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Cochlear Implant Support with ACI Alliance

The American Cochlear Implant Alliance is a not-for-profit membership organization created with the purpose of eliminating barriers to cochlear implantation by sponsoring research, driving heightened awareness and advocating for improved access to cochlear implants for patients of all ages across the US. ACI Alliance members are clinicians, scientists, educators, and others on cochlear implant teams as well as parent and consumer advocates. An annual meeting for professional members is convened.

Background

In 2010, a group of surgeons, audiologists, speech-language pathologists, and representatives of Cochlear Implant manufacturers met to discuss the initiation of an organization that would address the existing challenges they faced involving Cochlear Implants. This group determined that an inclusive and collaborative organization was needed to eliminate barriers to cochlear implantation. The organization would drive change by improving access to, and increasing awareness about Cochlear Implants through a concerted effort among health care professionals, patients and their families, corporations, clinics and hospitals. The founding members began working on building this important organization and in 2011 the "American Cochlear Implant (ACI) Alliance Foundation” was incorporated as a non-profit entity.

The founding members consisted of some of the country’s top professionals in the field of otology and audiology:

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
Tom Roland, MD
Jay Rubinstein, MD, PhD
James Saunders, MD, MS
Susan Waltzman, PhD
Kathryn Wilson, MA
Nancy Young, MD
Terry Zwolan, PhD

The American Cochlear Implant Alliance is committed to eliminating barriers to cochlear implantation by sponsoring research, driving heightened awareness and advocating for improved access to Cochlear Implants for patients of all ages across the U.S.

Over the course of the next several months this group of volunteers honed the organization’s mission and its commitment. Founding sponsors provided the seed money to establish the organization.

 

Major Organizational Accomplishments

2017

Research

  • Awarded a three-year grant to Medical University of South Carolina (PI Theodore McRackan on 10/1/2017 to conduct a study to develop and validate Quality of Life instruments specifically targeted to cochlear implant recipients. A variety of assessments have been developed to document the impact of cochlear implantation on communication abilities in adults and children with hearing loss. However, our knowledge of the functional outcomes of cochlear implantation remains limited. This study is intended to address this shortcoming in current research and may provide information to support CI reimbursement. https://www.acialliance.org/page/QOLMeasures
  • Collaborating with American Hearing Research Foundation to co-fund a grant on the cost effectiveness of cochlear implants. Initial 2017 solicitation did not produce a winning proposal; this offering is being extended into 2018. https://www.acialliance.org/page/SocietalCosts
  • Continued multi-center study for CMS with the aim of expanding candidacy under Medicare. Nine additional study sites were added to boost enrollment, bringing the site total to 19 across the US. A total of 28 subjects had received a CI as part of the study by year-end. Strong patient outcomes, equivalent to the under 65 population, though numbers of enrolled patients remains lower than expected. https://www.acialliance.org/page/MedicareExpansion
  • Collected data on Medicaid utilization across 30+ states demonstrating widespread dependence on Medicaid coverage for pediatric CI, which exceeds 50% of surgeries for children at many hospitals. Research results will be published in 2018.
  • Initiated a program to support survey research activities undertaken by ACI Alliance Members with bi-annual push-outs of approved survey instruments to our membership. First round of surveys to be shared in February 2018. https://www.acialliance.org/page/MemberSurveys

