Bill establishing registry for neurodegenerative disease signed into law

Advocates for victims of a debilitating neurodegenerative disease are celebrating a significant victory after Gov. Gavin Newsom signed into law a bill that will help bring the disease into the public forefront with a registry. Advocates say this law will help victims receive appropriate treatment and researchers search for a cure. Frontotemporal degeneration (FTD) became more publicly known when actor Bruce Willis was diagnosed with the disease. His wife, Emma Heming Willis, has played a key role in helping to advocate for the legislation, which was authored by Sen. Roger Niello (R-Fair Oaks). Heming Willis joined a powerful group of advocates and families of FTD victims in supporting Senate Bill 1047; the law will establish a new FTD registry that will document every diagnosis in California. FTD will be added to California's Neurodegenerative Disease Registry and will require healthcare providers to report every FTD diagnosis to the California Department of Public Health. Advocates say this law will create a clearer picture of the disease's impact for researchers, policymakers and healthcare professionals. The bill received bipartisan support and was introduced by Niello and Ben Allen (D-Santa Monica), and carried in the State Assembly by Assemblymember Jacqui Irwin (D-Thousand Oaks). "SB 1047 was made possible by the determination of the FTD community to make sure this disease could no longer go unseen and uncounted," Niello said. "They brought their experiences, their urgency and their vision to the Capitol, and they never stopped making the case for change. California is stronger when we listen to the people who know these challenges firsthand." FTD is the most common form of dementia for people under age 60; it affects areas of the brain responsible for behavior, communication and movement. Health experts say FTD is different from Alzheimer's disease in that memory is usually preserved. FTD is often misdiagnosed or undetected due to its symptoms overlapping with other neurodegenerative diseases and psychiatric disorders, as well as a historic lack of systematic data tracking. Heming Willis said the lack of official recording of FTD diagnoses throughout the state inspired her to advocate for this legislation; she said current gaps in state reporting of FTD cases has prevented researchers, doctors and policymakers from truly understanding the disease's impact. "It was really a shock to learn that FTD diagnoses weren't being recorded in California. When someone you love is diagnosed with a disease like FTD, you don't want that diagnosis to disappear, you want it to contribute to a treatment or cure," said Heming Willis. "I'm so grateful to the Legislature and Governor for adding FTD to California's registry, because it means our loved ones are seen and counted. Diagnostic data is so important, and this registry gives researchers, doctors, and pharmaceutical companies a strong new tool in the fight against FTD." There are currently no FDA-approved treatments for FTD available, so advocates say the data needed to advance research is more critical than ever. Supporters are hopeful that with the signing of this law, hope is on the horizon for people affected by the disease, especially with California being home to one of the world's leading biotechnology industries. "FTD, and dementia more broadly, touches people and families from every community and every political background. We all have a stake in finding better ways to understand, diagnose, support and ultimately prevent these diseases," says Meghan Buzby, Director of Advocacy and Volunteer Engagement at the Association for Frontotemporal Degeneration (AFTD). "SB 1047's success will benefit not only families living with FTD, but all of us as we work toward a future free of FTD and other forms of dementia." New York was first in the nation to mandate a state-level FTD registry just last year, championed by Sen. Michelle Hinchey (D–Kingston) and supported by AFTD. After SB 1047 is implemented, FTD diagnoses made in California will be collected alongside diagnostic data for Alzheimer's disease, Parkinson's disease, multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS). "This is a historic achievement for the FTD community," says AFTD CEO Rachel Biblow. "To the California advocates who shared their stories and worked tirelessly to make this registry a reality, thank you. Your voices and continued partnership made a difference, and we look forward to amplifying this achievement as we ask other states take this important step."