Made with FlowPaper - Flipbook Maker
< Previous10 ENGAGING ELECTED OFFICIALS 10 TIPS AND TRICKS: MEETINGS WITH ELECTED OFFICIALS 1 COORDINATE, COORDINATE, COORDINATE Before the meeting, plan with your team on who will open the meeting, who will make introductions, who will make the asks, etc. 2 BE PREPARED For in-person meetings, make sure you’ve packed everything you need! Do you have any fact sheets or member materials you may need for the meeting? Information sheets on each of our legislative priorities can be found at portal.alzimpact.org/ advocacy/resources. 3 SHOW UP EARLY As the saying goes, early is on time. If you are in-person, make sure to arrive 10-15 minutes early as you may have to go through security depending on the building. 4 LIMIT DISTRACTIONS Try to limit any distractions before the meeting. Make sure to silence your phone and turn off any alerts before the meeting starts. 5 SHARE YOUR STORY The most important part of this meeting is you — your voice and your story are incredibly important. Try to tie your personal story to the asks. Personalizing our legislative priorities can help policymakers connect to our cause. 6 BE PASSIONATE AND BE KIND Your passion is what sets you apart from the dozens of other meetings an office will have throughout the day. Don’t be afraid to stand out and be you. Showing your appreciation and saying “thank you” goes a really long way. Saying a few kind words throughout the meeting can make an impact and change the tone of the whole meeting. 7 SHOW YOUR SMILE Don’t forget to smile! As an organization, we always aim to be positive and make a good impression during our meetings. 8 DRESS TO IMPRESS For in-person meetings business casual is appropriate, and purple or other ways to represent the Alzheimer’s Association is always encouraged. 9 POST AND SHARE Before you leave the meeting, ask the group if you can take a group photo/screenshot for social media. Make sure to tag the elected official and use #ENDALZ to connect the meeting to our community online. 10 FOLLOW UP After the meeting, make sure to tell us how it went at portal. alzimpact.org/advocacy/report. Let us know if Association staff need to follow up with the elected official and their staff.11 ENGAGING ELECTED OFFICIALS CONGRESSIONAL MEETING CHECKLIST BEFORE THE MEETING »Work with your local public policy staff to assign roles for each meeting, with the Ambassador as lead, where appropriate. » Confirm you have the meeting information on hand. If it’s in-person, do you have the address and know where to go? »Who is responsible for sending materials prior to the meeting? This is typically done by the Ambassador or local public policy staff, but it’s a good idea to check beforehand. »Check out the latest information about our federal priorities on alzimpact.org. »Wear purple and make sure you have all of the materials you need! AT THE MEETING »Identify the lead advocate who will handle introductions. Who we are, why we’re here, etc. »Who will open the meeting and discuss the impacts of Alzheimer’s and dementia on the member’s constituency? » Who is going to tell their story and show how it relates to the first issue? » Who is going to make the first “ask”? » Who is going to tell their story and show how it relates to the second issue? »Who, if applicable, is going to make the additional ask(s)? »Who is going to conclude the meeting and ask for a screenshot/photo of the group? AFTER THE MEETING »Who will post the photo from the meeting to Twitter/X and Facebook? » Who will submit the meeting report to alzimpact.org? » Who will follow up with the legislative office? Below are some suggested ways to successfully plan a group meeting with elected officials. 12 2024 ISSUES AND PRIORITIES Alzheimer’s and other dementia are a growing crisis for our families and the economy. The federal government must address the challenges the disease poses and take bold action to confront this crisis now. CONTINUE TO PRIORITIZE ADDRESSING ALZHEIMER’S AND OTHER DEMENTIA Prior to 2011, there was no cohesive national plan in the United States to address one of the country’s most deadly diseases: Alzheimer’s. The Alzheimer’s Association and AIM recognized this shortcoming and began building a framework for a national plan that could change the trajectory of this devastating and fatal disease. Working with bipartisan leaders in Congress, the Alzheimer’s Association and AIM developed the National Alzheimer’s Project Act (NAPA) (P.L. 111-375), landmark legislation enacted into law in 2011 that required the creation of a National Plan to Address Alzheimer’s Disease to address the escalating Alzheimer’s crisis. Once NAPA was enacted, the Alzheimer’s Association and AIM moved to develop and secure enactment of the Alzheimer’s Accountability Act (AAA) to ensure Congress hears directly from the scientists at the National Institutes of Health (NIH) on how much research funding is needed to fully pursue scientific opportunities