The Alzheimer's Association and the Alzheimer's Impact Movement (AIM) — a separately incorporated advocacy affiliate of the Association — work tirelessly at the federal, state and local government levels to ensure Alzheimer's issues remain a focus of policymakers. Core to this effort is ensuring that solutions from lawmakers help everyone impacted by this devastating disease to enhance health equity for all.
At the state and federal levels, we are actively working to lift up the voices of people from populations who are disproportionately affected by Alzheimer's and underrepresented in dementia science. A vital step is actively listening to the unique needs of each community. Each year at our AIM Advocacy Forum in Washington, D.C, we invite national partners to join us in organizing for action against Alzheimer's and all other dementia. In 2023, 16 partners were in attendance, demonstrating their interest in our legislative priorities.
Any treatment developed for Alzheimer's needs to work for all communities. But Alzheimer's research has historically underrepresented various racial and ethnic populations — which not only hinders the ability of scientists to understand health disparities, but also limits the likelihood that any approved therapy or diagnostic may aid those communities. To help increase representation in research, we worked with bipartisan congressional champions to draft and introduce the Equity in Neuroscience and Alzheimer's Clinical Trials (ENACT) Act, key provisions of which were signed into law in December 2022.
The ENACT Act will increase underrepresented individuals' participation in Alzheimer's clinical trials by expanding education and outreach to underrepresented communities, reducing the burden of participation and encouraging representation among clinical trial staff. In 2022, Association and AIM staff, volunteers and 15 national partner organizations called on legislators to address this urgent issue. We provided close consultation as the ENACT Act was written, and worked with bipartisan champions to gain support.
To assist public health leaders in preparing all communities for the growing threat of Alzheimer's and other dementia, the Association and the Centers for Disease Control and Prevention (CDC) jointly write and facilitate the implementation of the Healthy Brain Initiative (HBI) Road Map Series, which consists of two books: the HBI State and Local Public Health Partnership to Address Dementia Road Map and the HBI Road Map for Indian Country. These guidebooks lead state, local and tribal public health agencies through actions they can take to quickly and strategically stimulate positive change in their area, with a focus on building health equity and reaching underserved populations.
The Association works with state governments to expand access to resources in underserved communities, with the goal of reducing stigma and increasing early detection and diagnosis of dementia. Two recent state-level successes include:
- Florida's 2022 Ramping up Education of Alzheimer's Disease and Dementia for You (READY) Act, which requires the state's Department of Health to educate physicians and nurses on Alzheimer's detection and risk reduction with a focus on diverse communities at greater risk of developing dementia.
- New Mexico's updated state Alzheimer's plan, which includes a focus on improving respite care in rural, urban and tribal communities.
National Black Caucus of State Legislators
The National Black Caucus of State Legislators (NBCSL) is the nation's premier organization representing and serving the interests of more than 700 African American state legislators. In an effort to advance Alzheimer's policy, the Association has partnered with the NBCSL on many occasions over the last decade, participating in various policy discussions focused on increasing engagement in clinical trials, early detection and diagnosis of Alzheimer's, as well as the need to develop and implement state Alzheimer's plans.
In 2022, the Association partnered with NBCSL to introduce the new stage play "Unforgettable" to hundreds of state legislators from across the nation during NBCSL's 46th Annual Legislative Conference in Las Vegas. The dynamic and emotional play was created by Gdavis Productions and Films, LLC, and the Association to showcase the effects of caring for a loved one living with Alzheimer's, as well as the importance of understanding early detection and participating in clinical trials. The NBCSL conference presentation of "Unforgettable" provided a unique opportunity for state policymakers to connect with the impact of Alzheimer's on individuals and families in a real and personal way — and at an opportune time just before they began their legislative sessions in the new year.
Recognizing that older Black Americans are twice as likely to be living with Alzheimer's or other dementias as older White Americans, it is critical that we work with NBCSL members to implement timely policy solutions.
"Data tells us that the overall chance of a person getting Alzheimer's disease is more than 1 in 10, but it's even more likely if you're Black," said Paula Hoisington, CEO of NBCSL. "The NBCSL is partnering with the Alzheimer's Association to bring awareness of this dreadful disease and educate our members on valuable resources available to the communities they serve."