ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement

 
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
2021
ADVOCATES
GUIDE
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
WELCOME

Dear Alzheimer’s Advocate,

Thank you for your continued          secured a seven-fold increase       BUT WE KNOW,
commitment in the fight to End        in Alzheimer’s and dementia         MORE WORK REMAINS.
Alzheimer’s and all other dementia.   research funding at the National
                                      Institutes of Health (NIH),         In this Advocates Guide, you’ll
2020 was truly unprecedented          the BOLD Infrastructure for         find everything you need to
and our community faced many          Alzheimer’s Act, improved access    make the most of your year
challenges. Yet, because of your      to care and support for people      around advocacy efforts,
perseverance and willingness          living with dementia regardless     including detailed information
to adapt your advocacy, we            of their age, grew support for      about our policy priorities, and
secured tremendous public policy      the decision by Medicare to         tips and resources on how to
advancements at the federal and       cover care planning, and so much    successfully connect with elected
state level. From your homes          more. We’ve also worked with        officials. We’ll be updating this
across the country you remained       state governments to develop        guide throughout the year as our
engaged with policymakers in          state Alzheimer’s plans and         policy priorities are introduced in
Congress, in state capitals and       advance public health initiatives   Congress. And, be sure to follow
on the campaign trail.                at the state and local level.       our social media accounts and
                                                                          use #ENDALZ to continue the
This year marks the 10 year           After so many successes, it’s       conversation online.
anniversary of the National           easy to think these victories are
Alzheimer’s Project Act               commonplace — but they’re not.      Working together we’re
(NAPA) being signed into law.                                             confident 2021 will be another
This landmark legislation has         They’re because of each one         remarkable year for Alzheimer’s
been a catalyst for changing          of you. Your work is the reason     and dementia advocacy. Thank
the way our nation addresses          progress is happening on Capitol    you for joining us in the fight.
Alzheimer’s. Since NAPA became        Hill and across the nation.
law, and with the release of the      Thank you.                          Sincerely,
first National Plan to Address                                            The Alzheimer’s Association
Alzheimer’s Disease, we have                                              AIM Public Policy Team
                                                                                       GETTING STARTED          2
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
TABLE OF CONTENTS

GET TING STARTED                   2021 ISSUES AND PRIORITIES
2021 Alzheimer’s Disease           2021 Federal Policy Priorities		                               12
Facts and Figures Infographic 4    Comprehensive Care for Alzheimer's Act Fact Sheet              14

2021 Alzheimer’s Facts             Comprehensive Care for Alzheimer's Act Background
and Figures Fact Sheet        5    and Talking Points		                                           15
                                   ENACT Act Fact Sheet		                                         17
NAPA 10th
                                   ENACT Act Background and Talking Points                        19
Anniversary Timeline          7
                                   Fiscal Year 2022 Alzheimer’s Research Funding Fact Sheet       24
                                   Increase the Commitment to Alzheimer’s Research Funding
ENGAGING                           Background and Talking Points 		                               25
ELECTED OFFICIALS                  BOLD Infrastructure for Alzheimer’s Act Fact Sheet             29
Tipsheet: Spark Social             Increase the Commitment to Alzheimer’s Public Health
Media Conversations           8    Response Background and Talking Points                         30
                                   Alzheimer’s Caregiver Support Act Fact Sheet                   33
Legislative Meeting Tips     10
                                   Alzheimer’s Caregiver Support Act Background and Talking Points 34
Legislative Meeting Checklist 11   2021 Public Health Priorities                                  37
                                   2021 State Policy Priorities                                   38
                                   State Advocacy 101		                                           39

                                   NEXT STEPS
                                   Ways to Say Thank You                                          40
                                   Advocacy Engagement Planner                                    41
                                   Take the Next Step in Alzheimer’s Advocacy                     42
                                   Phone2Action Alert                                             43

                                                                                    GETTING STARTED     3
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
DISCRIMINATION
                                                                                                  is a barrier to Alzheimer’s and dementia care.
 2021 ALZHEIMER’S                                                                                These populations reported discrimination when
                                                                                                                seeking health care:

 DISEASE FACTS AND
 FIGURES                                                                                         %           %         %          %
                                                                                                 of Black     of Native    of Asian   of Hispanic
                                                                                                Americans     Americans   Americans   Americans

                                    MORE                                                      Alzheimer’s and
                                                                                            dementia deaths have                OVER

                                                                                                                                
                                    THAN                                                         increased

  IN 
    seniors dies
with Alzheimer’s or
another dementia                MILLION
                                          6                                                      %
                                                                                            during the COVID-
                                                                                                  pandemic
                                                                                                                             MILLION
                                                                                                                            Americans provide
                                                                                                                           unpaid care for people
                                    Americans                                                                               with Alzheimer’s or
                                  are living with                                                                            other dementias
                                   Alzheimer’s

                                   Between                                                          In ,
                                 and ,                                                    Alzheimer’s
                                                                                                                             These caregivers
                                  deaths from                                               and other dementias
                                                                                                                           provided an estimated
                               heart disease have                                            will cost the nation
                                                                                                                             . billion hours
                        DECREASED                                                      $ BILLION                           valued at nearly

 It kills more than

BREAST CANCER
                                      .%                                                                                  $  
        +                                                                                         By ,
                                                                                                                              BILLION
PROSTATE CANCER                   while
                         deaths from Alzheimer’s                                            these costs could rise
                              disease have                                                      to more than

COMBINED                  INCREASED
                                                                                              $   .
                             %                                                            TRILLION

                      ©  Alzheimer's Association® | All Rights Reserved
                      Alzheimer's Association is a not-for-profit (c)() organization.
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
FACTSHEET
MARCH 2021                                                                                 alzimpact.org

2021 Alzheimer’s Disease Facts and Figures

The number of Americans living with                              Millions of Americans Aged 65
Alzheimer’s is growing — and growing                              and Older with Alzheimer’s
                                                                                                              13.8
fast.
                                                                                                 12.7
• Today, more than 6 million Americans are living
   with Alzheimer’s — 1 in 10 people aged 65 and                                    11.2
   older.

• The number of people living with Alzheimer’s is
   expected to more than double to nearly 13 million                   8.5
   by 2050.

                                                        6.2
However, the burden of Alzheimer’s is not
equally shared. Non-White populations
experience barriers when accessing
dementia care.                                          2021           2030         2040         2050         2060
• Blacks are about two times more likely than
   Whites to have Alzheimer’s and other dementias.
                                                          Percentage of Adults Who Believe Their
   Similarly, Hispanics are about one and one-half
                                                          Race/Ethnicity Will Affect the Quality of
   times more likely than Whites to have Alzheimer’s
                                                                     Dementia Care
   and other dementias.
                                                               66%
• Yet, two-thirds of Blacks believe that it is harder
   for them to get excellent care for Alzheimer’s,
   along with 40% of Native Americans and 39% of
   Hispanics.                                                                 40%          39%
                                                                                                        34%
• Fewer than half of Blacks and Native Americans
   feel confident they have access to providers who
   understand their ethnic or racial backgrounds.

