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Accomplishments 2023

MAJOR ORGANIZATIONAL ACCOMPLISHMENTS

2023

Awareness

  • Advanced a comprehensive public awareness campaign to share details of the 2022 Medicare expansion with diverse audiences. The broad objective was to use the National Coverage Determination (NCD) to increase public awareness of cochlear implants for older adults and people of all ages. Among the published articles were:
    • “Cochlear Implants Now More Accessible to Older Adults” (Donna Sorkin, Craig Buchman), featured as the cover story in the January 2023 issue of The Hearing Journal (online distribution 60,000+).
    • “Expanded Medicare Coverage for Cochlear Implants Improve Access” (ACI Alliance staff), Winter 2023 issue of the Hearing Loss Association of America magazine Hearing Life.
    • ASHA Live published a detailed blogpost “Medicare Expansion of CI Candidacy is Life-Changing for Older Patients” (authored by ACI Alliance staff)
    • fyi50+, a health/lifestyle magazine, published “Medicare Expansion Benefits Seniors with Hearing Loss” (Interviews with Donna Sorkin and Ann Liming--a participant in the Medicare expansion study).
    • Hearing Like Me published article on the expanded criteria.

  • These 2023 Medicare expansion articles (ones we are aware of), as well as those that came out in 2022 on the Medicare expansion, are available here https://www.acialliance.org/page/MedicareExpansion Publicity on the Medicare expansion was paired with efforts to increase awareness of CI for people of all ages. Clinics note an increase in older adults seeking CI; some have indicated a double-digit increase in CI surgeries for the older adult demographic

  • Enhanced collaborations with hearing instrument specialists via the International Hearing Society (IHS) with tailored CI information provided for members. A lengthy article offering CE for hearing aid specialists was authored by ACI Alliance for the Summer 2023 issue of The Hearing Professional, the publication of IHS. “Cochlear Implants—How to Help Your Patients Who Struggle with Well-Fit Hearing Aids to Hear Better” was a deep-dive for hearing instruments specialists who want to learn more about CI.

  • A companion resource to the IHS article for hearing instrument specialists was a lunch-time virtual course “How to Help your Patients who Struggle to Hear Better (and Love Your Services)” given by Meredith Holcomb and Donna Sorkin. The live virtual course was attended by over 200 people and continues to be viewed as a recorded offering.

  • The fourth and final paper in the candidacy series authored by the ACI Alliance task force on candidacy in bilateral deafness in adults was published in June 2023 in The Laryngoscope. https://onlinelibrary.wiley.com/doi/full/10.1002/lary.30879 All four papers were endorsed by the American Academy of Audiology.

  • The first three ACI Alliance candidacy papers were awarded the Reader’s Choice Award from Ear & Hearing after publication in that journal, an award given to the articles that have been accessed most often on the journal website and/or through the on-line portal. The four papers have ACI Alliance summary “cards” for use in wide sharing. https://www.acialliance.org/page/DeterminingCICandidacy

  • Published the 50th blogpost for Naama’s Blog: Cochlear Implant Rehabilitation for Adults. Blog is #2 in Google search for adult CI rehabilitation.

  • Published two “Patient Handouts” in The Hearing Journal: Managing Auditory Fatigue and Using the Telephone with a Cochlear Implant.

  • ACI Alliance website resources appear on the first page of Google search for 66 CI related terms, up from 50 in the prior year. The website is a “featured snippet” for five keywords, which is featured at the top of the search page organically. Website traffic for paid ads increased 15%; organic search traffic increased 4%. Examples of these page 1 terms include: cochlear implant for older adults, cochlear implant candidacy, steps to a cochlear implant, age limit for cochlear implant, cochlear implant insurance, and Veterans and cochlear implants.
  • Two issues of Calling magazine were published; the free Listening online magazine audience grew to 9,000 subscribers. https://www.acialliance.org/page/ListeningACIAlliance Listening has become a widely used resource for those interested in, but outside of CI care, as demonstrated in a recent message asking from someone asking to be added to the subscriber list: “I am a speech-language pathologist providing early intervention services to children with hearing loss and am excited to have an additional resource for myself and to share with my families!”
  • Emphasized hearing health in primary care. Provided support to CI clinicians to expand this discussion by facilitating presentations at state meetings of family physicians. Johns Hopkins CI staff presented at the February Maryland Academy of Family Physicians. University of Michigan staff presented at the September Family Medicine Midwest Conference on “Hearing Loss: When Hearing Aids are not Enough.”

  • Continued the primary care discussion with an editorial in the September 2023 issue of The Hearing Journal “Increasing Cochlear Implant Awareness in Hearing and Primary Health Care.” https://journals.lww.com/thehearingjournal/fulltext/2023/09000/increasing_cochlear_implant_awareness_in_hearing.6.aspx

  • Encouraged global awareness of hearing health as part of The World Hearing Forum’s outreach and stakeholder initiatives.

