The founding members were drawn from the country’s top professionals in cochlear implantation:

Thomas Balkany, MD Craig Buchman, MD Teresa Caraway, PhD Jill Firszt, PhD Bruce Gantz, MD Rene Gifford, PhD Donald Goldberg, PhD David Haynes, MD Ronald Hoffman, MD Alice Holmes, PhD

William Luxford, MD Marilyn Neault, PhD John Niparko, MD J. Thomas Roland Jr. MD Jay Rubinstein, MD, PhD James Saunders, MD, MS Susan Waltzman, PhD Kathryn Wilson, MA Nancy Young, MD Terry Zwolan, PhD

MAJOR ORGANIZATIONAL ACCOMPLISHMENTS

2024

Awareness

• The Power of Parents in fostering language in deaf and hard of hearing children with early identification and intervention combined with prompt fitting of appropriate hearing technology was launched as a theme aimed at early intervention professionals, educators, hearing care clinicians, pediatricians, families, and the public. The effort is intended to mitigate messaging by some interests to prioritize sign language over listening without recognizing the importance of encouraging parents to use the language of the home for their children with hearing loss.
  • The Listening—Language—Literacy initiative, developed under the guidance of a task force of individuals who support families of children who are deaf and hard of hearing, has been widely accepted and integrated into organizations’ own efforts. In 2024, our partners in the field translated the infographic into Spanish and Japanese with the content now being used around the world. Versions in French, Korean, and Mandarin Chinese are underway, which will help solidify and amplify the message. https://www.acialliance.org/page/listeninglanguageliteracy
  • A two-part series on fostering parent involvement in language learning given by internationally recognized experts Drs. Dana Sussman and Karl White, was organized by ACI Alliance in collaboration with AudiologyOnline. The courses have thus far been attended by over 1000 people with an average five-star review for both courses https://www.acialliance.org/page/listeninglanguageliteracy
  • An ACI Alliance editorial entitled “The Power of Parents” emphasized the key role of parents in supporting their children to listen and talk. Published in The Hearing Journal, it has been extensively referenced. https://journals.lww.com/thehearingjournal/fulltext/2024/01000/the_power_of_parents.4.aspx
  • A presentation at the annual Early Intervention (EHDI) conference further amplified these concepts with early intervention professionals of the importance of mentoring parents on how to engage with their children as conversational partners. The presentation was titled “Language Nutrition: The Key Role of Families in Fostering Language and Literacy.”

• ACI Alliance resources were featured in leading hearing health publications including features in The Hearing Review on music with cochlear implants, Forbes on the cost of cochlear implants, and a Cleveland Clinic podcast on expanded candidacy guidelines.
  
  
• Partnered with allied organizations to grow aware regarding aspects of CI access including presentations at professional conferences/meetings (EHDI, American Academy of Audiology, ASHA, American Neurotology Society) and two series offerings on the AudiologyOnline (AO) platform on parent empowerment and cochlear implants in SSD for children and adults. The AO series attracted nearly 1000 viewers for each topic with five-star average ratings for all of the individual sessions. These sessions reach the community of audiologists and other professionals interested in, but outside of, cochlear implants.
  
  
• Grew partnership efforts with ASHA with event promotion, collaborative social media efforts to grow CI awareness among general hearing care professionals: ASHA promotion of ACI Alliance CI candidacy research, and ACI Alliance resources on the ASHA website.
  
  
• Joined OPTION Schools, Inc., an international non-profit comprised of listening and spoken language programs and schools for children who are deaf or hard of hearing in Canada, South America, and the US. The OPTION connection is a means of learning from and contributing to the organization’s outreach and advocacy and involving more educators in ACI Alliance.
  
  
• Collaborated with Hearing Health Foundation to increase coverage of cochlear implants on their website https://hearinghealthfoundation.org/treating-hearing-loss
  
  
• CI in single sided-deafness was a priority with a range of activities across awareness, research, and advocacy. CI2024 Vancouver included a keynote lecture by Jill Firszt “Cochlear Implantation of Individuals with Asymmetric Hearing Loss and Single Sided Deafness: Results, Expectations and Gaps in Knowledge” which set the stage for other efforts and aligned with ACI Alliance activities in Research and Advocacy.
  
  
• Partnered with AudiologyOnline on two-part webinar series “Cochlear Implant Best Practices for Adults and Children with Single-Sided Deafness.”  https://www.acialliance.org/page/CIWebinars2024

• Encouragement and promotion of the film Rally Caps (100% rating on Rotten Tomatoes) over the past two years led to the successful 2024 launch across multiple streaming platforms (e.g., Amazon, Peacock). This baseball story features two boys—one of whom has a cochlear implant. ACI Alliance is recognized in the film credits and is honored to provide CI resources on the film website. https://rallycapsthemovie.com/cochlear-implants/

• A new blog Ask the Audiologist was launched as a means of addressing typical questions asked by those beginning a CI journey.  The blog was publicized widely including articles in The Hearing Review, on the website of the British Cochlear Implant Group and on parent resources including the Facebook group Parents of Children with Cochlear Implants. It is now one of the most highly visited areas of the website.
  
