MAJOR ORGANIZATIONAL ACCOMPLISHMENTS

2019

• Completed multi-center study for CMS with the aim of expanding candidacy under Medicare. CMS staff continue to demonstrate strong enthusiasm and support for a change in indications for Medicare beneficiaries to receive a cochlear implant. https://www.acialliance.org/page/MedicareExpansion
• Continued year three of a three-year grant to Medical University of South Carolina to study and validate Quality of Life (QOL) instruments specifically targeted to cochlear implant recipients. https://www.acialliance.org/page/QOLMeasures A variety of assessments have been developed to document the impact of cochlear implantation on communication abilities though knowledge of the functional outcomes of cochlear implantation remains limited, a shortcoming to be addressed by the study. The study examines 35 items in 6 domains (communication, emotional, entertainment, environmental, listening effort, and social) to address an individual’s quality of life. Two assessment instruments have been developed and a third is underway. The instruments may be downloaded on the research team’s website:  https://education.musc.edu/CIQOL 
• Collaboration with American Hearing Research Foundation to co-fund a grant on the cost effectiveness of cochlear implants was awarded to Nicklaus Children’s Research Institute to carry out the project: “Reductions in Societal Costs and Burden for those with Severe to Profound Hearing Loss: Impact of Pediatric Cochlear Implantation” to replicate the Mohr Project HOPE (2000) study. The Project HOPE Study has been critical in our efforts to demonstrate cost effectiveness of CI in children but the data is 20 years old. https://www.acialliance.org/page/SocietalCosts. ACI Alliance is collaborating with the researchers to secure funding for this major study.
• Expanded data collection on Medicaid utilization across 47 clinics in 35 states demonstrating widespread dependence on Medicaid coverage for pediatric CI, which exceeds 50% of surgeries for children in most states. Research results detailing specific access concerns were published in 2019 in Otology & Neurotology in a paper entitled Impact of Medicaid on Cochlear Implant Access. The major issues are low reimbursement and severe restrictions on processor replacements and upgrades. Study findings have been used in discussion with CMS and others. https://journals.lww.com/otology-neurotology/Fulltext/2019/03000/Impact_of_Medicaid_on_Cochlear_Implant_Access.47.aspx.  Study findings have been discussed with CMS and others.
• Continued program to support survey research activities undertaken by ACI Alliance Members with bi-annual membership blasts of approved survey instruments. First round of 2019 surveys shared in February (six member surveys); second round sent in early October (five member surveys). This new member distribution tool has facilitated collaborative clinical research that has resulted in presentations and papers. https://www.acialliance.org/page/MemberSurveys
• Initiated research on adult perceptions of cochlear implantation and other options and how such perceptions impact on decision-making to move forward with a cochlear implant. Paper underway to be completed in 2020.

