Part 3 – Rand Corp Presentation and public comments

Part 3 –  Rand Corp Presentation and public comments


>>SO NOW WE’RE GOING TO MOVE ON AND WE’RE
GOING TO HEAR FROM LISA AND ROB ON THE HEALTHY AGING ROAD MAP.
>>THANK YOU.>>ALL RIGHT.
AND LISA, YOU HAVE THE CLICKER. I’M IN CONTACT WITH YOU, THAT WILL WORK WELL.
WE’LL LET YOU CATCH UP. WE’RE GOING TO MOVE QUICKLY THROUGH SOME SLIDES
IN THE HALF HOUR WE HAVE TO GO THROUGH WHAT I FIND IS AN EXCITING TOPIC.
THANK YOU FOR THE OPPORTUNITY TO PRESENT THIS. THE FIRST SLIDE, GO AHEAD TO ONE, THE CONTEXT
FOR THIS, HOWEVER TO YOUR POINT YOU JUST MADE, LAURA, HOWEVER WE ESTIMATE THIS AT DIFFERENT
TIMES, THE CLEAR POINT IS THAT BOTH IN TERMS OF COST AND IN TERMS OF NUMBER OF PEOPLE AFFECTED
ALZHEIMER’S OR OTHER DEMENTIAS IS A VERY, VERY LARGE PROBLEM TO DEAL WITH.
AND IT REQUIRES A LOT OF WAYS TO DEAL WITH THAT.
ON THE NEXT SLIDE YOU’LL SEE THAT ONE OF THOSE WAYS WE’VE TALKED ABOUT OFTEN IN THIS CONTEXT
BUT IT PREDATES THE NATIONAL ALZHEIMER’S PROJECT ACT IS HEALTHY BRAIN INITIATIVE AT THE CDC,
PARTNERS WITH CDC, ALZHEIMER’S ASSOCIATION AND MEMBERS AND CHAMPIONS OF CONGRESS.
CONGRESS ITSELF AS APPROPRIATED FUNDS IN 2005 INITIALLY.
AND THE PURPOSE IS TO ADVANCE COGNITIVE HEALTH AS A CENTRAL PART OF THE PUBLIC HEALTH PRACTICE.
A NOTE ON THAT FOR THOSE WHO WORKED WITH OTHER CHRONIC DISEASES YOU OFTEN SEE HOW IMPORTANT
THAT PUBLIC HEALTH FRAME IS, AS YOU DEAL WITH THOSE DISEASES, FOR INSTANCE WITH CANCER,
MANY EXAMPLES THAT SPRING TO MIND TO TAKE ONE CONTEXT.
THAT HASN’T BEEN DONE AS MUCH, THE PUBLIC HEALTH FRAME, SQUARELY FOCUSED AT THAT PERSPECTIVE.
IN 2007, THE FIRST REPORT WAS RELEASED WITH PASSAGE OF NAPA IN THE FIRST PLAN, TO HARMONIZE
THE APPROACH OF NAPA, THE PLAN WITH THE SECOND ROAD MAP IN 2013 WAS DONE, AND WE’RE LOOKING
AHEAD TO THE 2018, THIS YEAR, FOR THE NEXT RELEASE ON THE FIVE YEAR SCHEDULE.
SO WITH THE NEXT SLIDE, LISA, I’LL TURN IT OVER TO YOU.
>>THANK YOU, ROB. SO, WE’RE VERY PROUD TO RELEASE AND ANNOUNCE
THIS MONTH OUR NEW ROAD MAP FROM 2018 TO 2023. AND REALLY AS ROB INDICATED, THE WHOLE PURPOSE
OF OUR DOCUMENTS IS TO TRY TO INTEGRATE COGNITIVE FUNCTIONING AND THAT’S BRAIN HEALTH, ASSISTANCE
AND NEEDS FOR PEOPLE WHO ARE HELPING A PERSON WHO IS LET ME SAY THAT AGAIN.
BRAIN HEALTH, GENERAL BRAIN HEALTH, HEALTHY BRAINS MAINTAINING YOUR BRAINS FOR PEOPLE
WHO HAVE OR ARE POTENTIALLY GOING TO HAVE A COGNITIVE IMPAIRMENT MOVING FORWARD AND
ALSO FOR THEIR CAREGIVERS. LOOKING BROADLY, THE THIRD IN A SERIES OF
DOCUMENTS, REALLY ARE DESIGNED TO INTEGRATE THIS INTO PUBLIC HEALTH PRACTICE, AND TRULY
DESIGNED FOR STATE AND LOCAL PUBLIC HEALTH OFFICIALS.
AND WE HAVE A SERIES, A PROCESS I’LL GO THROUGH IN A MINUTE, TO DESCRIBE HOW WE DEVELOP THIS
DOCUMENT. BEFORE I DO THAT, I WANT TO HIGHLIGHT SOME
OF OUR SURVEILLANCE ACCOMPLISHMENTS. A FEW MINUTES AGO IN THE UPDATES I TALKED
ABOUT SOME OF THE DATA THAT CDC COLLECTS. THIS GRAPHIC SHOWS YOU, THE REASON I’M SHOWING
YOU, THIS IS ONE OF OUR BIG SUCCESSES FROM OUR ROAD MAP SERIES.
SO, ONE OF THE BIG EMPHASIS IN THE FIRST ROAD MAP AND SECOND ROAD MAP WAS TO INCREASE SURVEILLANCE,
INCREASED SURVEILLANCE RELATED TO COGNITIVE DECLINE AND CAREGIVING.
WE’VE BEEN ABLE TO DO THIS. IT’S NOT BEEN EASY.
IT’S NOT CHEAP. AND IT IS VERY, VERY LABORIOUS FROM WORKING
WITH INDIVIDUAL STATES TO GET THEM TO RECOGNIZE THE IMPORTANCE OF THESE ISSUES AS WELL AS
GETTING THEM TO PUT IT ON THEIR SURVEILLANCE SYSTEMS, AND THERE’S THE ANALYSIS AND I’M
PUTTING IN A PROPOSAL RIGHT NOW FOR 2021 DATA SUBMISSION SO EVERYTHING IS DONE MULTIPLE
YEARS IN ADVANCE. WE’RE PROUD AS YOU CAN SEE HERE TO SEE THE
UPTAKE OF THE COGNITIVE DECLINE MODEL. ON THE RIGHT SIDE YOU CAN SEE THE CAREGIVER
MODULE, MORE INFORMATION TO COME BASED ON THAT.
I GAVE YOU THE INFOGRAPHICS AND THEN ON THE RIGHT HAND SIDE YOU CAN SEE OUR DATA PORTAL
WHICH HAS THAT FREE DOWNLOADABLE INFORMATION. I ALSO WANT TO HIGHLIGHT MUCH OF THE WORK
THAT WE DO IS IN COLLABORATION WITH THE ALZHEIMER’S ASSOCIATION, THEY ARE COMMITTED TO USING THE
DATA TO EDUCATE PUBLIC HEALTH LEADERS AND KEY AUDIENCES, YOU CAN SEE THE PRODUCTS THEY
PRODUCE AS WELL. WE PRODUCE INFOGRAPHICS, BUT WE CONDUCT STATISTICAL
ANALYSIS FOR THEM AND PROVIDE THEM THE DATA SO TO SPEAK AND THEN THEY TAKE THAT INFORMATION
AND DEVELOP AGGREGATED FACTSHEETS AND STATE SPECIFIC FACTSHEETS FOR COGNITIVE DECLINE
AND CAREGIVER MODULE. THEY USED THIS TO EDUCATE CHAPTERS, RAISE
AWARENESS MANY TIMES THROUGH MEDIA AS WELL.>>A FEW POINTS ON THE RIGHT GROWTH HERE IN
TERMS OF WHAT WE’RE SEEING WITH THE EMBRACE OF ACTION ITEMS IN THE CURRENT ROAD MAP
IMPLEMENTED IN AGGREGATE, REPRESENTS AN FY 18, 40 STATES.
NEXT SLIDE, MOST RECENTLY FOR 2015 TO 17, YOU’LL SEE THE BREAKDOWN, LARGELY THE ACTION
TAKING PLACE AT THE STATE LEVEL AS YOU SEE REPRESENTING THOSE BAR CHARTS ALSO LOCAL,
TRIBAL AND OTHER IMPORTANT CATEGORIES. AND OBSERVATION ABOUT THIS, THE FACT AS LISA
WAS ALLUDING TO, THIS IS AN EDUCATIONAL PROCESS AS WELL, OFTEN AS WE WORK IN VARIOUS STATES,
AND WE WORK WITH DEPARTMENTS OF AGING AND ALSO PUBLIC HEALTH, IT’S COMMON THAT THE PUBLIC
HEALTH DEPARTMENT IN MANY STATES WON’T NECESSARILY RECOGNIZE THIS AS SOMETHING I WAS PROACTIVELY
UNDER AGENDA UNTIL THEY START TO UNDERSTAND THIS IS ALSO ANOTHER CHRONIC DISEASE THAT
OUGHT TO BE THOUGHT ABOUT IN A PUBLIC HEALTH CONTEXT, SO THAT’S WHAT YOU SEE HERE IS PART
OF THAT PROCESS. THE OTHER CHALLENGE IS RESOURCES TO DO THAT
WORK. SO WITH THAT, I’LL ADVANCE THE NEXT SLIDE.
IT IS TIME FOR AN UPDATE. THE FIVE YEARS ACTUALLY GOES PRETTY QUICKLY,
LISA, WOULDN’T YOU SAY, WHEN YOU’RE WORKING ON THESE ITEMS BUT IT BECOMES APPARENT IN
THE PROCESS AS WE HAVE MORE THINGS TO SAY AND EVIDENCE BASED DEVELOPING THAT WE HAVE
NEW OPPORTUNITIES WE WANT TO HIGHLIGHT AND KEEP THIS IN THAT SENSE RELATIVELY EVERGREEN
IN FIVE YEAR INCREMENTS. SO WE’VE BEEN UNDERWAY WITH THE UPDATING PROCESS.
IT STARTS WITH EXAMINING THE CURRENT ROAD MAP, ACTION ITEMS THAT HAVE BEEN TAKEN, NEW
OPPORTUNITIES, AND WE DO THAT OFTEN BY ENGAGING THIS PROCESS, EXPERTS FROM A WIDE RANGE OF
PERSPECTIVES. AND SO ON THE NEXT SLIDE YOU’LL SEE JUST SOME
QUICK SNAPSHOTS OF PEOPLE THAT WERE INVOLVED, 143 PRACTITIONERS, SUBJECT MATTER EXPERTS,
WORKING, WE BROKE THAT DOWN INTO DIFFERENT WORK GROUPS AND VIRTUAL CONSULTATIONS AS YOU’LL
SEE ON A NUMBER OF TOPICS, FEDERAL LIAISONS IN THIS PROCESS, I’LL MENTION A FEW, ELLEN
BLACKWELL, BELINDA KELLY, JANE TILLY, JOAN WEISS FROM HRSA, AND BRUCE IS ESPECIALLY INVOLVED,
BRUCE FINKE, ROADMAP ADAPTED FOR INDIAN COUNTRY. LISA?