• Additionally, 62% of Blacks believe that medical
   research is biased against people of color. This
   belief is also held by more than a third of Asian,
                                                              Blacks       Native      Hispanics      Asian
   Hispanic, and Native Americans.                                       Americans                  Americans
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
alzimpact.org                                                                                         alz.org ®

The growing number of people living with                    2021 Costs of Alzheimer’s = $355 Billion
Alzheimer’s is placing a huge strain on
the health care system.
• In 2021, the direct costs to American society of                                       Medicaid
                                                                                          $59B
   caring for those with Alzheimer’s will total an
   estimated $355 billion, with $239 billion of it (67%)
   paid by Medicare and Medicaid.                                     Medicare                  Out-of-
                                                                       $181B                    Pocket
• Average per-person Medicare spending for those
                                                                                                 $76B
   with Alzheimer’s and other dementias is more
   than three times higher than average per-person
   spending across all other seniors. Medicaid                                          Other
                                                                                        $39B
   payments are 23 times higher.

• Unless something is done, in 2050, Alzheimer’s
   will cost more than $1.1 trillion (in 2021 dollars).

Alzheimer’s is not just memory loss.                       Alzheimer’s also places a substantial
Alzheimer’s kills.                                         burden on families.
• In 2019, 121,499 people in the United States             • In 2020, family members and friends of individuals
   died from Alzheimer’s disease, making it the sixth         living with dementia provided unpaid care valued
   leading cause of death in the United States and            at nearly $257 billion.
   the fifth leading cause of death for those aged 65
                                                           • On average, each dementia caregiver today
   and older.
                                                              spends 20% more time providing care than a
• Deaths from Alzheimer’s increased 145% from 2000            dementia caregiver did a decade ago. This is the
   to 2019 while deaths from other major diseases             equivalent of nearly six more full work weeks of
   (including heart disease, stroke and HIV/AIDS)             unpaid care each year.
   decreased.
                                                           • Of the total lifetime cost of caring for someone
• Preliminary data show that in 2020, during the              with dementia, 70% is borne by families — either
   COVID-19 pandemic, there were approximately                through out-of-pocket health and long-term care
   42,000 Alzheimer’s and dementia deaths in excess           expenses or from the value of unpaid care.
   of the average.
                                                           • The annual out-of-pocket spending incurred by
                                                              dementia caregivers — including on household and
 Facts in Your State                                          personal expenses — is nearly twice as high as that
                                                              incurred by caregivers of people without dementia.
The 2021 Alzheimer’s Disease Facts and Figures
report also contains state-by-state data on the impact     • Nearly three-fourths of dementia caregivers report
of the disease. Find the full report and information on       that they are concerned about maintaining their own
your state at alz.org/facts.                                  health since becoming a caregiver.
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
10TH ANNIVERSARY
                          National Alzheimer’s Project Act (NAPA)

                                                                                                               NAPA mandated the creation of the National
                                                                                                               Plan to Address Alzheimer’s Disease.
                                                                        NATIONAL
                                                                       ALZHEIMER’S
                                                                       PROJECT ACT
                                                                                                               The Alzheimer’s Association hosted hundreds
                                                                          (NAPA)                               of community events to provide input to the
                                                                                                               federal government for the plan.

                                                          2011

      In 2011, the Alzheimer’s Association and
      AIM leadership paved the way for the
      National Alzheimer’s Project Act (NAPA).
      Prior to its passage, there was no cohesvie
                                                                                                                                         2012
      strategy to address Alzheimer’s.

                                                    The Alzheimer’s Association and AIM then created and advanced the Alzheimer’s
                                                    Accountability Act, which ensures Congress hears directly from NIH scientists
                                                    on the resources needed to meet the first goal of the National Plan to effectively
                                                    prevent and treat Alzheimer’s by 2025. In its first budget, the NIH requested a
                                                    $323 million increase in Alzheimer’s and dementia research funding.
                     2017

                                                                                                                                         2015

                                               The Alzheimer’s Association and AIM conceived             The NIH held the first National Research Summit
                                               of, and championed, the HOPE for Alzheimer’s              on Care, Services, and Supports for Persons with
                                               Act, and in January 2017 CMS started to cover             Dementia and Their Caregivers, creating national
                                               cognitive and functional assessments and care             recommendations for people with dementia and
                                               planning for people with Alzheimer’s and other            their families.
                                               cognitive impairments.

                                                                                         2018
               BOLD
                ACT
                                                                                                                                                   The Association and AIM
                                                                                                                                                   developed and worked
                                                                                                                                     YOUNGER-      with advocates to build
                                                                                                                                       ONSET       bipartisan support for
                                                                                                                                    ALZHEIMER’S    the Younger-Onset
                                                                                                                                    DISEASE ACT
                                                                                                                                                   Alzheimer’s Disease Act,
                                                                                                                                                   which ensures Americans
                                                                                               2020                                                living with dementia under
                                                                                                                                                   the age of 60 can now
                                                                                                                                                   utilize nutritional services,
                                                                                                                                                   supportive services, and
    Working with bipartisan Congressional champions, the Association,                                                                              respite care through the
    through AIM, was instrumental in developing and passing the Building                                                                           National Family Caregiver
    Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act                                                                                 Support program.
    in 2018, which created an Alzheimer’s public health infrastructure
    across the country to implement effective interventions.

                                                                                                                                                   Together with our
                                                                                                                                                   advocates, we advanced
                                                                                                                                                   the Promoting
                                                                                                                                  ALZHEIMER’S
   IMPROVING                                                                                                                                       Alzheimer’s Awareness
                                                                                                                                  AWARENESS
    HOPE FOR                                                                                                                                       to Prevent Elder Abuse
                                                                                                                                  TO PREVENT
  ALZHEIMER’S                                                                                                                                      Act to protect people
                                                                                                                                  ELDER ABUSE
      ACT                                                                                                                             ACT          with dementia from
                                                                                                                                                   elder abuse.

                                                                                                                Thanks
The Association and AIM                                                                                   to the dedication
championed the Improving
                                                                                                     of our advocates, donors,
HOPE for Alzheimer’s Act
to educate providers and
                                                                                                         and Congressional
increase utilization of                                                                               champions we’ve made
critical care planning services    Today, funding for Alzheimer’s and dementia                        a difference. But there’s
available through Medicare.        research at NIH is $3.1 billion annually,                            still work to be done.
                                   representing a more than seven-fold increase                               JOIN US.
                                   in research funding since NAPA passed.                                                                           alz.org/napa
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
TIPSHEET: SPARK SOCIAL
MEDIA CONVERSATIONS
Social networks enable direct interaction with policymakers, as most run (or at least monitor) their own
social media accounts to gather feedback from constituents. With just a handful of simple actions you can
make a big difference in the fight to end Alzheimer’s.

@                                    ≤3
                                     REMEMBER THE                          FIND POLITICAL
TAGGING                              “RULE OF THREE”
Mentioning or Tagging is an easy
                                                                           EVENTS ON
                                     Mentions, tags and hyperlinks are
way to engage legislators online.    all interactive and clickable parts
                                                                           FACEBOOK
On most major social networks,       of a social media post or Tweet.      Facebook’s events feature is
simply include their “handle”        It is best to include no more than    a great way to find opportunities
(i.e. @SenatorName) in your post.    three in a single post. Including     to connect with your elected
                                     too many can distract from your       officials and other advocates in
                                     primary message.                      your community. After following
                                                                           your elected officials, visit
                                                                           fb.com/events and check out the
                                                                           “popular with friends” category.
                                                                           Select “interested” for any local
RETWEETING                                                                 political events you see and
& COMMENTING                                                               Facebook will notify you of similar
                                                                           events in the future. Make sure
Reply and comment on                                                       to go early and stay late to
policymakers’ posts to raise the
issue of Alzheimer’s. You can also
                                     IDENTIFY                              network and discuss the
                                                                           Alzheimer’s crisis. And don’t
share their posts adding your        YOURSELF                              forget to wear your purple!
thoughts. Share posts from AIM,      AS A CONSTITUENT
your chapter or fellow advocates     Legislators want to hear
and tag your legislator to bring     from their constituents online.
them into the conversation.          Visit fb.com/townhall to turn-on
                                     Facebook’s “constituent badge.”