• Collaborating with University of Miami Scientific Program Committee, conducted CI2019 Pediatric/ Treating the Whole Child: 16th Symposium on Cochlear Implants in Children in Hollywood FL, July 9-13, 2019 with 1250 registrants. Conference reviews were extremely positive, highlighting participants’ keen interest in addressing pediatric outcomes from across a child’s full growth and developmental profile.
• Held Sirius XM Cochlear Implant Special with Doctor Radio at ACI Alliance CI2019 in Hollywood, FL on July 11, 2019. The show covered a range of topics including the cochlear implant process, the surgery and aftercare, how a CI works, and health insurance coverage.
• Board of Directors commissioned two working groups to develop best practice guidelines in determining candidacy for cochlear implantation in children and adults.  The guidelines were reviewed by the board of directors and will be published as our organizational position on candidacy determination in 2020.
• Presented at 2019 American Academy of Audiology conference (Columbus OH) on “Reasons Not to Wait on Getting a Cochlear Implant (Once a Patient is a Candidate)” with presenters Camille Dunn PhD, Aaron Moberly MD, and Donna Sorkin MA. Majority of the 120 attendees were audiologists from outside of cochlear implantation.
• Commissioned and published a white paper In Support of Insurance Coverage for Cochlear Implantation in Cases of Pediatric Unilateral Hearing Loss by UNC clinicians Park LR, Eskridge H, Dillon, MT, Brown KD. https://www.acialliance.org/page/SingleSided Paper was reviewed and approved by Board of Directors and has been used extensively by parents, clinicians and others to advocate for insurance coverage.
• Reorganized content on the website with visual portals to provide clear access to information for key website users from outside of cochlear implantation: (1) adults who are, or may be, CI candidates; (2) parents of children who are deaf or hard of hearing; (3) primary care clinicians including family physicians, internists, pediatricians, nurses and physician assistants; and (4) hearing health professionals. www.acialliance.org
• Developed brief videos presented by experts in the field on four topics on which we receive frequent questions: CI surgery, insurance coverage for CI, adult candidacy, and parent-centered therapy for children post CI. Videos have been widely shared on social media and elsewhere. https://www.acialliance.org/page/videos
• Conducted four-part online series intended for non-CI audiologists in collaboration with AudiologyOnline on: (1) Cochlear Implant Timing: Why Waiting Isn’t a Good Idea (Camille Dunn PhD and Meredith Holcomb AuD); (2) Quality of Life Associated with Cochlear Implants (Ted McRackan MD); (3) Best Practices for Determining Cochlear Implant Candidacy in Adults (Sandra Prentiss PhD); (4) Best Practices for Determining Cochlear Implant Candidacy in Children (Denise Thomas AuD and Lindsay Zombek MS). 3500 people participated in one or more of the courses.
• Developed, published and distributed three issues of ACI Alliance Calling, a communication tool for our membership and the general public (April, October, December 2019) https://www.acialliance.org/page/ACI_Newsletter.
• Increased visibility of CI content on the World Wide Web with the goal that searching for key words will lead the general public, primary care clinicians, hearing health professionals and others seeking information to ACIA’s reliable content. Twenty-nine key phrases resulted in ACIA appearing on page one of a Google search. Of those 29, ten terms are in first position when searching on CIs and specific other terms. The website for ACI Alliance is now a major information source for those searching for reliable information in the US and around the world.
• Utilized ad words grant from Google to further expand reach on cochlear implant topics.
• Expanded web content on adult rehabilitation via Naama’s Blog to address a range of issues related to helping adults with cochlear implants improve their outcomes and feel comfortable about the CI option. Blog has filled an important niche in the field by providing sympathetic, accessible information on adult rehab topics.
• Produced exhibit table materials for use at state level consumer conferences, early intervention gatherings, and audiology meetings. Materials cover basics on cochlear implants, candidacy, and process. New outreach provides opportunities for parent and consumer members to contribute.

