MAJOR ORGANIZATIONAL ACCOMPLISHMENTS

2021

Awareness

• Commissioned four papers: ACI Alliance Task Force Guidelines for Clinical Assessment and Management of Cochlear Implantation in Children and Adults with Bilateral and Single Sided Deafness. The task forces each covered a specific population and candidacy: Adults with SSD or bilateral moderate-profound hearing loss and Children with SSD or bilateral deafness. Each task force included clinicians from across the care continuum. https://www.acialliance.org/page/DeterminingCICandidacy In 2022, papers on three of the topics published or accepted for publication; one paper in preparation. AudiologyOnline partners with us to provide a forum for presentation to the larger audiology and hearing health community. Began collaborations with audiology organizations to further extend dissemination.
  
  
• Developed a consumer/parent workshop “How Recent Scientific Discoveries are Advancing Cochlear Implant Benefits” offered live at CI2021 Virtual and now available free on the website. https://www.acialliance.org/surveys/?id=Consumer_Workshop
  
  
• Published 4 Issues of ACI Alliance Calling e-Magazine. The magazine is posted open/free on our website after member distribution. This in-depth publication includes a range of organizational content. https://www.acialliance.org/page/ACI_Newsletter
  
  
• Listening @ACI Alliance, a free monthly publication, was launched in September to provide CI information beyond our own membership to consumers, parents, hearing care professionals outside of CI and anyone interested. Strong positive reception helped drive interest such that distribution by year-end was over 8,000. https://www.acialliance.org/page/ListeningACIAlliance
  
  
• Collaborated with AudiologyOnline on a 4-part series: “Expanding Adult Cochlear Implant Access and Outcomes.” Topics: Advancing Access to Hearing Healthcare: Yes, You Can Advocate for Positive Change; Managing Adult CI Cochlear Implants and Veterans; Considerations for Managing Adult CI Patients for Whom English is a Second Language; and Adults Do Enjoy Music with Cochlear Implants! These topics were chosen because they are frequently mentioned as concerns that complicate decision-making by good candidates. At year end, 592 individuals had taken the courses live or recorded.https://www.acialliance.org/page/AdultWebinars2021
  
  
• Recorded and publicized a conversation with five adults, each associated with cochlear implants in a different way highlighting benefits, challenges, and lessons learned throughout their journeys. “Cochlear Implants, Awareness and Disability: An All-Americas Perspective” was distributed in the US and Latin America as a collaborative venture with Surdos Que Ouvem (Brazil) and Vint Cerf (“Father of the Internet”). https://www.acialliance.org/page/AllAmericasPerspective
  
  
• Interviewed actor and bodybuilder Lou Ferrigno (July), popularly known as The Incredible Hulk, after he received a cochlear implant. Lou discusses his lifelong hearing loss and why he went forward with a cochlear implant at age 69. Video was widely viewed and continues to be a popular resource. https://www.acialliance.org/page/IncredibleHulkCI
  
  
• Participated as a partner organization in World Hearing Day 2021. https://www.acialliance.org/page/WHO www.who.int/campaigns/world-hearing-day/2021

• Created new webinar series—Tuesday Talks—to provide information and support for adults with hearing loss, parents, and others. Guest speakers address topics such as “What’s happening at an Adult/Pediatric Mapping,” “Progressive Hearing Loss” and more. Intended as a safe, consumer/parent-friendly opportunity to engage with professionals and other consumers/parents who serve as moderators. Initial launch in 2022 reached 400 views. www.acialliance.org/page/TuesdayTalks

• Edited cochlear implant content in Wikipedia to correct inaccuracies and provide insights on quality of life, surgery, outcomes and pediatric topics. Critical effort impacting public perspectives as CI article in Wikipedia typically shows up on the first page of a CI search. This is an ongoing process. https://en.wikipedia.org/wiki/Cochlear_implant
  
  
• Partnered with The Hearing Journal to develop content for an adult CI “Tips” series to be published three times a year. In 2021, we authored two Tips: Music (with Charles Limb) and Optimizing Outcomes (with SLP Lindsay Zombek). Partnership includes the magazine’s promotion of the annual CI conference and will continue in 2022. www.acialliance.org/page/AdultRehabilitation
  

• Expanded web content on adult rehabilitation with Naama’s Blog, addressing an important constituency need. 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. https://www.acialliance.org/page/AdultRehab2021 blog posts included:

• Is it Noisy? It Depends on Who You're Asking
• How can you practice and improve your listening skills during the social distancing timeframe?
• Listening to Podcasts
• What can an experienced cochlear implant recipient do to further improve hearing outcomes and quality of life?
• Perfection is the Enemy of Progress
• A New Year’s Resolution: How to take good care of yourself (and your CI)
  

• Website most visited pages: insurance, steps to a CI, CI outcomes in adults/children, candidacy, older adults, advances, CI statistics, find a CI clinic, CMV and hearing loss, and adult rehabilitation. Of the four portals on the homepage, the portal for Adults had the most clicks, followed by Parents.
  