>>WHY DOES IT GO FORWARD FOR HIS SLIDES AND NOT MINE?
[LAUGHTER] THERE WE GO.
SOMEONE’S TRYING TO TELL ME SOMETHING. DEVELOPING THE ROAD MAP WE HAD SEVERAL KEY
DECISIONS TO MAKE THROUGHOUT THE PROCESS. WE WANTED TO CONTINUE TO KEEP OUR FOCUS ON
STATE AND LOCAL AND PUBLIC HEALTH AGENCIES, COLLABORATING WITH PARTNERS THROUGH AGING,
HEALTH CARE, ACADEMIA, AS WELL AS OTHER SECTORS. WE ALSO WANTED TO KEEP THE PUBLIC HEALTH FRAMEWORK.
CDC IS A PUBLIC HEALTH AGENCY, AND IT IS OUR MISSION TO REALLY ADVANCE PUBLIC HEALTH AND
PUBLIC HEALTH EFFORTS TO TRULY MAKE AN IMPACT IN AMERICANS’ LIVES, WE WANT TO MAKE SURE
THIS DOCUMENT WOULD CONTINUE TO DO THAT MOVING FORWARD.
ONE OTHER THING THAT WE THOUGHT WAS IMPORTANT TO DO IN THIS THIRD ROAD MAP IS REDUCE THE
NUMBER OF ACTION ITEMS. THE SECOND ROAD MAP HAD 35 ACTION ITEMS.
YES, IT’S A FIVE YEAR PERIOD BUT 35 WAS QUITE AMBITIOUS.
SO, FOR THIS NEXT FIVE YEAR PERIOD WITH THE CONSULTATION OF ALL THE PEOPLE THAT WE THANKED
IN THE LAST SLIDE, WE WERE ABLE TO REDUCE THE NUMBER OF ITEMS DOWN TO 25.
NOW, WHEN WE SHOW THEM TO YOU YOU’LL SEE SOME OF THE WAYS WE REDUCE DOWN TO 25, PROBABLY
MERGING TWO AND CALLING IT ONE, NO ONE IN THIS ROOM HAS EVER DONE THAT [LAUGHTER]
BUT IT’S GOT US TO 25 ACTION ITEMS. WE WANTED TO INTEGRATE DEMENTIA CARE GIVES
INTO THE ROAD MAP, MORE SIGNIFICANTLY THAN IT WAS IN THE PREVIOUS ROAD MAP AS WELL AS
GENERATING EVIDENCE FOR ACTION MOVING FORWARD. SO THIS IS OUR ROAD MAP THAT WE’RE VERY PROUD
OF. WHAT YOU RECEIVE TODAY IS A HANDOUT THAT IS
THE EXECUTIVE SUMMARY, I DID HAVE ONE, THE EXECUTIVE SUMMARY AND THEN IT HAS THE COMPLETE
25 ACTION ITEMS ON THE BACK SIDE OF IT. SO THE ROAD MAP USES THE ESSENTIAL SERVICES
OF PUBLIC HEALTH, AS YOU CAN SEE ON THIS WHEEL, ALSO ON YOUR HANDOUT.
SO SOME THINGS WE WERE FOCUSING ON WAS CONTINUING TO ASSURE COMPETENT WORKFORCE, MAKING SURE
PEOPLE WERE TRAINED IN THE TOPIC AREAS THAT WERE MOST RELEVANT HERE, PEOPLE WERE TRAINED
IN BRAIN HEALTH, PEOPLE WERE RECOGNIZING CAREGIVERS AND CAREGIVERS’ HEALTH AND NEEDS OF CAREGIVERS
AS WELL AS RECOGNIZING DEMENTIA AND I’M USING THAT TERM VERY BROADLY FOR ALL DIFFERENT TYPES
OF COGNITIVE IMPAIRMENT. THE NEXT SECTION IS MONITORING AND EVALUATE.
AS A PUBLIC HEALTH AGENCY THAT’S SOMETHING THAT WE FEEL VERY STRONGLY ABOUT.
IS TO REALLY UNDERSTAND, GET A PULSE OF WHAT’S GOING ON IN OUR NATION.
TO TRY TO UNDERSTAND THE IMPACT AND TO SEE IF OUR INTERVENTIONS ARE MAKING A TRUE DIFFERENCE.
SO WE ABLE TO DO THAT AS WELL. WE WANT TO ALSO CONTINUE TO EDUCATE AND EMPOWER
THE NATION. SO WHEN I SPOKE EARLIER, I TALKED ABOUT LITTLE
MORE THAN HALF OF PEOPLE WHO REPORTED A CHANGE IN THEIR COGNITIVE FUNCTIONING IN THE PAST
YEAR HAVE ACTUALLY TALKED TO A HEALTH CARE PROVIDER, ONE AREA WE NEED TO EDUCATE THE
NATION. ONLY ONE EXAMPLE.
THERE ARE MANY MORE RELATED TO BRAIN HEALTH, AND ALSO RELATED TO CAREGIVING ISSUES.
AND THEN LASTLY, BUT NOT LEAST, BEING ABLE TO DEVELOP POLICIES AND MOBILIZING PARTNERSHIPS.
ALL OF US, THIS COMMITTEE THAT WE’RE ALL WORKING AND SITTING IN TODAY, IS THE TESTAMENT OF
HOW WE NEED TO WORK TOGETHER, HOW WE NEED PARTNERSHIPS, HOW WE NEED RELATIONSHIPS, TO
TRULY MAKE A DIFFERENCE IN THE HEALTH, WELL BEING AND INDEPENDENCE OF OLDER ADULTS IN
THE UNITED STATES. AND WE HAD GUIDING PRINCIPLES, WE WERE CONSIDERING
HEALTH EQUITY THROUGHOUT. WE WANT TO TRY TO ELIMINATE AS MANY DISPARITIES
AS WE POSSIBLY CAN. I MENTION COLLABORATING.
ALSO LEVERAGING RESOURCES FOR SUSTAINED IMPACT. WE’VE ALL SEEN VERY DIFFERENT PROJECTS THROUGH
THE YEARS HAVE COME IN, DONE AN INTERVENTION, WOW, THERE’S A PROJECT OVER INTERVENTION OVER
IMPACT GONE. SO WE WANT TO CONTINUE WITH THE PUBLIC HEALTH
PERSPECTIVE AND ALSO LOOK FOR WAYS TO SUSTAIN AND MAINTAIN THE IMPACT MOVING FORWARD.
WE ALSO ARE RECOGNIZING THE WHOLE LIFE COURSE PERSPECTIVE.
AND REALLY THIS WILL ALLOW US TO MITIGATE SOME OF THE IMPACT AND BURDEN OF ALZHEIMER’S
AND OTHER DEMENTIAS, TRULY A ROLE PUBLIC HEALTH CAN FILL.
WE KNOW AT THIS POINT WE’RE TRYING TO FIND EVIDENCE BASED WAYS TO PREVENT ALZHEIMER’S
DISEASE AND OTHER DEMENTIAS, WAYS FOR CURING, WAYS FOR TREATMENT, TRY TO IDENTIFY THOSE
CAUSES. BUT UNTIL WE DO THAT, PUBLIC HEALTH HAS A
UNIQUE NICHE TO FILL FOR THOSE I’LL SAY NEARLY 6 MILLION PEOPLE WITH THE DISEASES AND THEIR
FAMILY MEMBERS AND CAREGIVERS MOVING FORWARD.>>SO IN TERMS OF THE CORE TOPIC AREAS, AND
WE BROKE THIS DOWN IN TERMS OF THE WORK GROUPS AS WELL THAT PURSUED THIS WORK, YOU’LL SEE
THEM LISTED THERE. WITHOUT READING THROUGH THAT LIST AS YOU SCAN
THEM, ON THE SCREEN, A FEW POINTS ABOUT THAT. FIRST OF ALL, THIS GOES TO A BROADER POINT
ABOUT THE THEME ABOUT PUBLIC HEALTH AND HOW IS THAT SAID.
SOMETIMES WE ARBITRARILY REPORT YOU MIGHT SAY, WELL, CDC, LET’S HAVE A REPORT OUT WITH
SUPPORTS AND SERVICES. AS YOU’LL SEE HERE, THE PUBLIC HEALTH APPROACH
AND FORUMS, THE BROAD SPECTRUM OF WHAT WE’RE DOING ACROSS THE PLAN, IT DOES THAT IN A DISTINCT
WAY THAT ISN’T TO DUPLICATE EFFORTS IN DIFFERENT WAYS SUCH AS CLINICAL SERVICES WHEN YOU TALK
ABOUT EARLY DETECTION AND DIAGNOSIS BUT INSTEAD TO USE PUBLIC HEALTH APPROACH TO DRIVE THOSE
ENCOUNTERS THAT WILL LEAD TO WHAT A POPULATION NEEDS.
OFTEN FOR ANY GIVEN OBJECTIVE, MANY OF THESE THINGS ARE USED IN CONCERT, OFTEN IT STARTS
WITH COLLECTION OF DATA AND AS YOU HEARD IN DIFFERENT CONTEXT REPORTED BY SARAH WITH AARP
FOR INSTANCE KEEPING CAREFUL EYE ON OFFENDENS. WHEN WE HAVE SUFFICIENT EVIDENCE TO MOVE AHEAD
WITH CERTAIN MESSAGES. THAT’S HOW THIS BLENDS TOGETHER.
ON THE NEXT SLIDE YOU’LL SEE US WALK, LISA AND I, WALK THROUGH TEN KEY ITEMS WE’RE FOCUSED
ON AT THE OUTSET, PRIMED AS WE SPOKE WITH LEADERSHIP COMMITTEE ABOUT THIS.
YOU’LL SEE THE STAMP AT THE BOTTOM OF EACH SLIDE, IF YOU WANT TO KEEP TRACK, ONE YOU
MAY PUT AROUND AS YOU SAW IN LISA’S FRAMEWORK, CONSIDER THESE EDUCATE AND EMPOWER OBJECTIVES.
SO JUST TO HIGHLIGHT THESE QUICKLY, THE FIRST ONE HERE, I HIGHLIGHT HERE, THINK ABOUT THIS
AS TRYING TO DRIVE THE DISCUSSION WITH HEALTH PROFESSIONALS, IN TERMS OF MEMORY COMPLAINTS
WE HEARD ABOUT EARLIER AND RELATIVELY FEW PEOPLE WHO HAVE THESE MEMORIAL RIP COMPLAINTS
BUT YET ARE STILL NOT TALKING TO HEALTH PROFESSIONALS, THAT’S HOW YOU CAN THINK ABOUT THIS FIRST
RECOMMENDATION. SECOND ONE IS MAKING SURE WE INTEGRATE THEN
THE BEST AVAILABLE EVIDENCE INTO MESSAGING. AS I MENTIONED JUST A MOMENT AGO.
AND THEN THAT AS WE THINK ABOUT THIS MESSAGING, THE THIRD ITEM LISTED THERE, TO RECOGNIZE
THE IMPORTANT ROLE THAT CAREGIVERS PLAY, ALSO THE IMPORTANCE FOR CAREGIVERS IN MINDING THEIR
OWN HEALTH AND WELL BEING AS THEY PARTICIPATE IN THIS IN THEIR CRUCIAL WAY.
