ADVOCATES GUIDE 2021 - Alzheimer's Impact Movement
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2021 ADVOCATES GUIDE
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
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
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.
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
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.
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
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
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
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 10LEGISLATIVE 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 112021 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 122021 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 13FACTSHEET
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 15COMPREHENSIVE 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 PRIORITIESFACTSHEET
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 19EQUITY 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 20EQUITY 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 21EQUITY 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 22EQUITY 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 23FACTSHEET
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 25You can also read