needed to prevent and effectively treat Alzheimer’s and other dementia. »The bipartisan NAPA Reauthorization Act (S. 133 / H.R. 619) will extend NAPA to build on the progress made in the fight against Alzheimer’s and other dementia. The bill emphasizes the importance of healthy aging and risk reduction for Alzheimer’s disease to reflect the new sixth goal of the National Plan. The legislation also adds new federal representatives to the NAPA Advisory Council from the Department of Justice, Federal Emergency Management Agency, and Social Security Administration. Additionally, the NAPA Reauthorization Act underscores and seeks to help address health disparities among underrepresented populations. » The bipartisan Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620) would continue the requirement for the NIH to submit an annual Professional Judgment Budget to Congress, ensuring members of Congress hear directly from scientists on what they will need to meet the nation’s goal and equipping Congress with the best information to determine necessary dementia research funding levels each year. STRENGTHEN THE DEMENTIA PUBLIC HEALTH INFRASTRUCTURE Since the passage of the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (P.L.115-406) in 2018, public health departments have been creating and growing a public health infrastructure for dementia in communities throughout the nation. Because of BOLD, the Centers for Disease Control and Prevention (CDC) is able to provide funding to state, local and tribal public health departments. These departments utilize the funding to implement effective dementia interventions such as reducing risk, increasing early detection and diagnosis, and supporting the needs of caregivers. The bipartisan BOLD Infrastructure for Alzheimer’s Reauthorization Act (S. 3775 / H.R. 7218) will strengthen the dementia public health infrastructure in communities throughout the nation by reauthorizing BOLD. 2024 FEDERAL POLICY PRIORITIES13 2024 ISSUES AND PRIORITIES INCREASE THE COMMITMENT TO DEMENTIA RESEARCH AND PUBLIC HEALTH RESPONSE Nearly 7 million Americans are living with Alzheimer’s, and by mid-century, the number of people with the disease is set to nearly triple. Costs are estimated to reach $360 billion in 2024, with nearly two-thirds paid by Medicare and Medicaid. These costs are projected to rise to nearly $1 trillion by mid-century. »Consistent with the National Plan to Address Alzheimer’s Disease and the Alzheimer’s Professional Judgment Budgets, Congress has bolstered support for research funding at the NIH. Nevertheless, current funding levels continue to fall short of the total funding scientists and the U.S. Advisory Council on Alzheimer’s Research, Care, and Services believe is needed to meet the goal of finding a treatment or cure for Alzheimer’s and other dementia. Congress must continue its commitment to the fight against Alzheimer’s and other dementia by increasing funding for Alzheimer’s research by an additional $318 million in FY25. » Since BOLD was signed into law in 2018, the CDC has made 66 awards to 45 state, local and tribal health departments. Congress should appropriate $35 million for FY25 BOLD implementation in order to have the meaningful impact that Congress intended and address Alzheimer’s and other dementia as a growing public health crisis. ADVANCE DEMENTIA WORKFORCE PREPAREDNESS Today, only half of those living with Alzheimer’s disease are diagnosed, and of those, only half are told of their diagnosis. In 85% of cases, the initial diagnosis of Alzheimer’s is made by primary care providers. But because they are not dementia specialists, most report they do not feel prepared to provide care for those diagnosed. Too often, overburdened primary care providers are unable to access the latest patient-centered dementia training. Through the use of Project ECHO, the Accelerating Access to Dementia and Alzheimer’s Provider Training (AADAPT) Act (H.R. 7688 / S. ) would provide virtual Alzheimer’s and dementia education and training to more primary care providers to better understand detection, diagnosis, care, and treatment of Alzheimer’s and other forms of dementia. Dementia ECHO programs connect dementia care experts with primary care providers using free, remote continuing education. ECHO’s video-conference based program reaches rural and medically underserved areas where PCPs are especially strained. The AADAPT Act would expand the current ECHO program to provide grants specifically for Alzheimer’s and dementia to address the knowledge gaps and workforce capacity issues primary care providers face. Alzheimer’s and other dementia are a growing crisis for our families and the economy. The federal government must address the challenges the disease poses and take bold action to confront this crisis now. 2024 FEDERAL POLICY PRIORITIES14 2024 ISSUES AND PRIORITIES What is the National Plan to Address Alzheimer’s Disease? • The National Alzheimer’s