Category Archives: Advocacy

Managing Through Quarantine with Ponto

Annika enjoys hearing her TV shows… and Mom doesn’t have to!

Like so many other families in the United States, Shannon Sappington and her daughter, Annika, are dealing with the challenges posed by quarantine as best they can. Although many people with hearing loss like Annika face additional struggles, her Ponto bone anchored hearing device is actually helping both mother and daughter through this difficult time. They were kind enough to shoot this homemade video demonstrating how Annika’s Ponto and streaming accessories are making it easier to stay inside and in close quarters.

“I am proud of how willingly Annika let me record her connecting to her streamer and the TV!” said Shannon. “That is a godsend Oticon Medical invention…. letting her watch her favorite shows and saving my sanity by not have to keep listening to the same shows again and again!”

Are you a Ponto wearer who needs a TV adapter, audio streamer, or other accessory to make life during quarantine more bearable? Visit our Oticon Medical website to see what is available!

 

Ally’s Act Introduced in the Senate

We are excited to share good news about the progress of Ally’s Act provided courtesy of Melissa Tumblin. Melissa is a longtime Oticon Medical Ambassador and the founder and executive director of Ear Community, a nonprofit organization that helps children and adults born with Microtia and Aural Atresia. Melissa’s daughter, Ally Tumblin (for whom the Act is named) has Microtia and Atresia and wears a Ponto bone anchored hearing device.

Insurance coverage for bone anchored hearing devices and more

Ally’s Act (H.R. 5485) is a bipartisan national level bill that would ensure private insurance companies provide coverage for osseointegrated hearing devices (OIDs), including bone anchored hearing systems and cochlear implants. The Act, if it becomes law, will help ensure that private insurance providers cover these costs, including the hearing devices and their accessories, surgery and medical exams.

Currently, only about half of the states in the U.S. currently have legislation in place to cover hearing aids, and OIDs are not always included. Ally’s Act, as a federal bill, would require that children and adults needing bone anchored hearing devices or cochlear implants received coverage in every state through private insurers listed under the Affordable Health Care Act.

Ally’s Act has been endorsed by numerous high-profile hearing industry institutions, including the Alexander Graham Bell Association for the Deaf and Hard of Hearing, the American Academy of Audiology, the American Speech-Language-Hearing Association, and most recently the Hearing Industries Association.

Ally’s Act introduced into Congress

Ally Tumblin wrote to Congressman Joe Neguse (D-CO) in May of 2019 for Better Hearing and Speech Month and asked him to help her advocate to hear better. He responded to Ally in September of that year and acted soon after. Along with the co-chairs of the Congressional Hearing Health Caucus, Congressmen David McKinley (R-WV) and Mike Thompson (D-CA), Ally’s Act was introduced to the House Committee for Energy and Commerce with bipartisan support in December of 2019.

Companion bill mandating hearing device insurance coverage introduced to Senate

In promising news, the companion bill to Ally’s Act was introduced to the Senate on September 8, 2020. This bipartisan bill (S. 4532) was introduced by Senator Elizabeth Warren (D-MA) and Shelley Moore Capito (R-W.VA).

In response, Rep. Neguse issued the following public statement, “I am proud that Senator Warren and Senator Capito introduced the Senate companion to Ally’s Act. This bipartisan and bicameral legislation is critical for people like Ally Tumblin, who require osseointegrated-integrated hearing devices (OIDs), including bone anchored hearing aids and cochlear implants.

“It is a testament to Ally, her family and her advocates that this is now a nationally recognized need that will benefit so many Americans. We look forward to Ally’s Act passing both Chambers of Congress and ultimately being signed into law,” Rep. Neguse concluded.

Senator Warren issued the following statement regarding her support for Ally’s Act: “Far too many Americans are left behind due to hearing loss and cannot access the devices they need because their insurance will not cover it, leaving many adults and children in the US without a solution to restore their hearing. Our bipartisan bill is a simple fix that increases access to these specialized hearing devices and gives Americans across the country a chance to be a part of every conversation.”

Senator Capito agreed, adding, “Many of us take for granted the gift of hearing and how often we rely on our senses to effectively communicate with one another. It is important that we take the necessary steps to improve our health insurance systems and ensure these critical devices are readily available for those who need them. OIDs are even more crucial for individuals born with hearing deficiencies, as the first five years of life are important for speech and language development. I’m proud to introduce Ally’s Act, which will help establish better access to these critical hearing devices for those that need them.”