AND THE FOURTH ONE HERE IS THAT WE HAD PROVIDING, ENCOURAGING, IMPROVING ACCESS TO EVIDENCE
INFORMED INTERVENTIONS. AND THE NEXT SLIDE YOU’LL SEE TWO LISTED UNDER
THE CONCEPT OF POLICIES AND PARTNERSHIPS. AGAIN, THESE ARE SOMEWHAT ARBITRARY, THINK
ABOUT THEM IN DIFFERENT WAYS, BUT THE FIRST ONE HERE IS INFORMING ENCOURAGING PARTNERSHIPS
AROUND PROMOTING THE USE OF EFFECTIVE INTERVENTIONS AND BEST PRACTICES, THE WAY THAT CAN BE DONE
TOGETHER FROM VARIOUS PERSPECTIVES. AND THEN THE SECOND ONE IS FOCUSED ON EDUCATING
POLICYMAKERS, WHICH IS CRUCIAL, ABOUT THE ROLE, WHAT NEEDS TO BE DONE TO CONFRONT ALZHEIMER’S
AND RELATED DEMENTIAS USING DATA FOR INSTANCE LIKE THOSE WE HAVE DEVELOPED THROUGH PURPOSE.
WITH THAT, LISA, BACK TO YOU.>>ALL RIGHT.
I’M GOING TO TALK ABOUT THE WORKFORCE. THE FIRST ACTION ITEM HERE WE’RE TALKING ABOUT
REALLY MAKING SURE THAT WE CAN EDUCATE PUBLIC HEALTH, AND HEALTHCARE PROFESSIONALS ON SOURCES
OF RELIABLE INFORMATION ABOUT BRAIN HEALTH AND REALLY HOW TO USE THAT INFORMATION TO
INTEGRATE INTO IT WAYS MEANINGFUL FOR PEOPLE’S LIVES.
W 3 IS LOOKING AT ONE AGAIN EDUCATING PEOPLE ON THE BEST AVAILABLE EVIDENCE RELATED TO
DEMENTIA, DEMENTIA CAREGIVING, PUBLIC HEALTH ROLES, SOURCES OF INFORMATION, AND REALLY
A VARIETY OF DIFFERENT THINGS THAT PUBLIC HEALTH CAN DO.
AND THE LAST ONE THAT WE’RE HIGHLIGHTING HERE W 4 IS REALLY THINKING ABOUT CONTINUING EDUCATION,
SO NOT JUST TRAINING NEW HEALTHCARE PROFESSIONALS AND PROVIDERS BUT FOR THOSE THAT ARE OUT WORKING
AND PRACTICING WITH COLLEAGUES AT THE VA HAS TALKED ABOUT, WE WANT TO MAKE SURE WE’RE CONTINUING
TO TRAIN HEALTHCARE PROVIDERS AND I’M USING THAT TERM VERY BROADLY, THAT DOESN’T MEAN
SOMEONE NECESSARILY THAT HAS AN M.D., CAN BE A COMMUNITY HEALTH WORKERS, NURSE HEALTH
PRACTITIONERS, PUBLIC HEALTH PRACTITIONERS, MAKING SURE WE’RE CONTINUING TO KEEP THEM
CURRENT ON LATEST SCIENCE AS WE’RE MOVE ARE FORWARD FOR THIS TOPIC MATTER.
YOU’VE PROBABLY BEEN TIRED OF HEARING ME TALK ABOUT DATA, MONITORING AND EVALUATE ARE DEFINITELY
VERY IMPORTANT. SO WITH M 1 WE’RE LOOKING AT GETTING STATES
TO IMPLEMENT THE COGNITIVE DECLINE MODULE IN 19 AND 20 AND CARE GIVING MODULE IN 21
AND 22. THE REASON WE’RE DOING THIS OVER A TWO YEAR
CYCLE, IT’S VERY COSTLY AND CHALLENGING FOR STATES TO ADD QUESTIONS ON A SURVEY THAT HAS
VERY LIMITED SPACE, AND SO IT HELPS THEM PLAN IF THEY CAN PLAN AND CYCLE IT THROUGH THEIR
ADMINISTRATION OF THE SURVEY. AND THEN LAST REALLY TO GET DIFFERENT GROUPS
TO USE THIS DATA AND CONTINUING TO USE THE SURVEILLANCE DATA AND SURVEILLANCE STRATEGIES
FOR PROGRAM IMPROVEMENT MOVING FORWARD. SO THOSE WERE THE IDENTIFIED SHALL WE SAY
TOP TEN ITEMS FOR IMPLEMENTATION. THE REASON THAT WE CHOSE TO HAVE A TOP TEN
THIS YEAR IS BECAUSE THE PREVIOUS ROAD MATCHES WHERE DO WE START, WE HAVE LIMITED RESOURCES,
TIME, STAFF, ON AND ON. LOTS OF PEOPLE WHO NEED HELP AND NEEDS SERVED.
LEADERSHIP COMMITTEE AND OTHER VOLUNTEERS TOO LOOKED AT THE LIST OF THE TOP 25 AS A
STARTING POINT. THEY ARE NOT THE MOST IMPORTANT.
BUT THEY ARE ACTIONABLE. THEY ARE DOABLE.
AND THEY WILL BE ABLE TO GIVE PEOPLE A STARTING POINT AND MAKE A DIFFERENCE IN LIVES OF CONSTITUENTS
THAT DIFFERENT GROUPS ARE SERVING. WE’RE VERY PROUD THAT WITH THIS THIRD ROAD
MAP WE’RE ADDING A VERSION FOR A ROAD MAP FOR INDIAN COUNTRY.
SO WE HAVE LEARNED AND WE HAVE LISTENED BASED ON THE FIRST TWO ROAD MAPS THAT OUR ROAD MAP
DOESN’T RESONATE WITH ALL GROUPS, AND SO IN AN EFFORT TO TRY TO MAKE IT RESONATE BETTER
WITH CERTAIN GROUPS OR INDIAN COUNTRY WE’VE WORKED WITH TRIBAL LEADERS INCLUDING BRUCE,
BRUCE FINKE, AS WELL AS OTHER FOLKS FROM IHS AND OTHER ORGANIZATIONS TO REALLY MODIFY SOME
OF THE TERMINOLOGY AND DEVELOP A SHORTER ROAD MAP THAT WILL HELP TARGET AND BE MORE APPLICABLE
TO INDIAN COUNTRY, SO THAT WILL BE OUT THIS FALL AND WE WILL SHARE THAT WITH THE GROUP
THIS FALL AS WELL. SO WE’RE DOING A PHASED ROLLOUT WITH THE ROADMAP,
SO JULY AND AUGUST PEOPLE ARE GETTING SNEAK PEEKS LIKE YOU ALL DID TODAY WITH OUR ONE
HANDED OR ONE PAGE HANDOUT FOR THE EXECUTIVE SUMMARY.
THAT IS AVAILABLE ON THE ALZHEIMER’S ASSOCIATION WEBSITE AS WELL AS CDC’S WEBSITE SO WE’VE
TALKED ABOUT IT AS HEALTHY AGING SUMMIT, TALKED ABOUT IT AT AAIC, I’VE SHARED IT WITH YOU,
AND THEN I’M GOING TO SHARE IT WITH LEAD, IN A COUPLE WEEKS.
WE’RE MOVING FORWARD AND GETTING OUR MARKETING STRATEGIES COMPLETE.
OCTOBER AND NOVEMBER ALL OF THE ROADMAP, THE ACTUAL FULL PAGE ROADMAP, I CAN’T SAY IF IT
WILL BE 25 PAGES LIKE SARAH’S ABLE TO KEEP HER DOCUMENTS TO, BUT IT WILL BE A LITTLE
BIT THICKER THAN THE ONE PAGER THAT YOU HAVE AS WELL AS THE INDIAN COUNTRY ROADMAP AND
SOME IMPLEMENTATION GUIDES WILL BE DEVELOPED TOO AND WE’LL SHARE THOSE WITH YOU IN THE
FALL. SO, WHAT CAN PUBLIC HEALTH DO?
I STOLE ONE OF ROB’S NO, THAT WAS MY SLIDE. WHAT CAN PUBLIC HEALTH DO?
WHAT WE’RE TRYING TO THING ABOUT FROM A PUBLIC HEALTH PERSPECTIVE, KEEP AWARENESS, RAISE
AWARENESS, FOR PEOPLE TO EDUCATE PUBLIC HELD AND HEALTHCARE PROFESSIONALS AND CONSTITUENT
GROUPS. AND I’LL TURN IT OVER TO ROB.
>>A FEW OTHER QUICK NOTES AS WE WRAP UP FROM AGING NETWORK MANY OF WHAT YOU MAY TERM MEMBERS
OF THE NETWORK PARTICIPATE IN THIS PROCESS, LEADERSHIP COMMITTEE AND OTHER EXPERTS WE
CONSULTED, AND IDEAS THAT EMERGED FROM THOSE CONVERSATIONS WERE RAISING AWARENESS ABOUT
THE ROADMAP AND RICH COLLABORATION THAT CAN TAKE PLACE NOT JUST AT THE FEDERAL LEVEL AS
WE HAVE HERE BUT IN EACH AND EVERY STATE BETWEEN DEPARTMENTS OF AGING AND PUBLIC HEALTH, AND
ESTABLISHING SHARED GOALS AND FIGURING OUT HOW TO WORK TOGETHER IN A WAY THAT DOES NOT
DUPLICATE EFFORT. ON THE NEXT SLIDE YOU SEE MANY WAYS THAT PARTNERS
IN GENERAL CAN DO SO, THE STRAIGHTFORWARD BUT VERY IMPORTANT TO THE SUCCESS OF THIS
EFFORT, AND WE ASK YOU ALL TO PLEASE HELP US WITH IT.
AND THEY INCLUDE FUNDAMENTALLY PROMOTING THE ROADMAP, INFORMING POLICYMAKERS, MAKING SURE
THAT WE’RE TEED UP TO BE SUCCESSFUL AND TRACK THOSE RESULTS TO INFORM OUR PROCESS THROUGHOUT
THE NEXT FIVE YEARS, AND AS WE LOOK AHEAD.>>RIGHT.
SO IN SUMMARY WE THANK YOU ALL FOR LISTENING. AND HOPE THAT YOU CAN USE THE ROADMAP MOVING
FORWARD. WE’RE GLAD TO PROVIDE ADDITIONAL COPIES, BUT
REALLY OUR INTENT IS TO HELP OUR PARTNERS CHART THE COURSE FOR A DEMENTIA PREPARED FUTURE.
WE HOPE DOING THIS AND DEVELOPING THIS NEW ROAD MAP WILL ALLOW THAT TO HAPPEN EVEN SOONER
OR AT LEAST DURING THE NEXT FIVE YEARS. AND THEN FOR MORE INFORMATION CONTACT CDC’S
WEBSITE OR ALZHEIMER’S ASSOCIATION WEBSITE. AND I WILL TURN IT OVER TO ROB FOR SOME ADDITIONAL
COMMENTS.>>BEFORE YOU GO ON, MAY I JUST ASK A QUESTION?