Project Act (NAPA) (P.L. 111-375), unanimously approved by Congress in 2010 and signed into law in 2011, required the Department of Health and Human Services (HHS) to create a national strategic plan to address the Alzheimer’s crisis and to update it annually. The first National Plan to Address Alzheimer’s Disease was released in 2012. • In 2021, a new national goal on dementia risk reduction was added to the National Plan, the first new goal since 2012. The National Plan now has six overarching goals: oPrevent and effectively treat Alzheimer’s disease by 2025; o Enhance care quality and efficiency; oExpand supports for people with Alzheimer’s disease and their families; oEnhance public awareness and engagement; o Improve data to track progress; o Accelerate action to promote healthy aging and reduce risk factors for Alzheimer’s disease and related dementias. NAPA Reauthorization Act & Alzheimer’s Accountability and Investment Act MARCH 2024 alzimpact.org FACTSHEET To reach the treatment goal, the National Institutes of Health has established more than 200 research milestones, including on drug development, biomarkers, and clinical trial recruitment. Alzheimer’s Research Milestones What does the Plan include to advance Alzheimer’s research? • The National Institutes of Health (NIH) has held annual dementia research summits since 2012 to help identify research priorities. The most recent summit, which focused on care and support research, was held in March 2023. • Between reprogramming of funds by the Administration and additional funds provided by Congress, NIH research funding for Alzheimer’s disease increased 650% from 2013-2023. • The Plan calls for coordinating research efforts with international public and private entities. The G8 nations held a dementia summit in 2013 and the World Health Organization approved a global action plan on dementia in 2017. How does the Plan improve care and support for those living with the disease? • The Centers for Medicare & Medicaid Services approved a billing code — CPT ® code 99483 — to reimburse clinicians who provide comprehensive assessment and care planning to those with a cognitive impairment. • The Health Resources and Services Administration developed a uniform curriculum on Alzheimer’s to ensure the workforce has the necessary skills to provide high-quality dementia care. • Recent updates to the Plan include action items on better understanding health disparities and expanding access to care planning tools. What is the National Plan to Address Alzheimer’s Disease? • The National Alzheimer’s Project Act (NAPA) (P.L. 111-375), unanimously approved by Congress in 2010 and signed into law in 2011, required the Department of Health and Human Services (HHS) to create a national strategic plan to address the Alzheimer’s crisis and to update it annually. The first National Plan to Address Alzheimer’s Disease was released in 2012. • In 2021, a new national goal on dementia risk reduction was added to the National Plan, the first new goal since 2012. The National Plan now has six overarching goals: o Prevent and effectively treat Alzheimer’s disease by 2025; oEnhance care quality and efficiency; o Expand supports for people with Alzheimer’s disease and their families; o Enhance public awareness and engagement; oImprove data to track progress; oAccelerate action to promote healthy aging and reduce risk factors for Alzheimer’s disease and related dementias. NAPA Reauthorization Act & Alzheimer’s Accountability and Investment Act MARCH 2024 alzimpact.org FACTSHEET To reach the treatment goal, the National Institutes of Health has established more than 200 research milestones, including on drug development, biomarkers, and clinical trial recruitment. Alzheimer’s Research Milestones What does the Plan include to advance Alzheimer’s research? • The National Institutes of Health (NIH) has held annual dementia research summits since 2012 to help identify research priorities. The most recent summit, which focused on care and support research, was held in March 2023. • Between reprogramming of funds by the Administration and additional funds provided by Congress, NIH research funding for Alzheimer’s disease increased 650% from 2013-2023. • The Plan calls for coordinating research efforts with international public and private entities. The G8 nations held a dementia summit in 2013 and the World Health Organization approved a global action plan on dementia in 2017. How does the Plan improve care and support for those living with the disease? • The Centers for Medicare & Medicaid Services approved a billing code — CPT ® code 99483 — to reimburse clinicians who provide comprehensive assessment and care planning to those with a cognitive impairment. • The Health Resources and Services Administration developed a uniform curriculum on Alzheimer’s to ensure the workforce has the necessary skills to provide high-quality dementia care. • Recent updates to the Plan include