NY State Senator Michelle Hinchey Introduces Bill to Create State FTD Registry

Graphic: NY State Senator Michelle Hinchey Introduces Bill to Create State FTD Registry.

New York State Senator Michelle Hinchey introduced a bill on January 3 to create a statewide FTD registry that would document diagnoses.

Senate Bill S7874 would require healthcare providers in New York to report diagnoses of FTD to the state Department of Health, which would then publish the collected data in the registry; the public will have access to the data through a dedicated webpage. The bill also directs the Department of Health to create an FTD registry advisory committee to guide the department on what must be reported. Additionally, the bill calls for the department and advisory committee to develop yearly reports to keep legislators and the governor apprised of the state of FTD and other dementias across New York.

FTD affects many Americans but lacks awareness nationwide and is often misdiagnosed as a psychiatric condition or a different neurodegenerative condition like Alzheimer’s disease. The absence of focused data collection contributes to the low awareness among medical professionals and the public.

“Accurate data on the prevalence and incidence of FTD is lacking,” said AFTD Director of Advocacy and Volunteer Engagement, Meghan Buzby, MBA. “If passed, Senator Hinchey’s bill to create the first and only state registry for FTD and related dementias would be a huge step forward in determining the impact of this disease on communities across the state and provide a template for similar legislation in other states.”

The bill is only the latest FTD-focused legislation introduced by Hinchey. Since the FTD journey of her father, former U.S. congressman Maurice Hinchey, who passed in 2017, Hinchey has become a prominent and passionate advocate for families affected by FTD. In addition to the bill for a state registry, Hinchey has also put forward Senate Bill S7423, which would create dementia care coordinators at area health agencies that would provide support to persons diagnosed.

“Our campaign to raise nationwide awareness of frontotemporal degeneration (FTD) is a personal fight that started the moment my dad was diagnosed. Anyone who has witnessed a loved one suffer from FTD understands the heartbreak, the struggle with misdiagnosis, the challenge of finding affordable long-term care, and the need for quality information to help prepare for every stage of the disease,” said Senator Hinchey. “My bill to create the first state-level FTD Diagnosis Registry in the country will bring us closer to a world without FTD and produce a legislative model that can be replicated across all 50 states. Our registry will educate doctors about this often-misdiagnosed brain disease, provide valuable insight into the prevalence of FTD diagnoses across New York State, and create a public database of available services and resources to help people and their loved ones navigate a diagnosis. I thank our partners at AFTD for elevating our bill and for being a lifeline for so many people and families battling this terrible disease.”

AFTD staff and volunteers met with Sen. Hinchey last year during a session of the New York Senate where the senator addressed fellow legislators about the state’s September 24 – October 1 FTD awareness week. For World FTD Awareness Week 2023, Hinchey joined Emma Heming Willis on her YouTube channel to discuss educating friends, neighbors, and healthcare providers about FTD’s unique symptoms and challenges.

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