OCTOBER 2021 
In October 2021, American Cochlear Implant Alliance celebrates its 10th anniversary. In 2010, a small group of CI clinicians gathered to consider how they might advance access to cochlear implantation. It was determined that without a dedicated organization, cochlear implantation would continue to fall behind priorities at the major organizations in the field of hearing loss. The American Cochlear Implant (ACI) Alliance was formally incorporated as a nonprofit organization in October 2011 with a specific mission on CI access through research, advocacy, and awareness. A Founder’s Board comprised of thought leaders in the field guided the establishment of the organization. 
Message from the Chair
Oliver F. Adunka MD
William H. Saunders MD Endowed Professor
Vice Chairman for Clinical Operations Director, Otology, Neurotology & Cranial Base Surgery Department Otolaryngology, Head & Neck Surgery & Neurosurgery
The Ohio State University Wexner Medical Center
As we celebrate our 10th birthday, we highlight the top ten accomplishments of the ACI Alliance at this milestone birthday. The ACI Alliance was founded with the intent to eliminate barriers to cochlear implantation and to make this groundbreaking intervention available to many more candidates.
We have made great strides with regards to the number of cochlear implants performed in the US. ACI Alliance members can take pride in our efforts together. An often-cited estimate of 5% CI utilization was based on 2010 data that was published in a 2013 research study. A more recent calculation using traditional candidacy criteria was reported at the CI2021 Virtual conference by Dr. Ashley Nassiri. In 2015, approximately 13% of patients with bilateral severe-to-profound sensorineural hearing loss had undergone implantation, an improvement from 11% two years prior.
While these numbers and their trajectory are encouraging, we continue to struggle with relatively low penetration rates. By comparison, some western European countries such as Germany perform roughly twice as many cochlear implants per capita when compared to us. While it is certainly encouraging to see that greater penetration numbers are possible, it also highlights the potential detrimental effect of our healthcare system on access. However, these may also highlight the fact that low penetration rates may not be due to a single issue but are likely multifactorial starting with the invisible nature of hearing loss and the often-stigmatized disability.
While financial incentives are often quoted as a driving factor for low penetration rates, I believe educational efforts may be our biggest opportunity for growth. It may be difficult to provide the proper hearing intervention to most candidates in this country. However, the ACI Alliance was founded on the goal, which was supported by each member of the Founders Board. The current leadership of the ACI Alliance strives to continue the passion of our Founders Board building upon the same mission of improving access to cochlear implantation through research, advocacy, and awareness. I can certainly speak for my own passion for cochlear implantation as a main driving force of my professional career.
In addition, the ACI Alliance Founders recognized that individual efforts pertaining to cochlear implant advocacy and awareness were likely to be less successful than joint efforts, especially when multiple professional groups come together and join forces. Alliance in our name underscores this belief in working collaboratively with others wherever we can find common ground.
Therefore, I would like to call on all members to reach out to us so we can explore creative ways to enhance our mission. It is my firm belief that structured and frequent advocacy, education, and outreach will ultimately continue to show results and help spread the word on the lifechanging effects of cochlear implantation.
By performing these activities, we should not forget the many positive downstream effects of cochlear implantation on, for example, social re-integration in adults. In pediatrics, the opportunity to pursue spoken language and educational benefits (including literacy) have been shown to be greatly enhanced via cochlear implants. If you are not familiar with our website, I encourage you to explore and learn more about the resources and information we provide for patients, their families, and professionals.
Finally, I would like to express my gratitude for your support of our organization and the great cause we all serve. I can say that the passion to enhance patients’ lives via cochlear implantation that our Board of Directors, the ACI Alliance staff, and our constituents demonstrate will ultimately lead to positive changes for the field including the communities we serve, our patients, and the diverse group of professionals helping patients enhance their communication abilities. Ultimately, this passion will continue to push our agenda forward and make cochlear implants available to a broader candidate pool.