action items on better understanding health disparities and expanding access to care planning tools.15 2024 ISSUES AND PRIORITIES What is the NAPA Reauthorization Act (S. 133 / H.R. 619)? • NAPA is set to expire in 2025. The NAPA Reauthorization Act will continue the work of the National Plan through 2035. • In addition, the legislation: o Adds new federal representatives to the NAPA Advisory Council from the Department of Justice, the Social Security Administration, and the Federal Emergency Management Agency; oRequires that the National Plan include recommendations on reducing disparities among underrepresented populations; oEnsures that NAPA includes efforts to promote healthy aging and risk reduction, consistent with the new goal. What is the Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620)? • In 2024, caring for people with Alzheimer’s will cost Medicare and Medicaid an estimated $231 billion. This represents close to 1 in every 6 dollars Medicare spends. And these costs are only projected to increase through 2050, when nearly 1 in every 3 Medicare dollars will be spent on someone with Alzheimer’s. • Given this enormous financial burden on government budgets, a commitment to Alzheimer’s research today will yield savings tomorrow. • The Alzheimer’s Accountability and Investment Act would maintain the Alzheimer’s Bypass Budget process. This will ensure that Congress continues to hear how much funding is needed to fully pursue scientific opportunities to prevent and effectively treat Alzheimer’s. What is the Alzheimer’s Bypass Budget? • The bipartisan Alzheimer’s Accountability Act (P.L. 113-235) became law as part of the fiscal year 2015 omnibus appropriations bill. • The law requires the scientists at the National Institutes of Health (NIH) to submit an annual Alzheimer’s research budget proposal directly to Congress, thus bypassing the usual bureaucratic budget procedures. • This professional judgment budget — also known as the Alzheimer’s Bypass Budget — specifies the resources that scientists need to reach the National Alzheimer’s Plan goal of preventing and effectively treating Alzheimer’s disease. • The NIH released the most recent Alzheimer’s Bypass Budget in July 2023. The National Alzheimer’s Project Act (Public Law 111-375) created an Advisory Council on Alzheimer’s Research, Care, and Services to assist in the development and evaluation of the National Plan. The Council is comprised of representatives of 11 federal agencies and 12 individuals from outside the federal government. The Council is currently chaired by Adrienne Mims, the Chief Medical Officer at Rainmaker Strategic Solutions. Each year, the Advisory Council makes recommendations to Congress and the Secretary of Health and Human Services in the areas of clinical care, long term care and supports, research, and risk reduction. The most recent recommendations were unanimously adopted by the non-federal members of the Advisory Council in July 2023. Advisory Council on Alzheimer’s Research, Care, and Services What is the NAPA Reauthorization Act (S. 133 / H.R. 619)? • NAPA is set to expire in 2025. The NAPA Reauthorization Act will continue the work of the National Plan through 2035. • In addition, the legislation: o Adds new federal representatives to the NAPA Advisory Council from the Department of Justice, the Social Security Administration, and the Federal Emergency Management Agency; oRequires that the National Plan include recommendations on reducing disparities among underrepresented populations; oEnsures that NAPA includes efforts to promote healthy aging and risk reduction, consistent with the new goal. What is the Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620)? • In 2024, caring for people with Alzheimer’s will cost Medicare and Medicaid an estimated $231 billion. This represents close to 1 in every 6 dollars Medicare spends. And these costs are only projected to increase through 2050, when nearly 1 in every 3 Medicare dollars will be spent on someone with Alzheimer’s. • Given this enormous financial burden on government budgets, a commitment to Alzheimer’s research today will yield savings tomorrow. • The Alzheimer’s Accountability and Investment Act would maintain the Alzheimer’s Bypass Budget process. This will ensure that Congress continues to hear how much funding is needed to fully pursue scientific opportunities to prevent and effectively treat Alzheimer’s. alzimpact.orgalz.org ® What is the Alzheimer’s Bypass Budget? • The bipartisan Alzheimer’s Accountability Act (P.L. 113-235) became law as part of the fiscal year 2015 omnibus appropriations bill. • The law requires the scientists at the National Institutes of Health (NIH) to submit an annual Alzheimer’s research budget proposal directly to Congress, thus bypassing the usual bureaucratic budget procedures. • This professional judgment budget — also known as the Alzheimer’s Bypass Budget — specifies the resources that scientists need