed technologies used for other purposes have managed to eliminate this problem. Broadcasters at major sports events do use equipment that minimizes background noise so their voices can be heard. Why is this kind of technology not used with hearing devices? Panelists expressed concern that miniaturization in development of hearing instruments was the focus, rather than focusing on making products better by eliminating this noise issue.

That is just one of the conversations held within the webinar. The transcript of this very interesting webinar will be posted at the HLAA website soon. Meanwhile, anyone who has concerns about treatment for hearing loss has an opportunity to comment via the website by answering a few of the posted questions you will find there. https://www.hearingloss.org/hlaa-pfdd/

They want to know what matters to us. The comment options is only available until June 25th. I hope you'll provide information to the FDA about your personal experiences.

A very hopeful part of this event included a discussion on potential cures for sensorineural hearing loss, something we have only dreamed about. It was pointed out that many dreams have come true in this field during the past 30 years. Speech to text apps, cochlear implants, realtime captioning, etc. We've come a long way, but there is a long way to go. Perhaps some of it relates the the fact that way too many hard of hearing people refuse to take action. They hide their hearing loss because society has stigmatized the condition. 80% of people who could benefit from hearing technology, do not have it. Only 5% of the people who could benefit from cochlear implants have them. We must let the FDA know more about how poor hearing affects our lives. As long as it is misunderstood, change and improvement will happen slowly.

I sent a written comment about those “squaky” sounding speakers at the drive up windows we all have to use now at banks, pharmacies, and fast food places. Lip reading, written notes,and speech to text apps don’t usually work at drive up windows either. Certainly more could be done to improve those things.

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I watched that event and felt it was the best 5 hours I've spent in trying to make it better for our future. The goal was to inform the FDA about hearing loss. Even though the title of the event was "Patient Focused Drug Development", the FDA uses the same procedure when approving Devices (Hearing Aids (both bone conduction and air conduction), as well as cochlear implants and any other products that will be developed). On April 8, there was an introduction on the FDA approval process that you may find interesting. You can view that archive here:

I was a panelist during the morning session of the May 25 event. The topic focused on what it's like to live with hearing loss (Symptoms and Daily Impact). The afternoon session dealt with Current and Future Treatments (what would we like to see). The panelists were used as discussion starters, to get the audience to share their input while we shared a little bit about ourselves. These were the additional comments which I entered into the comment section which Julie mentioned. Here it is again: https://www.hearingloss.org/hlaa-pfdd/
1) Communicating during covid has prevented me from scheduling a long overdue colonoscopy. Receptionists wear a mask plus there is a window between us.
2) Caption quality is poor, especially with recorded movies. No reason to not be perfect. I avoid people, I do not want to avoid the TV.
3) No compatibility between the accessories from HA manufacturers.
4) Repair of an aid or accessory that requires a return to manufacturer results in at least 5 days without hearing.
5) Hearing on phone is difficult with accents. Plus, there are those automated messages that do not wait long enough for a response due to delayed captions. I've been disconnected many times.
6) I avoid fitness classes since we need to hear instructions but the risk of sweat damage to my aids makes me avoid these interactions.
Perhaps you can relate or have similar issues. I, too, encourage you to submit input. The more information, the better. After the 30 day input period, HLAA will provide a "Voice of the Patient" report to the FDA. That report will be available on the HLAA website.
Tony in Michigan

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@tonyinmi

I watched that event and felt it was the best 5 hours I've spent in trying to make it better for our future. The goal was to inform the FDA about hearing loss. Even though the title of the event was "Patient Focused Drug Development", the FDA uses the same procedure when approving Devices (Hearing Aids (both bone conduction and air conduction), as well as cochlear implants and any other products that will be developed). On April 8, there was an introduction on the FDA approval process that you may find interesting. You can view that archive here:

