Welcome to Listening!

This is the first issue of a new monthly information resource from American Cochlear Implant Alliance (ACI Alliance). Listening is a vehicle for us to share information on cochlear implants and hearing loss with hearing healthcare providers, adult CI recipients (and those exploring CI), parents and family members interested in CI, educators who work with deaf and hard of hearing children, and anyone wanting to learn more about cochlear implants.

ACI Alliance is a not-for-profit organization created with the purpose of eliminating barriers to cochlear implantation by sponsoring research, driving heightened awareness and advocating for improved access to cochlear implants for people of all ages. There is a wealth of information on our website.

You are receiving this inaugural issue of Listening because you are an ACI Alliance member or have expressed interest in our work. We encourage you to share sign-up details for this free e-newsletter with patients, family members, colleagues or anyone who may be interested.

Our work at ACI Alliance follows our mission encompassing research, advocacy, and awareness. Accordingly, Listening covers all three.

The Incredible Hulk Lou Ferrigno Shares Early Thoughts on his Cochlear Implant

Actor and bodybuilder Lou Ferrigno received a cochlear implant in February 2021. In a 20-minute interview with ACI Alliance Executive Director Donna Sorkin, he discusses his lifelong hearing loss and why he went forward with a cochlear implant at age 69. He is candid about the challenges he faced during childhood and how he overcame them using amplification, lipreading, and his determination to not let challenges stand in his way of moving forward in life. A friend’s recent success with a cochlear implant provided the impetus for Lou to explore one for himself as means of staying vital and connected to others. Children and adults alike note how inspirational they found Lou’s comments and his determination to overcome adversity.

Rehabilitation for Adults Post Cochlear Implantation

Although therapy is almost always incorporated as part of the CI process for children, the same is not true for adults. Naama’s Blog, offered by ACI Alliance as “Cochlear Implant Rehabilitation for Adults,” is a comprehensive resource for adults and professionals offering guidance on a range of topics. It is free with open access.

Recently we partnered with a widely disseminated magazine in the field, The Hearing Journal, by developing a regularly running series to advance understanding of rehabilitation for adults post cochlear implantation. Each entry is designed to guide adults on how to build listening skills. First in the series was an overview of rehab—Optimizing Outcomes with a Cochlear Implant: Tips for Adults.

How Recent Scientific Discoveries are Advancing Cochlear Implant Benefits—Recording of a Workshop for Adults, Parents, and the General Public

This recorded event, held live in May 2021, is for anyone who wants to learn more about cochlear implants. Featured speakers are internationally recognized cochlear implant scientists and clinicians who share and engage on up-to-date research and clinical experience in an accessible manner. It is appropriate both those individuals (or family members) who have, and those who are exploring, cochlear implants. Session run is 3 hours, free, and captioned.

Stories about Children and Adults (including Veterans)

Have you, a patient, or someone you know wondered what it’s like to receive a cochlear implant and how it affects one’s life? At ACI Alliance, we interact every day with cochlear implant recipients and family members. We collect recipient stories to help others understand the CI process and the benefits. We recently published a story about an 80 year old man from Arkansas who received a cochlear implant and subsequently noted that his attitude changed from "my life is ending" to "my life has a new beginning."

We spoke with Veterans who generously shared their experience of receiving cochlear implants via the VA system and hoped that their positive CI outcomes would encourage others to “go for it.”

One of our favorite stories is about a boy with cochlear implants who competed in the National Spelling Bee. We interviewed him (by telephone!) to ask him about the competitive process, how he prepared for the spelling bee, and what advice he has for other students interested in competing.

Be inspired by their stories and let us know if you have a story to share.

ACI Alliance Advocacy Networks: Making our Voices Heard

Advocacy is a core element of our mission, and our members make it possible. We established the State Champion network in 2013 immediately after the organization’s founding to provide a means of supporting advocacy for CI insurance coverage in the state marketplace plans for the Affordable Care Act. Our success there led to expansion in both the number of State Champions and the issues we’ve taken on. Our Champs work on CI insurance coverage (including telehealth and CI coverage for SSD), early intervention for young children, parent choice for families of children with hearing loss, screening for conditions that can lead to hearing loss such as the Cytomegalovirus in infants (CMV), and more.