• Continued expansion of ACI Alliance State Champion program, which at 2019 year-end included 117 Champs representing 44 states. State Champions include clinicians from across the care continuum, educators, parents, consumers, and other advocates for cochlear implant access. https://www.acialliance.org/page/ACIAStateChamps
• Selected states organized ACI Alliance state chapters as a means of participating on CI issues on various state agencies.
• Met with CMS staff on state level Medicaid issues related to cochlear implant care in children under EPSDT rules including caps on habilitation services for children, very low reimbursement levels, and difficulty in securing parts and equipment in long-term care.
• Actively participate in coalitions in the hearing loss and general disability field to address access and awareness. Assumed leadership for coordinating Friends of the Congressional Hearing Health Caucus.
• Organized the Parent Choice Initiative 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
• Began widespread dissemination of: Position Paper: Supporting Parent Choice for Children who are Deaf and Hard of Hearing. https://www.acialliance.org/page/SupportingParentChoice
• Coordinated meeting with Maternal and Child Health Bureau, one of six bureaus in the Health Resources and Services Administration (HRSA) for the Parent Choice Alliance. Meeting purpose was to discuss concerns relating to HRSA’S interpretation and implementation of services and choices across the technology and communication options continuum for families. The officials we met with were receptive and our concerns have been addressed.
• Supported State Champions’ efforts to educate and inform state legislators in their states about parent choice relative to proposed LEAD-K laws. Worked with other organizations in the field to share information. 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. Working with others, our State Champions defeated over a dozen state bills.
• Sent letters to Presidential candidates urging them to consider parent choice and all forms of communication when developing policy positions relative to early intervention services and information provision on IDEA options for parents of children who are deaf or hard of hearing.
• Continued discussion with senior staff at the VA on mechanisms to improve audiology referrals for veterans who should be evaluated for possible cochlear implant candidacy. Collected information for cochlear implant clinicians who work with VA staff and veterans seeking CI care. Interviewed veterans regarding their experiences in pursuing a cochlear implant within the VA system. https://www.acialliance.org/page/Veterans
• Met with the US Congress sponsors of the Alice Cogswell Act to discuss our concerns with bill text. With other organizations in the field, opposed legislation that would eliminate state educational funding from federal sources if a state opts to close unneeded or underperforming state schools for the deaf to reprogram monies for educational activities of greater need.
• Began efforts at the national and state levels to expand awareness and education on the Cytomegalovirus (CMV). Began collaborative efforts with the National CMV Foundation, which plans to attend and participate in future ACI Alliance conferences. State Champions will pursue passage of State CMV legislation.
• Participated in the November 2019 annual meeting of the National Association of Medicaid Directors. Met and engaged with Medicaid directors and others to expand Medicaid CI coverage and services for children and adults. Individual discussions and presentations impressed on us the empathetic approach that the majority of these public servants demonstrate for their work. https://medicaiddirectors.org/
• Participate in coalitions in hearing loss and general disability to include attention to cochlear implant access and awareness. These include the Parent Choice Alliance, Friends of the Congressional Hearing Health Caucus, the Deaf and Hard of Hearing Alliance (DHHA), Independence through Enhancement of Medicare and Medicaid (ITEM) Coalition, and Habilitation Benefits (HAB) Coalition. The ITEM Coalition made improving Medicaid coverage for cochlear implant sound processors and related equipment a priority in 2019 (and has continued the priority in 2020).
• Provided leadership for Friends of the Congressional Hearing Health Caucus. Organized two events during the year: May 2019 educational briefing for Congressional staff entitled “Understanding the Cost of Not Treating Hearing Loss in Adults” and a Congressional staff tour of laboratories involved in hearing science clinical research at the National Institute on Deafness and Other Communication Disorders (NIDCD), NIH in August 2019. Organized meeting with new director of the NIDCD, Dr. Debra Tucci, to discuss priorities for the future and participation in the Institute’s strategic planning process.
• Participated in the Delphi Panel initiative to produce Consensus Statements leading to a “Standard of Care for Adult Cochlear Implantation” and the follow-up Consumer and Professional Advocacy Committee (CAPAC) meeting intended to promote global outreach and awareness about the Delphi Statements and the importance of improving access to CI care for eligible adults.
• Participated in the first World Health Organization (WHO) World Hearing Forum with hearing advocates from around the world to promote and support action for hearing health care through global advocacy to provide a platform where stakeholders can work together in a cohesive manner to achieve the goal of accessible hearing health for all.
• Worked with US Congressman Joe Neguse of Colorado to inform and assist in the development of a non-partisan bill that would require insurance coverage of auditory implants—osseointegrated and cochlear implants and related services under Affordable Care Act Marketplace plans. https://www.acialliance.org/page/AdditionalPolicyAreas
• Submitted comments to the Health Resources and Services Administration, HHS on improving Universal Newborn Hearing Screening (UNHS) stressing the need for providing parents with unbiased, comprehensive information on communication options and medical interventions to facilitate their decision-making on early use of hearing technologies, should they wish to pursue them for their children. https://www.acialliance.org/page/EarlyIntervention
• Proposed a new core objective for Healthy People 2030 on the impact of untreated hearing loss in adults. The proposed objective was: To increase patient referrals for appropriate hearing intervention by primary care physicians by raising awareness of the associated health effects of undertreatment via medical and continuing education. https://www.acialliance.org/page/AdditionalPolicyAreas
• Participated in the annual conference of the National Center for Hearing Assessment and Management as a means of collaborating and providing input to the dialogue on cochlear implants in young children.

• Increased total number of Organizational members to 101 by year-end (up from 88 the prior year). Our national organization had over 1300 active professional and consumer members at the end of 2019.
• Publicized and expanded free military member category designed for active, retired, and veterans with hearing loss and their families.
• Continued expansion of social media with website visibility and increased Twitter @acialliance and Facebook presence  https://www.facebook.com/ACIALLIANCE.ORG/. Initiated use of Linked-In.
• Expanded interactions with healthcare organizations and disciplines outside of hearing care to increase cochlear implant visibility in the larger healthcare communities.