California lawmakers are pushing to add frontotemporal degeneration to the state’s disease registry. Advocates say the data gap the bill aims to close falls hardest on Latino families, who face a starkly disproportionate dementia burden and some of the biggest barriers to getting diagnosed in the first place.
When State Sen. Roger Niello stood before advocates and lawmakers at the California Capitol this month to push Senate Bill 1047, his argument was simple: “You cannot solve what you do not count. And you cannot allocate resources for patients and families that you do not see.”
The bill, co-authored by Niello (R-Fair Oaks) and Sen. Ben Allen (D-Santa Monica), would require the California Neurodegenerative Disease Registry to begin collecting data on frontotemporal degeneration, or FTD, the most common form of dementia in people under 60. Doing so would make California only the second state in the country to systematically track the disease.
Assemblymember Jacqui Irwin, a Democrat from Thousand Oaks, framed the bill’s purpose in research terms: “This bill leverages California’s world-class research and medical community to ensure that we do everything we can to close this gap and ultimately find a cure.” She also thanked Emma Heming Willis, the actress and wife of Bruce Willis, who has publicly advocated for FTD awareness since her husband’s 2023 diagnosis.
The Data Gap the Bill Doesn’t Mention
Nowhere in the bill’s language or the press coverage around it is Latino health specifically addressed. But separate, well-documented research suggests that closing this kind of data gap could matter disproportionately for Latino families in California.
A study from UCLA’s Mary S. Easton Center for Alzheimer’s Research and Care found that Latino and Hispanic individuals, who make up nearly half of Los Angeles County’s population, face a projected tripling of Alzheimer’s disease and related dementia prevalence by 2040. The same study identified a compounding problem: Spanish-speaking Latino residents face a documented digital divide that limits their access to dementia prevention and care resources, a barrier that grew worse during the COVID-19 pandemic as more health services moved online.
That combination, rising prevalence paired with weaker access to information and diagnosis, is precisely the kind of invisible burden a state registry is designed to expose. As FTD advocate Meghan Buzby put it during the Capitol rally, “Understanding who is being diagnosed, where, and under what circumstances changes everything about how a state can respond.”
Why Undercounting Hits Latino Families Hardest
FTD is already notoriously difficult to diagnose. It’s often mistaken for other neurodegenerative diseases or psychiatric conditions because it strikes younger patients and affects personality, behavior and language before memory. Niello’s own language, that families are “fighting this disease in the dark,” describes a problem that compounds for Spanish-speaking families navigating a healthcare system that already offers them fewer language-accessible resources and lower rates of digital access to specialists and clinical trial information.
Without diagnostic data broken down by community, health officials have no way to know whether Latino patients are being underdiagnosed, diagnosed later, or simply never reaching the specialists who could identify FTD in the first place. A registry doesn’t fix language access or the digital divide on its own, but it would, for the first time, generate the evidence needed to know whether those barriers are producing a measurable gap in diagnosis rates.
What Happens Next
According to Niello, implementing the expanded registry would cost the state approximately $2.7 million for data collection and storage, and the funding request will be considered as part of next year’s budget process. The bill has moved with rare bipartisan support, but its fate now depends on that funding decision.
For Latino families already facing a projected surge in dementia cases over the next two decades, whether the state chooses to fund this registry may determine whether their experience with the disease becomes visible enough to shape future resources, or remains, as Niello put it, in the dark.