How you can support Ally’s Act becoming law

As Ally’s Act continues to advance through both the House and Senate, you can help by writing to your local congressional representatives and senators.

“Ask them to support H.R. 5485 and S. 4532 and tell them why this bill is important to you or your child or a loved one who requires the use of a bone anchored hearing aid or cochlear implant,” Melissa Tumblin advises.

For more information and to learn more about how you can help support Ally’s Act, please visit:  https://earcommunity.org/about/allys-act-h-r-5485/.

Ready to take the next step in your hearing journey? Click here to find a clinic near you!

Jay Wietecha is a Proud Ponto Advocate

Jay hopes his journey to better hearing will inspire others

Jay Wietecha lost the hearing in his right ear at the end of July 2018 due to a 1.8cm acoustic neuroma that was surgically removed. Despite his surgeons’ best efforts to leave the hearing nerve intact, it still went out and he was left with single-sided deafness (SSD). He spoke to a treatment coordinator post-op who also happened to have SSD following removal of an acoustic neuroma, and was a Ponto user. She advised him that it was Jay’s best option and worth looking into. In October of 2018, Jay went through the minimally invasive Ponto surgery (MIPS) and had his first Ponto activated in November. In the following clip, he shares words of encouragement about the MIPS experience.

He was also better able to engage in conversations at busy restaurants and while driving in a car and enjoying background music. Without the Ponto, these situations were more challenging and less pleasurable. 

“I can comfortably say that the Ponto has made coping and living with SSD much easier and I enjoy a higher quality of life when using it,” Jay said.

Jay found he got the best results at home watching TV with background noise elsewhere in the house, and at work where he practices dentistry in noisy operatories with music playing in the background. He found he was better able to engage with patients and staff and didn’t have to work as hard to hear. He also became more aware of what was going on around him. Here’s what Jay wants you to know about the ease of holding conversations with a Ponto bone anchored hearing system.

Jay also played the drums for the first time since losing his hearing because he’d wanted to wait until he had the Ponto processor to see if it would sound the same as it has since he started playing a little over 30 years ago. The result? “It sounded perfect! I actually thought I might have to stop playing altogether when I lost my hearing, so of course I was filled with emotion over how great things sounded and I can continue playing,” said Jay.

Jay was excited to have the opportunity to try out Ponto 4 when he attended Oticon Medical’s annual New Advocates Meeting earlier this year. He was impressed by the smaller size and all its features.

Overall, Jay feels that wearing a Ponto increased the quality of his life and helped him move beyond the tragedy of losing half of his hearing. “There have actually been times when I feel as normal as I did before I lost my hearing,” he said.

Ready to try something new? Learn how to upgrade to a Ponto processor today!

Nancy Smith Oberman on upgrading to Ponto 4

Part 2 of 2

As we shared in Part 1 of Nancy Smith Oberman’s upgrade story, she had her concerns about moving to a bilateral Ponto 4 bone anchored hearing system from her Ponto 3 SuperPowers. The following post traces her journey from deciding to upgrade through her life with Ponto 4, which she originally shared via a series of Facebook posts.*

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Decision made – Nancy chooses Ponto 4

Steel Gray Ponto 4

I authorized my audiologist to order my right, steel-gray Ponto 4, and will order the left in January. I’m still absolutely amazed by how well the Ponto 4s work for me. I’m very lucky that I’ve been able to trial them in just about every situation I experience on a daily basis. I was not very positive they would work for me, but as I tell people all the time — louder does not equal good hearing.

I think the thing I’m most impressed with is the fact that I can hear behind me, at least when someone is speaking to me. I don’t necessarily have to face the speaker, which has been a blessing. I’m also quite surprised I don’t get feedback, because I’m pretty sure they are set at the ceiling. Sometimes I will turn them up a tad — my left cochlea is not as good as the right, which is why I’ve always boosted the Pontos with a traditional hearing aid, which gives me the needed extra amplification on the left.

I love that I can control my settings with my Apple® watch! With Ponto 4, I’m experiencing sound that seems even more natural and with less vibration, if that makes sense.

I’m just as happy as I can be… as are my staff!  I find that only I can hear what I’m listening to now and so am enjoying taking my phone calls via Bluetooth® anywhere. Who would have thought?