Awareness

  • Carried out programs in collaboration with Hearing Loss Association of America (HLAA) to provide greater understanding of candidacy, residual hearing, hearing aid use, insurance and outcomes associated with cochlear implantation in adults. Conducted four HLAA chapter events in 2017 in Columbia SC (Feb), Miami and Ft. Lauderdale FL (both in March) and Salt Lake City (March). https://www.acialliance.org/page/Candidacy
  • Partnered with Internet pioneer Vinton Cerf to author an article published in January 2017 comparing adoption of the Internet by US adults to that of cochlear implants: “Cochlear Implants: A Hidden Technology? https://www.hearingloss.org/?s=a+hidden+technology
  • Sponsored and conducted HLAA’s Consumer Research Symposium at the June 2017 Salt Lake City HLAA National conference: “Hearing Aids and Cochlear Implants: Merging Technologies, Expanding Benefits.” Attended by 600+ consumers with hearing loss, this educational consumer seminar was highly rated for its understandable, research-based approach to cochlear implant candidacy, advances, benefits (including cognitive health), and access concerns.
  • Initiated outreach to the national organizations of family physicians, internists and pediatricians seeking to organize presentations at national and state conferences. State presentations have been conducted in MN and are being sought elsewhere. ACI Alliance will present at the October 2018 Family Medical Experience (FMX) annual meeting of the American Academy of Family Physicians (4000 family doctors). https://www.aafp.org/events/fmx.html.
  • 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 https://www.acialliance.org/page/AdultCandidacy.
  • Initiated a focused SEO effort to expand website visibility and reach the general public and primary care physicians/nurses on key cochlear implant topics. Search outcomes on Google now point to our website (first page and often the #1 position) on a number of key topics including steps to a cochlear implant, insurance, candidacy, what is a cochlear implant, advances, adults, older adults, and outcomes in children and adults. Developed a robust ad campaign with a Google grant that further enhanced search to resources on our website.
  • Improved the popular resource “Steps to a Cochlear Implant” for the general public, primary care physicians and nurses to address one of our most frequent questions: “What is involved in getting a cochlear implant?” and optimized the ability for Internet search to find this resource. This is now the #1 Google search outcome on this topic. https://www.acialliance.org/page/CICareProcess
  • 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.
  • Developed, published and distributed three issues of ACI Alliance Calling, a communication tool for our membership and the general public (April, September, December 2017) https://www.acialliance.org/page/ACI_Newsletter.
  • Expanded consumer blog resource for adults with the initiation of “An Octogenarian’s CI Journey” and “A Young Adult’s Perspective” while continuing the rehab focused blog coordinated by Naama Tsach PhD on wide-ranging adult topics. https://www.acialliance.org/page/ACIABlog
  • Initiated a PR outreach campaign in preparation for the March 2018 launch of a powerful new 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. https://www.acialliance.org/page/TheListeningProject
  • Published free, open access highlights from the 14th International Symposium on Cochlear Implants (CI2016 in Toronto) in Otology & Neurotology September 2017. https://journals.lww.com/otology-neurotology/pages/collectiondetails.aspx?TopicalCollectionId=24

Advocacy

  • Continued expansion of ACI Alliance State Champion program, which now includes 84 Champs representing 40 states. https://www.acialliance.org/page/ACIAStateChamps
  • Developed concept for expanding state organizations by including consumers, parents and hearing health professionals beyond State Champions. https://www.acialliance.org/page/StateCommittees
  • Plans to expand staff to include one position devoted to governmental policy and began recruitment with start date of January 2018.
  • Collaborated with other organizations to advance reauthorization of the Early Hearing Detection and Intervention Act, which passed through Congress and was signed by the President on 10/18/2017. 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. https://www.congress.gov/bill/115th-congress/senate-bill/652
  • Conducted research on problems of access to appropriate cochlear implant care at the Veterans Health Administration. Submitted comments to the VA as part of a rule-making on prosthetics on 12/15/2017. https://www.acialliance.org/page/VAPractices
  • Organized clinicians with an interest in VA practices as a means of providing ongoing information to the VA on cochlear implant candidacy evaluation and care.
  • Worked with other organizations to support the retention of Essential Health Benefits (EHBs) in any healthcare reforms. Rehabilitative and habilitative services as one of the ten EHBs has served to aid in the inclusion of CI in private health care plans.
  • Became preparations for ACI Alliance on the Hill during CI20218DC in March 2018 to focus on Medicaid, Essential Health Benefits and access to CI at the VA.
  • Collected research on the role of Medicaid in cochlear implant coverage for children and adults. Findings are being used to support maintenance of Federal Medicaid funding to states. Publication forthcoming. https://www.acialliance.org/page/AdvocacyInitiatives
  • 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.

Build an Effective Organization

  •  Grew the number of active members to 1393, a 37% increase over 2016. Increased total number of Organizational members to 77 by year-end (up from 66 the prior year).
  • Continued expansion of social media with website visibility and increased Twitter presence. Initiated ACI Alliance on Facebook, which has generated interest in ACI Alliance well beyond our own membership. https://www.facebook.com/ACIALLIANCE.ORG/
  • Expanded interactions with healthcare organizations and disciplines outside of hearing care to increase cochlear implant visibility in the larger healthcare communities.