Founding of American Cochlear Implant Alliance:
Top Ten Accomplishments in Ten Years October 2021 The following “Top Ten” represent broad, unique and important organizational accomplishments. A robust public CI informational website. The ACI Alliance website has grown to be a place for the general public to find information on a range of cochlear implant topics that is suitable for consumers, general medical practitioners, and hearing health professionals outside of CI. Two-thirds of the traffic to the site is “organic” meaning people are searching on cochlear implants, steps to a CI, finding a CI clinic, insurance, candidacy and more. The majority of our more than 250 daily visitors are coming to the website for the first time—85%. Though there are other websites with coverage on cochlear implants, ACI Alliance is arguably the most comprehensive, factual, non-commercial resource on CI for the general public but it is also a site providing a focus for ACI Alliance members and the CI community. Some of the inquiries are a bit odd; for example, we receive inquiries via our website or on the telephone about purchasing a part for a sound processor. We help callers determine what brand of CI they have (truly some people don’t know) and then direct them to the right company. Dinner one night was interrupted by a hospital emergency room nurse who wanted to know if a patient could have MRI. We helped the nurse determine which company had manufactured the patient’s CI and provided the 24-hour number to call. Vehicle for CI Community to collaborate. The establishment of ACI Alliance has helped create a CI (and educational) center focus; in the past our field’s collaboration occurred largely through CI manufacturers. We now have an ongoing mechanism for clinicians, scientists, and educators from across the care continuum to come together and collaborate in an ongoing manner. We have an efficient mechanism for addressing insurance coverage (e.g., single sided deafness), Medicaid coverage and reimbursement, and Medicare candidacy. One of our first national initiatives was organized in 2013 to evaluate expanded CI candidacy in Medicare beneficiaries. (See #7 below.) Our advocacy networks described in #4 below are another important example. The CI companies remain important supporters and collaborators. Annual CI Meeting efficiency and broadened outreach. With the move to having the same entity (ACI Alliance) organize the CI conferences each time, the conference benefitted from operational continuity as well as carry-over from attendees on recommendations for future topics and coverage. In 2021, ACI Alliance implemented a format utilizing a national program committee that provides wide-ranging perspectives around the US and beyond. Public policy is an ongoing part of the discussion at the conferences especially at those meetings held in Washington DC when we arrange for our advocates to meet with Congressional members about our specific CI access issues. Congressional Members often join us. The meeting has grown in size and provides state-of-the-art communication access (for those with hearing loss) as well as growing opportunities for students, fellows and residents, encouraging young investigators to contribute to our field. 
Dynamic Public Policy Program with CI Advocates around the country. ACI Alliance is the only major organization actively working towards expanding access to cochlear implants in national and state public policies. We have dedicated governmental affairs staff and engage a major DC public affairs firm that helps us reach elected and appointed officials and hone our messages as part of national legislative efforts. The current push to pass hearing aid coverage in Medicare is a good example. We support such coverage of course but the decision to cover only those older adults with severe or profound hearing loss will further confuse those who should be referred for a CI evaluation, a Medicare covered service that would provide greater benefit for someone with a profound hearing loss. ACI Alliance is the only organization that continues to emphasize hearing care across the continuum during the discussions of hearing aid coverage noting that hearing aids are only one part of a set of hearing solutions. | Our State Champions were one of our earliest programs, initiated to provide support for members to address CI coverage in Affordable Care Act Marketplace Plans. This program now involves 143 Champs in 43 states and Washington DC. In 2020, we established the Cochlear Implant Consumer Advocacy Network (CI CAN) for parents, adult consumers, and anyone else who wants to share their stories about CI as part of our advocacy. As this network grows, CI CAN will serve as a powerful force in our advocacy efforts. |  |
Parent Choice part of the discussion. There is an ongoing effort by certain interests in the Deaf community to influence policy-making on communication options by erroneously stating that children who are deaf and hard of hearing who are not using sign language are “language deprived.” This is not a research-based statement—it is opinion driven. ACI Alliance takes no position on the use of ASL or other forms of sign language. We believe that such decisions should be driven by individual family situations. We oppose efforts by some groups to provide misleading information and attempt to force parents to make a specific communication choice for their children. In 2019, ACI Alliance encouraged leading organizations in the field to join with us to collaborate on parent choice initiatives in state and national policies. Prior to organizing the Parent Choice partnership, there was no coordinated effort for the various organizations to work together and provide a coordinated, research-driven response. We have generally been successful in defeating these egregious initiatives designed to denigrate the value of hearing technology. A position paper on Parent Choice was developed and adopted by the Board of Directors, which has helped crystalize our efforts. Outreach to Non-CI Audiologists and HA Dispensers to Expand Awareness & Referrals. Consistent referrals to a CI center for a candidacy evaluation are thought by many to be the most important