By David H. Kirkwood
McLEAN, VA–Only about 6% of the children and adults in the United States who are good candidates for cochlear implants have them, says Donna Sorkin. That’s why the American Cochlear Implant Alliance (ACI Alliance), where Sorkin is the executive director, is stepping up its efforts to increase awareness of and access to cochlear implants.
The membership of the newly formed non-profit group includes clinicians and scientists in cochlear implantation, including otologists, audiologists, speech pathologists, and educators as well as parent and consumer advocates. Its mission is to expand access to the gift of hearing provided by cochlear implantation through research, advocacy, and awareness.
To accomplish that mission, the Alliance aims to
- Conduct awareness campaigns among the general public, patients, and medical community.
- Develop and sponsor clinical trials and research documenting benefits and demonstrating links to overall health and wellness.
- Educate health care plan executives and government officials about cochlear implant technology, its economic and social benefits, and the relative value associated with coverage.
- Organize collaborative efforts to foster new research and encourage best clinical practices for standardized outcomes.
Sorkin, who was appointed ACI Alliance’s first executive director last November, is well qualified to lead the its efforts to increase awareness of the benefits of cochlear implants. An implant user herself, she has often spoken of “experiencing first-hand the extraordinary power of this evolving technology.”
She was formerly executive director of two prominent non-profit organizations dedicated to advancing the interests of people with hearing loss: the Hearing Loss Association of America and the Alexander Graham Bell Association for the Deaf and Hard of Hearing. Before joining ACI Alliance, she was vice-president for consumer affairs at Cochlear Americas for 11 years. In that role, she developed legislative and advocacy programs to expand reimbursement of cochlear implantation. She also created the HOPE program, which supports professionals who work with children with cochlear implants in educational and therapeutic settings.
FILM TO DEBUT AT ACI ALLIANCE CONFERENCE
ACI Alliance will unveil an effective new vehicle for increasing public understanding of cochlear implants at its symposium “Emerging Issues in Cochlear Implantation,” being held October 24-26, in Washington, DC. On the opening evening, all conference attendees and media representatives will be invited to view a private showing of the film drama 95 Decibels, which tells the story of a young couple who suspect their first child, Sophia, isn’t hearing.
Based on a true story, 95 Decibels explores the emotional obstacles parents face when they get an unexpected diagnosis of hearing loss for their child. It follows Sophia’s parents, who have little experience with deafness, as they seek to figure out which medical options and communication strategies will best serve their toddler daughter. They seek the advice of medical professionals as well as parents of other hearing-impaired children in coming to terms with their situation.
Along with the screening of this moving new film, there will be a reception featuring an interactive discussion with the film’s director, Lisa Reznik, whose own daughter was diagnosed as profoundly deaf at age 16 months. Also attending the reception will be members of the crew and cast, which includes Goran Visnijc, who starred for many years on the long-running television series, ER.
Among the emerging issues that will be addressed at the symposium in Washington are Hearing Preservation, Implantation of the Very Young, Implanting Multiply Involved Children, Cochlear Implants in Single-Sided Deafness, Cochlear Implantation in Older Adults, and Telehealth and Cochlear Implantation.
Panels of experts on each topic will report on key research findings, clinical implications, and cost effectiveness related to them.
Further information on the conference is available online.