ACI Alliance State Champion Program

ACI Alliance State Champion Program

American Cochlear Implant Alliance (ACI Alliance) pursues member-driven advocacy as a core element of its mission.  National staff support the work of State Champions (nearly 200 individuals in 2024) drawn from across the care continuum including surgeons, audiologists, speech language pathologists, scientists, educators of children with hearing loss, and others on CI teams. https://www.acialliance.org/page/ACIAStateChamps

Our efforts are supported by a Washington, DC based public affairs firm specializing in health and disability topics—Powers Pyles Sutter & Verville PC.

State Champions meet virtually on a quarterly basis and in person at the annual CI conference. Champs select the topics and issues that they wish to be involved in—there are no requirements.  All work by our Champs is supported fully by ACI Alliance staff with training, provision of draft letters/testimony, strategy sessions and more.

The State Champions program is for ACI Alliance members who have an interest in contributing to our public policy efforts at the state and national levels.

To learn more or join the ACI Alliance State Champions Network, contact info@acialliance.org

State Champs Dinner CI2024 Vancouver

Our State Champion’s work includes:

Improving Insurance Coverage

A long-term focus for ACI Alliance has been to increase state Medicaid coverage of cochlear implants for adults. (Children are covered in all states.) In 2024, South Carolina and Washington joined the majority of those that provide this coverage. Efforts continue in Colorado, Arizona, and Missouri. Missouri came close to passage but failed due to political decisions outside of our Champions’ control. Our State Champs have led the work on these projects with support from ACI Alliance staff.

Due to our ongoing engagement, UnitedHealthcare made the decision that, starting on September 1, 2024, the insurer will cover cochlear implants for children with bilateral deafness that meets the FDA guideline at 6 months of age and older and children 9 months of age and older with single-sided deafness. United recently changed their adult coverage to include SSD. Our work with private insurance companies often begins with contacts and information provided by State Champions. This was the case with UnitedHealthcare.

Early Hearing Detection and Intervention (EHDI) Barriers Project

Multiple studies have noted that a significant barrier to access to EHDI and a contributing factor to loss to follow-up is Medicaid due to low reimbursement rates, complicated enrollment procedures and a more limited pool of providers who accept Medicaid due to these factors. In 2024, 47% of US children were covered by Medicaid. For children with a health or disability such as hearing loss, the proportion of children covered by Medicaid is even greater.  ACI Alliance is supporting State Champions to collect data regarding barriers to intervention for young children in their states complicated by Medicaid. This will enable State Champions to address these issues with Medicaid officials in their states and will support ACI Alliance national efforts to report out to the Centers for Medicare and Medicaid Services (CMS) and Members of the US Congress with an interest in Early Hearing Detection and Intervention to discuss the impact of Medicaid on EHDI programs in many states.

Listening, Language, Literacy Initiative

In 2023, we began this initiative by reaching out to representatives of other organizations to collaborate in developing communication tools on the benefits of listening for language development in children with hearing loss. The effort was begun to address the continuing push by some groups to denigrate the value of cochlear implantation and state that unless a child with hearing loss has access to sign language, (s)he will be “language deprived.”  A committee was formed to address the misinformation and develop positive messaging. The committee developed and disseminated the “Listening—Language—Literacy” infographic that has been widely utilized by parents and clinicians.  The infographic has been translated into Spanish and will soon be available in Japanese. https://www.acialliance.org/page/listeninglanguageliteracy

Congenital CMV (cCMV) Screening

The federal Stop CMV Act—S. 3864/H.R. 7542 was introduced this year. This legislation would authorize new funding to incentivize hospitals and other health care entities that care for children to screen babies for cCMV within the first 21 days after birth. It also authorizes funding to collect data on cCMV and assist in the education and training of health care providers, parents, and the public. If passed, the bill would direct NIH to conduct research on this disease. ACI Alliance supports the national bill and will continue to work on state screening efforts. Michigan and Oregon are two states that will likely have legislation in 2025. ACI Alliance began its work on this issue due to the input and encouragement from State Champs, who have worked in their states to drive change.

Medicare Criteria Expansion

ACI Alliance continues to promote and share information regarding the 2022 Medicare criteria expansion for bilateral hearing loss. The objective was to use the National Coverage Determination (NCD) to increase public awareness of cochlear implants for older adults and people of all ages. There have been significant increases in the number of Medicare beneficiaries receiving CIs since the NCD expansion.

Work is underway for an NCD request on SSD coverage under Medicare.

Champs provided support by submitting comments on the 2022 NCD that expanded bilateral coverage during the public comment period. We will be engaging our State Champions to also support an SSD NCD during the public comment period.

Recent Federal Advocacy Efforts

ACI Alliance supports the Expanded Telehealth Act which would make permanent telehealth capabilities for audiologists and speech-language pathologists for Medicare beneficiaries. Since COVID, numerous studies have demonstrated the benefits of telehealth with many private insurance companies continuing coverage policies put in place during the pandemic.  We are urging both Congress and CMS to make the Medicare waivers permanent.

ACI Alliance submitted a letter to the National Institute on Deafness and Other Communication Disorders (NIDCD), NIH responding to a request for information regarding improving access and affordability for hearing health in adults. Our comments urged the agency to promote awareness of CIs and highlight the positive outcomes for adults. We noted that research has shown that many of those who qualify for a CI are unaware of the intervention and/or the positive outcomes enjoyed by the majority of CI recipients.

Our Champs support such Congressional legislation by being part of our Action Alerts:  https://www.acialliance.org/page/actionalerts

To view our letters to federal agencies, visit our testimony and comments page: https://www.acialliance.org/page/Comments_Testimony

ACI Alliance continues to engage with Congressional Members to promote knowledge and understanding of how CI can change lives.

ACI Alliance State Champs and Member Advocates head for Capital Hill meetings before CI2018 DC