Follow-up after getting Ponto 4 confirms better hearing

Audiogram

Just left my audiologist’s office to pick up one new Ponto (second will be procured in January). As I’m getting ready this morning, he shoots me an email reminding me to bring my SuperPowers to the appointment. He wants to test me with both, to compare. Actually, I was looking forward to doing just that; cannot deny I’ve had a twinge or two over the last month, thinking I may very well have convinced myself the Ponto 4 was better because it was newer and had that direct connect Bluetooth.

We go into the sound booth and start with the Ponto 4s. After the tone thing, he does the speech recognition, where I have to repeat sentences that are spoken with increasing background noise and voices. I thought I did okay, so great! Next, we move to the SuperPowers. No change in program; exactly what I’d used for the last two-and-a-half years. What did I think? Yep, the SuperPowers were going to work better than the 4s, which were much quieter… sigh.

When we finished, my audiologist was grinning. “Well,” I asked, “was I wrong in thinking I heard better with the 4s… kinda bummed?”

“Nope,” he said. “You actually understood speech better with the 4s!” With 1-3 being normal speech recognition (1 being better than 3), I hit at 1.6 with the Ponto 4s. With the Ponto3 SuperPowers, I hit at 2.8. Yay, I was correct — I really do hear better with the 4s!

Advice to Ponto wearers considering an upgrade

My advice to others considering whether to upgrade to a Ponto 4 from their SuperPower device is that you have got to give a trial more than five minutes, or even five hours or an entire day! I sat in a noisy restaurant with friends the other day and didn’t miss any of the conversation even with all the clanking of dishes, crying children, other conversations, etc. While you might not experience a big “a-ha” moment of noticeable hearing improvement, don’t be discouraged. The changes are so subtle (which I think is awesome, actually) that it may take your brain a day or two to catch up to the marked improvement. This is as close to normal hearing as I can remember all those years ago, before the onset of my hearing loss.

I think Oticon Medical has hit this out of the park!

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*NOTE: Originally shared via a series of Facebook posts with permission.

Nancy Smith Oberman on upgrading to Ponto 4

Part 1 of 2

Nancy Smith Oberman had her concerns about upgrading to a bilateral Ponto™ 4 bone anchored hearing system from her Ponto 3 SuperPowers. After all, her SuperPower devices worked great, plus with her profound level of hearing loss, she was doubtful that a non-SP device could help her hear as well as she needed. The following traces her journey from curious but cautious to official Ponto 4 convert.*

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To upgrade or not to upgrade? That was my question

So, unfortunately, I have to add a hearing aid back into the mix. Not sure what’s going on — my hearing hasn’t changed much from my last audiogram even though it’s a little worse, but not enough (at least so my audiologist says) to make a big difference. I’m surmising my brain is getting older and I’m getting crankier, and just a little more tired of working so damn hard to hear people who refuse to speak up. Wonder how everything will work when Ponto 4 Super-Powers (when they  come out) are added. Gotta love technology!
I want to trial the Ponto 4 and am trying to get the Ponto 4 demo now. I’m kind of afraid that my hearing loss is too great for non-SuperPower devices, but my audiologist knows I’ll only be satisfied once I am certain one way or another.

First step: trialing Ponto 4

I’m scheduled to get bilateral Ponto 4s programmed for trial Wednesday. In the meantime, I love teaching people! I’m working with the company that set up our phone system to come up with a solution to resolve my difficulty with phone usage. I had quite the conversation explaining the bone anchored hearing system and the Bluetooth® direct connection capabilities of the new Ponto 4. The person I spoke to was fascinated, to say the least! I consider it a win-win: I’ve educated more people about hearing loss and the technology to aid those of us who have it, plus I resolved my phone issue.