Cochlear Implant Consumer Advocacy Network (CI CAN)

Our newest advocacy network, Cochlear Implant Consumer Advocacy Network (CI CAN), encourages and supports adult consumers, parents, and others to contribute to our advocacy by sharing their own experiences and stories. Such engagement by those who have personally benefitted (or have witnessed others who have) can be a powerful tool in communicating with elected and appointed officials. Training and guidance materials are provided by our expert staff. Issues that have been taken on by CI CAN members include state legislation to establish screening for CMV in newborns, parent choice on communication options, and insurance coverage for single sided deafness. Join this new network and encourage adult consumers, parents, and professionals to join us.

Insurance Coverage for Cochlear Implantation in Single Sided Deafness and Asymmetric Hearing Loss

With increasing interest in providing CI in single sided deafness or asymmetric hearing loss, cochlear implant clinics report a range of outcomes when seeking insurance coverage for patients. To better understand the insurance environment for cochlear implantation in SSD, ACI Alliance is collecting information on coverage by specific insurers and the approaches being utilized by clinics to successfully secure insurance coverage. The results will be summarized and shared and may guide our advocacy efforts. A white paper on insurance coverage for pediatric SSD was published by ACI Alliance. Additional papers are underway.

ACI Alliance Joins Hearing Health Organizations Calling for Increased Funding of Key Programs

In July, ACI Alliance joined hearing health organizations in Friends of the Congressional Hearing Health Caucus in calling for increased funding for key programs impacting deaf and hard of hearing people. Friends include over a dozen organizations representing hearing healthcare providers, scientists, consumers, parents, and hearing technology companies. Friends requested increased funding for hearing health in the FY2022 Labor-Health-Education appropriations bill. This request included fully funding the Early Hearing Detection and Intervention (EHDI) program, support of critical hearing loss related research through the National Institute on Deafness and Other Communication Disorders, prioritizing hearing screening research across NIH, and addressing pediatric hearing healthcare disparities. To view this and other submitted testimony click below.

CI2022 DC | May 18-21

ACI Alliance hosts an annual clinical research conference focused on cochlear implantation that brings together clinicians and scientists from across the care continuum to share current research and clinical outcomes. CI2022 DC will be held in-person in Washington, DC and will cover wide-ranging topics on CI in children and adults. Students, fellows and interns are encouraged to pursue scholarship opportunities and participate in the student poster competition. Details on Emerging Issues and other topics to be explored are in the conference area of the website.

Content from Prior CI Conferences

Selected outcomes from prior CI conferences such as presenter powerpoints (when allowed by speakers) are posted. There are also videos of keynotes such as the John Niparko Memorial Lecture, which have covered a range of topics of interest to a wide audience.

ACI Alliance Evaluating Cost Effectiveness of Pediatric Cochlear Implantation

In making the case for investing in healthcare interventions, it is important to demonstrate cost effectiveness. Such data is reviewed by governmental agencies for programs like Medicare and Medicaid as well as private health insurers. The Project Hope Study (Mohr et al., 2000) is the most comprehensive examination to date estimating the societal costs of profound hearing loss as an additional $297,000 over an individual’s lifetime. For a child with prelingual deafness the estimation exceeds $1 million. This impactful study is now over 20 years old. To replicate and update the work, ACI Alliance initiated a competitive process and made an award to a group led by the University of Miami.

Telehealth

The COVID-19 pandemic prompted the need for innovative approaches of providing care to CI patients and candidates. ACI Alliance has urged that public and private health care insurers cover remote approaches to CI care when feasible during COVID and consider their continuance after the health emergency is over.

A grant was made to the Cochlear Implant Center at University of California San Francisco Medical Center to explore a model for remote programming and CI speech perception testing that would take place in the patient’s home with the vision of ultimately creating a cloud-based system for remote CI programming and speech perception testing.

Like what you’ve seen? There is no obligation to join to continue receiving Listening but if you wish to be more involved in ACI Alliance, explore the opportunities for membership.