Children's Cause for Cancer Advocacy is a strong advocacy and policy voice for children with cancer in national debates on research, new therapy development and health care reform. Our mission is to achieve a long, healthy life for every child with cancer.
As one of the co-hosts of last fall's workshop on chemotherapy-induced hearing loss in pediatrics, the Children's Cause is proud to share the formal Voice of the Patient report submitted to the FDA last week: View ReportYoung adult survivors of childhood cancer and parents of children with cancer participated in this externally-led Patient Focused Drug Development meeting on September 13, 2018, in the DC metro area. This meeting was an incredibly empowering day for childhood cancer survivors and family members, giving them a long-deserved spotlight to share their very personal stories about the severe impact that hearing loss has had on their lives.Recent news stories about hearing loss in pediatrics:Hearing loss weakens skills that young cancer survivors need to master reading (Science Daily)Severe hearing loss from pediatric brain tumor treatment may cause cognitive difficulties (CureToday) Treatments for childhood cancer can devastate lives years later. Scientists are trying to change that (Science magazine)The formal report provides the FDA with patient perspectives to inform their regulatory decision-making and improve the drug development process. It is our hope that this report will be used to guide approvals of much-needed therapies to prevent - and ultimately treat - chemotherapy-induced hearing loss in survivors of childhood cancer.Among the key points in the report:Survivors with hearing loss report severe social isolation and anxiety as their single most challenging quality-of-life issue, describing difficulties in trying to keep up at school or interact with colleagues at work.Although patients use a variety of devices, therapies, and adaptation strategies to manage the consequences of hearing loss, the effectiveness is limited and each modality has significant downsides, with 37% of respondents indicating that these interventions did not help at all.Hearing aids are the most widely-used intervention but can have significant disadvantages, including discomfort, expense, reliance on battery life, and poor performance in noisy environments.The number one issue that worries caregivers and patients the most about hearing loss is that its severity will worsen, impacting related issues like tinnitus and balance.This FDA-approved, externally-led meeting was organized and presented by the Children’s Cause for Cancer Advocacy, Children’s Brain Tumor Foundation, Mattie Miracle Cancer Foundation, and Momcology, with generous support from the below sponsors.Learn more at childhoodcancerpfdd.org