MAJOR ORGANIZATIONAL ACCOMPLISHMENTS 2020 Awareness - Increased visibility of cochlear implant content on the World Wide Web by 18% in 2020 with the goal that searching for keywords will lead the general public, hearing health and primary care professionals, and others seeking reliable content will have answers to important questions.
- Increased referral traffic with 246 external websites linking to ACI Alliance making the website a major information source around the world.
- Increased overall website traffic by 19% through organic and direct search. Utilized Google Ad Words to gain nearly 112,000 impressions in 2020, an 11.5% increase from 2019.
- Sound of Metal, a film released in late 2020, included extensive inaccurate content regarding the lead character who experiences sudden deafness and receives a cochlear implant. ACI Alliance wrote editorial on the film and spoke with media outlets (including USA Today and Dr. Radio) throughout late 2020 and early 2021. The Sound of Metal resources continue to be among the most visited pages on the website.
- Conducted four-part Audiology Online series in January-February 2020 with a general theme of “Helping Your Patients Understand Benefits (and Addressing their Fears) intended for non-CI audiologists and others in hearing health in collaboration with AudiologyOnline on. The four webinars were titled (1) Cochlear Implant Adult Outcomes: How do I know I will gain more than I lose?” (Jan Larky AuD); (2) Health Insurance DOES Cover Cochlear Implants (Terry Zwolan PhD and Donna Sorkin MA); (3) Understanding Cochlear Implant Surgery (Sarah Mowry MD); (4) Cochlear Implant Rehabilitation for Adults (Naama Tsach PhD). Over 1600 viewings have been completed.
- Expanded web content on the ACI Alliance website on adult rehabilitation via Naama’s Blog with new posts addressing specific concerns for individuals with hearing loss during the COVID-19 pandemic as well as broader content on rehabilitation and mapping appointment tips. The blog also addressed developing research and perspectives on how individuals who experience deafness in early childhood benefit from a CI as adults. Naama’s Blog continues to address an important constituency and is shared widely among individuals and groups involved in hearing loss. It consistently ranks in the top five areas of the website. The 2020 blog posts included:
Research - The advent of COVID-19 introduced challenges to providing patient care and offered the opportunity to explore transformative and innovative approaches for care via telehealth. ACI Alliance conducted a competitive process to encourage relevant research incorporating diagnosis, programming and/or rehabilitation. An award was made to UCSF to study the “Development of a Cloud-Based System for Remote Cochlear Implant Programming and Speech Perception Testing” to expand options for patients without physical access to care providers and to allow a tele-visit in a patient’s home. https://www.acialliance.org/page/telehealthnews
- A grant by Oberkotter Foundation allowed ACI Alliance to update the seminal Project HOPE study published in 2000 by Mohr et al to study the cost effectiveness of pediatric cochlear implantation, work that has been a central component of public policy discussions on pediatric deafness for two decades. A team of social scientists will evaluate CI cost effectiveness in light of early intervention for childhood deafness. https://www.acialliance.org/page/SocietalCosts
- 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 patterns.https://www.acialliance.org/page/MemberSurveys
- To support a National Coverage Determination (NCD) ACI Alliance initiated a study in 2013 to assess outcomes in Medicare beneficiaries with scores that fell between 40 and 60% correct on AzBio sentences in best aided condition. Results were published by PIs Terry Zwolan and Craig Buchman in JAMA Oto in October 2020 and a formal request for reconsideration of an NCD was submitted to CMS.
Advocacy - Expanded ACI Alliance State Champion program, which at 2020 year-end included 135 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
- Launched the Cochlear Implant Consumer Advocacy Network (CI CAN). CI CAN was created to offer advocacy opportunities adult recipients and family members and a means for them to share their CI stories. Since the launch, membership has grown steadily bolstered by with training and active advocacy at the state and national level.
- Implemented advocacy software to track state and national legislation and provide means to contact public officials on legislation and other concerns. Set up alerts on state CMV legislation, created action alerts on multiple state and national bills (generating over 200 letters), and tracked key parent choice bills (i.e., LEAD-K) as proposals progressed throughout state legislative chambers.
- Responded to COVID-19 public health emergency by tracking changes in telehealth insurance coverage and availability. Provided timely updates to members and created webpage focused on the changes, outlining ability to provide telehealth services.
- Worked on HR 3; this House proposal did not move forward but was proposed to include language to expand Medicare to cover hearing aids for individuals with severe or profound hearing loss. ACI Alliance provided language that would have encouraged discussion of cochlear implants as an option during a hearing aid evaluation. Met with key Committee staff and other Members in the House and Senate. Used these initial discussions to establish relationships and the opportunity for future discussions on hearing healthcare.
- Continued to participate in coalitions in the hearing loss and general disability field to expand attention given to cochlear implant access and awareness.These include chairing the Parent Choice Alliance and Friends of the Congressional Hearing Health Caucus through the first half of 2020 and serving as members of the Deaf and Hard of Hearing Alliance (DHHA), Independence through Enhancement of Medicare and Medicaid (ITEM) Coalition, and Habilitation Benefits (HAB) Coalition.
- Joined the E/M Coalition which successfully urged Congress to provide relief from proposed Medicare Physician Fee Schedule reimbursement cuts associated with changes to evaluation and management (E/M) codes. This effort was successful; the Consolidated Appropriations Act, 2021 (Omnibus and Coronavirus Relief Bill), passed by Congress on December 21, 2020 included a significant reduction in anticipated Medicare provider payment cuts due to E/M coding changes and a phased-in implementation of these E/M adjustments.
- Provided comments to CMS on the Proposed Rule, CY 2021 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies. The comments included a request to expand telehealth coverage under Medicare, specifically adding cochlear implant services CPT codes 92601-92604, to the list of expanded telehealth services.
- Continued work with the Parent Choice Alliance in collaboration with other major organizations in the field to provide a mechanism for collaboration and coordination to jointly address and defeat initiatives designed to limit opportunities for families that wish to pursue spoken language approaches using technology.
- 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. Collaborating with other organizations in the field, our State Champions defeated eight state bills.
- Met with President Biden’s transition team to discuss the Disability policy and concerns with language that could limit parent choice.
- Continued discussion on improving 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 experience in pursuing a cochlear implant within the VA system. https://www.acialliance.org/page/Veterans
- Encouraged submissions on cochlear implantation by experienced CI audiologists to the annual Joint Defense Veterans Audiology Conference (JDVAC). One submission was accepted and given at the virtual meeting on cochlear implant candidacy and outcomes.
- Expanded efforts at the national and state levels to expand awareness and education on Cytomegalovirus (CMV). State Champions in multiple states assisted with promoting legislation, work that will continue in 2021. Continued collaborative efforts with the National CMV Foundation.
- 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—both osseointegrated and cochlear implants and related services under Affordable Care Act Marketplace plans for people of all ages.
- Provided comments on the U.S. Preventive Services Task Force Draft Recommendation Statement on Hearing Loss in Older Adults: Screening. Included recommendations on adult screening for hearing loss.
Build an Effective Organization - Despite challenges of COVID, maintained total number of Organizational members at 101 by year-end. Our national organization had 1800 active members comprised of professionals, students, adult consumers, veterans/military, and parent members at the close of 2020.This represents growth of 37% from the prior (2019) year.
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