 

2016

Research

  • Continued multi-center study for CMS with the aim of expanding candidacy under Medicare
    • Ten additional study sites were added to boost enrollment, bringing the site total to 20 across the US. A total of 15 subjects had received a CI as part of the study by year-end.
    • ACI Alliance coordinated with the national Hearing Loss Association of America (HLAA) organization to offer informational seminars at HLAA local chapter meetings on advances in cochlear implant candidacy, technology, and outcomes and encourage study participation.
    • A workshop was given on adult candidacy and outcomes and the Medicare study at the HLAA National conference in June 2016 in Washington, DC.
    • A study summary and update was published in the December 2016 issue of ACI Alliance Calling (page 6) including a listing and map of the 20 study sites (page 7), and patient outcomes to date (page 8). http://c.ymcdn.com/sites/www.acialliance.org/resource/resmgr/files/ACIA_Calling_Dec_2016_Final_.pdf
  • Collaborating with American Hearing Research Foundation to co-fund a grant on the cost effectiveness of cochlear implants with specifics to be published in early 2017.

Awareness

  • Carried out programs in collaboration with Hearing Loss Association of America (HLAA) to provide greater understanding of candidacy, residual hearing, hearing aid use, insurance and outcomes associated with cochlear implantation in older adults:
    • Informational sessions for consumers given by local CI clinicians at HLAA chapter meetings
    • Outreach to local non-CI audiologists to attend
    • Content development for HLAA publications
    • Partnered with Internet pioneer Vinton Cerf to author an article comparing adoption of the Internet by US adults to that of cochlear implants: “Cochlear Implants: A Hidden Technology?” http://hearingloss.org/sites/default/files/docs/HLM_JanFeb2017_Cerf.pdf.
  • Planning for sponsorship and conduct of HLAA’s Consumer Research Symposium at June 2017 HLAA National conference: “Hearing Aids and Cochlear Implants: Merging Technologies, Expanding Benefits.”
  • Published open access proceedings for CI2015 Emerging Issues Symposium in Cochlear Implants International, Volume 17, 2016 – Issue 5 https://www.acialliance.org/page/ClinicalResearch exploring brainstem implants in children, expanded indications, literacy, objective measures, quality of life, and connectivity.
  • Conducted collaborative initiatives to improve understanding of CI candidacy and outcomes with hearing care professionals outside of cochlear implantation.
    • “Cochlear Implants 2016: Advances in Candidacy, Technology, and Outcomes, Factors That Drive the Expansion of Pediatric Cochlear Implant Candidacy” authored by Zwolan and Sorkin and published in print and electronic formats in Perspectives of the ASHA Special Interest Groups SIG 9, Vol. 1 (Part 1), 2016.
    • Provided content for “Cochlear Implant Continuum of Care” in the print and online publication Advance Magazine for Speech and Hearing (November 2016) http://rehab-insider.advanceweb.com/speech-hearing-emagazine-november-2016/
  • Initiated a focused effort to expand website visibility and reach the general public and primary care physicians/nurses on key cochlear implant topics.
  • Developed insurance website resources in response to numerous inquiries on insurance coverage: Cochlear Implantation: Health Insurance and Other Possible Ways of Gaining Coverage and An Additional Funding Source for Cochlear Implantation: Disability Benefits Under Social Security.
  • Developed resource “Steps to a Cochlear Implant” for the general public, primary care physicians and nurses to address one of our most frequent questions: “What is involved in getting a cochlear implant?” https://www.acialliance.org/page/CICareProcess
  • Collaborated with University of Toronto/Sunnybrook on our cooperative international CI symposium held May 11-14, 2016 in Toronto with extensive outreach in the US and around the world. Attendance was 1639, the largest CI symposium ever to be held in North America.
  • Developed, published and distributed three issues of ACI Alliance Calling, a communication tool for our membership and the general public (March, August, December) https://www.acialliance.org/page/ACI_Newsletter.
  • Initiated new consumer resource on the adult CI journey, a blog covering a range of topics for adults coordinated by Naama Tsach PhD, who writes and solicits guest bloggers. https://www.acialliance.org/page/ACIABlog

 Advocacy

  • Collaborated to advance reauthorization of the Early Hearing Detection and Intervention Act (expected to pass in 2017).
  • Continued expansion of ACI Alliance State Champion program. https://www.acialliance.org/page/ACIAStateChamps
  • Organized ACI Alliance on the Hill—At Home during Summer/Fall 2016 to encourage visits by Congressional Members to CI clinics.
  • Actively participate in coalitions in the hearing loss and general disability field to address access and awareness.