means of improving the current low CI utilization rates. ACI Alliance has initiated multiple efforts to reach hearing care professionals outside of CI who see patients for hearing aid fittings. An annual program with AudiologyOnline (AO) is intended for a broad audiology audience. When the CI2020 International conference was cancelled due to the COVID pandemic, AO stepped up to host the content for a free online conference—an event that that reached 1750 audiologists and speech language pathologists and continues to draw a general audience. In 2022, ACI Alliance will publish organizational guidelines to help clarify the confusion about who is a CI candidate for those in and outside of CI. Individual papers on best practices in determining cochlear implant candidacy in adults and children and companion papers on CI in single sided deafness in adults and children will be published in Ear and Hearing. Free memberships and educational sessions on CI candidacy and outcomes are offered to members of the International Hearing Society, the organization whose members serve approximately half of US adult hearing aid wearers. Outreach to the American Academy of Family Physicians included two presentations at the annual conference on when to refer patients, what is involved in CI, and typical outcomes. Focused Research Program Expand Access / Improve Public Understanding of CI Impacts on People. The founders of ACI Alliance emphasized conduct of research to address CI access and public policy concerns. An early research project aimed to examine the impact of providing cochlear implants to Medicare beneficiaries with more residual hearing to determine if older adults had similar outcomes to the younger population. This study was completed with the results supporting a National Coverage Determination from CMS that requests that those covered for a CI Medicare be eligible with hearing aid outcomes similar to those that guide CI for adults younger than 65. Research has been supported on a range of topics that impact public policy including quality of life impacts, cost effectiveness of CI in children, telehealth, and insurance coverage for CI Medicaid and single-sided deafness. Portrayal of Cochlear Implantation. The discussion of cochlear implants in mass media is often inaccurate, negative, and intended to discuss the intervention in an off-putting manner. Popular films such as Sound of Metal (released in 2020) included extensive misinformation (e.g., CI isn’t covered by health insurance, professionals send recipients off without support and guidance, showing large surgical scars that don’t resemble today’s surgery) are designed to cast a negative light on the intervention. ACI Alliance actively participates in such discussions—whether the topic is popular film, opinion pieces posing as research in journals, or national public policy on children. Too often hearing care professionals and even consumers are unwilling to step up for fear of being “chastised by Deaf advocates.” We do step up. ACI Alliance is a recognized, credible voice on the facts surrounding cochlear implants. With the creation of a parent/consumer network, our ability to engage in such discussions is enhanced. Insurance Coverage Content for General Public. From its founding, ACI Alliance has sought to change the public discussion on CI coverage for anyone of any age who would benefit and fits candidacy. The organization encourages research and guidance that is intended to demonstrate health and quality of life benefits that to advance insurance coverage from public and private institutions. We have developed robust website content with the aim of eliminating the public perception that CI isn’t covered by health insurance. This is shared on our website; directly to candidates, family members, and general health care professionals such as primary care physicians; and during discussions of insurance on online groups. Our website comes up second in Google search on the topic and is one of the most common inquiries we receive via our phone or website info line. We seek to change the public perception that CI is like hearing aids and isn’t covered by insurance as well as the misinformation that exacerbates the problem in film and general media. In the coming year, we will work directly with large insurers who refuse to cover for approved indications. Trusted Source on When and Where to go for a CI. Too often people of all ages fail to move forward because they don’t know when or where to go. Cochlear implants are viewed as a last resort—something one pursues “at the end of the road.” That reticence is exacerbated by the fact that people don’t know where go for an evaluation and remain in the hearing aid channel. Misleading information abounds—even from sources that should be reliable; it includes CI isn’t covered by insurance, the CI “brain” surgery is risky, there will be other better options soon such as drug therapy that will restore hearing for all who need it, and residual hearing will be destroyed. Some of the most basic questions that we respond to are: Where should I go for a CI?; am I too old?; should I wait until I have less hearing?; and won’t this preclude future options? The yellow map on the website of CI centers and related providers is a trusted source for people who don’t know where to go and is the second most visited page on the website. Along with the traditional professional entities in hearing health, ACI Alliance partners with mutually supportive consumer and parent web groups. We are then able to reach and respond to those who are exploring CI or searching for support—a mechanism that is increasingly important in the new Internet world that functions with fluid connections and a different type of membership than was typical in the past of membership than was typical in the past.
 We’re gratified to have contributed to greater awareness and CI utilization in the United States and will build and expand on what all of us have created with American Cochlear Implant Alliance. Here’s to the next 10 years and even greater awareness of this extraordinary intervention that all of us are so committed to providing to people of all ages who may benefit. Click here for PDF version.
|