OR MAYBE IT’S A RECOMMENDATION. THIS IS AMAZING WORK.
AND VERY EXCITING TO SEE IT UNFOLD. I WAS JUST STRUCK BY A SURE COMPETENT WORKFORCE
AND WOULD LOVE TO SEE THE MATERIALS INTEGRATED INTO THE EDUCATION OF HEALTH PROFESSIONAL
STUDENTS AND NOT WAIT UNTIL PEOPLE ARE OUT OF SCHOOL.
SO I REALLY THINK OUR EFFORT HAS TO BE INTEGRATION INTO EXISTING OKAY, GOOD.
I THINK>>YES, A DIFFERENT KIND OF PARTNERSHIP IN
A WAY, WE HAVE TO EXPAND TO HAVE ALL THE HEALTH PROFESSIONS REPRESENTED SOMEHOW AND I THINK
THE MATERIALS COULD VERY WELL BE INTEGRATED.>>WE DEFINITELY AGREE.
WE DON’T WANT TO MISS THAT OPPORTUNITY. WE WANT TO TRAIN PEOPLE WHILE THEY ARE IN
THEIR FORMATIVE TRAINING PROFESSIONAL CAREERS AS WELL TOO.
AND WE HAVE COLLEAGUES AT DIFFERENT AGENCIES WHO DEVELOPED COURSE MATERIAL AND WE’RE WORKING
WITH HRSA TO HELP GET CONTINUING EDUCATION MATERIALS, YES, FOR PEOPLE THAT ALREADY EXIST
AND IN PARTNERSHIP WITH THE ALZHEIMER’S ASSOCIATION DEVELOPED A PUBLIC HEALTH CURRICULUM DESIGNED
FOR PUBLIC HEALTH STUDENTS AS WELL. THAT’S NOT TO SAY THAT’S ALL, BUT THERE’S
PLENTY MORE THAT NEEDS TO BE DONE AND WE DO NEED TO DO A BETTER JOB GETTING INTEGRATED
INTO OTHER CURRICULUMS OF FUTURE HEALTH PROFESSIONALS, IN ADDITION TO TRAINING THOSE WHO ARE CURRENT
HEALTH PROFESSIONALS.>>YES.
THANK YOU.>>AND LISA, THAT CURRICULUM THAT WE’RE CONVERTING
WITH YOU, C.E., CAN ALSO BE USED FOR HEALTH PROFESSIONAL STUDENTS.
>>GREAT.>>INTERPROFESSIONAL CURRICULUM.
>>THEN I THINK THE BIG QUESTION IS DISSEMINATION TO ASSURE ASSOCIATIONS AND UNIVERSITIES HAVE
THE INFORMATION IN A WAY THAT THEY CAN USE IT.
>>JUST IN THE FIRST MONTH THAT THAT CURRICULUM WAS ONLINE, WE HAD OVER 8000 HITS.
IT’S BEING USED NATIONALLY AND INTERNATIONALLY BY NOT ONLY HEALTH PROFESSIONALS BUT, YOU
KNOW, LAY EDUCATORS, OR HEALTH EDUCATORS WHO EDUCATE LAYPEOPLE.
>>THANK YOU.>>OVER TO YOU, ROB.
>>THANK YOU. I THINK I’LL BE ABLE TO KEEP US ON TRACK WITH
THE SCHEDULE BY MOVING QUICKLY THROUGH THIS. SO THIS PRESENTATION AS YOU NOTED WITH THE
HANDOVER THE SLIDE JUST FROM THE ALZHEIMER’S ASSOCIATION THAT DEALS WITH FEDERAL LEGISLATIVE
INITIATIVE THAT WE HAVE, I MENTIONED EARLIER WHEN I TALK ABOUT OUR ADVOCACY FORUM, THIS
IS ONE OF OUR PRIORITIES, INTRODUCED LESS THAN A YEAR AGO IN THE HOUSE AND SENATE THE
BILL CALLED THE BUILDING OUR LARGEST DEMENTIA FOR ALZHEIMER’S ACT.
MAYBE CAPITOL HILL, YOU TALKED ABOUT A PUBLIC HEALTH ISSUE THAT MEETS TRADITIONAL CHECK
LIST WHETHER SOMETHING MERITS BEING LOOKED AT AS A MAJOR PUBLIC HEALTH CONCERN, IT CERTAINLY
DOES. HERE JUST QUICKLY, YOU CAN SEE THE BIPARTISAN
STATE AND SENATE SPONSORS, IF YOU LOOK AT THE HOUSE AGAIN THE SAME BIPARTISAN LINEUP,
KEEPING THIS INITIATIVE LIKE EVERY OTHER INITIATIVE ON CAPITOL HILL BUT ALZHEIMER’S AND DEMENTIA
A BIPARTISAN, NON PARTNERSHIP PRIORITY. AND IF YOU LOOK NOW AT THE MAJOR COMPONENTS
OF THE BOLD ACT, THE FIRST IS TO ESTABLISH IN THE PUBLIC HEALTH INFRASTRUCTURE, ALZHEIMER’S
CENTERS OF EXCELLENCE, PROVIDES FUNDING FOR PUBLIC HEALTH DEPARTMENTS ACROSS THE COUNTRY,
AND INCREASES, AGAIN, DATA COLLECTION ANALYSIS AND TIMELY REPORTING.
SO A FEW NOTES ON EACH OF THOSE POINTS. THE FIRST ESTABLISHING CENTERS OF EXCELLENCE
IS FOCUSED ON INCREASING EDUCATION OF PUBLIC HEALTH OFFICIALS, INCLUDING STUDENTS, AS WE
JUST HAD THE DISCUSSION MOMENTS AGO, STRATEGIES FOR REDUCING RISK, PREVENTABLE HOSPITALIZATIONS.
ON THE NEXT POINT THERE IN TERMS OF WHERE THE FOCUS IS, AWARDING COOPERATIVE AGREEMENTS
TO PUBLIC HEALTH DEPARTMENTS TO DO THIS WORK. THAT WOULD BE THE SECOND.
YOU MIGHT SAY THE MOST IMPORTANT AT LEAST IF YOU LOOK IN TERMS OF AUTHORIZATION OF FUNDS,
EMPHASIS OF THIS LEGISLATION, NOT TO BE REDUCTIONISTIC ABOUT IT BUT WHEN WE TALK TO PUBLIC HEALTH
DEPARTMENTS AND STATES THE FIRST THING, IT WON’T SURPRISE ANYBODY TO HEAR THAT WE HEAR
BACK, WE GET IT, BUT WE DON’T HAVE THE RESOURCES TO DO IT.
WE HAVE SO MANY THINGS WE HAVE TO DO, WE’RE STRETCHED SO THING WE DON’T SEE HOW WE CAN
MOVE FORWARD ON IMPORTANT ACTIONS, THIS IS TO ADDRESS THAT, A STEP, IT WILL NOT COMPLETELY
SOLVE THE PROBLEM BUT IT GOES IN THAT DIRECTION TO DOING SO.
CERTAINLY WILL ENABLE MORE ACTION BY PUBLIC HEALTH DEPARTMENTS IN STATES WHICH END LOCALITIES
AND TRIBAL AREAS STRETCHED THIN. FINALLY, I DON’T HAVE TO SAY MUCH MORE BECAUSE
WE’VE BEEN SAYING IT THROUGHOUT, ALSO FOCUSED VERY MUCH ON DATA COLLECTION, TIMELY REPORTING
NOT JUST TO ADVANCE PUBLIC HEALTH AGENDA BUT REALLY TO UNDERLIE THE WORK THAT WE SEE THROUGHOUT
THE NATIONAL PLAN AS WE BETTER UNDERSTAND THE IMPACT OF ALZHEIMER’S AND OTHER DEMENTIAS
ON AMERICA TODAY. SO WITH THAT, I WILL ADVANCE AND THROW IT
BACK TO YOU.>>THANK YOU VERY MUCH.
ANY WE’LL TAKE ONE QUESTION. ANYONE HAVE A QUESTION?
OKAY. IN THAT CASE I’M GOING TO TURN IT OVER TO
JODI, I THINK YOU’RE GOING TO BEGIN, AND I BELIEVE DOES EVERYONE HAVE THE REPORT WHERE
WE SENT>>IT WAS SENT TO EVERYONE.
>>IT WAS SENT TO EVERYBODY. WE THOUGHT IT IMPORTANT TO HAVE JODI AND SOEREN
DISCUSS THEIR REPORT, EVERYTHING TO DO WITH MANY THINGS IN TERMS OF INFRASTRUCTURE AND
DISSEMINATION OF TREATMENT. I’LL TURN IT OVER TO YOU.
>>THANKS, LAURA. I’M JODI LIU, POLICY RESEARCHER AT THE RAND
CORPORATION, AND MY COLLEAGUE SOEREN MATTKE WITH THE UNIVERSITY OF SOUTHERN CALIFORNIA.
THANK YOU FOR HAVING US HERE TO SHARE OUR WORK ON PREPARING THE U.S. HEALTH CARE SYSTEM
INFRASTRUCTURE FOR ALZHEIMER’S TREATMENT AND THANKS TO BIOGEN WHO SUPPORTED SUPPORT.
MANY THERAPIES ARE IN DEVELOPMENT, IN RECENT YEARS GUARDED OPTIMISM THAT A DISEASE MODIFYING
THERAPY FOR ALZHEIMER’S WILL BECOME AVAILABLE HOPEFULLY IN THE NEAR FUTURE.
SOME OF THIS OPTIMISM HAS STEMMED FROM THE SHIFT IN THE TREATMENTS TO FOCUS ON EARLIER
STAGES OF THE DISEASE. AND THIS HAS IMPLICATIONS FOR HOW SUCH A THERAPY
WOULD BE DELIVERED IN THE FUTURE. THE PURPOSE OF OUR STUDY WAS REALLY TO TRY
TO DEMONSTRATE MAGNITUDE OF THE POTENTIAL INFRASTRUCTURE PROBLEMS THAT WOULD COME WITH
TREATING AT EARLIER STAGES OF ALZHEIMER’S DISEASE.
AND WE’RE IN THIS MODELING ANALYSIS THAT WE DID, WE’RE NOT TRYING TO PREDICT WHAT WILL
HAPPEN EXACTLY IN THE FUTURE BUT REALLY TRYING TO JUST QUANTIFY THE SIZE OF THE PROBLEM TO
HELP INFORM DIFFERENT POLICY FACTIONS AND DECISIONS THAT COULD OCCUR NOW.
SO FIRST LET ME START TO TELL YOU A BIT ABOUT OUR CONCEPTUAL FRAMEWORK FOR OUR MODEL.
SO SHOWN HERE IS JUST A SIMPLIFIED DISEASE PROGRESSION GOING FROM NO COGNITIVE IMPAIRMENT
TO MILD COGNITIVE IMPAIRMENT TO ALZHEIMER’S DEMENTIA.