Build an Effective Organization

  • Grew total number of active members to 1016, a 21% increase. Increased total number of Organizational members to 66.
  • Continued expansion of social media with website and increased Twitter presence.
  • Developed, published and widely three issues of ACI Alliance Calling, the organization’s e-magazine. https://www.acialliance.org/page/ACI_Newsletter

2015 

Research

Awareness

  • Collaborated with Hearing Loss Association of America on coordinated campaign to publicize candidacy and outcomes associated with CI in older adults.
  • Published open access proceedings for CI2014 Pediatric in Otology & Neurotology
    http://journals.lww.com/otology-neurotology/pages/collectiondetails.aspx?TopicalCollectionId=2
  • Conducted Emerging Issues in Cochlear Implantation Symposium in Washington DC Oct, 2015 with a focus on six emerging issues.
  • Initiated activities to encourage careers in CI field including a website Career Center and conference job fair.
  • Presented ASHA featured session on expanding indications and improved outcomes to reach students and clinicians outside of CI field.
  • Published three issues of ACI Alliance Calling (Jan, July, Dec) https://www.acialliance.org/page/ACI_Newsletter
  • Inputted to NIH for priority-setting on rehabilitation research.
  • Initiated new consumer resource on the adult CI journey, Naama’s Blog. https://www.acialliance.org/blogpost/1334356/Cochlear-Implant-Rehabilitation-for-Adults
  • Collaborated with other hearing health organizations in the Congressional Hearing Health Caucus including a briefing “Improving Outcomes for Families and Children who are Deaf or Hard of Hearing” to support EHDI reauthorization.
  • Met with Congressman David McKinley (R-WV), the only cochlear implant recipient in Congress regarding access to cochlear implants. https://twitter.com/acialliance/status/619543945136205824

Advocacy

  • Expanded work and impact of ACI Alliance State Champions who monitor issues and drive access efforts in 35 states. https://www.acialliance.org/page/ACIAStateChamps
  • Organized ACI Alliance on the Hill for 90 advocates (10/14/2015) focusing on cochlear implant awareness and reauthorization of Early Hearing Detection and Intervention (EHDI) Act. Awareness created contributed to Senate bill introduced by Senators Portman (R-OH) and Gillibrand (D-NY). Continued EHDI efforts, working directly with Senate staff and organizing State Champions’ Senate ongoing outreach.
  • With State Champions, monitored and addressed reimbursement challenges under ACA Marketplace plans and state Medicaid.
  • Published Position Paper: Pediatric Habilitation Following Cochlear Implantation to address therapy caps in insurance plans and provide a resource for clinicians and families to argue for appropriate coverage services to address a child’s unique needs. https://c.ymcdn.com/sites/acialliance.site ym.com/resource/resmgr/Docs/ACI_Paper_Pediatric_Rehab.pdf
  • Submitted comments to CMS on OPPS programming classifications and rules on billing for multiple (unrelated) services provided on the same day. CMS agreed to place mapping in a different higher level APC and reversed its rule that had disallowed same day multiple payments. https://c.ymcdn.com/sites/acialliance.siteym.com/resource/resmgr/Docs/ACIA_OPPS_Comments_08-27-201.pdf
  • Developed comments to the Federal Communications Commission on compatibility of cell phones with cochlear implants and other implanted auditory devices. https://c.ymcdn.com/sites/www.acialliance.org/resource/resmgr/Docs/ACIA_comments_to_FCC.pdf
  • Participated in coalitions to collaboratively address access to, and awareness of, cochlear implantation.

Build an Effective Organization

  • Achieved 20% membership increase with 59 Organizational Members and 850 individual members (professionals, students, consumers and parents).
  • Expanded website and social media presence focusing on cochlear implant emerging issues, candidacy and outcomes, and access concerns.

 

2014 

Research

  •  Launched CMS-approved multi-center study to evaluate expansion of CMS candidacy criteria to include adults with better pre-operative speech recognition skills than is currently allowed under Medicare.
  • Initiated systematic assessment of cost utility of cochlear implantation, an analysis of 60 studies completed since 1995 with publication expected in 2015.
  • Developing consumer/clinician project to expand primary care physician knowledge about cochlear implants for adults.