#
                                     On other platforms, mention
                                     your town/neighborhood in             GET LINKEDIN
                                     your profile and include photos       Elected officials aren’t your
                                     from recognizable local events        only audience. You can connect
#HASHTAGS                            or landmarks.                         with legislative staff, local
                                                                           influencers, other advocates
Hashtags link together a                                                   and community allies via your
conversation and help you                                                  professional network. You can
find relevant information.                                                 share AIM posts, your own
One commonly used example is:                                              letters-to-the-editor and
#ENDALZ. Please make sure                                                  relevant Alzheimer’s information.
the hashtag matches the message
you are sending.

                                                                           ENGAGING ELECTED OFFICIALS            8
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
TIPSHEET: SPARK SOCIAL
MEDIA CONVERSATIONS
                                        ADVOCACY BINGO
                                        Have some fun and engage on social media by completing the
SHARE                                   Advocate Bingo card below. Be sure to use #ENDALZ in your posts.
THE PICTURE                             Mark your card when you take one of the actions.
Images and videos increase the
likelihood your post will be noticed.        Take a                                        Use an
Tag any individuals, organizations                                         Post your     Alzheimer's     Ask your
                                            selfie at       Comment
and locations featured in your                                            “Why I’m an      related         social
                                             a local        on another
photo or video. If it includes                                             Advocate”      image as       network
                                           landmark         advocate’s                   your Zoom
an elected official or their staff,                                       photo, story                 followers to
                                              and              post                       or video
be sure to get their permission                                             or video                   take action.
                                            share it                                     background
before posting. Post multiple
photos together as an album.              Tag your
                                                                           Make an         Show us      Retweet or
                                             local          Tweet at
                                                                           “ask” on      your purple   share a post
                                         Alzheimer’s         both of
                                                                          one of our         pride       from the
                                         Association        your U.S.
                                                                           priorities     (i.e. your   Alzheimer’s
                                         Chapter in         Senators
                                                                          via a video     wardrobe)    Association
                                            a post
BROADCAST                                 Comment             Send an
YOURSELF                                   on an              email to                      Tweet
                                                                                                         Share a
                                                              friends/                                  1 minute
Consider sharing a “live” video            AIM or
                                                               family
                                                                            FREE           at your
                                                                                                       “Why I’m an
stream on Facebook, Twitter,             Association           urging      SPACE          U.S. Rep-
                                                                                                        Advocate”
or Instagram. Make sure you have          YouTube             them to                    resentative
                                                                                                          video
a steady device and you promote             video           take action
it in advance so your followers
                                                                           Comment
know to tune in. Save video clips          Be zany.           Follow      on Your U.S.   Comment         Text ALZ
so you can share highlights later         Try using          3 other       Senator(s)    on or reply    to 52886
for those who missed it.                 Boomerang,         advocates      Facebook
                                                                          Page or tag     to one of      and take
                                          animation         NOT from
                                                                            them in      AIM’s posts      action
                                         or silly filter.   your state
                                                                             a post

                                                              Share a                      Tag one        Share a
                                          Take a pic                      Have a pet?
                                                            post from                       of the         group
                                           with an                         Show us
                                                             alz.org/                    presenters     screenshot
MEET VIRTUALLY                            #ENDALZ
                                           sign or
                                                              blog or
                                                                          how they’re
                                                                            taking
                                                                                         or featured   from a Zoom
Remote video calls and virtual                              alzimpact.                   speakers in      or video
                                           paddle                           action
meetings have replaced many                                  org/blog                       a post      conference
in-person interactions.
Use Zoom, Skype, FaceTime
and other tools to hold
meetings with policymakers
and fellow advocates.

                                                                                 ENGAGING ELECTED OFFICIALS           9
ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
LEGISLATIVE MEETING TIPS
Even in these times of virtual meetings, it's important to make sure you're prepared
for meetings with elected officials.

                                                                          DON'T FORGET
                                                                          TO CLOSE
                                                                          Always ask for the official’s vote
                                                                          or support. Remember to pause
                                                                          and wait for a response.

                                                                          EXCHANGE
                                                                          INFORMATION
                                                                          When meeting with staff be sure
                                                                          to exchange contact information
                                                                          and let them know you intend on
                                                                          following up.

SHOW                                  KEEP IT SIMPLE                      SAY THANK YOU
YOUR COLORS                           Don’t be too technical, too         Remember to call or send a note
Wear something purple (tie,           detailed or too complex.            to your elected official to remind
scarf, sash, pin, etc.) to indicate   Be direct, cover the basics         them of your visit, and thank
that you are an Alzheimer’s           and make sure the official          them for their time and support.
Association or Alzheimer’s            understands your main point.
Impact Movement advocate.                                                 SHARE YOUR
                                      KEEP YOUR                           EXPERIENCE
PLAN YOUR PITCH                       GROUP SMALL                         Upload and post pictures of your
Planning is everything. Take          An unwieldy group can make          meeting to your social networks
the time to develop, rework           everyone uncomfortable,             and blogs. Remember to tag and
and refine your stance in advance.    distract from your message          share with your elected officials.
In other words, be prepared.          and waste valuable time             Use #ENDALZ to connect to
                                      getting set up. Make certain        other Alzheimer’s Advocates.
LISTEN                                that the group has already
Let the elected official or staff     chosen a spokesperson to            REPORT
member express his or her point       lead the meeting.
                                                                          YOUR ACTIVITY
of view.                                                                  Please make sure to enter
                                      NEVER TELL A LIE                    your meeting report on the
BE COURTEOUS                          If you don’t know the answer to
                                                                          Alzheimer’s Impact Movement
Even those who disagree with          a question, tell them you don’t
                                                                          (AIM) website.
your message may support              know, but offer to find out and
our future efforts. It’s important    then follow up. The safest phrase
                                      to remember is, “I’m not sure,      ALZIMPACT.ORG
not to burn any bridges.
                                      but I can follow up with the
                                      policy team at the Alzheimer’s
BE BRIEF                              Association to get more
Virtual burnout is real and
                                      information.”
something we all can experience
from time to time. Try to keep
your story short and to the point.
                                                                          ENGAGING ELECTED OFFICIALS           10
LEGISLATIVE MEETING CHECKLIST
Below are some suggested ways to successfully plan a group meeting with elected officials.

ASSIGN ROLES                                                                  PRE-MEETING
AND ASSIGNMENTS                                                               » Are all meeting attendees
                                                                                present and accounted for?
» Who is responsible for emailing materials before or after the meeting?
                                                                              » Did you confirm meeting
                                                                                roles over email prior to
» Who is going to handle introductions? Ex. Who we are,                         the meeting?
  why we’re here?

» Who is going to tell their story and show how it relates
  to the first issue?
                                                                              POST-
                                                                              MEETING
                                                                              » Who will post a photo
» Who is going to make the first “ask”?                                         from the meeting to
                                                                                Twitter and Facebook?

» Who is going to tell their story and show how it relates
  to the second issue?                                                        » Who will submit the meeting
                                                                                report to alzimpact.org?

» Who, if applicable, is going to make the additional ask(s)?
                                                                              » Who will follow-up with the
                                                                                legislative office? Ex. Provide
» Who is going to conclude the meeting and ask for a photo/screenshot           answers to pending questions,
  to be taken?                                                                  additional materials.