My Ponto 4 trial experience

I picked up two Ponto 4s Wednesday for trial. First off, I am amazed at how well they pick up speech, even for someone who has as great a loss as mine (I’m programmed to the ceiling with my Ponto 3 SuperPower devices). There is definitely a noticeable difference between the two sound platforms, with the (Oticon Opn™) open platform seriously a marked improvement.
Surprisingly, since these are programmed to the ceiling, I’ve had no feedback to speak of. Besides clearer, crisper speech, I hear as well as I do with the SuperPower, which I currently wear along with a regular hearing aid. I’ve played a little with wearing them without my hearing aid, and found that I still have the clear speech, but can’t hear much of anything else (e.g., background noise), which gives me a feeling that my ears are stopped up. Didn’t go a long time, since I was at work teaching, and was a tad nervous I would struggle hearing my students. But the few conversations I had with my coworkers outside the classroom were normal. I didn’t struggle to hear them even with students milling about or being loud while on the mats.
Hopefully, I’ll be braver next week and teach the whole day with just the bilateral Ponto 4 and without my hearing aid. Got to give them enough time to really test their performance.

Pleasantly surprised by Ponto 4

The Ponto 4s are so small and lightweight that it feels as if they aren’t even attached. I do miss the ability to mute from the processor itself but using the Oticon ON™ app is no different than using the app with my hearing aid. The direct Bluetooth is absolutely wonderful, except I can only use it in private. As with the streamer, everyone else around me can hear sounds traveling through the processors. At least my coworkers are used to me being in my office with my door closed.
I will be trialing the Ponto 4s for at least a month, so I can test them in all aspects of my life and hearing situations. So far, even though there was no initial “ah-ha” moment like I experienced with the Ponto 3 SuperPower, I am certainly impressed! I sure thought they wouldn’t work for me. I teach adults hands-on activities as well as in classrooms, and it’s quite busy and loud. Surprisingly, Ponto 4 seems to have a marked ability to mute that noise when I’m engaged in conversation.

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Will Nancy decide to take the plunge and upgrade to Ponto 4? Find out in our next post!

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*NOTE: Originally shared via a series of Facebook posts with permission.

Oticon Medical Hosts Annual New Advocates Meeting

Over the weekend of October 11-13, we hosted 40+ attendees — including Ponto wearers and their families — for our annual New Advocates Meeting, which was held at Oticon Medical’s headquarters in Somerset, NJ. A few long-time Ambassadors, including Angela and Sarah Zabel and Kevin Hotaling, also attended in order to share their experiences and provide coaching and inspiration.

Friday night inspiration

We kicked the weekend off with a welcome reception and dinner held at the Bridgewater Marriott where attendees were staying for the weekend. While serving dessert, we conducted a Share Your Story activity during which everyone took a few minutes to introduce themselves and talk about their experiences with hearing loss and journeys to better hearing with Ponto bone anchored hearing systems.

Friday night dinner and story sharing

A busy Saturday schedule

Bright and early Saturday morning, we kicked of a full day of educational panels on topics ranging from Ponto 4: Introduction and Design to New Advances in Bone Anchored Hearing Procedure, all conducted by various Oticon Medical staffers and audiology professionals. Hands-on workshops included how to use Canva to enhance social media posts and how to add visual effects and edit self-made videos. We also introduced Oticon Medical Friends, our exciting new community portal through which wearers will be able to stay in closer contact with our company and one another. Meanwhile, our child wearers and their siblings were kept entertained by Mad Science of West New Jersey and The Lizard Guy and his live animal exhibits.

Mad Science presentation

Saturday night, we took a fun trip together on the Sparkling NYC Skyline Dinner Cruise. Attendees and staff enjoyed a delicious buffet dinner and a couple of loops around New York City before reaching the main attraction — a close-up view of the Statue of Liberty. There was also plenty of time for dancing and fun on-board.

New York skyline by boat

Statue of Liberty

 

Sunday wrap-up

Sunday morning, we held a panel discussion on Technology and Access, which included a lively Q&A about insurance-related topics. Then Melissa Tumblin and her daughter Aly presented key Oticon Medical staff members with Ear Community Microtia and Atresia Awareness Awards in recognition of all they’ve done to improve the lives of people with these conditions. The weekend concluded with a farewell luncheon, and then everyone headed back home with the knowledge and motivation to be the best possible advocates on behalf of those with hearing challenges.

Aly & Melissa with Pres. John Sparacio

We would like to thank all of our attendees and Ambassadors for sharing their stories and further developing a supportive, tightly connected community!

Click to learn more about Ponto bone anchored hearing systems, including Ponto 4, our smallest and first processor with direct wireless streaming and all the benefits of Oticon’s proven Opn™ technology.