to reach the National Alzheimer’s Plan goal of preventing and effectively treating Alzheimer’s disease. • The NIH released the most recent Alzheimer’s Bypass Budget in July 2023. The National Alzheimer’s Project Act (Public Law 111-375) created an Advisory Council on Alzheimer’s Research, Care, and Services to assist in the development and evaluation of the National Plan. The Council is comprised of representatives of 11 federal agencies and 12 individuals from outside the federal government. The Council is currently chaired by Adrienne Mims, the Chief Medical Officer at Rainmaker Strategic Solutions. Each year, the Advisory Council makes recommendations to Congress and the Secretary of Health and Human Services in the areas of clinical care, long term care and supports, research, and risk reduction. The most recent recommendations were unanimously adopted by the non-federal members of the Advisory Council in July 2023. Advisory Council on Alzheimer’s Research, Care, and Services16 2024 ISSUES AND PRIORITIES ASK Please cosponsor the NAPA Reauthorization Act (S. 133/H.R. 619) and the Alzheimer’s Accountability and Investment Act (S. 134/H.R. 620), which will extend NAPA and the Alzheimer’s Accountability Act to ensure that the nation continues to address Alzheimer’s and dementia as a priority. BACKGROUND Prior to 2011, there was no cohesive national plan in the United States to address one of the country’s most deadly diseases: Alzheimer’s. Working with bipartisan leaders in Congress, the Alzheimer’s Association and AIM developed the National Alzheimer’s Project Act (NAPA), which required the creation of a national plan to change the trajectory of this devastating and fatal disease. Through countless hours of meetings with lawmakers in Washington, D.C., and across the country, and other advocacy efforts aimed at growing support for NAPA, this landmark legislation became law (P.L. 111-375), resulting in the first National Plan to Address Alzheimer's Disease (The National Plan) with a goal of preventing and effectively treating Alzheimer’s by 2025. Following the passage of NAPA, the Alzheimer’s Association hosted hundreds of community events to obtain and provide input to the federal government for the Plan. The first-ever National Alzheimer’s Plan was released 12 years ago in 2012, which focuses on goals to promote rapid research on Alzheimer’s disease and other dementia and improve the delivery of clinical care and services for individuals and their families. The National Plan is updated annually to reflect advances and developments in the field of Alzheimer’s and other dementia. NAPA also directed the Department of Health and Human Services (HHS) to create the Advisory Council on Alzheimer’s Research, Care, and Services, which includes a combination of federal agency representatives and non-federal members to oversee the implementation of the National Plan. The Advisory Council released the first National Plan in 2012 and the most recent update in December 2021. The Alzheimer’s Association has also been a steady and active member of the Advisory Council with Joanne Pike, DrPH, Alzheimer’s Association president and CEO currently serving. The National Plan originally contained five goals: prevent and effectively treat Alzheimer’s disease by 2025; optimize care quality and efficiency; expand support for people with Alzheimer’s disease and their families; enhance public awareness and engagement; and track progress and drive improvement. In 2021, the Advisory Council added a sixth goal: Accelerate Action to Promote Healthy Aging and Reduce Risk Factors for Alzheimer’s Disease and Related Dementias. With so many competing demands of the federal government and its agency representatives, we are fortunate to have two laws that require a specific and coordinated focus on resources dedicated to this crisis. Both NAPA and the Alzheimer’s Accountability Act (AAA) are set to expire in 2025, and Congress must pass legislation to ensure the goals set by the National Plan can be achieved. While the National Plan has driven enormous progress in research, NAPA REAUTHORIZATION ACT AND ALZHEIMER’S ACCOUNTABILITY AND INVESTMENT ACT BACKGROUND AND CONGRESSIONAL TALKING POINTS17 2024 ISSUES AND PRIORITIES clinical and long-term care, and public awareness, there is still much work to be done. THE NAPA REAUTHORIZATION ACT (S. 133/H.R. 619) NAPA was the catalyst for progress in the Alzheimer’s and dementia federal programs and with so many competing demands of the federal government and its agency representatives, we are fortunate to have a law that requires a specific and coordinated focus on and resources dedicated to this disease. The original law will expire in 2025, and the NAPA Reauthorization Act (S. 133 / H.R. 619) would extend the law until 2035. It will also include: » the addition of new federal representatives to the Advisory Council including from the Department of Justice (DoJ), the Federal Emergency