                                                                              » Who will update/debrief
                                                                                participants and provide
LOGISTICS                                                                       next steps?

» Have the meeting time and virtual platform been confirmed?

» Do all attendees have the legislative office’s contact information?

                                                                           ENGAGING ELECTED OFFICIALS             11
2021 FEDERAL POLICY PRIORITIES
Alzheimer’s is 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.

1
          BUILD A PATH               Caring for an individual with Alzheimer’s or another dementia poses
          TO BETTER                  unique challenges. Comprehensive dementia care has been shown
          DEMENTIA CARE              to reduce costs while providing better quality care. Unfortunately,
                                     dementia care management programs have not developed within
                                     the current Medicare fee-for-service system. The bipartisan
                                     Comprehensive Care for Alzheimer’s Act (S. 1125 / H.R. 2517)
                                     would ask the Center for Medicare and Medicaid Innovation (CMMI)
                                     to test a different payment structure for dementia care management.
                                     This important bill has the potential to streamline today’s complicated
                                     health care maze for people living with dementia and their caregivers.

2
          SUPPORT                    Alzheimer’s and other dementia disproportionately affect older
          EQUITY IN                  Black and Hispanic Americans compared to older Whites. In fact,
          ALZHEIMER’S                Black Americans are twice as likely to develop Alzheimer’s, and
                                     Hispanic Americans are one and a half times more likely to develop
          CLINICAL TRIALS
                                     the disease. Yet much of the Alzheimer’s research to date has not
                                     included sufficient numbers of Black, Hispanic, Asian or Native
                                     Americans to be representative of the U.S. population. The
                                     underrepresentation of these populations not only hinders the ability
                                     of researchers to understand these health disparities, it also restricts
                                     their knowledge of how an approved therapy or diagnostic may affect
                                     the populations most likely to need the treatment. The bipartisan
                                     Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act (H.R.
                                     3085 / S. 1548), would increase the participation of
                                     underrepresented populations in Alzheimer’s and other dementia
                                     clinical trials by expanding education and outreach to these
                                     populations, encouraging the diversity of clinical trial staff and
                                     reducing participation burden, among other priorities.

                                                                             2021 ISSUES AND PRIORITIES         12
2021 FEDERAL POLICY PRIORITIES
Alzheimer’s is 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.

3
          INCREASE THE               More than 6 million Americans are living with Alzheimer’s, and by
          COMMITMENT                 mid-century, the number of people with the disease is set to nearly
          TO ALZHEIMER’S             triple. Already the most expensive disease in America with costs
          RESEARCH AND               reaching an estimated $355 billion in 2021, these costs are
                                     projected to more than quadruple to $1.1 trillion by mid-century,
          PUBLIC HEALTH
                                     with two-thirds paid by Medicare and Medicaid.
          RESPONSE
                                     » Consistent with the National Plan to Address Alzheimer’s Disease,
                                       Congress has bolstered support for research funding at the National
                                       Institutes of Health (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 dementias by 2025. Congress must
                                       continue its commitment to the fight against Alzheimer’s and
                                       other dementias by increasing funding for Alzheimer’s research
                                       by an additional $289 million in fiscal year 2022.
                                     » The bipartisan Building Our Largest Dementia (BOLD) Infrastructure
                                       for Alzheimer’s Act (P.L. 115-406) directs the Centers for Disease
                                       Control and Prevention (CDC) to strengthen the public health
                                       infrastructure across the country by implementing effective
                                       Alzheimer’s interventions focused on public health issues such
                                       as increasing early detection and diagnosis, reducing risk, and
                                       preventing avoidable hospitalizations. The BOLD Infrastructure
                                       for Alzheimer’s Act will accomplish this by establishing Alzheimer’s
                                       and Related Dementias Public Health Centers of Excellence;
                                       providing funding to state, local, and tribal public health departments;
                                       and increasing data analysis and timely reporting. To ensure the law’s
                                       successful implementation, Congress must fully fund the $20 million
                                       authorized in the law for CDC in fiscal year 2022.

4
          SUPPORT                    Although often rewarding, the intense responsibilities of providing
          ALZHEIMER’S                care for someone living with dementia often take a toll on the
          CAREGIVERS                 caregiver. Providing that care can be an emotionally, physically
                                     and financially draining role. Yet as a nation, we haven’t done
                                     enough to support the 11 million Americans providing this unpaid
                                     care. The bipartisan Alzheimer’s Caregiver Support Act (S. 56/H.R.1474)
                                     would provide much needed relief for our nation’s caregivers.
                                     The Alzheimer’s Caregiver Support Act would provide grants to expand
                                     training and support services for unpaid caregivers of people living
                                     with Alzheimer’s disease and other dementia. These grants would
                                     cover valuable training and services including caregiver support
                                     groups, group education and skills-training sessions.

                                                                              2021 ISSUES AND PRIORITIES          13
FACTSHEET
APRIL 2021                                                                                       alz.org®

Comprehensive Care for Alzheimer’s Act

Caring for an individual living with                     However, a change in the payment
Alzheimer’s or another dementia poses                    structure is necessary to enable dementia
unique challenges.                                       care management.
• More than 95% of individuals with dementia             • Under the current system, many practices
   have one or more other chronic conditions, the           cannot afford the upfront costs of developing,
   management of which is complicated by an                 implementing, and sustaining a dementia care
   individual’s cognitive impairment.                       management program.

• Individuals with dementia rely heavily on family       • Instead of paying a fee for each specific service,
   members to provide a large amount of care, which         providers should receive an annual per-patient
   is often intrusive and exhausting.                       payment for all services provided under the
                                                            program, including important services not
• Too often, those with Alzheimer’s and their               otherwise reimbursed by Medicare.
   caregivers are forced to fend for themselves in the
   complicated maze of the health care and social        • This structure would allow dementia care

   support systems.                                         management programs to be financially feasible
                                                            for health care providers and practices; especially
                                                            for smaller practices, rural practices, and inner-city
Dementia care management can ease
                                                            community health centers.
these challenges, improving quality of
care and reducing costs.                                 The Comprehensive Care for Alzheimer’s
• Dementia care management is a model of                 Act (S. 1125 / H.R. 2517) would ask
   care that is proven to reduce health care use         the Center for Medicare and Medicaid
   and costs and to improve the quality of life for      Innovation (CMMI) to test a better payment
   individuals living with dementia and their families   structure for dementia care management.
• Dementia care management enables individuals
                                                         This model would:
   to more seamlessly navigate health care and           • Provide services such as the development of
   social support systems and to obtain more timely         a dementia care plan, care coordination and
   access to care.                                          navigation, and caregiver education and support.

• Elements of dementia care management include           • Ensure patients have access to an interdisciplinary
   care coordination and navigation, management of          team of providers with dementia care expertise.
   chronic conditions, and caregiver education and       • Reimburse providers through a capitated payment
   support.                                                 and an incentive payment based on performance.
COMPREHENSIVE CARE FOR
ALZHEIMER’S ACT BACKGROUND
AND TALKING POINTS
ASK     Please cosponsor the Comprehensive Care for Alzheimer’s Act, which would ask the
        Center for Medicare and Medicaid Innovation (CMMI) to implement a dementia care
        management model.