  
• 43 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.
  
  
• Promoted October 2021 as the 10-year anniversary of the organization’s incorporation. ACI Alliance activities began in earnest in 2013 after hiring an executive director, holding a first conference, expanded membership, and engagement in advocacy and awareness. https://www.acialliance.org/page/10yearanniversary
  
  
• Interviewed Lexi Finigan, a young CI recipient who was the voice of Cece, the main character in El Deafo, a new Apple+ TV series. The published interview reached over 20,000 people on our Facebook page, and led to continued work with Lexi and her family. www.acialliance.org/page/EIDeafo
  
  
• Addressed misleading and inaccurate representation with background and quotes in articles on the film Sound of Metal in The Hearing Journal (July), USA Today (February), and others. Participated in a Dr. Radio show with Drs. Sean McMenomey and Colin Driscoll (April). Sound of Metal area of the website remains heavily visited in 2022, and shows up upon search on page 1, clarifying the film’s misrepresentation of cochlear implants. www.acialliance.org/page/SoundofMetal
  
  
• Partnered with Jodi Cutler, author of Rally Caps, on distribution of a film based on the book. Activities included ACI Alliance-produced CI information on the film website, involvement of ACI Alliance CI clinics, and cross-promotional activities (beginning in 2021) at the Rally Caps MLB stadium events www.acialliance.org/page/RallyCaps
  
  
• Offered content for inclusion in others’ publications including Hearing Health Foundation publication of an ACI Alliance original story on a COVID patient who experienced hearing loss and pursued a CI for SSD. https://hearinghealthfoundation.org/blogs/finding-a-new-normal-after-sudden-single-sided-deafness
  
  
• Gave podcast “The Power of Two: Rise of the Empowered Patient” as part of the Hearing Health Today series for professionals. https://podcasts.apple.com/au/podcast/the-power-of-two-rise-of-the-empowered-patient/id1520523194?i=1000539352457
  
  
• Expanded media alerts to bring attention to notable ACI Alliance news and events (12 in 2021). www.acialliance.org/page/MediaAlerts
  
  
• Increased social media following on Facebook, LinkedIn, and Twitter an average of 20%, which promoted the visibility of our website and availability of CI information. One Facebook post on a CI recipient who was a contestant on The Bachelor TV show reached 93,000 Facebook users. This posting continued the theme “Representation Matters.”

  Research

• Conducted CI2021 for Children and Adults: It Takes a Village (April 28-May 1, 2021) following the format of prior in-person CI meetings with keynotes, podium sessions, live panel discussions, posters, and CI company satellite events—all virtually. 1350 virtual participants attended in real-time or viewed the meeting as a recording. The scientific program was, for the first time, determined by a geographically and specialty diverse group of audiologists, physicians, therapists, and educators. https://www.acialliance.org/page/ci2021virtual
  
  
• Served on the Planning Committee for the FDA organized workshop “Cochlear Implants, Innovation, Research and Advancement (CIRCA) Virtual Workshop” to be held live February 1-2, 2022. Worked collaboratively with the FDA to determine topics and speakers for virtual workshop attendees from government, industry, academia, professional societies, and the clinical field (patients, physicians, and medical professionals). https://www.acialliance.org/page/CIRCAWorkshop
  
  
• Received initial outcomes of the ACI Alliance sponsored research project “Societal costs of severe to profound hearing loss and cost-utility of cochlear implants” to update work that was first published in 2000. Current work supplements what had previously been done with additional databases including the long-running study Childhood Development after Cochlear Implantation (CDaCI). Paper submissions expected in 2022.
  
  
• Supported member survey research via distribution of survey instruments—one in February and one in August. Surveys collected data on a range of CI related topics including health insurance coverage in SSD and asymmetric hearing loss, CI imaging, pediatric audiology, music listening habits and electrode deactivation. https://www.acialliance.org/page/MemberSurveys
  

Advocacy

• Grew State Champion program to 142 Champs representing 44 states and DC by year end. State Champions are clinicians from across the care continuum, educators, parents, consumers, and other advocates for cochlear implant access. https://www.acialliance.org/page/ACIAStateChamps
  
  
• Expanded Cochlear Implant Consumer Advocacy Network (CI CAN) created in late 2020 to capture the advocacy power of adults and families and include their CI stories. Active involvement in all advocacy but especially CMV. https://www.acialliance.org/page/CI_CAN
  
  
• Implemented regular use of Advocacy Software to track state and national legislation and provide an outreach vehicle to public officials on relevant legislation. Advocates participated in action alerts on proposed state LEAD-K bills, EHDI reauthorization, state CMV legislation, Ally’s Act (national), and more. Shared action alerts in newsletters, eblasts and social media.
  
  
• Published the 2021 Advocacy Toolkit to assist ACI Alliance advocacy network members in developing relationships with federal and state policy makers.
  
  
• Formal request submitted to Centers for Medicare and Medicaid Services (CMS) for reconsideration of National Coverage Determination (NCD) to expand CI coverage criteria under Medicare to 40-60% correct on recorded AzBio sentences.

