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Public commenters press council to include Down syndrome, FTD and indigenous needs in the 2026 national plan
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Summary
Multiple public commenters urged the NAPA advisory council to include people with Down syndrome and frontotemporal degeneration (FTD) in research and trials, to make registries and data from anti-amyloid therapies publicly available, and to sustain culturally grounded services for American Indian and Alaska Native communities.
During the public comment period, a string of advocates and nonprofit representatives urged the council to broaden research and services to better include populations at elevated risk for Alzheimer's and related dementias.
Sean Feely (NDSS) and several family advocates urged explicit inclusion of adults with Down syndrome in the national plan and clinical trials. "Down Syndrome occurs when an individual has a third copy of chromosome 21," Feely said, adding that people with Down syndrome face higher than 90% lifetime risk for Alzheimer's and are underrepresented in trials. Karen Gaffney, who said she has Down syndrome, put the request bluntly: "Open the clinical trials for people with Down syndrome. Drive policy changes to allow treatment. Treat early before symptoms arise. Please save our generation."
Speakers from the National Task Group (Matthew Janicki), Association for Frontotemporal Degeneration (Matthew Sharp and Terry Walter), and others called for improved diagnostic competencies for neuroatypical populations, better outreach within Medicare special needs and GUIDE programs, and tailored caregiver supports.
Diana Zuckerman (National Center for Health Research) urged stronger data transparency, asking that Medicare registries for patients on anti-amyloid drugs make detailed data available to NIH or CMS and to independent researchers so real-world benefits and harms can be assessed. "It's been 2 and a half years, and the results haven't been published in a peer reviewed journal," she said of alternative registry reporting.
Indigenous-focused speakers (Neil Henderson, Megan Dicken/IA Squared) stressed culturally grounded resources and the need for continued investment in Native-focused hubs and the CDC Healthy Brain Initiative to address higher ADRD burden, later diagnosis, and gaps in culturally appropriate services.
Why it matters: The comments collectively request that federal policy and research agendas account for related dementias and populations historically excluded from trials and highlight both data transparency (registries) and culturally specific service needs.
What the transcript shows: Representatives from advocacy organizations, family advocates, clinicians and indigenous organizations provided concrete asks: include Down syndrome and FTD in research and trials, require richer registry data under Medicare, expand diagnostic guidance and workforce training, and sustain culturally specific public-health resources and funding.