  • Emphasized outreach to the broad audiology community with collaboration with the organizations of audiologists (ASHA, AAA) and presentations on the AudiologyOnline platform.

  • Organized and presented a 5-part series in March 2023 on AudiologyOnline—Adult Assessments in Hearing Healthcare: Working Across the Continuum—with content on adult assessment, roles of audiologists and dispensers in working with hearing aid users, quality of life instruments and how to use them to personalize care, adult perceptions of CI, and optimizing outcomes in hearing technology (hearing aids and CI). Series talks had average rating of 4.5 (out of 5) and attracted 3000+ attendees, and continues to be offered as a recording.https://www.acialliance.org/page/AdultCIWebinars2023

  • Expanded adult consumer/parent resources with six new webinars as part of the Tuesday Talks series for a total of 12 free webinars available on various aspects of CI. Series has over 3500 views with the most popular topics being CI surgery (700 views/Daniel Zeitler) and CI activation (600 views/Meredith Holcomb).https://www.acialliance.org/page/Webinars

  • Developed and re-organized website content to respond to inquiries and public discussion on cochlear implants for children and adults and advocacy. A needed new resource is Cochlear Implant Misconceptions, which takes on myths often expressed in articles and other media. https://www.acialliance.org/page/cimisconceptions

  • Increased following and engagement across social media platforms. Experienced 53% visitor increase to Facebook page over the previous year with shared content reaching 66,000 unique account holders. Facebook posts on Tuesday Talks series, CI candidacy papers, and Patient Handouts each reached over 4,000 individuals. LinkedIn grew 20%, and the new Instagram account reached over 2,000 individual accounts over the the year with over 300 accounts actively engaging.

  • Organized and presented at a joint January 2023 webinar organized by the American Academy of Pediatrics and the American Society of Pediatric Otolaryngologists. The focus was on understanding the principles of newborn hearing screening, how to discuss hearing loss impacts with families, and reviewing resources.

Research

  • CI2023 Dallas: Emerging Issues in Cochlear Implantation was held May 18-21, 2023 as an in-person meeting. Content included keynote addresses, podium sessions, live panel discussions, the (Re)Habilitation Connect Forum, poster exhibits, a student poster competition and CI industry leader satellite events. Meeting attendees represented a diverse group of audiologists, physicians, scientists, psychologists, speech pathologists, educators, students, and industry members.

  • The conference premiered meetings for three new Special Interest Groups (SIGs) for adult rehabilitation, students/residents mentorship and support, and needs of hearing health professionals with hearing loss. The SIGs have continued to meet after the conference to identify research needs on these topics with the adult rehab SIG meeting monthly to encourage research and discussion.

  • A study supported by ACI Alliance “Cochlear Implantation and Educational and Quality-of-Life Outcomes in Adolescence” by an interdisciplinary team led by Ivette Cejas PhD was published in JAMA Otolaryngology Head and Neck Surgery in August 2023. Children with CIs had better academic performance compared with children without CIs with similar levels of hearing loss. The largest benefits were seen for children who received implants early (prior to age 18 months), who performed at or above age and gender norms for language and academic achievement. Adolescents with CIs reported better quality of life than children who did not have CIs. This important study adds to the body of research demonstrating literacy benefits of cochlear implants for young children. Oberkotter Foundation provided financial support to ACI Alliance to support this research effort.

  • Facilitated member survey research via distribution of survey instruments in February and August 2023. Member surveys collected data on a range of CI related topics including aural rehabilitation for adult CI recipients, quality of life in adolescents with CIs, CI activation timeline, why adult CI candidates don’t move forward (professional perspectives) https://www.acialliance.org/page/MemberSurveys

  • Presented research findings on Early Hearing Detection and Intervention (EHDI) websites conducted by ACI Alliance staff (Nichole Westin, Journal EHDI 2022) at the EHDI 2023 Conference and suggested how state EHDI agencies could improve their websites to better support parent decision-making.
  • Published “American Cochlear Implant Alliance Task Force Recommendations for Determining Cochlear Implant Candidacy in Adults” by Daniel Zeitler et al in The Laryngoscope July 2023 online (print in February 2024). Paper is available via free open access and was endorsed by the American Academy of Audiology. An infographic summarizing key points was developed to support wide-ranging sharing. https://www.acialliance.org/page/DeterminingCICandidacy The entire set of four candidacy papers is now available and is being widely used.