Awareness

  • Collaborated with Vanderbilt University Medical Center on 14th Symposium on Cochlear Implants in Children December 11-13, 2014 with 1100 attendees from around the world.
  • Developed, published and widely distributed CI 2013 Abstract Proceedings in print and electronic formats.
  • Published two issues of ACI Alliance Calling.
  • Achieved mainstream media coverage coinciding with CI2013 DC conference (NY Times, Bloomberg, Military TImes).
  • Launched new website and expanded Twitter with enhanced content for the general public and general healthcare professionals and greater member participation.
  • Expanded membership of Organizations by 52% and individuals by 30%.


Advocacy

  • Expanded State Champion program to 31 states with periodic group and individual conference calls and documentation to support state level monitoring and action of CI coverage by ACA Market Place plans.
  • Identified therapy caps as a significant issue under the ACA and initiated development of a therapy guideline.
  • Submitted comments to CMS and US Office of Personnel Management asking for clarification of the cochlear implant benefit under the ACA Marketplace plans to address arbitrary limits on services (i.e., allowing only one CI per year or limiting the number of mapping or therapy sessions allowed in a given timeframe).
  • Undertook aggressive campaign to retain Medicare coverage of Auditory Osseointegrated Implants. Worked organizationally and with other groups to submit comments and provide guidance to our members to facilitate individual input. Met with CMS officials and organized a bi-partisan letter signed by 20 Members of the Congressional Hearing Health Caucus. CMS announced in late 2014 it would retain coverage.
  • Conducted ACI Alliance on the Hill at CI2013 to increase visibility of CI among a large group of legislative offices and help our members to establish relationships with their Congressional representatives. Continued follow-up into 2014.
  • Under the auspices of the Friends of the Congressional Hearing Health Caucus, collaborated to organize a Congressional staff luncheon on pediatric hearing loss focusing on cochlear implant benefits and shortcomings of the early intervention system vis a vis parent information.
  • Developed close relationships with several key Senators and House Members, particularly those in NC. Organized Congressional clinic visits.
  • Began a collaborative effort with other organizations to include language in the EHDI 2015 reauthorization requiring comprehensive information on technology and communication options be provided to parents of deaf children.
  • Assisted specific states with reimbursement challenges (i.e., MassHealth regarding equipment coverage, GA regarding lack of visibility on ACA coverage of CI, Washington DC on Medicaid underpayment)
  • Participated in The Ear Foundation (UK) conference and report to Parliament designed to bring about a more sensitive approach to adult hearing loss by the UK's National Health Service. Conducted and presented on a survey of adults regarding workplace effects post cochlear implantation.

 

2012

  • Developed proposal to evaluate revised indications for Cochlear Implant candidacy for adult CMS population , "ERID” Launched CMS.
  • "ERID” proposal submitted to CMS, patient registry included.
  • CMS judges proposal credible, fully qualified response to Spring, 2011 mandates.
  • CMS requests 19 point clarification, volunteers formulate response, in discussion with CMS.
  • Nominating Chair named, Committee prepares Board/Chairman slate.
  • Elections held for organization’s First Board of Directors at Annual Meeting.
  • Conference Committee Chair named , committee addresses guidelines for future Cochlear Implant conferences.
  • Conferences announced for CI Pediatric 2014 Nashville, 2017 San Francisco and CI International 2016 Toronto.
  • Tax-Exempt status received from IRS retroactive to 2011 incorporation.
  • Membership Chair named, program defined and launched.
  • Phase I website launched May, 2012 and Phase II launched November, 2012.
  • Search Committee Chair named, Committee launches Executive Recruitment, Executive Director named.
  • Research Chair named, soliciting patient registry proposals for Board vetting.

2011

  • Founder’s Board established, officers named, quarterly meetings held.
  • Mission Statement, Goals and Aims created.
  • Organization concept introduced at CI2011 Conference in Chicago.
  • Governance documents adopted and registration applications filed.
  • Incorporated in State of Delaware as a 501(c)(3) non-profit.
  • Alliance Founder’s Board Members meet with Center for Medicare and Medicaid Services (CMS), discuss potential sponsored study.

 

 

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