I was a panelist during the morning session of the May 25 event. The topic focused on what it's like to live with hearing loss (Symptoms and Daily Impact). The afternoon session dealt with Current and Future Treatments (what would we like to see). The panelists were used as discussion starters, to get the audience to share their input while we shared a little bit about ourselves. These were the additional comments which I entered into the comment section which Julie mentioned. Here it is again: https://www.hearingloss.org/hlaa-pfdd/
1) Communicating during covid has prevented me from scheduling a long overdue colonoscopy. Receptionists wear a mask plus there is a window between us.
2) Caption quality is poor, especially with recorded movies. No reason to not be perfect. I avoid people, I do not want to avoid the TV.
3) No compatibility between the accessories from HA manufacturers.
4) Repair of an aid or accessory that requires a return to manufacturer results in at least 5 days without hearing.
5) Hearing on phone is difficult with accents. Plus, there are those automated messages that do not wait long enough for a response due to delayed captions. I've been disconnected many times.
6) I avoid fitness classes since we need to hear instructions but the risk of sweat damage to my aids makes me avoid these interactions.
Perhaps you can relate or have similar issues. I, too, encourage you to submit input. The more information, the better. After the 30 day input period, HLAA will provide a "Voice of the Patient" report to the FDA. That report will be available on the HLAA website.
Tony in Michigan

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Thank you Tonyinmi. It's good to have you back!

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It's so much easier to complain, withdraw, get frustrated, give up, etc. than it is to take charge and become an advocate. When we take charge we let decision makers know we have hearing loss and that we need specific types of support. Most of us live, love, socialize and work in the hearing world. The FDA needs to know how we feel. What we believe is possible, etc. It's OK to dream. Many dreams become reality if someone is inventive enough to figure out how to get there.

The FDA needs to get behind the hard of hearing population when it comes to technology that will help us. Support research and development. Not drag their feet on making it possible to get new products out and available to the people who need them.

Do you know that President Trump signed bipartisan legislation in 2017 that supported development and marketing of Over the Counter hearing aids? (OTC) The law requires that the FDA develop regulations/standards for those OTC devices. It's 2021 and those regulations/standards have not yet been published. The pandemic didn't become an issue until late in 2019, so that's not a viable excuse. Obviously this wasn't considered important and was pushed aside.

Meanwhile, many fly by night manufacturers have come up with 'hearing devices' that are officially referred to as PSAPs (Personal sound amplification products), that are being advertised and sold as 'hearing aids'. How they are getting away with this, we don't know, but they are. You have seen this on TV, on Facebook, and all over the internet.

A true OTC hearing aid will have controls, do more than simply amplify, may have options depending on the product, etc. It will do more than amplify, and it will be far less costly than hearing aids that are fit and sold by hearing healthcare professionals. These devices will be primarily for people who have mild to mild/moderate hearing loss, not for those with more severe loss. They will be 'entry level' hearing aids. While professionally fitted hearing instruments are the gold standard, data shows that millions of people who could benefit from basic hearing aids cannot afford them and are forced to go without. OTC, for many, will be a starting point. Once they realize that hearing instruments help them they will likely seek further help and higher priced products. The FDA needs to get on this.

FDA also needs to know that people with adult onset hearing loss have often had to step down from jobs they were trained for. This affects incomes. It also affects relationships. The prevailing attitude among many is that hearing loss is a minor or lesser condition. Those of us who don't hear well know better than that.

The FDA needs to hear from you. Speak up! Please. Share your comments at: https://www.hearingloss.org/hlaa-pfdd/

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Julie, Thank you for the most interesting discussion. For some time I have been trying to get my husband to try a morecaudiologist centered approach to managing his hearing loss. He has had 2 failed attempts with Big Box hearing testing and aids. Where do we look next?
Sue

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@sueinmn

Julie, Thank you for the most interesting discussion. For some time I have been trying to get my husband to try a morecaudiologist centered approach to managing his hearing loss. He has had 2 failed attempts with Big Box hearing testing and aids. Where do we look next?
Sue

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Learning how to manage hearing loss is challenging. We who have it, know we frustrate others. We are embarrassed to have to ask people to repeat things. We are embarrassed when we respond incorrectly to what we thought we heard. It's easier to drop out of things and become reclusive or angry. That can be much harder for people who are naturally outgoing; a major life loss and change.