  
• CI2024 Vancouver conducted with over 1200 attendees from around the world with particularly strong participation by Canadian clinicians and educators. Key areas of emphasis included CI in SSD, the importance of early exposure to sound for children born deaf, and Federal/NIDCD perspectives. The conference utilized Bettear assistive listening technology at all conference sessions providing enhanced accessibility as well as input to the company representatives present. Student/early career participation continued to grow.
  
  
• CI2025 Boston planning to include new topics including artificial intelligence, CI in children and adults with secondary diagnoses, global hearing health, and connectivity to general technology.

• ACI Alliance website grew as a trusted resource for individuals, clinicians in hearing health, and primary care practices.  Google brings up 81 keywords related to cochlear implants on the first page (up from 66 in the prior year).  The website experienced a 26% increase in website users, a 24% increase in website sessions/visits, a 28% increase in new users, and a 10% increase in organic traffic.
  
  
• Continued outreach on CI to general healthcare providers. Noteworthy was an article in the magazine for medical assistants, Medical Assisting Today which reaches over 40,000 professionals “All Ears: Discovering the Benefits of Cochlear Implants.”
  
  
• Social media engagement on ACI Alliance platforms grew. One post on Facebook reached over 20,000 viewers, and 25% of Facebook posts reached more than 1,000. LinkedIn is increasingly the platform we use to reach professionals. A new emphasis on Instagram allowed our content to regularly reach new audiences with Listening Language Literacy resources viewed over 1000 times with 42% of those views from people who did not previously follow the ACI Alliance account.

• ACI Alliance Facebook post for the 2024 International CI Day had 2200 impressions with 1500 of those comprised of individuals who don’t follow us and did not see the post on our page, but rather because 700 people who do follow us chose to share our post with their networks. This demonstrates the power of social media in reaching new audiences.

• A promotional video involving interviews with members was recorded during CI2024 Vancouver and viewed over 700 times on Instagram with 36% of those views coming from prior non-followers. The video emphasized professional perspectives about cochlear implants, research, and the organization’s role in promotion.

• Three issues of Calling magazine were published; the free online monthly Listening magazine increased to 9,200 subscribers. https://www.acialliance.org/page/ListeningACIAlliance Listening has become a widely viewed resource for those interested in, but outside of, CI and related care inclusion of research references particularly appreciated by this broad audience of readers.

• Expanded viewership of the free ACI Alliance streaming webinar series with 54% growth in total views since year end 2023. The most popular topics were cochlear implant surgery (1,100 views/Daniel Zeitler) and cochlear implant programming (730 views/Meredith Holcomb).

Research

• Societal costs of severe to profound hearing loss was documented in research funded by ACI Alliance and led by Ivette Cejas. The 2024 research updated early work that had been undertaken by John Niparko and others as part of the seminal Project HOPE study published in 2000. This data is invaluable during discussions with elected and appointed officials at the state and national levels. https://onlinelibrary.wiley.com/doi/10.1002/lary.31497

• A committee of clinicians experienced with CI in single-sided deafness was formed to carry out the collection of patient data, the publication of scientific papers, and the development of a National Coverage Determination (NCD) document that may be submitted to the Centers for Medicaid and Medicare Services. The purpose of the NCD would be to expand candidacy criteria under Medicare to include older adults with SSD or asymmetric hearing loss. Meetings were conducted with CMS staff to gain their insights and guidance. The intent is to submit the NCD in mid 2025 with published studies. Once submitted and published for comment, ACI Alliance will track the progress and alert others in the CI community to submit comments, clinical findings, and personal patient experiences replicating the process used in the last NCD.
  
  
• Facilitated member survey research via distribution of survey instruments in February (six surveys) and August (five surveys). 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
  
  
• Initiated a new project exploring the barriers that delay or prevent early treatment and intervention for children with hearing loss. Medicaid is a significant factor associated with many of the identified barriers including shortages of professionals in some areas especially rural communities, cumbersome enrollment processes, and low payment for services.
  • Met with CMS staff and interviewed clinicians and early intervention staff regarding experiences with barriers stemming from Medicaid and other factors. Explored these issues with Federal officials at the Maternal and Child Health Bureau, the office that oversees Early Hearing Detection and Intervention (EHDI).
  • Developing case studies on specific state challenges.
  • Presentation on barriers made to engage professionals including American Neurological Society’s House Study Group and American Academy of Audiology. Upcoming presentation at the 2025 EHDI conference.