Management Agency (FEMA), and the Social Security Administration (SSA); »language to help address health disparities among underrepresented populations; » language about healthy aging and risk reduction for Alzheimer’s disease to reflect the new sixth goal of the National Plan. The Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) strongly support the bipartisan NAPA Reauthorization Act, which was introduced by Senators Susan Collins (R-ME), Mark Warner (D-VA), Shelley Moore Capito (R-WV), Ed Markey (D-MA), Jerry Moran (R-KS), Bob Menendez (D-NJ), Lisa Murkowski (R-AK) and Debbie Stabenow (D-MI) in the Senate and Representatives Paul Tonko (D-NY-20), Chris Smith (R-NJ-04) and Maxine Waters (D-CA-43) in the House of Representatives. THE NAPA REAUTHORIZATION ACT TALKING POINTS »NAPA has led to great achievements in the treatment and research of Alzheimer’s disease, and reauthorizing NAPA through the NAPA Reauthorization Act will ensure the nation will continue addressing Alzheimer’s as a priority and continue the great work of the Advisory Council and provide continuity for the community. »As a result of NAPA, Alzheimer’s research funding has increased sevenfold at the NIH. Additionally, a new public health infrastructure has been established at the CDC. However, this work must continue. » As the current NAPA authorization is set to expire in 2025, the NAPA Reauthorization Act will extend the National Alzheimer’s Project Act to 2035. »The NAPA Reauthorization Act is bipartisan in the House of Representatives and the Senate. THE ALZHEIMER’S ACCOUNTABILITY AND INVESTMENT ACT (AAIA) (S. 134/H.R. 620) The Alzheimer’s Accountability Act ensures Congress hears directly from the scientists at the National Institutes of Health (NIH) on how much research funding is needed to meet the first goal of preventing and effectively treating Alzheimer’s by 2025. The Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620) would extend to 2035 the requirement for NIH to submit a professional judgment budget (PJB) to Congress describing the annual funds needed to make progress against Alzheimer’s disease. NAPA REAUTHORIZATION ACT AND ALZHEIMER’S ACCOUNTABILITY AND INVESTMENT ACT BACKGROUND AND CONGRESSIONAL TALKING POINTS18 2024 ISSUES AND PRIORITIES The Alzheimer’s Association and AIM strongly support the bipartisan Alzheimer’s Accountability and Investment Act, which was introduced by Senators Susan Collins (R-ME), Ed Markey (D-MA), Shelley Moore Capito (R-WV), Mark Warner (D-VA), Jerry Moran (R-KS), Bob Menendez (D-NJ), Lisa Murkowski (R-AK), and Debbie Stabenow (D-MI) in the Senate, and Representatives Chris Smith (R-NJ-04), Paul Tonko (D-NY-20) and Maxine Waters (D-CA-43) in the House of Representatives. THE AAIA TALKING POINTS » The Alzheimer’s Accountability Act has allowed Congress to hear directly from the scientists at NIH on how much research funding is needed to fully pursue scientific opportunities to prevent and effectively treat Alzheimer’s. Today, funding for Alzheimer’s and other dementia research at the NIH is more than $3.8 billion annually. » The current Alzheimer’s Accountability Act sunsets the requirement for NIH to submit a professional judgment budget to Congress in 2025. The AAIA would extend the requirement to 2035. » AAIA is bipartisan in both the House of Representatives and the Senate. OTHER RELATED FAQS Q. Why are these bills timely, and why do we need another law? The current NAPA authorization and Alzheimer’s Accountability Act are set to expire in 2025. These bills will continue the great work of the Advisory Council and provide continuity and funding for the community by extending the law through 2035. The timely passage of these bills would ensure the Department of Health and Human Services (HHS) has the certainty and stability to continue both immediate and long-term planning for a nationwide approach to Alzheimer’s and other dementia. Q. Have any changes been made to either of these bills since the last introduction? Minor, technical changes were made to both bills to reflect input the Congressional sponsors received from the Department of Health and Human Services. Q. How much would these bills cost? The bills have not been scored by the Congressional Budget Office (CBO) and there is no cost estimate for them. However, the Alzheimer’s Association and AIM will continue to work with the sponsors to determine the impact it would have on federal spending. NOTE: If your Member of Congress or their staff asks you a question you do not know the answer to, do not feel any pressure to provide an answer. Simply ask them to contact a member of the Alzheimer’s Association’s Federal Affairs Team at 202.638.8676. Also indicate the interaction at alzimpact.org so a member of the Federal Affairs team can follow up with that office. NAPA REAUTHORIZATION ACT AND ALZHEIMER’S ACCOUNTABILITY AND INVESTMENT ACT BACKGROUND AND CONGRESSIONAL TALKING POINTS19 2024 ISSUES AND PRIORITIES Alzheimer’s