Maryland bill would require dementia prevalence reporting and provider outreach; advocates and experts urge passage

House Bill 1004, the Public Health Alzheimer's Disease and Related Dementias Information on Prevalence and Treatment Act, would require the Maryland Department of Health to publish state‑level data on the prevalence of Alzheimer's disease and related dementias and to expand public-health outreach and provider education about diagnosis and available treatments.

Sponsor Delegate Ashanti Martinez told the Health and Government Operations Committee that the bill aims to make prevalence data and information about new Food and Drug Administration–approved treatments more readily available to Marylanders and to the health providers who care for them. “There’s 127,000 Marylanders that we know of that have this disease, and there's another additional 247,000 Marylanders who are uncompensated caregivers,” Martinez said, urging a favorable report.

Witnesses from the Alzheimer’s Association, the Maryland Virginia Jones Alzheimer’s Disease and Related Dementias Council, Johns Hopkins geriatrics, and caregiving organizations testified in strong support. Megan Peters, director of government affairs for the Alzheimer’s Association, said localized data would better inform resource allocation, public-health planning, and research. “Without it, we are limiting our understanding of the burden and the scope of dementia in Maryland,” Peters said.

Dr. Halima Amjad, chair of the Maryland Virginia Jones Alzheimer’s Disease and Related Dementias Council and a Johns Hopkins geriatrician, said Maryland’s CRISP health-information exchange and research capacity create an opportunity to generate “accessible data on true dementia prevalence, not just estimates.” She told the committee that more precise data would help track hospitalizations, trends and needs across jurisdictions.

Advocates also asked that the data collection include disaggregation to reflect populations disproportionately affected and that it add a data element to track co‑occurrence of Down syndrome; representatives of the Maryland Down Syndrome Advocacy Coalition asked the sponsor to consider adding a co‑occurrence field noting Trisomy 21 because people with Down syndrome face an elevated lifetime risk of Alzheimer’s disease.

Witnesses acknowledged a minimal fiscal impact in the bill’s fiscal note but suggested CRISP could partner with the Department of Health to reduce costs by using existing staff and infrastructure. Testifiers said that improved data and outreach could yield long‑term savings by better targeting services for people with dementia and their caregivers.

No formal committee action was recorded at the hearing. The committee closed public testimony after the panel and asked questions of the sponsor and advocates.

Why it matters: Advocates and clinicians said state-specific prevalence data and provider outreach can improve planning, identify geographic disparities, and help clinicians and patients navigate rapidly evolving treatment options.

What comes next: The bill will be considered by the committee; sponsors and advocates indicated willingness to work with state IT and public-health partners on implementation and data design.