Big box hearing aids are usually decent quality products. They are not OTC hearing aids. Costco, for example, sells several excellent name brand products. Those stores employ audiologists and hearing instrument specialists. They are not all alike. The skill of the person who fits the hearing aids is as important as the product. It is about more than testing, reading an audiogram, and programming a hearing aid. A good provider will take time to counsel a patient, especially one who is hesitant or frustrated with the products s/he has tried. That takes time that some providers are unwilling or unable to spend with the customer.

Your husband is likely beyond the mild hearing loss stage. He should see a good audiologist who will take time to teach him how to use his hearing aids.It's so much more than just putting them in a person's ears and letting them walk out the door. It helps to talk to other people who use hearing aids successfully. Find out where they get them, what they have and ask for tips. Just talking about it with someone who ‘gets it’ can be therapeutic. That's why HLAA can be so helpful. It brings people together to talk about 'it'. There is an HLAA chapter in the Twin Cities. They've had some excellent Zoom discussions lately. It might help to connect with them. Sometimes it's a significant other who does the connecting.

Twin Cities HLAA Contact/s:
Christine Morgan president@hlaatc.org
763-447-9672
Mike Higgins vicepresident@hlaatc.org

There are no easy answers, but I hope this helps a bit. You will find a lot of good information on the HLAA website. http://www.hearingloss.org

REPLY
@tonyinmi

I watched that event and felt it was the best 5 hours I've spent in trying to make it better for our future. The goal was to inform the FDA about hearing loss. Even though the title of the event was "Patient Focused Drug Development", the FDA uses the same procedure when approving Devices (Hearing Aids (both bone conduction and air conduction), as well as cochlear implants and any other products that will be developed). On April 8, there was an introduction on the FDA approval process that you may find interesting. You can view that archive here:

I was a panelist during the morning session of the May 25 event. The topic focused on what it's like to live with hearing loss (Symptoms and Daily Impact). The afternoon session dealt with Current and Future Treatments (what would we like to see). The panelists were used as discussion starters, to get the audience to share their input while we shared a little bit about ourselves. These were the additional comments which I entered into the comment section which Julie mentioned. Here it is again: https://www.hearingloss.org/hlaa-pfdd/
1) Communicating during covid has prevented me from scheduling a long overdue colonoscopy. Receptionists wear a mask plus there is a window between us.
2) Caption quality is poor, especially with recorded movies. No reason to not be perfect. I avoid people, I do not want to avoid the TV.
3) No compatibility between the accessories from HA manufacturers.
4) Repair of an aid or accessory that requires a return to manufacturer results in at least 5 days without hearing.
5) Hearing on phone is difficult with accents. Plus, there are those automated messages that do not wait long enough for a response due to delayed captions. I've been disconnected many times.
6) I avoid fitness classes since we need to hear instructions but the risk of sweat damage to my aids makes me avoid these interactions.
Perhaps you can relate or have similar issues. I, too, encourage you to submit input. The more information, the better. After the 30 day input period, HLAA will provide a "Voice of the Patient" report to the FDA. That report will be available on the HLAA website.
Tony in Michigan

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I had the issue of having my hearing aids get repairs. I know it's not something everyone can do, but I always keep my old aids for this purpose. Though they aren't the most recent tech that my new ones are, it at least helped me get through that week of not having my new ones. But there does need to be something, maybe some sort of loaner aids to help with hearing when the aids getting fixed. I don't know if I could survive much without some sort of listening device, which is why I always keep my old pair so I at least have some hearing.

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@mickey5909

I had the issue of having my hearing aids get repairs. I know it's not something everyone can do, but I always keep my old aids for this purpose. Though they aren't the most recent tech that my new ones are, it at least helped me get through that week of not having my new ones. But there does need to be something, maybe some sort of loaner aids to help with hearing when the aids getting fixed. I don't know if I could survive much without some sort of listening device, which is why I always keep my old pair so I at least have some hearing.