and other dementias are an urgent public health issue. • Nearly 7 million seniors in America are currently living with Alzheimer’s. The total cost of their care is projected to total $360 billion in 2024 — making it one of the most expensive diseases in America. • The burden is only growing larger. The number of people living with Alzheimer’s is projected to reach 12.7 million in 2050, and the costs are expected to rise to nearly $1 trillion. There are several ways the public health community can address the crisis. • Primary Prevention: Healthy living can reduce the risk of cognitive decline and may reduce the risk of dementia. Public health can integrate brain health messages into existing, relevant public health campaigns. • Early Detection and Diagnosis: Public health can undertake public awareness campaigns to promote early detection and diagnosis and can educate medical professionals about assessment tools. • Data Collection: States can collect data on cognitive decline and Alzheimer’s caregiving using tools such as the Behavioral Risk Factor Surveillance System (BRFSS). • Access to Care and Services: Public health can encourage health professionals to follow evidence- based clinical care guidelines, create tools to aid in care delivery, and report on quality care practices. BOLD Reauthorization Act Congress passed the BOLD Infrastructure for Alzheimer’s Act (P.L. 115-406) to create a nationwide public health infrastructure to address dementia. • In 2018, the bipartisan BOLD Act was unanimously approved by the Senate and passed in the House of Representatives by a vote of 361-3. • Since its enactment, the Centers for Disease Control and Prevention (CDC) has: oFunded three Alzheimer’s Public Health Centers of Excellence to expand and promote innovative and effective Alzheimer’s interventions. o Provided 66 awards to 45 state, local, and tribal public health departments to implement interventions, including those in the Public Health Road Map. oIncreased the analysis and reporting of data on cognitive decline and caregiving to inform future public health actions. The BOLD Reauthorization Act (S. 3775 / H.R. 7218) is needed to continue to expand the public health work on Alzheimer’s. • The BOLD Reauthorization Act would extend the law though 2029. • It would authorize $33 million in annual funding through the CDC. MARCH 2024 alzimpact.org FACTSHEET What is the National Plan to Address Alzheimer’s Disease? • The National Alzheimer’s Project Act (NAPA) (P.L. 111-375), unanimously approved by Congress in 2010 and signed into law in 2011, required the Department of Health and Human Services (HHS) to create a national strategic plan to address the Alzheimer’s crisis and to update it annually. The first National Plan to Address Alzheimer’s Disease was released in 2012. • In 2021, a new national goal on dementia risk reduction was added to the National Plan, the first new goal since 2012. The National Plan now has six overarching goals: oPrevent and effectively treat Alzheimer’s disease by 2025; oEnhance care quality and efficiency; oExpand supports for people with Alzheimer’s disease and their families; oEnhance public awareness and engagement; o Improve data to track progress; oAccelerate action to promote healthy aging and reduce risk factors for Alzheimer’s disease and related dementias. NAPA Reauthorization Act & Alzheimer’s Accountability and Investment Act MARCH 2024 alzimpact.org FACTSHEET To reach the treatment goal, the National Institutes of Health has established more than 200 research milestones, including on drug development, biomarkers, and clinical trial recruitment. Alzheimer’s Research Milestones What does the Plan include to advance Alzheimer’s research? • The National Institutes of Health (NIH) has held annual dementia research summits since 2012 to help identify research priorities. The most recent summit, which focused on care and support research, was held in March 2023. • Between reprogramming of funds by the Administration and additional funds provided by Congress, NIH research funding for Alzheimer’s disease increased 650% from 2013-2023. • The Plan calls for coordinating research efforts with international public and private entities. The G8 nations held a dementia summit in 2013 and the World Health Organization approved a global action plan on dementia in 2017. How does the Plan improve care and support for those living with the disease? • The Centers for Medicare & Medicaid Services approved a billing code — CPT ® code 99483 — to reimburse clinicians who provide comprehensive assessment and care planning to those with a cognitive impairment. • The Health Resources and Services Administration developed a uniform curriculum on Alzheimer’s to ensure the workforce has the necessary skills to provide high-quality dementia care. • Recent updates to the Plan include action items on better understanding health disparities and expanding access to care planning tools.Next >