WE’VE TALKED TODAY ABOUT RISK, ABOUT CURE, AND CARE.
AND SO A LOT OF THE PAST TRIALS FOCUSING ON CURES FOR DEMENTIA WITH NOT WORKED OUT LEADING
TO SHIFT ON FOCUSING TO EARLIER STAGES OF DISEASE.
SO THE THERAPY THAT WE LOOK AT IN THE STUDY WE’RE REALLY THINKING ABOUT WAYS TO PREVENT
THE PROGRESSION FROM MCI TO DEMENTIA, AND THIS WOULD BE TREATING PEOPLE WITH MILD COGNITIVE
IMPAIRMENT, POTENTIALLY EVEN EARLIER THAN THAT, BUT REALLY IMPLICATION FOR HOW THIS
KIND OF THERAPY WOULD BE DELIVERED. PEOPLE ARE MCI, IT’S MANY MORE THAN PEOPLE
WITH DEMENTIA NOW, WE’VE HEARD ABOUT 6 MILLION TODAY, PEOPLE WITH DEMENTIA, WE HAVE MANY
MORE PEOPLE WITH MCI. AND MCI CAN BE CAUSED BY DIFFERENT THINGS,
NOT JUST ALZHEIMER’S BUT OTHER RELATED DEMENTIAS AND OTHER CONDITIONS.
SO REALLY THERE WOULD BE A CHALLENGE TRYING TO IDENTIFY WHO ARE THE PATIENTS WITH MCI
DUE TO ALZHEIMER’S TO EVALUATE, DIAGNOSE AND EVENTUALLY TREAT THESE PATIENTS.
AND SO USUALLY THE FIRST STEP WOULD BE TO GET COGNITIVE SCREENING TO DETERMINE IF THERE
ARE SIGNS OF COGNITIVE IMPAIRMENT. THIS COULD BE SOMETHING DONE IN A PRIMARY
CARE SETTING WITH COGNITIVE ASSESSMENT TOOLS. IF THERE IS COGNITIVE IMPAIRMENT A PATIENT
COULD BE SENT TO OR REFERRED TO A DEMENTIA SPECIAL IS, A NEUROLOGIST OR GERIATRIC PSYCHIATRIST,
PART OF THE EVALUATION COULD INCLUDE TESTING FOR AMYLOID IN ORDER TO DETERMINE WHETHER
THE PERSON’S MILD COGNITIVE IMPAIRMENT IS RELATED TO ALZHEIMER’S.
AND THIS IS TYPICALLY DONE WITH A PET SCAN FOR AMYLOID IN THE BRAIN TO DETERMINE WHETHER
THE MCI IS RELATED TO ALZHEIMER’S. SO FOR OUR ANALYSIS WE’RE LOOKING AT SCENARIOS
WHERE TREATMENT IS AVAILABLE IN THE FUTURE, AND WE’RE ASSUMING THIS TREATMENT WOULD BE
AN IV INFUSION BECAUSE MOST OF THE CANDIDATES THAT ARE IN LATER STAGE OF DEVELOPMENT ARE
DELIVERED THROUGH I.V WE’RE LOOKING AT EVALUATION, TESTING AND TREATMENT
TO SEE HOW MANY PATIENTS DO WE EXPECT IN THE FUTURE, VERSUS HOW MUCH CAPACITY DOES THE
HEALTH CARE SYSTEM HAVE TO SEE THESE PATIENTS. SO IN OUR MODEL WE NECESSARILY NEED TO MAKE
DIFFERENT ASSUMPTIONS, SHOWN ON THE LEFT ARE SOME OF THE KEY ASSUMPTION IN THE MODEL.
WE ARE LOOKING AT A DISEASE MODIFYING THERAPY FOR EARLY STAGE ALZHEIMER’S, AVAILABLE IN
2020. AGAIN THIS IS A HYPOTHETICAL SCENARIO TO DEMONSTRATE
SOME OF THE INFRASTRUCTURE ISSUES. WE’RE ASSUMING THERAPY WOULD BE DELIVERED
BY I.V. EVERY FOUR WEEKS FOR A YEAR, REPEATED WHERE PATIENTS COME IN FOR INFUSION THERAPY,
SIMILAR TO CHEMOTHERAPY WHERE PEOPLE COME IN AND SIT FOR TREATMENT, ASSUMING IT WOULD
REDUCE BY 50%. ON THE RIGHT ARE DIFFERENT FACE, SCREENING,
TREATMENT AND DIAGNOSTIC. EACH STEP WHICH I WON’T GO THROUGH IN DETAIL,
THESE ARE THE STEPS IN OUR MODEL PEOPLE ARE GOING THROUGH AND SEEING DEMENTIA CONFERENCE
OF DEMENTIA SPECIALISTS AND GETTING TREATMENT IF THEY ARE ELIGIBLE FOR TREATMENT, TREATMENT
WOULD REDUCE RISK OF TRANSITION FOR MCI TO DEMENTIA.
PEOPLE UNTREATED IN THE MODEL HAVE RISK OF TRANSITIONING FROM MCI TO DEMENTIA.
EACH STEPS WE’RE COMPARING NUMBER OF EXPECTED PATIENTS AND EXPECTED CAPACITY TO SEE THESE
PATIENTS. LOOKING FIRST AT THE NUMBER OF PATIENTS, SHOWN
HERE IS A SNAPSHOT OF POTENTIAL PATIENTS IN 2019 STARTING FROM FULL POPULATION OF PEOPLE
AGE 55 PLUS, FOCUSING ON EARLIER STAGE DEMENTIA, TRYING TO GO EARLIER IN THE DISEASE PROGRESSION.
AT EACH STEP SHOWN HERE ARE NUMBER OF EXPECTED PATIENTS IN MILLIONS, THAT WE EXPECT TO GO
IN FOR SCREENING TO GET EVALUATED AND TESTED. AND WE’RE STARTING WITH QUITE A LARGE NUMBER
OF PATIENTS, IN ORDER TO IDENTIFY THE ESTIMATED 2.4 MILLION PATIENTS WE THINK COULD BE ELIGIBLE
FOR SUCH A TREATMENT. AND ALL THESE NUMBERS ARE SHOWING THE NUMBER
OF PATIENTS EXPECTED WITH NO CONSTRAINTS IN CAPACITY SO THERE’S NO DELAYS IN CARE, EVERYONE
HAS ACCESS. THIS IS THE NUMBER WE EXPECT TO SEEK CARE.
AND THEN WE COMPARE THESE NUMBERS WITH THREE CONSTRAINTS.
FIRST LOOKING AT HOW DOES THIS LINE UP WITH THE CAPACITY OF DEMENTIA SPECIALISTS TO SEE
ALL THESE PATIENTS. HOW IT LINES UP WITH HOW MANY PET SCANNERS
ARE AVAILABLE TO DO THE IMAGING AND THEN LAST HOW MANY INFUSION CENTERS AND INFUSION CHAIRS
ARE AVAILABLE TO ACTUALLY TREAT THESE PATIENTS. FOR OUR SCENARIO WE’RE LOOKING AT THE CAPACITY
AND FOR THESE THREE CONSTRAINTS AS IF THE CURRENT CAPACITY IS CARRIED FORWARD BASED
ON HISTORICAL TRENDS SO THE SCENARIO I’LL BE SHOWING WITH RESULTS ARE REALLY IF NO SPECIFIC
POLICY ACTIONS DONE TO EXPAND CAPACITY WHAT WE HAVE TODAY CARRIED FORWARD.
AND UNDER THE SCENARIO WE FIND CAPACITY WOULD NOT BE SUFFICIENT TO SEE ALL PATIENTS RIGHT
AWAY AND THAT WE ARE ESTIMATING VERY SIGNIFICANT WAIT LISTS.
SHOWN HERE ARE NUMBER OF PATIENTS WAITING FOR DIAGNOSIS OR TREATMENT AT THOSE THREE
STAGES, AND THE FIRST LINE FOR THE DEMENTIA SPECIALIST VISIT INITIALLY ESTIMATING WELL
OVER 4 MILLION PATIENTS WOULD BE WAITING FOR SPECIALIST VISIT.
YOU CAN SEE THE PEAK SORT OF MOVING OVER TIME FROM THE SPECIALIST VISIT TO AMYLOID TESTING
TO INFUSION TREATMENT REPRESENTING MAJORITY OF EXISTING CASES OF PEOPLE WITH MCI MOVING
THROUGH THE SYSTEM. SO THE PREVALENT CASES TAKE IN OUR MODEL UNTIL
2034, UNTIL THERE’S NO WAIT LIST. SO THIS IS QUITE A LONG PERIOD OF TIME.
THIS IS A 14 YEAR PERIOD, WE’RE ESTIMATING A TREATMENT WOULD AVAILABLE BUT PEOPLE WOULD
NOT BE ABLE TO ACCESS THERAPY DUE TO DELAYS IN GETTING EVALUATION AND GETTING THE TREATMENT
DELIVERED. WHAT DOES THIS MEAN FOR PATIENTS ON WAIT LISTS?
SHOWN HERE IS THE AVERAGE TIME DELAY THAT WE’RE ESTIMATING.
SO THIS IS THE AVERAGE TIME DELAY IN MONTHS FOR EACH OF THE THREE STEPS, SO YOU CAN SEE
IF THE FIRST SEVERAL YEARS THE WAIT IS WELL OVER 12 MONTHS, ON AVERAGE.
AND AGAIN THESE WAITING PERIODS EXTENDING UNTIL 2034.
WHILE PEOPLE ARE ON WAIT LISTS OF COURSE THE DISEASE IS PROGRESSING, THIS IS PROGRESSIVE
NEURODEGENERATIVE DISEASE, AND THAT DOES NOT WAIT WHILE PEOPLE ARE WAITING FOR EVALUATION
AND TREATMENT OVERALL WE’RE ESTIMATING IN THIS 14 YEAR PERIOD OF TIME WHERE THERE ARE
WAIT LISTS THERE WOULD BE OVER 2 MILLION CASES THAT ARE PROGRESSING FROM MCI TO DEMENTIA
THAT COULD HAVE BENEFITED FROM THE THERAPY. AGAIN, THESE SCENARIOS ARE SHOWING IF THIS
CURRENT CAPACITY FOR THESE EVALUATION AND TESTING AND TREATMENT ARE BASED ON CURRENT
CAPACITY CARRIED FORWARD AND WITHOUT ANY SPECIFIC POLICY ACTIONS BUT OF COURSE WE HOPE THAT
THERE WOULD BE POLICY ACTIONS TAKEN IN ORDER TO INCREASE CAPACITY.
AND I’LL TURN IT OVER TO SOEREN TO DISCUSS SOME OF THOSE POLICY OPTIONS.