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@mickey5909, I did use my old aids when these had to go out for repair. My hearing loss is severe to profound so I need custom molds to get the needed power. It's harder to get decent loaners when a custom mold is needed. The hardest part to deal with was the lack of streaming from my phone with my old aids. My current aids stream whereas my older ones do not. I went back to my old self when wearing my old aids. I cringed when the phone rang since it was so hard to hear on the phone.
Tony in Michigan

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@julieo4

Learning how to manage hearing loss is challenging. We who have it, know we frustrate others. We are embarrassed to have to ask people to repeat things. We are embarrassed when we respond incorrectly to what we thought we heard. It's easier to drop out of things and become reclusive or angry. That can be much harder for people who are naturally outgoing; a major life loss and change.

Big box hearing aids are usually decent quality products. They are not OTC hearing aids. Costco, for example, sells several excellent name brand products. Those stores employ audiologists and hearing instrument specialists. They are not all alike. The skill of the person who fits the hearing aids is as important as the product. It is about more than testing, reading an audiogram, and programming a hearing aid. A good provider will take time to counsel a patient, especially one who is hesitant or frustrated with the products s/he has tried. That takes time that some providers are unwilling or unable to spend with the customer.

Your husband is likely beyond the mild hearing loss stage. He should see a good audiologist who will take time to teach him how to use his hearing aids.It's so much more than just putting them in a person's ears and letting them walk out the door. It helps to talk to other people who use hearing aids successfully. Find out where they get them, what they have and ask for tips. Just talking about it with someone who ‘gets it’ can be therapeutic. That's why HLAA can be so helpful. It brings people together to talk about 'it'. There is an HLAA chapter in the Twin Cities. They've had some excellent Zoom discussions lately. It might help to connect with them. Sometimes it's a significant other who does the connecting.

Twin Cities HLAA Contact/s:
Christine Morgan president@hlaatc.org
763-447-9672
Mike Higgins vicepresident@hlaatc.org

There are no easy answers, but I hope this helps a bit. You will find a lot of good information on the HLAA website. http://www.hearingloss.org

Jump to this post

Thank you Julie. Just last night he told me he is willing to give it another try.
He's not a group kind of guy (hearing issue maybe?) but I'll share the HLAA info with him.
Sue

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Many years of experience with aids demonstrates the lack of communication with the audiologist. Unless the client is also a trained audiologist the patient is unable to express what the problem is. I often wish for a device that allows the audiologist to hear exactly what the client experiences.

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@sueinmn

Thank you Julie. Just last night he told me he is willing to give it another try.
He's not a group kind of guy (hearing issue maybe?) but I'll share the HLAA info with him.
Sue

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The 'group thing' stymies a lot of people when it comes to getting help. You know how helpful it is to talk to others who share your personal health experiences. It validates feelings, frustrations and experiences. Just knowing that someone else knows what you are going through because they have been there helps.

A big issue with hearing loss, that is overlooked, is the fatigue factor. It takes a lot of energy for a person with hearing loss to concentrate in social settings.When you've exhausted your energy it's easier to tune out than to try to keep up. When that happens, we tune out and get lost in the conversation. Others don't understand this. They simply think we are not paying attention and fault us for that. "If you'd pay attention you'd know what we were talking about." We ask for repeats to the annoyance of others. We stop doing that because we know it's annoying them. We get very frustrated when we ask for a repeat and the response is "Never mind, it wasn't important." This cycle continues. It's easier to drop out.

I use a remote hand held microphone in social settings. Without it I may as well be home alone. It's not perfect, but it takes the edge off the stress and fatigue. It also shows that I am trying to help myself. Audiologists should share add on technologies with their clients. They rarely do. Consequently, we learn more about what's available from each other than from them. That hesitancy to share these 'extras' is exacerbated by the reluctance hard of hearing people have for getting help in the first place. They don't want to 'over sell', which is understandable.

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I would like to see the invention of a hearing aid that you could just place in your ear with a wire attached to it so you could remove from your ear instead of the thing that goes over the outside of the ear.

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