BACKGROUND                           Currently, Medicare pays health      Despite their success,
                                     care providers for each individual   however, these dementia care
The Alzheimer’s Association          service they provide, a system       management programs will
and the Alzheimer’s Impact           known as Fee-for-Service (FFS).      not spread on their own under
Movement (AIM) strongly support      This means that there is no          the current Medicare system
the bipartisan Comprehensive         incentive for a clinician to         due to the significant upfront
Care for Alzheimer’s Act             coordinate the delivery of care      financial investment that
(S. 1125/H.R. 2517), which was       and services. It also rewards        physician practices must make
introduced by Senators Debbie        providers for billing for many       to launch them. Furthermore,
Stabenow (D-MI) and Shelley          different services, but not          Medicare does not provide
Moore Capito (R-WV) in the           for providing quality health         reimbursement for many of the
Senate and Representatives           outcomes for their patient.          patient and caregiver services
Brian Higgins (D-NY-26),             However, there are different         that are key to these programs'
Darin LaHood (R-IL-18),              kinds of payment systems that        success, like caregiver support
Paul Tonko (D-NY-20),                do address these issues by           and community-based service
and Brett Guthrie (R-KY-2)           paying for the value of the care,    referrals. We need a system that
in the House of Representatives.     including better outcomes            pays for more of the services
                                     for beneficiaries.                   persons living with dementia and
MAKING THE                                                                families need, and one that pays
                                     At the federal level, the
CASE FOR THE                         Center for Medicare and
                                                                          clinicians to deliver high-value
COMPREHENSIVE                        Medicaid Innovation (CMMI)
                                                                          — not high-volume — care.
CARE FOR                             is tasked with creating and
ALZHEIMER’S ACT                      testing innovative models of care    WHAT IS A DEMENTIA
Caring for an individual with        delivery and payment to improve      CARE MANAGEMENT
Alzheimer’s or other dementias       outcomes and reduce costs.           MODEL?
poses unique challenges.             It has funded dementia care          A dementia care management
In addition to having complex        management models in the past,       model includes a variety of
medical needs — the management       and those models demonstrated        services that persons living with
of which is complicated by           that comprehensive, coordinated      dementia and caregivers need,
cognitive impairment — they have     dementia care can reduce             like medical care, referrals to
non-medical needs, like supports     hospitalizations and emergency       community-based organizations,
to remain in their homes and         department visits and delay          care navigation assistance, and
communities, and help making         nursing home placement,              caregiver support, among others.
a wide variety of decisions.         thus improving outcomes              Just as importantly, the model
But because our health care          and reducing total costs.            ensures that the delivery of
system doesn't pay for the                                                these services is coordinated
coordinated care this population                                          and seamless — no more
requires, persons with dementia,                                          struggling through the maze
their caregivers, and families are                                        of services and providers.
forced to navigate a daunting,
costly maze.                                                                2021 ISSUES AND PRIORITIES        15
COMPREHENSIVE CARE FOR
ALZHEIMER’S ACT BACKGROUND
AND TALKING POINTS
WHAT DOES THE
                                      Q.         What is                  related dementia. Additionally,
COMPREHENSIVE                                    CMMI?                    the Advisory Council on
CARE FOR                                                                  Alzheimer’s Research, Care,
                                                  The Center for
                                                                          and Services recommends
ALZHEIMER’S ACT DO?                   Medicare and Medicaid
                                                                          further development, evaluation,
Through the Comprehensive             Innovation (CMMI), also known
                                                                          and use of Alzheimer’s and
Care for Alzheimer’s Act,             as the CMS Innovation Center,
                                                                          dementia care models that align
Congress would ask CMMI               falls under the Centers for
                                                                          performance measures, the
to implement a dementia care          Medicare & Medicaid Services
                                                                          experience of care by persons
management model to test the          (CMS). CMMI is charged with
effectiveness of comprehensive                                            living with dementia and their
                                      testing innovative payment
care management services.                                                 caregivers, and payment.
                                      and delivery models that show

                                                                          Q.
The model is designed to reach        the potential to maintain or
as many Medicare beneficiaries        improve the quality of care in
                                                                                 How much
as possible, especially individuals
                                      Medicare or Medicaid.
                                                                                 would the
from diverse communities                                                         Comprehensive

                                      Q.
and rural and medically
underserved areas.
                                                 What is                  Care for Alzheimer’s
                                                 Medicare FFS?            Act cost?
FREQUENTLY                                        Medicare Fee-for-       The bill has not been scored
                                      Service is the default system       by the Congressional Budget
ASKED QUESTIONS                                                           Office (CBO) and there is no cost
                                      of health care payment in which
During the course of your             a Medicare provider is paid         estimate for the bill. However,
meetings with members of                                                  the Alzheimer’s Association and
                                      separately for each individual
Congress and their staff, you
                                      service delivered. Approximately    AIM will continue to work with
may encounter some common
                                      two thirds of Medicare              the bill’s sponsors to determine
questions. We have addressed
                                      beneficiaries are part of the       the impact it would have on
some of these questions below.
                                      Fee-for-Service system.             federal spending.

Q.      Will Medicare
        providers or
        beneficiaries
be required to
                                      Q.     What does
                                             the National
                                             Plan to
                                                                          NOTE: If your member of
                                                                          Congress or their staff asks you
                                                                          a question you do not know the
                                                                          answer to, that is not a problem.
                                      Address Alzheimer’s
participate?                          Disease say about                   Do not feel any pressure to
                                                                          provide an answer. Simply ask
No, participation in this model       a dementia care                     them to contact a member
is voluntary for both providers       management model?                   of the Alzheimer’s Impact
and beneficiaries.
                                      This legislation is consistent      Movement’s Federal Affairs Team
                                      with the National Plan to Address   at 202.393.7737. Also indicate
                                      Alzheimer’s Disease, Strategy 2.E   the interaction at alzimpact.org
                                      of which calls for exploration      so a member of the Federal Affairs
                                      of new models of care for people    team can follow-up with that office.
                                      with Alzheimer’s disease and                                               16
                                                                            2021 ISSUES AND PRIORITIES
FACTSHEET
M AY 2 0 2 1                                                                              alzimpact.org

ENACT Act

Alzheimer’s disease disproportionately                    Underrepresentation of Blacks and
affects Black and Hispanic older                             Hispanics in Clinical Trials
Americans.
                                                            % of clinical trial participants           18%
• Although Whites make up the majority of the               % of U.S. population
   over 6 million people in the United States with
   Alzheimer’s, research shows that Blacks and                           13%
   Hispanics are at higher risk.

• Blacks are about two times more likely than
   Whites to have Alzheimer’s and other dementias.
                                                             5%
• Hispanics are about one and one-half times more
   likely than Whites to have Alzheimer’s and other                                            1%
   dementias.
                                                                  Blacks                        Hispanics
However, Alzheimer’s research to date has
not included sufficient numbers of Blacks
                                                       Additionally, changing demographics and
and Hispanics.
                                                       risk factor profiles necessitate recruitment
• In 2018, across all clinical drug trials (not just   of more Asian and Native Americans into
   Alzheimer’s), Blacks represented only 5% of         Alzheimer’s clinical trials.
   trial participants and Hispanics represented only
   1%, despite representing 13% and 18% of the         • By 2050 Asian Americans are projected to
   population, respectively.                              comprise nearly 8% of those aged 65 and older.
                                                          However, over the last two decades, less than 1%
• The best available evidence suggests that this          of the National Institutes of Health’s (NIH) total
   trend is similar in Alzheimer’s research. A study      budget has gone to research projects focused on
   from 2016 found that among 10 recent Alzheimer’s       Asian Americans.
   biomarker studies, only 2 of them had recruited
   adequate numbers of Blacks.                         • Native Americans have high rates of chronic
                                                          conditions, including conditions that are suspected
• The underrepresentation of racial and ethnic            risk factors for Alzheimer’s, such as obesity,
   minorities in clinical trials limits knowledge of      diabetes and hypertension. Despite this, available
   how a treatment or diagnostic may affect these         data suggest that participation of Native Americans
   populations.                                           in clinical trials is very low.
alzimpact.org                                                                                           alz.org ®

Including more individuals from                               Percentage of Adults Who Believe
traditionally underrepresented                                   Research is Biased Against
populations in Alzheimer’s clinical                                   People of Color
trials will require establishing trust and                              62%
lowering the burden of participation.
• According to a recent survey, nearly two-thirds
                                                                                                  45%
   of Blacks believe that medical research is biased                                                          40%
   against people of color. This belief is also held by                              36%
   more than a third of Asian Americans, Hispanics,        31%
   and Native Americans.

