The Cochlear Implant International Community of Action (CIICA) held its first global conference, CI Advocacy in Action, in Brussels, Belgium, May 9-10, 2024. Hearing Loss Association of America (HLAA) Executive Director Barbara Kelley, who serves on CIICA’s board, shares her impressions as she represented HLAA at the meeting.
Eddie Mukaaya from Uganda and Qais Khan from the U.K.
Eddie Mukaaya from Uganda told the story of his daughter. “Even as our first-born child, she had two things that already left her behind: First, she was born deaf and second, she’s a female in my country.” After the Mukaaya family traveled to the United States so their daughter could get a cochlear implant (CI), Eddie went on to establish Hear His Voice Uganda for other parents needing support and information.
Ordinary people are doing extraordinary things to advocate for themselves and others to get CIs, often not paid for by insurance or government programs. A pervasive lack of information and follow-up care makes their situations even more challenging.
CIICA’s first global conference gave people a voice who normally wouldn’t have one on the world stage. For instance, a young working mother from Slovenia sold her car to come to Brussels just to meet others with implants.
The CIICA board travels from across the globe.
CIICA is not a typical organization; it’s more like an international network of people with a common interest sharing their experiences and learning from one another. Their virtual network and popular “CIICA Conversations” draw participants from around the world, while the Living Guidelines for Adult CI and Advocacy Guide resources provide solid information.
Here in the U.S., we have laws to identify children with hearing loss at birth so they can quickly be fitted with hearing aids or receive cochlear implants. We’re fortunate that Medicare and some Medicaid plans cover CIs, as do some private health insurers. Of course, there’s always room for more advocacy, particularly in regard to hearing aid coverage and communication access—yet meeting people with varied experiences and backgrounds made it clear to me why the CIICA network is so important in countries with far fewer advantages.
Barbara Kelley with Dr. Sue Archbold, coordinator of CIICA.
My experience also made it clear that, although HLAA is a national organization, it has a place in this world beyond our 50 states. We are a member not only of CIICA, but also of the World Health Organization’s World Hearing Forum.
Each of us in HLAA is part of this global community of people with hearing loss, doing the best we can every day to use the latest technology so we can live our best lives. Our priceless community of support provides valuable knowledge, resources, education and connection with peers. Learn more about joining us: hearingloss.org/membership.
