Alzheimer’s Association Rally in Tally: Advocates Make Florida Shine

By Kaila Garton-Miller

On Feb. 13 and 14, advocates from all over the state will gather in Tallahassee for the Alzheimer’s Association Rally in Tally and Purple Lighting Ceremony. This annual event is where they’ll speak to their legislators to champion critical legislation and funding to support Floridians living with Alzheimer’s and other dementia and their families.

Two of those advocates, Leigh Hebard and Denise Gibson, both know the pain of losing a loved one to Alzheimer’s.

Hebard, traveling from Vero Beach, is a fundraiser and advocate for the Alzheimer’s Association Southeast Florida Chapter. She lost her mother after a nine year battle with the disease.

“Alzheimer’s has been the worst thing that has ever happened to my family. We need to come together to better support all those impacted by this horrific disease and ultimately find a cure,” said Hebard.

Denise Gibson of Bradenton is an advocate for Alzheimer’s Association Florida Gulf Coast Chapter. She watched her family struggle to provide care for her favorite uncle. As a result, she has dedicated her life to working with people with Alzheimer’s disease and their families.

“I’m looking forward to sharing my story and meeting others who are also in the fight against Alzheimer’s,” said Gibson.

The Alzheimer’s Association is advocating for two pieces of legislation for the 2024 Florida Session.

SB 208 and HB 801, Alzheimer’s Disease and Related Dementia Training for Law Enforcement Officers, would create a continuing education course on Alzheimer’s disease and related dementia (ADRD) for law enforcement. Last week the house bill (HB 801) passed its final committee stop in the House and is headed for the House Floor. Senate Bill 208 passed its second committee and has one committee stop left.

SB 964 and HB 885, Coverage for Biomarker Testing, would require appropriate coverage for biomarker testing to support the early detection and diagnosis of Alzheimer’s and other dementia. This legislation would ensure that Floridians can access necessary biomarker testing, reducing the time it takes to receive a diagnosis and enable access to new disease-modifying treatments and care planning. The bill has been amended to only include state insurance plans and Medicaid programs.

“I am particularly excited to support the coverage of biomarker testing. It was incredibly difficult to get a diagnosis for my mother. We wasted a lot of time and Medicare dollars in the process. Collectively, it is imperative that we improve the diagnosis process to improve the quality of care and save money on unnecessary tests before a diagnosis,” said Hebard.

In addition to these important legislative asks, advocates will be asking to continue funding for the statewide Brain Bus program, fund $600,000 to establish a statewide ADRD public awareness campaign, sustain $5 million in funding of the Ed and Ethel Moore Research program, and support the Governor’s Budget Recommendation to increase $6 million in funding for the Alzheimer’s Disease Initiative (ADI) and $5 million for Community Care for the Elderly (CCE).

“I’m supporting the Governor’s Budget Recommendation for critically needed home and community based services. We need more funding for people living in the community who have Alzheimer’s disease or other forms of dementia and their caregivers,” said Gibson.

On the evening of Feb. 13, the Alzheimer’s Association will host the annual Purple Lighting Ceremony. This will take place on the Old Capital’s steps to recognize the estimated 580,000+ Floridians living with Alzheimer’s and their caregivers. Secretary of Elder Affairs Michelle Branham will speak along with several legislative champions and advocates as the the sun goes down and the Capital is lit purple to shine a light for the fight to end Alzheimer’s.

You can watch the Purple Lighting Ceremony live or following the event at alzfla.org/PLC.

For more state legislative updates, subscribe to our 2024 Florida Legislative Session newsletter by texting “FLSession” to 52886.

For more information about advocacy and how to get involved, visit alz.org/advocacy.

Together, we can #ENDALZ.