• Additionally, there can be significant barriers for
   underrepresented populations to access clinical
   trials. For example, individuals from diverse
   communities often must travel long distances to
                                                          Whites       Blacks      Hispanics     Asian    Native
   research sites, which can result in a substantial
                                                                                               Americans Americans
   financial cost to the participants.

 Current NIA Efforts                                      The Equity in Neuroscience and
 The National Institute on Aging (NIA) has                Alzheimer’s Clinical Trials (ENACT) Act
 established centers across the country that offer        (H.R. 3085 / S. 1548) seeks to increase
 local resources, support, and opportunities to           representation in Alzheimer’s clinical
 participate in research on Alzheimer’s and other
                                                          trials among traditionally
 dementias. NIA currently funds 31 Alzheimer’s
 Disease Research Centers (ADRCs) at major
                                                          underrepresented groups. The bill would:
 medical institutions across the United States and        • Provide funding for the NIA to build trust among
 four Exploratory ADRCs that are designed to                 underrepresented populations by expanding
 expand and diversify research and educational               education and outreach and increasing the
 opportunities to new areas of the country,                  diversity of clinical trial staff.
 populations, areas of science, and approaches to
 research.                                                • Reduce the burden associated with participating in
                                                             clinical trials by:
 There are also eight Alzheimer’s disease-focused
                                                              o Funding new Alzheimer’s Disease Research
 Resource Centers for Minority Aging Research
                                                                   Centers (ADRCs) and increasing the number
 (RCMARs). These Centers focus on enhancing
                                                                   of Alzheimer’s clinical trials in areas with high
 the diversity of the aging research workforce
                                                                   concentrations of underrepresented
 through the mentoring of promising scientists from
                                                                   populations.
 underrepresented groups.
                                                              o Requiring grant recipients to use community-
 For more information on ADRCs, visit:                             based engagement strategies in their outreach
 nia.nih.gov/research/adc.                                         to underrepresented populations.
EQUITY IN NEUROSCIENCE AND
ALZHEIMER’S CLINICAL TRIALS (ENACT)
ACT BACKGROUND AND TALKING POINTS
ASK      Please cosponsor the Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act,
         which would increase the participation of underrepresented populations in Alzheimer’s
         and other dementia clinical trials.

BACKGROUND                               likely to develop Alzheimer’s          numbers of Asian Americans
                                         and Hispanic Americans are one         (45%), Native Americans (40%),
The Alzheimer’s Association
                                         and a half times more likely to        and Hispanic Americans (36%)
and the Alzheimer’s Impact
                                         develop the disease. However,          as well. In fact, only half of
Movement (AIM) strongly
                                         much of the Alzheimer’s                Black Americans (53%) trust
support the bipartisan Equity
                                         research to date has not included      a future cure for Alzheimer’s
in Neuroscience and Alzheimer’s
                                         sufficient numbers of Blacks,          will be shared equally
Clinical Trials (ENACT) Act (H.R.
                                         Hispanics, Asian Americans/            regardless of race, color or
3085 / S. 1548), which was
                                         Pacific Islanders and Native           ethnicity. This underscores
introduced by Senators Ben Ray
                                         Americans to be representative         the need to build and restore
Luján (D-NM) and Susan Collins
                                         of the U.S. population. The            trust in underrepresented
(R-ME) in the Senate and
                                         underrepresentation of these           communities. Strong community
Representatives Lisa Blunt
                                         populations not only hinders           relationships can serve to
Rochester (D-DE), Jaime
                                         the ability of researchers             address misconceptions and
Herrera Beutler (R-WA), Chris
                                         to understand these health             mistrust about research
Smith (R-NJ), John Curtis (R-UT)
                                         disparities, it also restricts their   because the community has
and Maxine Waters (D-CA) in the
                                         knowledge of how an approved           a sense of ownership in the
House of Representatives. This
                                         therapy or diagnostic may affect       research initiative. Community-
important legislation would
                                         the population most likely to          based participatory research
increase the participation of
                                         need the drug. There is therefore      (CBPR) and engagement with
underrepresented populations in
                                         an urgent need for current             community-based organizations
Alzheimer’s and other dementia
                                         and future research to include         (CBOs) are two strategies that
clinical trials by expanding
                                         increased numbers of Blacks,           can accomplish this goal.
education and outreach to these
                                         Hispanics, Asian Americans/            The National Institute on
populations, encouraging the
                                         Pacific Islanders, and Native          Aging (NIA) has established a
diversity of clinical trial staff, and
                                         Americans in clinical trials to        good foundation of centers
reducing participation burden,
                                         ensure everyone benefits from          across the country that offer
among other priorities.
                                         advances in Alzheimer’s science.       local resources, support, and
MAKING THE CASE                          According to the Alzheimer’s           opportunities to participate in
FOR THE ENACT ACT                        Association 2021 Alzheimer’s           Alzheimer’s and other dementia
Alzheimer’s and other dementia           Disease Facts and Figures special      research. NIA currently funds
disproportionately affect older          report, nearly two-thirds of           31 Alzheimer’s Disease
Black and Hispanic Americans             Black Americans (62%) believe          Research Centers (ADRCs)
compared to older Whites. Black          medical research is biased             at major medical institutions
Americans are twice as                   against people of color —              across the United States and
                                         a view shared by substantial           four Exploratory ADRCs that

