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Accomplishments 2022

MAJOR ORGANIZATIONAL ACCOMPLISHMENTS

2022

Awareness

  • ACI Alliance Task Forces developed four papers on CI candidacy and management of: (1) children with bilateral deafness; (2) children with single-sided deafness; (3) single-sided deafness in adults; and (4) bilateral deafness in adults. The first three papers were published by Ear & Hearing and endorsed by the American Academy of Audiology. Infographics summarizing the three papers were developed to enhance outreach and broad understanding. The fourth paper is under revision with Laryngoscope. https://www.acialliance.org/page/DeterminingCICandidacy

  • Webinar series offered through AudiologyOnline on the four papers. Over 1800 individuals viewed the seminar series in 2022 with an average rating of 4.8 (out of 5). The series was designed for hearing care providers in, and especially, outside of cochlear implantation. The courses remain available for viewing at AudiologyOnline. https://www.acialliance.org/page/DeterminingCICandidacy

  • Expanded audience and scope of monthly newsletter, Listening @ ACI Alliance, a free publication developed to expand awareness about cochlear implants and ACI Alliance research and advocacy activities as well as other organizations’ related efforts. Listening is intended for a broad audience (in and outside of ACI Alliance membership) including the patient community, professionals who are interested in cochlear implants but are not intensively involved, and others in hearing health. Distribution grew to 9400.  https://www.acialliance.org/general/?type=listening

  • Initiated new webinar series—Tuesday Talks—to provide information and support for adults with hearing loss, parents, family members, and others. The first Talks covered progressive hearing loss, CI activation, CI evaluation in adults, CI for veterans, and the IEP process for children with hearing loss. Speakers for Tuesday Talks are well known professionals in the field. The Talks reached 1,112 people in live and recorded formats in 2022. www.acialliance.org/page/TuesdayTalks

  • Served on the Planning Committee and participated as expert speakers for the FDA organized workshop “Cochlear Implants, Innovation, Research and Advancement (CIRCA) Virtual Workshop” held live February 1-2, 2022. Worked collaboratively with the FDA to determine topics and speakers for the virtual workshop with attendees from government, industry, academia, professional societies, and the clinical field (patients, physicians, and medical professionals). The recorded talks are an important resource for medical professionals, government, and the general public.  https://www.acialliance.org/page/CIRCAWorkshop
  • Corrected cochlear implant article in Wikipedia to address inaccuracies and provide current, research-based content.
  • Expanded ACI Alliance website resources for the general public, and optimized content on the Web to ensure it “pops” with Google search. 
  • Partnered with The Hearing Journal to develop the Rehabilitation Tips series (three times per year) for adult CI recipients. In 2022 we covered rehab apps, what is aural rehabilitation, and overcoming the challenges of listening in noise.   www.acialliance.org/page/AdultRehabilitation
  • Expanded Naama’s Blog on website with four new adult rehab topics of great interest. Blog is shared widely with members (who distribute to patients) and to individuals and web groups involved in cochlear implantation and hearing loss generally. The Blog ranks among the top areas of the website. Topics in 2022 included maximizing CI outcomes when wearing a hearing aid on the contralateral side, getting beyond your comfort zone, process after switch-on, and broadening listening skills in wide-ranging situations.  https://www.acialliance.org/page/AdultRehab
  • Increased visibility of ACI Alliance website in response to popular queries on cochlear implants. In 2022, organic online traffic was up 4.03% from 2021, with sessions to the website increased by 8.2%. The most visited pages were the homepage, CI2022 page, CI2023 page, and the cochlear implant FAQ page. Of the four general interest portals, the Adult page had the most views.
  • 50 key phrases (e.g., steps to a cochlear implant, cochlear implant insurance, cochlear implant outcomes in adults/children) pointed to the ACI Alliance website on page 1 of Google search. High average session duration of two minutes and one second, reflecting high quality traffic. Google Ad Words traffic increased by 35.5% when compared to 2021.
  • Participated in partner organizations webinars and podcasts to expand knowledge about CI broadly.  Podcasts or presentations were given at events hosted by Beginnings SC, This Week in Hearing with Brian Taylor, Hear Indiana, Cochlear Implant Basics and On the Ear Audiology Podcast.  https://www.acialliance.org/page/awareness_initiative
  • Collaborated with ACI Alliance members to provide CI materials and resources at partner organizations events, including Little Ears for families hosted by the University of Florida and the premiere screening of the film Rally Caps in Indianapolis. 
  • Increased following and engagement across multiple social media platforms including Facebook, Twitter, and LinkedIn. The ACI Alliance Facebook page reached over 270,000 accounts. Our most popular Facebook post was the original interview with Lexi Finigan, who voiced the lead character in the popular film El Deafo. Her interview reached 21,000 readers. https://www.acialliance.org/page/storiesaboutchildren
  • Outreach to healthcare professionals outside hearing healthcare to promote cochlear implant benefits and referral guidelines, including ACI Alliance board member Dr. David Kelsall presentation at the Colorado Academy of Family Physicians Annual Summit in Vail (CO) in the spring on “Hearing Loss and Dementia—Now Hear This!” The presentation included a general discussion of hearing loss, the association of hearing loss with dementia, the role of primary care providers in hearing screening and referrals, and treatment of hearing loss including amplification and implantable technology like cochlear implants.