>>YEAH, THANK YOU, JODI. ACTUALLY I PRESENTED THESE FINDINGS AT AAIC
LAST WEEK AND WITH THE POSITIVE RESULTS OF 2401 AND ITS ABILITY TO SLOW COGNITIVE DECLINE
IT SUDDENLY BECOMES REAL. THIS USED TO BE SOMEWHAT OF A HYPOTHETICAL
EXERCISE. PEOPLE SAID, YEAH, THERE’S NO TREATMENT, WHY
DID YOU BOTHER, BUT I THINK WE MAY ACTUALLY GET TO A TREATMENT AND THERE WAS EVEN TALK
ABOUT WHETHER THE TRIAL RESULTS FROM THIS PHASE 2 TRIAL WERE STRONG ENOUGH TO ACTUALLY
GO TO THE FDA ON THE STRENGTH OF THE DATA AND JUST WITH NO CONFIRMATORY TRIAL, GIVEN
THE ENORMOUS UNMET NEED IN THIS AREA. SO IT IS REAL.
IT IS REAL AND WE DON’T HAVE A LOT OF TIME. SO WHAT DO WE DO?
OF COURSE, AS JODI HAS SHOWN, THE SPECIALIST SHORTAGE IS THE MOST URGENT ISSUE, AND IT
IS ALSO THE HARDEST TO FIX. WE DON’T HAVE ENOUGH DEMENTIA SPECIALISTS.
IT TAKES A LONG TIME TO TRAIN THEM. AND OF COURSE THEY ARE USUALLY WORKING IN
GERIATRICS AND THERE ARE LOTS OF COMPETING DEMANDS ON THEIR TIME IN AN AGING SOCIETY.
SO IF YOU GO BACK TO THE FUNNEL, THE BEST WAY OF SHORTENING THE WAIT LIST IS IF YOU
ATTACK THE TOP OF THE FUNNEL BECAUSE IF YOU CAN EVEN SHAVE OFF A FEW MILLION ON THAT STAGE,
OF COURSE WE GET A LOT FEWER PEOPLE THAT THEN NEED TO BE EVALUATED BY SPECIALISTS, I.E.
A LOT MORE FALSE POSITIVES IN THE EARLY PROCESS, AND THAT WOULD MAKE THEIR WORK A LOT MORE
EFFICIENT AND AVOID THEM HAVING TO SEE A LOT OF NON CASES WHEN WAIT LISTS ARE LONG.
WE CAN DO THAT WITH BETTER SCREENING TOOLS. SECONDARY SCREENING TOOLS THAT REDUCE THAT
ARE BETTER THAN THE MINI MENTAL AND GIVE YOU A MORE SPECIFIC ANSWER OR PRIORITIZING PEOPLE
BASED ON RISK OF PROGRESSION SO WE THEN ADVANCE THOSE FASTER IN THE PIPELINE.
THE OTHER COMPONENT THAT WE CAN TASK SHIFT, SO REALLY HAVE DEMENTIA SPECIALISTS FOCUS
ON THE TRUE VALUE ADDED COMPONENTS OF THE EVALUATION PROCESS AND DELEGATE MORE TO MID
LEVEL PROVIDERS OR OTHERS SO THAT THEY CAN WORK MORE EFFICIENTLY.
IN THE END, WE NEED MORE SPECIALISTS. IN THE U.S. DEMENTIA CARE IS TYPICALLY PROVIDED
BY FAIRLY SMALL SPECIALIST, GERIATRIC PSYCHIATRY, GERIATRICS, SPECIALTIES THAT ARE MUCH LARGER
LIKE GENERAL PSYCHIATRY OR INTERNAL MEDICINE CLOSE ENOUGH TO DEMENTIA CARE THEY COULD PROBABLY
GET QUALIFIED IN DOING THE FULL COGNITIVE EVALUATION OR AT LEAST PARTS OF IT.
THEN THERE’S OF COURSE THE ISSUE OF ACCESS, IN RURAL AREAS THERE MAY NOT JUST BE A DEMENTIA
SPECIALIST, PERIOD. SO WE MAY NEED TELEMEDICINE MODELS TO A ALLOW
PEOPLE IN THESE AREAS TO ACCESS SPECIALTY CARE.
WE SHOULD EXPAND THE DIAGNOSTIC OPTIONS AT THE MOMENT, THE ONLY APPROVED OPTION IN THE
U.S. IS PET SCAN. WE CAN TECHNICALLY EXPAND PET SCANS.
WE TALKED TO THE MANUFACTURERS AND THEY SAID WITH ENOUGH MONEY THEY CAN BUILD THESE ALL
DAY LONG. BUT IF WE BUILD THE CAPACITY FOR PET SCANNING
FOR THE CURRENT PREVALENT CASES, WE WILL INVEST A LOT OF MONEY IN FIXED INFRASTRUCTURE THAT
WE MAY NOT NEED LATER IF WE ONLY DEAL WITH THE INCIDENT CASES.
THESE MACHINES DO NOT COME CHEAP, SO THIS IS A REAL CONSIDERATION.
AND THEN THERE’S THE ISSUE WITH RURAL AREAS. IT’S NOT JUST A PET SCANNER PER SE, BUT IT’S
ALSO THE LIGAND, THE RADIOACTIVE TRACER THAT GETS TO BE INJECTED IN THE BLOODSTREAM AND
THEN BINDS TO THE AMYLOID IN THE PATIENTS’ BRAINS, AND THIS IS AN UNSTABLE RADIOACTIVE
SUBSTANCE WHICH NEEDS TO BE MANUFACTURED LIKE RIGHT AT THE TIME, AND SO YOU CAN’T BE TOO
FAR AWAY FROM THE CYCLOTRONS THAT MANUFACTURER THE TRACER IN ORDER TO RUN THE PET SCAN FACILITY
BECAUSE THESE THINGS DON’T TRAVEL WELL. AND CONVERSELY, OF COURSE, GIVEN HOW EXPENSIVE
CYCLOTRONS AND PET SCANNERS ARE THERE’S JUST NO WAY TO OPERATE THEM ECONOMICALLY IN A NOT
DENSELY POPULATED AREA, AND WE LOOKED AT SOME OF ROUGHLY THE 200 MILE RADIUS AROUND THE
EXISTING FACILITIES AND YOU END UP WITH SUBSTANTIAL GAPS WHERE WE DON’T HAVE PET SCANNING CAPABILITIES
AND WE WILL PROBABLY NEVER HAVE PET SCANNING CAPABILITIES, JUST BECAUSE THAT WOULD BE EXTREMELY
EXPENSIVE TO RUN. THE ALTERNATIVE OF COURSE IS THE SO CALLED
CSF ASSAY, SO OBTAINED WITH A SPINAL TAP. THAT CAN BE DONE IN MOST CLINICS, AND THEN
SENT TO A CENTRAL LAB, AND IT’S ALSO NOT THAT EXPENSIVE PER TEST, AND WE DO NOT HAVE TO
BUILD EXPENSIVE INFRASTRUCTURE. IT IS APPROVED IN EUROPE.
IT’S NOT YET APPROVED IN THE U.S., BUT FDA HAS GIVEN IT A PRIORITY DESIGNATION, SO WITH
A LITTLE LUCK WE HAVE IT IN A YEAR OR SO. AND THEN THERE ARE OTHER TESTS LIKE BLOOD
BASED TESTS, RETINAL TESTS THAT COULD HELP US.
HOME INFUSION COULD ALSO BE VERY IMPORTANT BECAUSE, AGAIN, WE HAVE THESE LARGE NUMBER
OF PREVALENT CASES WHEN THE TREATMENT BECOMES FIRST AVAILABLE, IF WE BUILD FIXED CAPACITY
IN TERMS OF CLINICS AND CHAIRS, WE NEED TO TRIPLE WHAT WE CURRENTLY HAVE IN TERMS OF
INFUSION CHAIRS AND AT THE SAME TIME HAVE IDLE CAPACITY LATER ON DEALINGS WITH INCIDENT
CASES, HOME INFUSION IS A SOLUTION BECAUSE WE COULD INCREASE CAPACITY IN THE SHORT RUN,
RELATIVELY EASY TO SCALE, FORTUNATELY AFTER THE 21ST CENTURY CURES ACT IT’S POTENTIALLY
COVERED IN FEE FOR SERVICE MEDICARE AS OF NEXT YEAR AND MOST ADVANTAGE PLANS ACTUALLY
ALREADY COVER IT. FORTUNATELY ALSO THE NATURE OF THE TREATMENT
IF YOU LOOK AT THE COMPOUNDS THAT ARE IN DEVELOPMENT WOULD PROBABLY ALLOW HOME INFUSION JUST FROM
THE PROPERTIES OF THE TREATMENT, IT’S A SHORT DURATION, USUALLY 30 MINUTE INFUSIONS, COGNITIVELY
IMPACT PATIENTS SO YOU DON’T HAVE TO DEAL WITH PATIENTS THAT ARE CONFUSED OR DISTURBS,
AND REACTION IS RARE, YOU CAN ADMINISTER THESE DRUGS SAFELY AT HOME.
WHAT ARE THE IMPLICATIONS FOR RESEARCH AGENDA? AS I SAID, WE CLEARLY NEED BETTER SCREENING
TOOLS, BECAUSE WE HAVE THIS ENORMOUS NUMBER OF PATIENTS WITH MCI.
AND AMONG THEM AN ENORMOUS NUMBER OF FALSE POSITIVES THAT DO NOT HAVE AMYLOID AND DO
NOT HAVE TO BE TREATED. WE’VE GOT TO WEED OUT THESE FALSE POSITIVES
AND THAT IS GOING TO GIVE US THE BEST RETURN BECAUSE THAT IS THE LARGEST NUMBER GOING INTO
THE FUNNEL. SO BETTER TESTS, EVEN RISK STRATIFICATION,
BIOMARKERS THAT CAN BE OBTAINED PREFERABLY WITHOUT A SPINAL TAP, WHICH ISN’T ALL THAT
PLEASANT. SO IF YOU ACHIEVE THAT, WE STILL NEED DEMONSTRATION
PROJECTS FOR SCALABLE DELIVERY MODELS. YOU SAID MADE AN IMPORTANT POINT, LISA, MANY
INNOVATIONS GET TESTED AND FORGOTTEN, NOT MEANT TO BE SCALED BUT RESEARCH, WE NEED TO
GO AWAY FROM THAT AND FIND WAYS WE DESIGN THE SCALABILITY AND SUSTAINABILITY IN MIND
BECAUSE THIS PROBLEM IS NOT GOING TO GO AWAY. BETTER DELIVERY MODELS WILL ALSO HELP US TO
ADDRESS REGIONAL ISSUES BECAUSE IN SOME REGIONS IT’S GOING TO BE HARD TO BUILD INFRASTRUCTURE
FROM SCRATCH. IT’S A PARADOX, BECAUSE NOW WE’RE TALKING
ABOUT PREVENTING ALZHEIMER’S DISEASE THROUGH EARLY TREATMENT, IF YOU THINK ABOUT PREVENTION
WE USUALLY THINK OF FAIRLY SIMPLE THINGS THAT BE DONE IN A PRIMARY CARE OFFICE LIKE GET
YOUR FLU SHOT, TAKE YOUR ASPIRIN, GET YOUR LIPIDS CHECKED.
