Introduction
Emerging issues in cochlear implantation
Donna Sorkin
The American Cochlear Implant Alliance (ACI Alliance) is a not-for-profit membership organization organized in 2012 by a group of professionals in the field with the purpose of eliminating barriers to cochlear implantation. Despite important quality of life benefits for children and adults with moderate to profound hearing loss, cochlear implants remain a greatly underutilized health intervention.
The organization’s membership spans scientists and clinicians from across the cochlear implant continuum of care including otolaryngologists, audiologists, speech pathologists, educators, psychologists and others on CI teams. Parents of children with hearing loss, adult recipients, and other advocates for access are also active members. It’s diverse membership and focus on CI access makes ACI Alliance a unique entity. The mission has remained unchanged since its founding – to advance access to the gift of hearing provided by cochlear implantation through research, advocacy and awareness. Extensive resources are provided for those in and outside of the cochlear field on the website www.acialliance.org
During the 2017-2018 timeframe, the organization undertook an aggressive program to achieve its mission. Some of the organization’s major accomplishments included:
Research
Awarded a three-year grant to conduct a study to develop and validate Quality of Life instruments specifically targeted to cochlear implant recipients.
Funded a planning grant designed to lead to a comprehensive assessment of the cost effectiveness of cochlear implants in children, a project designed to update the seminal Project Hope study published in 2000.
Continued a multi-center study for the Centers of Medicare and Medicaid Services with the aim of expanding candidacy under Medicare.
Collected data on Medicaid utilization across 30+ states demonstrating widespread dependence on Medicaid coverage for pediatric CI.
Initiated a program to support survey research activities undertaken by ACI Alliance members with bi-annual push-outs of approved survey instruments to the membership.
Awareness
Carried out programs in collaboration with consumer organization Hearing Loss Association of America (HLAA) to improve consumer understanding of CI candidacy, residual hearing, hearing aid use, insurance and outcomes associated with cochlear implantation in adults.
Initiated outreach to the national organizations of family physicians, internists and pediatricians seeking to organize presentations at national and state conferences. Conducted state talks and presented at the October 2018 Family Medical Experience (FMX) annual meeting of the American Academy of Family Physicians.
Developed a new resource for primary care physicians and nurses, Adult Candidacy for Cochlear Implantation: Clinical Guidance, being used for primary care physician and nurse outreach.
Initiated a focused effort to expand website visibility and reach the general public and primary care physicians/nurses on key cochlear implant topics.
Collaborated with Stanford University and University of California San Francisco on a cooperative pediatric CI symposium held July 26-29, 2017 in San Francisco with over 1300 attendees. Conducted a consumer workshop on Saturday afternoon for parents and adults with 130+ attendees.
Expanded consumer blog resources for adults covering wide ranging rehabilitation topics.
Initiated a PR outreach campaign in preparation for the March 2018 launch of a powerful documentary by filmmakers Jane Madell and Irene Taylor Brodsky profiling the journeys of 15 young adults, deaf from childhood, who benefitted from advanced hearing technology.
Advocacy
Continued expansion of ACI Alliance State Champion program, which now includes over 100 Champs representing 42 states.
Collaborated with other organizations to advance reauthorization of the Early Hearing Detection and Intervention Act, which passed through Congress and was signed into law in 2017. Language suggested by ACI Alliance on the need for accurate, comprehensive, up-to-date information for families on options was included in the final bill.
Conducted research and highlighted problems of access to appropriate cochlear implant care at the Veterans Health Administration.
Worked with other organizations to support the retention of Essential Health Benefits (EHBs) in any healthcare reforms.
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.
Initiated a new coalition to protect Parent Choice in decision-making for children with hearing loss and address efforts to interrupt parental decision-making on technology and options for their own children. Published a strong Parent Choice Position Paper.
Build an Effective Organization
Grew the number of active members to 1450 with 90 Organizational members.
Continued expansion of social media with website visibility Twitter and Facebook.
Expanded interactions with healthcare organizations and disciplines outside of hearing care to increase cochlear implant visibility in the larger healthcare communities.
Annual Clinical Research Symposium
American Cochlear Implant Alliance has conducted an annual clinical research symposium bringing together clinicians, educators, and scientists since 2013. Attendees address cochlear implants in a range of settings – universities, hospitals, private clinics, non-profit organizations, schools, and governmental agencies. CI 2018 Emerging Issues in Cochlear Implantation was the third conference that used this particular format. It was held in Washington, DC March 7-10, 2018. The symposium provided attendees with the opportunity to explore in depth four topics that have significant potential for improving outcomes across the age span. These included:
Quality of Life and Cochlear Implantation
CI Candidacy in 2018
Parental Engagement in Pediatric CI Outcomes
Cochlear Implant Practice Management
The annual Dr. John K. Niparko Memorial Lecture, given by William G. Kronenberger PhD, addressed ‘Executive Functioning and Language Development in Children with Cochlear Implants.’
We are grateful to the individuals who shared their knowledge and experiences as presenters, panelists and audience participants.
Donna L. Sorkin Executive Director
Colin Driscoll Chair, Board of Directors
Email: [email protected]
Funding for the development of these proceedings was made possible [in part] by R13DC017086 from the National Institute on Deafness and Other Communication Disorders of the National Institutes of Health. The views expressed in written conference materials or publications and by the speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services, nor does mention of trade names, commercial practices, or organizations imply endorsement by the US Government.