Advocacy

  • Developed comment on the “Clinical Report” published by the American Academy of Pediatrics (AAP) in Pediatrics on Hearing Assessment in Infants, Children and Adolescents: Recommendations Beyond Neonatal Screening. The ACI Alliance commentary highlighted inaccuracies and bias in the AAP report and was the only publicly shared comment on the AAP website though other organizations wrote privately to AAP expressing concern regarding the report.https://publications.aap.org/pediatrics/article/152/3/e2023063288/193755/Hearing-Assessment-in-Infants-Children-and

  • Grew State Champion network to 177 members representing 45 states and Washington, DC. State Champions were instrumental in leading efforts for a range of state policy changes.
  • Involved consumers and parents via CI CAN (Cochlear Implant Consumer Advocacy Network) in advocacy, engaged them as moderators in webinars, and published their stories in Calling and on the website.

  • Tracked and supported member involvement in multiple state LEAD-K bills by reviewing legislation, drafting letters and testimony, and suggesting advocacy approaches for Champs and other members. Monitored outcomes to discuss impact of such legislation on family access to information and choice. Continued to monitor implementation of LA School Board Resolution and similarly aimed legislation to discuss underlying discrepancies with Congressional intent and communicated information to elected and appointed officials, thus impacting rollout of improper policies.

  • Began initiative to explore and suggest communication tools on the benefits of listening for language development in children with hearing loss to address the information being shared by some professionals indicating that unless children used ASL, they would be language deprived. Together this group of professionals, parents, and deaf adults developed and disseminated a “Listening—Language—Literacy” infographic that has been widely utilized by organizations in the field. Efforts are underway to further advance the research-based messages stemming from the Literacy Task Force work including an editorial in The Hearing Journal entitled “The Power of Parents.” https://www.acialliance.org/news/662649/The-Power-of-Parents--Language-Nutrition.htm

  • Grew work with coalitions and other groups to advance our public policy agenda including Friends of the Congressional Hearing Health Caucus, Independence Through Enhancement of Medicare and Medicaid (ITEM), Habilitation Benefits (HAB) Coalition, and Deaf and Hard of Hearing Alliance (DHHA).

  • Expanded advocacy on congenital Cytomegalovirus (cCMV) to advance screening and awareness. Collaborated with National CMV Foundation and other national organizations on state and possible federal legislation. Supported efforts of State Champ promotion of legislation in their states by providing research, bill text examples, letters and ongoing guidance. State screening bills were passed (targeted and universal) in 2023 legislation in Texas and Connecticut. Legislative efforts initiated in Massachusetts and Michigan.

  • To advance priorities on cCMV, joined a new multidisciplinary coalition—Connections—focused on CMV legislation and consideration of the virus in the Recommended Uniform Screening Panel (RUSP). RUSP formulates a national guideline for newborn screening.

  • Distributed four federal action alerts using our grassroots advocacy system (Ujoin), generating over 150 responses advocate letters. The Ujoin system allows us to rapidly respond to legislation and generate emails, texts, and tweets to Members of Congress. Action Alert page:https://www.acialliance.org/page/actionalerts

  • Provided comments and testimony on key policy issues. https://www.acialliance.org/page/Comments_Testimony

  • Led Parent Choice alliance with other organizations in the field, coordinating on state LEAD-K bills and other measures that could limit access to listening and spoken language options for children with hearing loss.

  • Continued and grew outreach and work on improving Medicaid coverage. Washington State and South Carolina finalized coverage for adults starting January 1, 2024. Georgia continues to focus on expanding full coverage to all adults and Arizona has begun replicating work from 2023 for 2024. Colorado and Missouri are also focused on 2024. Lessons learned from different approaches will help in future activities.

  • Continued to expand work on health insurance access including tracking and addressing denials of CI in Single Sided Deafness (SSD) with web resource on private insurance coverage policies for SSD underway.
  • Organized task force to explore and address coverage of CI in Medicare. Moved forward with plans to submit an NCD using retrospective data for SSD coverage.

Build an Effective Organization

  • Expanded involvement of students and trainees to encourage CI as a career with 46 participants in the student poster competition at CI2023. Awards made to three winners and Three runner-ups. Increased number of student members in ACI Alliance to 185.

  • Awarded 22 student scholarships for CI2023 to individuals from a diversity of disciplines and programs (e.g., medicine, audiology, deaf education, speech-language pathology, hearing science).

  • Increased membership by individuals with military background to a total of 82. Military members expressed interest in having military-specific CI resources including virtual sessions on VA offerings on CI and Q&A with CI surgeons and audiologists.

  • Special interest groups (SIGs) formed with meetings held at the CI2023 conference in Dallas for students/residents, members with hearing loss, and professionals wanting to explore adult rehabilitation for individuals post CI. Each SIG had 25-30 in-person attendees in Dallas. The Adult Rehab SIG has been particularly active with monthly meetings on how and why to establish adult rehab programs within CI programs.
The mission of the American Cochlear Implant (ACI) Alliance is to advance access to the gift of hearing provided by cochlear implantation through research, advocacy and awareness.