This spring has ushered in an incredibly busy and successful time for the advocates across North Carolina who have been hard at work on state and federal levels to bolster policy priorities and access for Alzheimer’s disease and related dementias from a public health perspective. Their efforts included our State Advocacy Day, Advocacy Engagement Week and the federal AIM Advocacy Forum.
On March 15, 2023 dozens of advocates from across North Carolina gathered in Raleigh for our NC State Advocacy Day. The day is designed to move legislators to action on Alzheimer’s and dementia policy that will improve the lives of North Carolina families impacted by the growing burden of Alzheimer’s. This year, advocates gathered at the North Carolina Museum of History for an update on state policy needs and the opportunity to hear from Heather Carter, the State Alzheimer’s Coordinator from the NC Division of Aging.
From there, advocates proceeded to the North Carolina legislative complex to urge North Carolina legislators to continue to improve the NC Dementia Capable State Alzheimer’s Plan with a new bill that would codify the plan and provide needed structure. This bill is sponsored by Representative Diane Wheatley (District 43), and is currently in draft with the legal division at the State Legislative complex.
The other major request that advocates had was to continue to include brain health messaging in all relevant public health campaigns being done within the NC Division of Public Health and the NC Division of Aging. Our advocates were able to secure a bill sponsor, Representative Julie von Haefen (District 36), who has also submitted a bill to legislative drafting.
We are very excited to see these two bills emerge in the coming days, and we will be engaging with advocates on how they can support these bills through the legislative process, as we move towards both becoming law.
To marry state and federal efforts, North Carolina also held an Advocacy Engagement Week from March 12-18. During that week, advocates across North Carolina came together to raise their voices for key federal and state Alzheimer’s priorities. There were 240 advocates who took action resulting in 885 messages delivered to legislators, 242 tweets tagging representatives and over 50 meetings with legislators held on NC State Advocacy Day.
The week following, on March 19 – 21, 24 advocates from across North Carolina were selected to travel to the Nation’s capitol to ask for Congressional support for key policies during the 2023 Alzheimer’s Impact Movement Advocacy Forum.
The week brought together nearly 900 advocates from all 50 states on Washington, D.C. to make their voices heard and drive the success of the Alzheimer’s Association and Alzheimer’s Impact Movements’ federal priorities, including access to FDA-approved Alzheimer’s treatments.
As the era of treatments brings hope to many, it has also been challenging for thousands living with Alzheimer’s disease as the Centers for Medicare and Medicaid Services (CMS) continues to refuse coverage for Alzheimer’s treatments. As 2,000 people a day transition past the point they would be eligible to receive treatments, advocates came together to use their voice & purple presence in D.C. to show the critical importance of CMS covering Alzheimer’s treatments. For the first time ever, advocates rallied outside the White House to urge the Biden Administration to change its misguided decision to block access to FDA-approved Alzheimer’s treatments. Watch highlights of the Rally for Access here.
In addition to the Rally for Access, North Carolina advocates met with members of Congress to ensure bipartisan support for the NAPA Reauthorization Act, the Alzheimer’s Accountability and Investment Act, the Comprehensive Care for Alzheimer’s Act, and funding of an additional $321 million for Alzheimer’s research at the National Institutes of Health (NIH) and $35 million for implementation of the BOLD Act at the Centers for Disease Control and Prevention (CDC).
At the Advocacy Forum, North Carolina advocate Jay Reinstein was named the 2023 Advocate of the Year. Jay was recognized for more than five years of involvement and leadership with the Alzheimer’s Association in North Carolina and nationally. The AIM Advocate of the Year award is given to the top advocate in the country based on their engagement with members of Congress and their dedication to the cause. Congratulations to Jay for this incredible accomplishment.
We are incredibly grateful to our dedicated volunteers for advocating for these bipartisan priorities to help improve the lives of those impacted by Alzheimer’s nationwide. You can support their efforts by taking action today!
Check out this TV interview that Forum advocate Susan Spivock Smith, from Emerald Island did upon her return from D.C. to share her experience.
ADVOCATES IN ACTION
2023 NC State Advocacy Day
2023 AIM Advocacy Forum
Alzheimer’s disease is one of the most critical public health issues in America. This is why we are unrelentingly advocating for public policies that increase critical research funding and support all those affected. Now is the time to join us.
There have been great strides in policy, but there is still much work to be done. To continue gaining support for our policies, volunteer advocates will continue to share their stories with their elected officials in the coming months. Interested in learning more about our advocacy program at either the state or federal level?
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