HERE WE’RE TALKING ABOUT A PREVENTION THAT ALMOST LOOKS LIKE HIGH END CANCER CARE, BIOMARKERS,
ADVANCED IMAGE, RISK STRATIFICATION, MATCHING OF PATIENTS TO DRUGS, DEEP INVOLVEMENT OF
SPECIALISTS. SO WE HAVE A PREVENTIVE TREATMENT THAT IS
SORT OF EXTREMELY SOPHISTICATED, AND WE HAVE NOT SEEN SOMETHING LIKE THAT IN MEDICINE YET,
SO IT’S SORT OF AN UNPRECEDENTED CHALLENGE AND WE NEED TO FIND DELIVERY MODELS TO HANDLE
THAT CHALLENGE. WE’RE LESS WORRIED ABOUT CONSTRAINTS WITH
DIAGNOSTIC TESTING AND INFUSION DELIVERY, WITH THE LIKELY APPROVAL OF SDSF TEST AND
POTENTIAL OF HOME INFUSION EXPECT THERE WILL BE ENOUGH CAPACITY EVEN IF THE DRUG BECOMES
APPROVED REASONABLY SOON, BUT THE BIG “BUT” IS THERE’S GOING TO BE ENOUGH CAPACITY, IF
REIMBURSEMENT LEVELS ARE NOT THERE, CAPACITY MAY BE THERE BUT NOT MADE AVAILABLE FOR THAT
PARTICULAR PURPOSE. OKAY.
SO WE’RE GETTING CLOSE TO A DISEASEMODIFIES ALZHEIMER’S TREATMENT, IT WOULD BE SPECTACULAR.
IT’S BEEN A LONG TIME IN THE WAIT. BUT OUR SIMULATION SUGGESTS THAT PREPARING
THE U.S. HEALTHCARE SYSTEM MAY ACTUALLY BE ALMOST AS HARD AS DEVELOPING A TREATMENT,
AND IF YOU DON’T FIX THIS ABOUT 2.1 MILLION PEOPLE, AS MANY AS LIVE IN CROATIA, WILL GET
THEY PLAY GREAT SOCCER, BY THE WAY. [LAUGHTER]
WILL GET ALZHEIMER’S AND THAT WOULD JUST BE OUTRAGEOUS IN THE RICHEST COUNTRY OF THE WORLD
THAT WE HAVE PEOPLE DEVELOP A NEURODEGENERATIVE DISORDER WITHOUT CURE WHILE ON THE WAIT LIST.
IT IS NOT GOING TO BE EASY, SO IT REQUIRES COORDINATION BETWEEN PAYMENT POLICY, REGULATING
ENVIRONMENTS, WORKFORCE, CAPACITY PLANNING, MANY STAKEHOLDERS WILL HAVE TO WORK TOGETHER
TO MAKE IT HAPPEN AND WITH INITIAL POSITIVE RESULTS FOR THE FIRST CURATIVE TREATMENT WE
BETTER GET STARTED SOON. THANK YOU.
>>THANK YOU. WE’RE GOING TO OPEN IT UP FOR QUESTIONS, A
LOT TO DIGEST HERE. WE WON’T GO OUT OF BUSINESS.
THAT’S FOR SURE. YEAH, GO AHEAD.
>>SO, YOU MENTIONED KEY ASSUMPTION, ABOUT THE THERAPY ITSELF, IN TERMS OF SENSITIVITY
OF RESULTS THOSE WERE THERE ANY THAT STOOD OUT, DETAIL DROVE THE RESULTS ONE WAY OR THE
OTHER OR ROBUST ACROSS ASSUMPTIONS?>>IN TERMS OF EFFECTIVENESS OF THE TREATMENT,
IT SORT OF DOESN’T REALLY MATTER BECAUSE PEOPLE ARE STILL PROGRESSING.
JUST WE CAN SAY FEWER IF THE TREATMENT IS LESS EFFECTIVE.
I THINK THAT DOES NOT AFFECT OUR PROJECTION THAT MUCH.
THAT’S GOING THE WRONG DIRECTION. SO IF YOU LOOK AT THE FUNNEL, OF COURSE THE
BIGGEST ASSUMPTION IS HOW MANY PEOPLE WILL GET SCREENED.
AGAIN, IT DOESN’T AFFECT THE PROGRESSION RATES BECAUSE IF YOU DO NOT GET DIAGNOSED YOU STILL
PROGRESS. BUT IT AFFECTS KIND OF THE WAIT TIMES AND
THUS THE PERCEIVED SHORTAGES OF THE CAPACITY. AND THEN IN TERMS OF THE CONSTRAINTS OBVIOUSLY
THE SPECIALISTS ARE THE BINDING CONSTRAINT, AND THAT ASSUMPTION INFLUENCES A LOT HOW LONG
THE WAIT TIMES ARE GOING TO BE.>>SO I HAVE A QUESTION.
I THINK THAT YOUR STUDY IS VERY IMPORTANT ON A NUMBER OF LEVELS.
THE FIRST IS THAT IT SHOWS THE TREMENDOUS VALUE OF SIMULATION.
AND WE CAN MODIFY SOME OF YOUR ASSUMPTION TO TAKE A LOOK AT DIFFERENT KINDS OF PROJECTIONS.
AND SO I THINK IT’S A VERY IMPORTANT TOOL FOR US AND SO THANK YOU SO MUCH FOR DOING
THIS STUDY. I HAVE A QUESTION SPECIFIC TO ONE OF THE ASSUMPTIONS.
AND WHETHER YOU COULD BUILD ON THE MODEL THAT YOU’VE DEVELOPED, BUT THINK ABOUT TREATMENT
A LITTLE BIT DIFFERENTLY. SO, FOR EXAMPLE, EVEN IF YOU I THINK THIS
IS FROM LISA IN TERMS OF SUBJECTIVE COGNITIVE DECLINE, WE ALREADY SEE HAVING SUBJECTIVE
COGNITIVE DECLINE AT THE MCI OR EVEN BEFORE THAT PEOPLE ARE EXPERIENCING PRETTY SIGNIFICANT
CHANGES IN THEIR ABILITY TO CARRY OUT EVERYDAY ACTIVITIES, WHICH MEANS THAT OTHER KINDS OF
TREATMENTS THAN INFUSION WOULD HAVE TO COME INTO PLAY AND EVEN AT MCI THE DATA IS VERY
CLEAR THAT WE HAVE FAMILY MEMBERS, THE INDIVIDUAL THEMSELVES WHO IS EXPERIENCING MCI, HAVING
A LOT OF DEPRESSION AND ANXIETY AND ALSO WITHDRAWAL FROM ACTIVITIES WHICH KIND OF PERPETUATES,
AGAIN, A CYCLE OF POOR AFFECT AND SO FORTH AS WELL AS FAMILIES THEMSELVES EXPRESSING
SIGNIFICANT ANXIETY BECAUSE OF THE SYMPTOMS AND ALSO HAVING TO BEGIN TO SET UP THE ENVIRONMENT
DIFFERENTLY. SO MY QUESTION IS, COULD YOU RUN THIS MODEL,
WE CAN TALK AFTERWARDS, WITH OTHER KINDS OF TREATMENT, SO IT COULD BE INFUSION, BUT THERE
IS GOING TO HAVE TO BE OTHER KINDS OF CARE WHICH COMPLICATES THIS SITUATION, AND I THINK
IT’S VERY IMPORTANT FOR US TO THINK ABOUT THAT EQUALLY.
AND SO DO YOU HAVE ANY THOUGHTS ABOUT THAT?>>OH, YEAH.
YES, THIS IS THE TIP OF THE ICEBERG. I MEAN, THIS IS REALLY ONLY DO PEOPLE GET
INTO TREATMENT FOR DISEASE MODIFYING DRUG, SO THERE’S NOT EVEN THE BACK END, RIGHT?
THESE ARE DRUGS THAT ARE NOT LIKE YOUR ASPIRIN, THEY ARE NOT SUPER COMPLICATED, SO PEOPLE
NEED TO BE MONITORED, THERE NEEDS TO BE MRI, THERE NEEDS TO BE SUPPORTIVE TREATMENT, BOTH
FOR THE PATIENT AND THE CAREGIVERS. SO, THIS IS JUST KIND OF GETTING THEM INTO
INITIAL TREATMENT AND YOU’RE ABSOLUTELY RIGHT, THERE ARE MORE COMPLEX PROBLEMS BEHIND THAT.
>>YEAH, AND I GUESS LET ME, IF I COULD JUST I AGREE WITH WHAT YOU’RE SAYING BUT REFRAME
THAT THE TREATMENT JUST CAN’T ISN’T ONE THING, THAT’S THE POINT.
THIS IS A MODEL FOR ONE APPROACH, BUT IT CAN’T BE ONE THING, SO IT’S GOING TO HAVE TO BE
MULTI FACETED IN ORDER TO DECREASE WE’LL SAY CONVERSION OR THE EXCESS DISABILITY BETWEEN,
YOU KNOW, THE MODEL THAT YOU HAVE HERE, BETWEEN MILD COGNITIVE IMPAIRMENT AND CONVERSION,
I GUESS THAT WAS MY POINT, AND I THINK THIS IS A MODEL YOU COULD REALLY TAKE A LOOK AT
WHAT DOES THAT MEAN BECAUSE IT’S THE SAME IMPLICATION.
HOW ARE WE GOING TO TRAIN HEALTH CARE PROVIDERS AND STUDENTS IN TERMS OF ADDING TO THE INFUSION,
IF THAT’S THE TREATMENT MODALITY, DO YOU SEE? IT TAKES OTHER KINDS OF TOUCHES, I THINK,
AND THAT’S WHAT I GUESS I THINK REALLY WE NEED TO NEEDS TO BE WHICH IS WHAT I GOT OUT
OF THIS, YOU DIDN’T ACTUALLY SAY THAT, BUT THAT’S WHAT I GOT OUT OF THIS, THAT IT’S INCREDIBLY
COMPLEX. BUT WE CAN DO IT.
BUT I JUST WOULD LIKE TO BROADEN OUR UNDERSTANDING OF WHAT TREATMENTS MAY BE REALLY NECESSARY
EVEN BETWEEN MCI AND ALZHEIMER’S.>>AND IF I COULD JUST ADD, PART OF WHY WE
WANTED JODI AND SOEREN TO COME PRESENT TODAY AND ADDING THE FRAME I THINK LAURA, YOU ADDED,
I THINK THIS PAPER DOES A NICE JOB OF CUTTING ACROSS THE SILOS, AS WE’VE TALKED ABOUT, THAT
WE HAVE YOU KNOW, WE FUNCTION IN THE BIOMEDICAL, CLINICAL, LTSS SPACE.
AND I THINK THIS IS A GOOD PAPER TO SHOW US THAT THAT CONNECTION IS NOT BEING MADE OBVIOUSLY,
WE ALL KNOW THAT. BUT, YOU KNOW, THAT THIS IS AN AREA FOR THIS
COUNCIL DEFINITELY TO TAKE ON. IN THE THE RECOMMENDATIONS THAT’S SOMETHING
EVERYONE HAS BEEN DISCUSSING BUT I THOUGHT IT WAS A GREAT ILLUSTRATION OF THAT.
>>LAURA, LET ME ASK IF YOUR QUESTION REPHRASED MIGHT HELP.