Research

  • CI2022 DC: Emerging Issues in Cochlear Implantation was held May 18-21, 2022 as an in-person meeting with asynchronous virtual elements available post-meeting including CEU claiming. The meeting content included keynote addresses, podium sessions, live panel discussions, the (Re)Habilitation Connect Forum, poster exhibits, and CI industry leader satellite events. Total registration for the 2022 meeting was 1,221 consisting of 1,025 (84%) In-person attendees, and 196 registered for virtual participation only. Of the 121 student registrants (the highest number ever), 106 attended in person. Non-US attendees numbered 299 (24%) including 32 virtual registrants from 39 countries. Meeting attendees represented a diverse group of audiologists, physicians, scientists, psychologists, speech pathologists, educators, students, and industry members.

  • Supported member survey research via distribution of survey instruments in February and August. Member surveys collected data on a range of CI related topics including imaging, coaching in LSLS intervention, management of adults with limited English proficiency, and p sychosocial issues affecting CI cl ients. https://www.acialliance.org/page/MemberSurveys

  • ACI Alliance Staff conducted a comprehensive review of the 51 US state and Washington DC Early Hearing Detection and Intervention (EHDI) websites to determine how the information provided complies with Federal guidance. The study rated the website information on hearing loss, technology, communication options, and resources to determine if it was comprehensive, somewhat helpful, or inadequate. The findings have been used to initiate a national conversation on needed parent information as part of EHDI. A paper was developed and published by the Journal of Early Hearing and Intervention. https://digitalcommons.usu.edu/jehdi/vol7/iss3/9/ The findings also led to the inclusion of a GAO Study as part of the EHDI legislation. The research was presented as a podium talk at the 2022 EHDI conference.

  • Collected data from CI centers across the US on the extent to which clinics were able to secure insurance coverage and whether there were differences in successfully gaining such coverage based on age of patient and clinic characteristics. The study also explored which approaches were most successful in gaining coverage after an initial denial. The findings have been developed as a paper submitted for publication. The study findings have helped formulate an approach to improve SSD insurance coverage.

  • Work by Dr. Ted McRackan (that received early funding from ACI Alliance) further advanced our ability to provide patient-centered care for adult CI users. The Cochlear Implant Quality of Life (CIQOL) Functional Staging system provides enhanced real-world understanding of the functional abilities of CI users and an opportunity to develop individualized rehabilitation strategies for CI users.  In addition, the CIQOL-Expectations instrument provides clinicians a better understanding of potential CI user’s expectations regarding CI outcomes and the capacity to provide evidence-based counseling by comparing patient expectations to established normative CIQOL data. More information can be found at  https://www.acialliance.org/page/QOLMeasures

  • A study of the cost burden of hearing loss undertaken by an interdisciplinary team completed its work and submitted two papers for publication: (1) the effects of cochlear implantation and quality of life outcomes in adolescents and (2) the costs of severe to profound hearing loss and cost savings of cochlear implants. https://www.acialliance.org/page/SocietalCosts