• Supported H.R. 5561—Reauthorization of EHDI programs—with other hearing health organizations. Submitted an amendment to the legislation (accepted) for a GAO study to examine how state EHDI programs utilize web-based resources. H.R. 5561 passed the House in December 2021. Work continues in the Senate for 2022.

• Reviewed the 51 EHDI (state and DC) websites to determine if legislatively mandated parent information is provided on the sites and if it is comprehensive, somewhat helpful, or inadequate. Submitted to present on topic at EHDI 2022 Conference (accepted).
  
  
• Developed paper to peer reviewed journal on the EHDI website findings for submission to the Journal of Early Hearing and Intervention. (Submitted/accepted in 2022.)

• Advocated to Congress on making Medicare telehealth waivers permanent emphasizing the importance of audiology and speech-pathology services with meetings and Action Alerts.(Continues into 2022).

• Submitted comments to CMS on the FY2022 Physician Fee Schedule addressing proposed reimbursement cuts as well as the need to maintain telehealth coverage for audiologists and speech-language pathologists.

• During 2021 discussions of national legislative proposals that would have expanded Medicare to cover hearing aids for severe or profound hearing loss, ACI Alliance engaged with Congressional Members to express concern relative to the impact of such coverage on CI referrals. For those who would have been covered for hearing aids (had the expansion passed into law), cochlear implants are likely a more appropriate hearing technology option. Congressional Members were prepared to add report language to the Appropriation noting that audiologists and other hearing health professionals should take into consideration each individual and what is most appropriate to meet their needs, including a referral for a CI evaluation, at the time a hearing aid was being considered. Further, that an expansion did not imply a bias towards hearing aids over cochlear implants.

• Participated in hearing health and disability coalitions to encourage attention to CI access and awareness. These include chairing the Parent Choice Alliance and serving as members of Friends of the Congressional Hearing Health Caucus (FCHHC), the Deaf and Hard of Hearing Alliance (DHHA), Independence through Enhancement of Medicare and Medicaid (ITEM) Coalition, and Habilitation Benefits (HAB) Coalition. At the end of 2021, elected Co-Chair of DHHA for 2022.
  
  
• Joined members of FCHHC in signing a letter to Congress on hearing health priorities.
  
  
• Led Parent Choice alliance, collaborating with other major organizations in the field, to defeat LEAD-K initiatives designed to limit opportunities for families that choose spoken language approaches for their children with any level of hearing loss.

• Supported State Champion efforts to educate and inform state legislators about Parent Choice during LEAD-K legislation discussions, collaborating with other organizations. State Champions defeated state bills in Iowa, Minnesota, South Carolina, and New York.

• Participated in E/M Coalition, successfully urging Congress to provide relief from proposed 2021 Medicare Physician Fee Schedule reimbursement cuts associated with changes in evaluation and management (E/M) codes.
  
  
• Supported national and state level campaigns to expand awareness and education on Cytomegalovirus (CMV). State Champions assisted with state-level legislation, work that will continue in 2022. Submitted comments supporting legislation in Pennsylvania. Collaborated with the National CMV Foundation.

• Continued support of Ally’s Act (led by CO Congressman Joe Neguse) that would require private health insurance coverage of auditory implants—osseointegrated and cochlear implants and related services.
  
  
• Surveyed members on insurance coverage for SSD and asymmetric hearing loss. Results to be developed as a paper and utilized in discussions with insurance companies.

• Responded to numerous inquiries on SSD coverage. Expanded SSD support materials on website to support inquiries. Encouraged questioners to query the CI companies for questions and support.
  
  
• Initiated State Champion led effort in Washington State to expand Medicaid coverage to include cochlear implants for adults. Partnered with Washington State Medical Association. (Working towards a coverage expansion in 2023.)
  
  
• Held discussions with Alabama State Champs and a coalition of state officials, patients, and other associations to improve Medicaid CI care and coverage for children and adults in AL.

• Submitted comments to Texas Health and Human Services Commission on proposed Medicaid cuts for cochlear implant surgeries. State Champs and a Board Member testified at the hearing. We were not successful at changing a decision to reduce reimbursement that had already been made but will revisit this issue in TX.

Build an Effective Organization

• Increased total number of Organizational members to 106 by year-end (up from 101 the prior year). National membership included over 1900 active members comprised of professionals, students, adult consumers, veterans/military, and parent members at the close of 2021, a 46% increase over the prior year.
  
  
• Expanded involvement of students and trainees to encourage CI as a career with 63 participants in the student poster competition at CI2021 Virtual. Awards made to 3 winners and 3 runner-ups. https://www.acialliance.org/news/562600/CI2021-Student-ePoster-Competition-Winners.htm
  
  
• Awarded 36 student scholarships to CI2021 Virtual to individuals from a diversity of programs (e.g., medicine, audiology, deaf education, speech-language pathology, hearing science). https://www.acialliance.org/page/CI2021StudentScholarshipRecipients