CIICA   News   Patient/user Voice

CIICA travels to Istanbul – IPAC and EURO-CIU

April 4 and 5 2025 saw the International Paediatric Audiology Congress and EURO-CIU 30th Anniversary celebrations in Istanbul. Ms Aylin Ozgur, President of the Cochlear Implant Association and Chair of the 15th EURO-CIU Symposium and Robert Mandara, President of EURO-CIU presented awards for leading professors and contributors to the field of cochlear implants. Robert also demonstrated his love of music by playing the piano for us. Sule Cekic, Professor of Audiology, and Chair of the International Paediatric Audiology Congress welcomed many speakers over the days of the congress on a range of topics.

Tobias Fischer accepted a lifetime award on behalf of Dr Monika Lehnhardt, wife of Professor Lehnhardt, who began EURO-CIU, with a video from Dr Lehnhardt. Later, Tobias, the first child in Germany to receive CI, was voted the new President of EURO-CIU taking over from Robert Mandara.

Leo De Raeve, Chair of CIICA and Scientific Advisor to EURO-CIU congratulates Tobias Fischer on becoming President.

CIICA stand was very popular with many visitors- and new members! Tobias and Deray visit the stand to look at the many advocacy resources available for you.

Sue Archbold led a group of young adults who talked about their experiences and the advice they would give to others. Tobias, Deray Derim, Melis Durmaz Yıldırım and Dominique Sturtz, with her daughter Mariella, gave great examples of the individual nature of each hearing journey and also the value of parents and families. Deray told us that our flaws do not matter!

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CIICA   News   Patient/user Voice

LAUNCH OF THE ADULT LIVING GUIDELINES!

Download CIICA’s summary of the Living Guidelines and use them for your advocacy activities.

Less than 1 in 10 of those who are deaf and could benefit from a cochlear implant (CI) have access globally. CIICA was delighted that our Chair Leo De Raeve was Co-Chair of The Task Force and to provide the CI user and family voice to the Living Guidelines Project through our Conversations. The project has developed evidence based living practice guidelines that can be adapted and adopted in country, in order to optimise the lifelong care for adults eligible for CI. These guidelines have been painstakingly developed through a systematic review by a dedicated team of researchers, audiologists, clinicians, and cochlear implant users, bridging the gaps between cutting-edge science, real-world application, and the lived experiences of CI users.

It is hoped the Living Guidelines for adult cochlear implantation will help at addressing the needs of adults experiencing hearing loss and provide a comprehensive roadmap towards cochlear implantation. Download the full Recommendations here – PDF

The Recommendations and Good Practice Statements

  • Hearing, Screening and Assessment
  • Referral (for hearing healthcare evaluation/management)
  • Specialist Evaluation
  • Surgery
  • Rehabilitation
  • Patient Outcomes and Measures

You can find more about the process of development and the complete Recommendations at https://adulthearing.com/standards-of-care/

Lee Schoushkoff, CEO of the Pindrop Foundation says, “As we continue championing hearing restoration advancements, the Living Guidelines for Adult Cochlear Implantation will be a vital resource in helping to address the crucial and significant unmet need in adults who are potential candidates for cochlear implants. We hope the Living Guidelines will pave the way for better knowledge dissemination, informed decision-making, and streamlined implantation procedures, ultimately promoting healthier, more fulfilling lives for adults experiencing hearing loss.”

Leo De Raeve, Chair of the Cochlear Implant International Community of Action (CIICA) and Co-Chair of The Task Force says, “The Living Guidelines are essential in advocacy work for cochlear implants in adults. They were developed through a systematic literature review and the involvement of users and families through CIICA. The Living Guidelines are essential to increase awareness, access, provision, outcomes, and lifelong aftercare and can be seen as a guide for advocacy to improve the experience and usefulness of cochlear implants for adults. I was delighted for CIICA to be involved in the project  and look forward to using them globally to change CI services.”

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CIICA   News   Patient/user Voice

Nordic Declaration on Adult Cochlear Implantation

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On World Hearing Day, 2022 we are delighted to share the Nordic Declaration on Adult Cochlear implantation : IMPROVING ACCESS TO COCHLEAR IMPLANTS FOR ADULTS.

Only one in ten have access to life-changing cochlear implantation.

Patient organisations in all Nordic countries want to change this and have therefore joined forces to formulate a declaration to be used to politicians and other key stakeholders.

 This declaration focuses on adults over 18 years with severe to profound hearing loss, of over 65dB7:

  • All adults with severe to profound hearing loss should be eligible to be evaluated for CI’s.
  • Professionals who see those with Hearing Loss must have up to date information and guidelines for when and how to refer patients to CI teams.
  • For adults eligible for CI’s, access to assessment and treatment should be provided without any unnecessary delay.
  • Established indications and guidelines should be matched with adequate resources and funding.
  • Adults with severe to profound hearing loss should get access to optimal hearing care in both ears, including bilateral implants.
  • CI is a lifelong treatment.
    • For the severe to profound hearing-impaired every technology improvement counts. Hence regularly updating to the latest technology is required, with a minimum replacement every five years.
    • Consumables such as batteries, coils, remote controls, swimming kit for CIs, activation of telecoil, BT/streamers and microphone filters should be funded
  • As a long-term goal adult screening should be introduced routinely from the age of 50 years as per the WHO recommendations for adult screening: (WHO, Hearing Screening handbook, 2021).

By accepting and committing to the declaration, the Nordic region will be set to lead the world in providing comprehensive, sensible and fair cochlear implant provision for adults. Cochlear implants are life-changing sound investments, restoring good hearing to most severely and profoundly deaf adults who strive to hear, comments Robert Mandara, VP EURO-CIU, Finland

DOWN LOAD FILE HERE:

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CIICA   News   Patient/user Voice

HLAA’s Externally-Led Patient Focused Drug Development Meeting: Voice of the Patient Report now available

The Hearing Loss Association of America (HLAA) received permission from the U.S. Food & Drug Administration (FDA) to hold an Externally-Led Patient-Focused Drug Development Meeting for People and Families Living with Sensorineural Hearing Loss (https://www.hearingloss.org/hlaa-pfdd/) on Tuesday, May 25, 2021.

This was a real opportunity to ensure patient engagement has a role in shaping future hearing loss treatments and creating a deeper understanding by FDA of the impact of hearing loss on individuals and their quality of life. The voice of those with hearing loss was certainly heard loud and clear!

We are delighted to share that the “Voice of the Patient” report is now available online. You will also find the comments we received prior to, during and after the meeting online.

The May 25 HLAA interactive virtual meeting had 411 unique views. There were 712 people who pre-registered for the meeting.

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