                                                                                  2021 ISSUES AND PRIORITIES      19
EQUITY IN NEUROSCIENCE AND
ALZHEIMER’S CLINICAL TRIALS (ENACT)
ACT BACKGROUND AND TALKING POINTS
are designed to expand and           and Universities (HBCUs),            The ENACT Act would reduce
diversify research and education     Hispanic-Serving Institutions,       participation burden to make
opportunities to new areas of        Tribal Colleges and Universities     it easier for underrepresented
the country, new populations,        (TCUs), or centers of excellence     populations to participate
and new areas of science and         for other underrepresented           in Alzheimer’s and other
approaches to research.              populations. The ENACT Act           dementia clinical trials by
There are also eight Alzheimer’s     would provide funding for            providing incentives for locating
disease-focused Resource             ADRCs and RCMARs to increase         Alzheimer’s clinical trial sites
Centers for Minority Aging           education and outreach to            in areas with high concentrations
Research (RCMARs) which              underrepresented communities         of underrepresented populations,
focus on enhancing the diversity     and primary care physicians to       as identified by data from the
of the aging research workforce      let them know about current trial    U.S. Census and Medicare
by mentoring promising scientists    opportunities, the importance        claims data. The bill would direct
from underrepresented groups         of participation, and the            NzIA to ensure grantees use
for sustained careers in aging       disparate impact of the disease      community-based engagement
research. These ADRCs and            on their populations. Importantly,   strategies in their outreach
RCMARs are well-positioned           ADRCs and RCMARs would use           to underrepresented populations.
to increase education                community-based engagement           The bill also encourages the use
and outreach activities to           strategies in their outreach to      of remote health technology
underrepresented populations         underrepresented populations.        in communities, such as remote
within their communities.            The ENACT Act would direct           patient monitoring, to ease
                                     NIA to enhance the diversity         the burden of participation.
WHAT DOES THE                        of principal investigators           Importantly, the bill would
ENACT ACT DO?                        and study staff conducting           direct NIA to ensure grantees
The ENACT Act would                  Alzheimer’s and other dementia       appropriately budget for
increase the participation of        clinical trials, so they are more    outreach activities to
underrepresented populations in      representative of the populations    underrepresented populations
Alzheimer’s and other dementia       they’re trying to enroll. The bill   and include a description of
clinical trials by expanding         directs NIA to provide training      outreach plans. NIA would
education and outreach to these      to principal investigators from      also encourage grantees to
populations, encouraging the         underrepresented populations         engage with community-based
diversity of clinical trial staff,   on topics like clinical protocols    organizations in efforts to
and reducing participation           and how to apply for grants,         increase clinical trial participation
burden, among other priorities.      so they have the necessary           of underrepresented populations.
                                     expertise. NIA would also            Finally, the ENACT Act authorizes
Specifically, the ENACT Act
                                     ensure senior researchers from       $60 million per year for five
would provide funding for NIA to
                                     underrepresented populations         years, from FY22-FY26. The bill
expand the number of ADRCs in
                                     are included when making awards      leaves flexibility to NIA on how
areas with higher concentrations
                                     for leadership and excellence in     best to use those funds for the
of underrepresented populations,
                                     Alzheimer’s research.                legislation’s various activities.
such as through entities like
Historically Black Colleges                                                 2021 ISSUES AND PRIORITIES            20
EQUITY IN NEUROSCIENCE AND
ALZHEIMER’S CLINICAL TRIALS (ENACT)
ACT BACKGROUND AND TALKING POINTS
FREQUENTLY ASKED QUESTIONS
During the course of your meetings with members of Congress and their staff, you may encounter
some common questions. We have addressed some of these questions below.

Q.       What actions
         has NIA taken
         to increase
the participation
                                    » NIA has also released the
                                      “Alzheimer’s Disease and
                                      Related Dementias Clinical
                                      Studies Recruitment Planning
                                                                        » More broadly, NIA created
                                                                          the NIA Health Disparities
                                                                          Research Framework which
                                                                          highlights priorities and
                                      Guide” focused on the               investments in this important
of underrepresented                   recruitment and retention           aging research area, designed
populations in                        of diverse participants             to serve as a resource for
Alzheimer’s and                       in Alzheimer’s and other            scientists interested in
other dementia                        dementia clinical trials,           investigating health disparities
clinical trials?                      including strategies to develop     related to aging.
                                      equitable and sustainable
» NIA, with facilitation by the                                         » These helpful resources
                                      community partnerships
  Alzheimer’s Association,                                                have laid the groundwork
                                      founded on trust; promote
  released a “National Strategy                                           for efforts to increase the
                                      health and science literacy
  for Recruitment and                                                     diversity of participants in
                                      for healthcare providers,
  Participation in Alzheimer’s                                            Alzheimer’s clinical trials.
                                      community partners,
  and Related Dementias                                                   The ENACT Act would
                                      patients, and families; and
  Clinical Research” which                                                build upon this foundation
                                      implement system reforms
  outlines practical, proactive                                           and apply these strategies
                                      and infrastructure to address
  approaches to help study                                                nationwide to expand efforts
                                      bias in workforce diversity
  sites and researchers recruit                                           to increase the participation of
                                      and cultivation of community
  and retain adequate numbers                                             underrepresented populations
                                      bridges to increase capacity
  of diverse volunteers                                                   in Alzheimer’s and other
                                      for inclusive outreach.
  for a growing number                                                    dementia clinical trials.
  of studies in Alzheimer’s         » Additionally, NIA has created
  and other dementia. The             Alzheimer’s & Dementia
  recommendations focus               Outreach, Recruitment &
  on increasing awareness             Engagement Resources
  and engagement, building            (ADORE), a repository of
  and improving research              resources to support the
  infrastructure, engaging local      recruitment and retention
  communities and support             of participants into clinical
  participants, and developing an     trials and studies.
  applied science of recruitment.

                                                                           2021 ISSUES AND PRIORITIES        21
EQUITY IN NEUROSCIENCE AND
ALZHEIMER’S CLINICAL TRIALS (ENACT)
ACT BACKGROUND AND TALKING POINTS

Q.       What actions                 » U.S. POINTER sites were          » Finally, while recruitment
         has the                        selected based, in part, on        is a crucial focus, it is also
         Alzheimer’s                    their history of engagement        important to continue
                                        and reach into their               to engage participants
Association taken                       communities. The Alzheimer’s       throughout the trial process
to increase the                         Association considered factors     to ensure retention. The
participation of                        of the community networks          Alzheimer’s Association and
underrepresented                        from both the clinical (health     AIM support retention efforts
populations in                          system and academic partners)      like engaging participants
Alzheimer’s and                         and Association teams, and         through a communication
other dementia                          we have made it a priority         portal, providing enrollees
                                        to develop a grassroots            with information and resources
clinical trials?                        strategy for community-based       throughout the trial, and
» The Alzheimer’s Association           engagement and recruitment         establishing participant
  has made increasing the               within the site community.         support groups.
  participation of underrepresented     This builds upon the networks

                                                                         Q.
  populations in clinical trials        linking community-based
  a priority in our research            organizations, community
                                                                               What is
  and engagement efforts,               leaders, and the clinical              community-
  including offering targeted           research teams.                        based
  programs to expand the                                                 engagement?
  diversity and inclusiveness         » So far, U.S. POINTER sites
                                        have been successful in          » Community-based
  of scientists in Alzheimer’s
                                        enrolling over 25% of              engagement is a collaborative
  and other dementia research
                                        participants from                  research approach that
  and including language
                                        underrepresented populations,      is designed to ensure
  in our grant agreements
                                        which is in line with              participation by communities
  for all awardees regarding
                                        the overall population             affected by the issue being
  the expectations of diverse
                                        in those communities.              studied, representatives of
  and inclusive recruitment for
                                                                           organizations, and researchers
  all clinical studies.               » In addition, the New IDEAS         in all aspects of the research
» One specific example of               Study aims to be among the         process to improve health
  our work to diversify trial           most racially and ethnically       and well-being.
  participants is the U.S. Study to     diverse Alzheimer’s studies
                                        ever launched. At least 4,000    » Examples of community-based
  Protect Brain Health Through
                                        of the planned 7,000 New           engagement include community
  Lifestyle Intervention to
                                        IDEAS participants will be         presentations, media outreach,
  Reduce Risk (U.S. POINTER).
                                        Black/African American and         community advisory boards,
                                        Hispanic/Latino, populations       and flagship events.
                                        historically underrepresented
                                        in dementia research.
                                                                           2021 ISSUES AND PRIORITIES       22
EQUITY IN NEUROSCIENCE AND
ALZHEIMER’S CLINICAL TRIALS (ENACT)
ACT BACKGROUND AND TALKING POINTS