Advocacy

• Grew the State Champion network to over 200 members in 45 states and the District of Columbia. State Champions were instrumental in overseeing legislative and policy changes including expanding state Medicaid to cover CI in adults and protecting family decisions related to early intervention for children with hearing loss.  CI CAN (Cochlear Implant Consumer Advocacy Network) comprised of parents and adult recipients added their voices to Action Alerts and by sharing stories with governmental officials and the media. https://www.acialliance.org/page/ACIAStateChamps
  
  
• Conducted advocacy alerts in 2024 for Champs and CI CAN members on key issues: Telecommunications Act, Air Carrier Access Amendment Act, Stop CMV Act, and Expanded Telehealth Access, and Ally’s Act. This generated over 150 communications to US elected officials. Use of these electronic alerts will be expanded in 2025 related to proposed cuts in key Federal programs and we will organize phone calls and virtual visits as well. Met with Congressional staff to provide input on access for people with hearing loss in air travel as part of the FAA reauthorization.
  
  
• Submitted comments and testimony on key administrative, Congressional and state actions relative to the CMS fee schedule concerning inclusion of telehealth for SLPs and audiologists; to HRSA on early intervention, to NIH on healthcare for adults; to ACLU-Delaware regarding discrimination related to communication options being offered to deaf and hard of hearing children. https://www.acialliance.org/page/Comments_Testimony
  
  
• After extensive discussion with UnitedHealthcare on CI coverage in children and adults, the company announced that effective September 1, 2024, it would begin covering bilateral cochlear implants for children as young as six months and CI in SSD for children 9 months of age and older. This coverage change in the largest US insurer was based upon evidence of outcomes provided by ACI Alliance and others. https://cdn.ymaws.com/www.acialliance.org/resource/resmgr/media_alerts/United_Announcement.pdf
  
  
• Utilizing ACI Alliance candidacy statements and related documents to summarize current literature supporting CI in SSD with specific attention to the importance of duration of deafness, clinicians at the University of Michigan worked with Blue Cross Blue Shield and Blue Care Network of Michigan to cover CI in SSD in children at 9mMonths of age or older. This is a model for advocacy efforts underway elsewhere on age of CI in SSD in children. Single-Sided Deafness (SSD) - Unilateral Hearing Loss Single-Sided Deafness (SSD) - Unilateral Hearing Loss

• ACI Alliance position statement on universal congenital Cytomegalovirus (cCMV) screening for all infants was published in December 2024 in AAO Journal. A broad group of experts, organized by members of the ACI Alliance Board of Directors, drafted the research-driven statement which supports our advocacy efforts at the state and federal levels. Identifying CMV early in newborns—before the child develops a hearing loss—helps ensure (s)he has early options for hearing.
  
  
• Worked collaboratively with the National CMV Foundation and other organizations, to support the federal legislation Stop CMV Act of 2024.
  
  
• State Champions and other advocates advanced state screening efforts for cCMV. Colorado Board of Health unanimously approved a proposal for targeted screening, Florida passed a bill to include screening of premature babies in addition to those who fail the newborn screening test, and Washington State a bill passed for the Health Board to consider if it should add screening.
  
  
• State Champions in Washington and South Caroline were successful in achieving adult CI Medicaid coverage in 2024, improving access to care. Missouri advocates came close to achieving coverage and will continue efforts in the future.
  
  
• Responded to 100+ inquiries that came into ACI Alliance via our website info line, telephone or direct email seeking help with insurance issues. Provided guidance with resources on our website, discussed how to deal with insurance difficulties, reviewed the Medicaid process, encouraged use of clinic insurance support personnel, and directed them to the reimbursement department of their CI manufacturer.
  
  
• Participate in coalitions to work collaboratively with others on issues of importance including Friends of the Congressional Hearing Health Caucus, Parent Choice (which ACI Alliance leads), CMV Partnership Alliance, ITEM (Independence Through Enhancement of Medicare and Medicaid Coalition, and HAB (Habilitation Benefits Coalition). ITEM endorsed the ACI Alliance initiative to develop an NCD for expanded CI coverage under Medicare for single-sided deafness, an indication not now covered despite it being covered by many private insurers.

Build an Effective Organization

• Expanded involvement of students and trainees to encourage CI as a career with 87 participants in the student poster competition at CI2024. Awards made to three winners and three runner-up posters. Increased number of student members in ACI Alliance to 247, an important means of encouraging early career professionals to enter the field.

• Awarded 21 student scholarships for CI2024 to individuals from a diversity of disciplines and programs (e.g., medicine, audiology, deaf education, speech-language pathology, hearing science).

• Special interest groups (SIGs) grew at CI2024 conference with meetings for students/residents, members with hearing loss, professionals wanting to explore adult rehabilitation for individuals post CI, and professionals who are teachers/educators of deaf and hard of hearing children. Each SIG had 25-30 in-person attendees in Vancouver. The teachers/educators SIG was new to 2024 and will be featured at CI2025 Boston as well. The Adult Rehab SIG is active with monthly virtual meetings on how and why to establish adult rehab programs within CI programs.

Read the highlights version here.

Major Accomplishments for 2023

Major Accomplishments for 2022

Major Accomplishments for 2021

Major Accomplishments for 2020

Major Accomplishments for 2019

Major Accomplishments for 2018-2011