Advocacy

  • Successfully completed the first major initiative undertaken by ACI Alliance to expand Medicare candidacy to more closely align with FDA Guidelines. This important public policy initiative was begun with submission of study of outcomes in older adults published in JAMA Otolaryngology and a subsequent formal request to CMS to begin a National Coverage Analysis. The final decision was published on September 26, 2022, a process that led to an important change in Medicare candidacy criteria from 40 to 60% correct on recorded sentences in best aided condition. ACI Alliance publicized the proposed changed and encouraged broad input from our professional and patient communities with 151 comments posted on the proposed criteria during the formal comment period. Patients and their families are elated with the improved access to cochlear implants for older adults provided by this National Coverage Determination. https://www.acialliance.org/page/MedicareExpansion
  • Met with private insurers regarding cochlear implant outcomes generally and SSD outcomes specifically providing research and emphasizing that SSD should be covered for candidate children and adults. We were pleased that the 2022 United Healthcare Coverage Policy for Cochlear Implants explic­itly covers single-sided deafness for the first time for adults and children over age 5.
  • Interacted with Congressional offices regarding legislation that would expand Medicare to cover hearing aids for those with severe to profound hearing loss. ACI Alliance created and offered possible legislative language to address concerns and highlight the issue of CI referrals for those who would benefit to a greater degree from a CI than a Medicare funded hearing aid.
  • Expanded ACI Alliance State Champion program, which at 2022 year-end included 160 Champs representing 47 states and the District of Columbia. State Champions include clinicians from across the care continuum, educators, parents, consumers, and other advocates for cochlear implant access. State Champions addressed state issues such as Medicaid coverage for adults, CMV legislation, and parent choice in EHDI legislation and LEAD-K laws. https://www.acialliance.org/page/ACIAStateChamps
  • Launched first Virtual Hill Advocacy Day in connection with CI2022. Forty State Champs held over 100 meetings with Congressional Offices to discuss three key issues. (1) EHDI Reauthorization (2) Medicare Telehealth Permanency for Audiologists and SLPs and (3) Importance of Expanding Medicare Coverage via the National Coverage Determinacy. Feedback from Champs and Powers Law Offices were positive and felt the virtual hill visits were effective in establishing awareness of ACI Alliance and our issues.
  • Supported State Champions’ efforts to educate and inform state legislators about parent choice relative to proposed LEAD-K laws. Assisted Champs to address specific LEAD-K initiatives that could interfere with parents' ability to secure appropriate services and make choices for their deaf and hard of hearing children. In 2022, the number of LEAD-K bills introduced was greater than in prior years. Collaborated with partner organizations in the field and coordinated efforts through the Parent Choice Alliance.
  • Advanced awareness of the Cytomegalovirus (CMV) among decision-makers at the national and state levels. State Champions assisted with legislation in Florida, Kentucky, Nebraska, and Pennsylvania. CMV remains a top issue for State Champions. Continued collaboration with the National CMV Foundation.
  • Continued the expansion of the Cochlear Implant Consumer Advocacy Network (CI CAN). CI CAN was created to tap the advocacy power of consumers and families and include their CI stories in the conversation. Membership stands at 125. https://www.acialliance.org/page/CI_CAN
  • Utilized advocacy software to track state and national legislation and reach out to elected and appointed officials on legislation. ACI Alliance members participated in several federal and state action alerts on LEAD-K legislation, EHDI reauthorization, CMV legislation, and Ally’s Act. Members appreciate the ease of using the software to participate.
  • Advanced passage of federal EHDI reauthorization. Successfully inserted language in the law to address gaps in required information on EHDI websites to be undertaken as part of a GAO study. The FY2023 Omnibus Act also included language that encourages the Health Resources Services Administration to work with partners to advance parent awareness about the range of communication modalities available and provide detailed information on hearing aids and cochlear implants.
  • Continued leading the Parent Choice Alliance in collaboration with other major organizations in the field to provide a mechanism for collaboration and coordination to address and defeat initiatives designed to limit opportunities for families that wish to pursue spoken language approaches using technology.
  • Supported US Congressman Joe Neguse’s Ally’s Act that seeks to require insurance coverage of auditory implants—both osseointegrated and cochlear implants and related services—under Affordable Care Act Marketplace plans for people of all ages.
  • Supported individual efforts with clinics and families where SSD insurance coverage was denied.
  • Supported State Champion led effort in Washington State to expand Medicaid to cover cochlear implants for adults. Partnering with the Washington State Medical Association.
  • Supported State Champion led effort in Arizona on legislation to expand Medicaid CI coverage of adults.
  • Supported State Champ work in Florida to expand Medicaid to cover SSD.

Build an Effective Organization

  • Began a comprehensive strategic planning process to guide our organization’s activities over the next 3-5 years building on past successes, identified needs, and input from our members, sponsors, and allied organizations in the field.
  • Increased total number of Organizational members to125 by year-end (up from 106 the prior year). Total individual members totaled 2400 and were comprised of organizational and individual professionals, students, adult and parent “consumer” members, and veterans/military. This represents a 33% increase over the prior year.
  • Expanded involvement of students and trainees to encourage CI as a career with over 90 participants in the student poster competition at CI2022. Awards made to 3 winners and 3 runner-ups.  
  • Awarded 22 student scholarships for CI2022 DC to individuals from a diversity of disciplines and programs (e.g., medicine, audiology, deaf education, speech-language pathology, hearing science). 
  • Special Interest Groups (SIGs) were formed to provide support and networking opportunities for two groups within ACI Alliance: Professionals with Hearing Loss and Students. A lunch time program will be offered at the annual conference to share experiences and learn from others.  If desired, these groups may carry through and meet virtually (or in-person) outside of the conference as well. https://www.acialliance.org/page/ci2023sig

 
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.