Q.     Is the ENACT
       Act consistent
       with the
National Plan to
                                    Q.      Should we
                                            be asking
                                            Appropriators
                                    to support the $60
                                                                        Q.      Will the
                                                                                ENACT Act
                                                                                slow down
                                                                         research efforts or
Address Alzheimer’s                 million per year                     cause clinical trials
Disease?                            authorized in the                    to take longer?
» Yes, the ENACT Act is             ENACT Act?                           » No. The ENACT Act provides
  consistent with the goals in                                             additional resources to ensure
                                    » No. While the ENACT Act
  the National Plan to Address                                             researchers running clinical
                                      authorizes $60 million per
  Alzheimer’s Disease which                                                trials are able to supplement
                                      year for five years, the bill
  includes Action 1.B.4, “Monitor                                          current and future
                                      first has to be signed into
  and identify strategies to                                               enrollment efforts.
                                      law before we can request
  increase enrollment of racial       that funding through the           » This increased funding ensures
  and ethnic minorities in            appropriations process.              they do not have to divert
  Alzheimer’s disease and related                                          any resources away from the
  dementias studies.”               » This is very similar to the
                                                                           important research being done.
                                      BOLD Infrastructure for
                                      Alzheimer’s Act, which             » The ENACT Act also would
                                      authorized $20 million               strengthen awareness of
                                      per year. We advocated               and access to clinical trials,
                                      for BOLD’s passage                   as well as build trust within
                                      in 2018 and once enacted,            communities, which will help
                                      we then began advocating             researchers with recruitment.
                                      for that funding through
                                      the appropriations process         » Additionally, there is nothing
                                      in 2019.                             in the bill that prevents clinical
                                                                           trials from moving forward at
                                                                           the pace they do now.

                                    NOTE: If your member of Congress or their staff asks you a question
                                    you do not know the answer to, that is not a problem. Do not feel any
                                    pressure to provide an answer. Simply ask them to contact a member of
                                    the Alzheimer’s Impact Movement’s Federal Affairs Team at 202.393.7737.
                                    Also indicate the interaction at alzimpact.org so a member of the
                                    Federal Affairs team can follow-up with that office.

                                                                           2021 ISSUES AND PRIORITIES           23
FACTSHEET
MARCH 2021                                                                              alzimpact.org

Fiscal Year 2022 Alzheimer’s Research Funding

The escalating Alzheimer’s epidemic has                           Alzheimer’s Costs to Medicare
profound implications for government                                     and Medicaid                    $798
budgets.                                                              (in billions of 2020 dollars)

• Alzheimer’s is one of the most expensive                                                        $646

    diseases in America, costing more than heart
                                                                                          $536
    disease and cancer.
                                                                                 $424
• In 2021, caring for people with Alzheimer’s and
    other dementias will cost the United States an                        $326

    estimated $355 billion. Cumulatively between           $239    $250
    2021 and 2050, it will cost $20 trillion (in 2021
    dollars) — two-thirds of which will be borne by
    Medicare and Medicaid.

 • One in every 5 dollars of Medicare spending             2020    2025   2030   2035     2040    2045   2050
    is spent on people with Alzheimer’s and other
    dementias.
                                                          Congressional action is needed to stay
Despite the recent increased investment                   on the path to discovering scientific
in Alzheimer’s research, funding still falls              breakthroughs.
short of the need.
                                                          • The National Alzheimer’s Plan has established
• For fiscal year 2021, Congress provided an                 a goal of developing preventions and effective
    additional $300 million in Alzheimer’s research          treatments for Alzheimer’s by 2025.
    funding at the National Institutes of Health (NIH).
                                                          • To help achieve this, the NIH Alzheimer’s bypass
• With this increase, along with previous research           budget — what the NIH scientists say they
    investments, NIH spending on Alzheimer’s                 need — calls for an additional $289 million in
    research is expected to total $3.1 billion in 2021.      Alzheimer’s research funding for fiscal year 2022.

•   However, this is still short of the total funding     • This increase will allow the NIH to accelerate
    scientists and the federal Alzheimer’s Advisory          investment in collaborations that speed discovery,
    Council have indicated is necessary for continued        ground breaking prevention trials, and the testing
    progress.                                                of new therapeutics.
INCREASE THE COMMITMENT
TO ALZHEIMER’S RESEARCH FUNDING
BACKGROUND AND TALKING POINTS
ASK      Please ask the Chair and Ranking Member of the House/Senate Appropriations Committee
         to support an additional $289 million in Fiscal Year 2022 (FY22) for Alzheimer’s research
         activities at the National Institutes of Health (NIH).

BACKGROUND                                                                     MAKING THE CASE FOR
In December 2020, Congress             review at FDA, for the first time,      RESEARCH FUNDING
appropriated a $300 million            that may treat the underlying           * As the current pandemic has
increase for Alzheimer’s research      biology of the disease.                   shown, continued investment
funding in FY21, bringing the                                                    in medical research is absolutely
annual allocation to over $3.1         However, even with this great             critical to understanding and
billion. This significant increase     progress, there is still much left to     responding to diseases.
builds upon several years of           be done. Investment in Alzheimer’s
historic funding increases and is an   research is still only a fraction of    * Recent funding increases for
important investment in research.      what’s been applied over time             Alzheimer’s research have led
These funding increases have           to address other major diseases.          to significant scientific progress
enabled significant advances in        It is vitally important that NIH          toward understanding what
understanding the complexities of      continues to build upon these, and        causes the disease, as well as
Alzheimer’s and have been critical     many other, promising research            developing interventions that
to progress toward the primary         advances. Increased funding would         may prevent and treat it.
research goal to effectively           enable scientists to conduct more       * This investment has helped
treat and prevent Alzheimer’s by       inclusive, efficient, and practical       diversify the research
2025. This research investment         clinical trials; increase knowledge       pipeline and has been crucial
has led to the Food and Drug           of risk and protective factors in         to expanding additional targets
Administration (FDA) approval          individuals and across diverse            beyond beta-amyloid, resulting
of PET scans to identify two           populations; discover better              in more shots on goal.
biomarkers that help clarify an        biomarkers to detect disease
Alzheimer’s diagnosis and FDA is       and monitor treatment response;         * However, much work remains
currently reviewing an application     pursue a precision medicine               to be done for the progress
for cerebrospinal fluid. Biomarkers    approach to detect the disease            this disease requires.
are essential for identifying early    earlier and tailor treatment plans
                                       to an individual’s unique symptoms      * Continued and sustained
signs of the disease, before an
                                       and risk profile; and leverage            investment is needed to develop
individual has cognitive damage
                                       emerging digital technologies             a better understanding of how
from dementia, and for developing
                                       and big data to speed discoveries.        and why Alzheimer’s affects
effective ways to prevent and treat
                                       Congress must continue its                diverse communities in different
the disease. A simple blood test for
                                       commitment to the fight against           ways; increase knowledge of
Alzheimer’s is also closer than ever
                                       Alzheimer’s by increasing                 risk and protective factors in
before — breakthrough research
                                       funding for Alzheimer’s research          individuals across all populations;
has found that specific markers in
                                       at NIH by an additional                   and discover better biomarkers
the blood may be able to detect
                                       $289 million in FY22.                     to detect the disease and
changes in the brain 20 years
                                                                                 monitor treatment response,
before Alzheimer’s symptoms
                                                                                 among many other important
occur. In addition to these great
                                                                                 research priorities.
advances, there is a drug under

                                                                                 2021 ISSUES AND PRIORITIES            25
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