Ear Community goes to Washington with Ponto SuperPowers

Advocacy Day 2019

On February 26, Ear Community was invited to be a part of the 2019 Advocacy Day on Capitol Hill.  This annual event invites advocates on behalf of dental, oral, and craniofacial research to speak directly with federal policymakers about how insurance coverage and research funding would improve the lives of those living with these conditions.

Organizer Melissa Tumblin founded Ear Community and has a daughter, Ally, with Microtia and Atresia who wears a bone-anchored hearing system (BAHS). Melissa was able to arrange the meetings with House and Senate representatives because she sits on the Patient Advocacy Council for the National Institute of Dental and Craniofacial Research (NIDCR).

Melissa and Ally were accompanied by eight other Ear Community families, including one medical doctor, to Washington, D.C. representing the states of Washington, Colorado, Tennessee, Maryland, and Virginia.

Lobbying on behalf of families living with hearing loss and related conditions

On Monday, February 25, Melissa met with directors from the National Institute of Health representing the NIDCR, American Association for Dental Research (AADR), and International Association for Dental Research (IADR) to discuss collaborative efforts regarding children and adults affected by craniofacial challenges due to Microtia and Atresia and Goldenhar Syndrome.

The next day, the Ear Community families met with the following representatives and staff members on Capitol Hill:

  • Staff members for Senator Lamar Alexander’s (R-TN) office
  • Legislative staff members for Congressman Joe Neguse’s (D-CO), Senator Cory Gardner’s (R-CO), and Michael Bennet’s (D-CO) offices.
  • Legislative staff members for Senator Chris Van Hollen (D-MD), and office staff for Congressman John Sarbanes’ (D-MD) and Senator Ben Cardin’s (D-MD).
  • Legislative staff and the press secretary for Congressman Denny Heck’s (D-WA) office and an Appropriations representative for the NIH staff for Senator Patty Murray’s (D-WA) office.
  • Senator Tim Kaine (D-VA), Congresswoman Abigail Spanberger (D-VA), and legislative staff members for Senator Mark Warner (D-VA) and Congressman Ben Cline (R-VA). Sen. Kaine was celebrating his birthday and signed a little girl with Microtia and Atresia named Mazie’s cast. Both Sen. Kaine and Rep. Spanberger tweeted about the Ear Community visit.

Sen. Mark Werner and Ear Community FamiliesRep. Spanberger with members of Ear Community

Melissa also scheduled phone meetings with Congressman David McKinley (R-WV) and Congressman Michael Thompson (D-CA), as they both serve as co-chairs of the Congressional Hearing Health Caucus. Rep. McKinley is a cochlear implant user, and his grandson wears a bone-anchored hearing aid.

Each family left behind a detailed packet of information with the story of the Ear Community organization, an explanation about the need to wear bone-anchored hearing systems, and a sample of anaudiogram along with other helpful facts and figures. Each family explained to legislators and their staff that a bone-anchored device is their only option, because they don’t have the same hearing challenges that qualify others to wear cochlear implants or benefit from traditional hearing aids. Therefore, wearers need lawmakers to work toward mandating bone-conduction hearing device coverage by insurers nationwide. Otherwise, insurance companies are effectively discriminating against thousands of children and adults with hearing loss by not covering these medical devices.

A Stranger Things star gives back

Gaten Matarazzo poses with Ear Community kids for Advocacy Day 2019.

The Ear Community families also received an exciting treat: thanks to the NIDCR and AADR, they were given the opportunity to meet actor Gaten Matarazzo from the hit TV show Stranger Things! He was part of the Advocacy Day non-profit organization lobbying to bring awareness to Cleidocranial dysplasia (CCD), a rare genetic mutation affecting the growth and development of teeth and bones.

Melissa expressed her appreciation to Oticon Medical for lending her two Ponto 3 SuperPower BAHS on soft bands. During her visits, representatives tried on the Pontos and listened to her talk during their meetings, so they could experience for themselves what it’s like to hear through bone-anchored devices.

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Ear Community hosts a series of picnics where Microtia and Atresia families can learn more about Oticon Medical’s Ponto 3 SuperPower. Please click through this link for the 2019 picnic schedule.

Ready to try your first Ponto BAHS or upgrade to our latest model? Click below to get in touch with an audiologist in your area who can help you choose the best option for your hearing needs.

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Click the button if you want to learn more about our Ponto bone anchored hearing systems or arrange a trial.