IF WE WERE TO STAY WITH THIS MODEL BUT LOOK AT THE PEOPLE WHO SCREEN NEGATIVE FOR AMYLOID
PET, WHERE WOULD THEY GO? WHAT’S THE INFRASTRUCTURE TO MANAGE THAT POPULATION?
>>RIGHT. YEAH, GREAT.
THAT’S ANOTHER THAT’S VERY IMPORTANT TOO.>>I WAS WONDERING IF YOU TAKING THIS TO THE
NEXT LEVEL I ASSUME THIS WAS DONE AT PEOPLE WHO LARGELY HAVE HAVE PURE ALZHEIMER’S DISEASE
BUT HAVE YOU CONSIDERED THOSE WITH MIXED PATHOLOGY BECAUSE THOSE WITH, SAY, VASCULAR DISEASE
AND ALZHEIMER’S OR LEWY BODY WOULD THEORETICALLY BENEFIT FROM THERAPY BUT ALSO THAT INCREASES
PATIENT POPULATION SIZE. SO, CAN YOU JUST ARTICULATE A LITTLE BIT HOW
YOU DEFINE THOSE THAT ARE AMYLOID POSITIVE?>>SO PEOPLE WITH DIFFERENT FORMS OF DEMENTIA
ARE IN THE MODEL, AND IF THEY HAVE MULTIPLE FORMS, IF THEY HAVE ALZHEIMER’S, THEY WOULD
BE INCLUDED IN OUR NUMBERS HERE, AND ALL OF THE PREVALENCE NUMBERS ARE BASED ON EPIDEMIOLOGICAL
STUDIES CONDUCTED. PEOPLE WITH MULTIPLE FORMS OF DEMENTIA, IT
WOULD DEPEND ON THE PROFILE OF THE THERAPY, WHETHER IT WOULD BE EFFECTIVE.
A LOT OF SAME CHALLENGES WITH INFRASTRUCTURE WITH EXIST FOR FIGURING OUT HOW TO DETECT
AND DIAGNOSE THEM EARLY ON.>>CYNTHIA?
>>I JUST WANTED TO SAY THANK YOU FOR YOUR WORK AND ALSO MAKE A COMMENT THIS REALLY SPEAKS
TO THE IMPORTANCE OF VOLUNTEERING TO PARTICIPATE IN CLINICAL TRIALS.
IT’S OFTEN SAID THAT THE FIRST PERSON WHO IS CURED WILL BE A PARTICIPANT IN A CLINICAL
TRIAL. THANK YOU.
>>ARE THERE QUESTIONS? ANYBODY ON THIS TELEPHONE WITH QUESTIONS?
HEARING NONE, THANK YOU SO MUCH FOR YOUR GREAT WORK AND FOR PRESENTING IT HERE.
THANK YOU. WE’RE GOING TO GO ON NOW.
WE’RE GOING TO GO ON AND HEAR PUBLIC COMMENTS, I’LL TURN IT OVER TO YOU, ROHINI.
WE HAVE SIX PUBLIC COMMENTS TODAY, SO THREE PEOPLE IN THE ROOM AND I WILL BE READING THREE
OUT LOUD. FIRST WE HAVE JOHN DWYER.
AND AFTER JOHN, MATT JANICKI.>>JOHN DWYER, PRESIDENT OF GLOBAL ALZHEIMER’S
PLATFORM. I WAS ALSO I HAVE THE PRIVILEGE OF BEING ONE
OF THE CO FOUNDERS OF UsAgainst ALZHEIMER’S WITH GEORGE BRANDENBERG, TRISH AND MERRILL.
TODAY I I WANT TO MAKE A COMMENT IN THE FACE OF THE RECOMMENDATIONS THAT NAPA IS MAKING
AND THANK YOU FOR ALL OF YOUR EFFORTS, THE GOOD WORK IN THIS REGARD, GAP HAS IN THE COURSE
OF ITS WORK, I’LL TAKE FIVE SECONDS TO SAY WE’RE AN ENTERPRISE DEDICATED TO SHORTENING
THE TRIALS, IMPROVING REDUCING COST AND IMPROVING EFFICACY OF CLINICAL TRIALS.
WE HAVE THE LARGEST NETWORK IN NORTH AMERICA OF CLINICAL TRIAL SITES, 62 INCLUDING MY COLLEAGUE
AND FRIEND DR. LEVEY AT EMORY. IT’S COMPOSED OF 50% PUBLIC SITES, ACADEMIC
AND PRIVATE SITES. SO IN THE COURSE OF OUR RESEARCH WE HAVE DETERMINED
THAT THERE’S A GROWING SHORTAGE OF CLINICAL TRIAL CAPACITY IN NORTH AMERICA THAT MUCH
OF WHAT YOU ARE TRYING TO DO HERE AT NAPA IS AT RISK.
THE CHALLENGE IS THAT OUR ESTIMATES SHOW THAT IF YOU TAKE ALL THE PHASE 2, PHASE 3 TRIALS,
DOT GOV, EVERY TRIAL SITE IN THE UNITED STATES, LIKELY A SHORTAGE UP OF TO 200 TO 300 CLINICAL
TRIAL SITES IN NORTH AMERICA TO DO ALL THE WORK IN THE TIME PROJECTED.
LOOKING AT THE RECOMMENDATIONS, TERRIFIC RECOMMENDATIONS OF NAPA, I COME HERE TODAY TO ASK YOU TO CONSIDER
MAKING THIS PART OF YOUR STRATEGIC REVIEW BECAUSE THE THERAPIES WE’RE TRYING TO GET
ACROSS THE GOAL LINE, THE VALIDATING DIAGNOSTICS WE NEED ARE UNLIKELY TO BE DONE ON THE TIME
SCHEDULE WE HAVE PROVIDED, IN OUR ESTIMATES. WE MAY SEE EXTENSIONS OF AS MUCH AS TWO YEARS
TO THREE YEARS, WE MAY SEE SOME SCIENCE NEVER SEES THE LIGHT OF DAY BECAUSE THEY CAN’T COMPETE
FOR THE SPACE NECESSARY TO ADVANCE THE STUDIES. THANK YOU.
>>THANK YOU, JOHN. MATT AND AFTER MATT, SARAH SAZANSKI.>>THANK YOU.
I SORT OF MISS THE PODIUM. I’M MATT JANICKI, WITH SETH KELLER YOU HEARD
FROM US BEFORE. IN YOUR PACKETS ARE SUBMITTED COMMENTS MORE
LENGTHILY THAN THE TWO MINUTES. ONE, I’M PLEASED TO HEAR THE NATURE OF THE
RECOMMENDATIONS THAT ARE COMING OUT FOR THE UPDATE BECAUSE THEY RESONATE VERY WELL WITH
SOME OF THE THINGS THAT OUR GROUP HAS BEEN WORKING ON AND RESEARCHING AND DELVING INTO.
I WANTED TO POINT OUT A COUPLE THINGS. ONE IS THAT WE HAD THE OPPORTUNITY TO COMMISSION
A PRE SUMMIT REPORT LAST YEAR FOR THE SUMMIT THROUGH THE UNIVERSITY OF ILLINOIS, CHICAGO,
HELLER WAS THE PROFESSOR THERE AND LET A WORKING COMMITTEE.
THE REPORT HAS BEEN PUBLISHED, IN A JOURNAL CALLED ALZHEIMER’S AND DEMENTIA TRANSLATIONAL
RESEARCH IN CLINICAL INTERVENTION, I’M PLEASED THE INFORMATION WILL BE CONVEYED, UPDATED
FROM THE PRESENTATIONS THAT WERE GIVEN AT THE SUMMIT.
I WANT TO POINT OUT ONE OF THE THINGS THE REPORT DWELT ON IS DIFFERENCE IN CAREGIVERS
WHO HAVE LIFETIME RESPONSIBILITIES FOR CARING FOR SOMEONE WITH DOWN SYNDROME OR INTELLECTUAL
DISABILITY WHEN COMPARED TO OTHER CAREGIVERS WHO BECOME CAREGIVERS IN LATER LIFE BECAUSE
OF A SPOUSE OR SOMEONE ELSE IN THEIR FAMILY. I THINK THE MAIN INGREDIENTS OF THAT, MAIN
DIFFERENCES ARE THAT THE PARENTS THAT ARE INVOLVED IN THESE CAREGIVING SITUATIONS ARE
MOSTLY LONG LIFE CAREGIVERS, HAVE BEEN PROVIDING CARE FOR THE LIFETIME OF THE SON OR DAUGHTER
WHO HAS INTELLECTUAL DISABILITY. THERE ARE OFTENTIMES SIBLINGS, OFTEN INDIVIDUALS
WHO ASSUME CAREGIVING RESPONSIBILITIES WHEN PARENTS AREN’T ABLE TO PROVIDE THOSE BECAUSE
OF AGING OR OTHER ISSUES. AND VERY MUCH IN LINE WITH THE RAND FOUNDATION,
THERE’S A HIGH NEED FROM EARLY DETECTION AND DIAGNOSIS IN TERMS OF IDENTIFYING INDIVIDUALS
WHO ARE AFFECTED WITH DEMENTIA AND BE ABLE TO INFORM PARENTS OF THE DIAGNOSIS AND INFORM
INDIVIDUALS OF DIAGNOSIS. THERE’S OTHER ASPECTS IN TERMS OF HOUSING
ASSISTANCE, LOOKING AT ALTERNATIVE COMMUNITY CARE SITUATIONS LIKE GROUP HOMES AND OTHER
SITUATIONS WHERE INDIVIDUALS CAN RECEIVE DEMENTIA CAPABLE CARE AFTER BEING DIAGNOSED, NO LONGER
RECEIVING CARE AT HOME WITH THEIR FAMILIES. THERE’S A LOT OF NEEDS IDENTIFIED IN THIS
REPORT. WITHOUT GETTING INTO A LOT OF THEM, YOU CAN
READ ABOUT THEM, BASICALLY A RECOGNITION THIS IS A DISTINCT CAREGIVING GROUP THAT DOES NEED
SOME ATTENTION FROM THE PLAN, FROM THE COUNCIL, THERE ARE A NUMBER OF OTHER THINGS THAT GO
INTO THAT. THERE’S A LOT OF RECOMMENDATIONS THAT DEAL
WITH RESEARCH INTO FAMILY CAREGIVING AMONG PERSONS WHO ARE LIFELONG CAREGIVERS TO FIND
OUT DISTINCT PATTERNS AND ALSO STRONG RECOMMENDATION TO LOOK AT CULTURAL DIFFERENCES AMONG GROUPS
OF INDIVIDUALS WHO REPRESENT DIFFERENT ETHNIC POPULATIONS AND AGES GROUPS, DOWN SYNDROME
REPRESENTS EARLY ONSET DEMENTIA. I WON’T GET INTO RECOMMENDATIONS NOW BECAUSE
YOU HAVE THEM IN FRONT OF YOU BUT ONE OTHER COMMENT IN RELATION TO WHAT SARAH WAS TALKING
ABOUT THIS MORNING, OUR GROUP IS NOW WORKING WITH A NUMBER OF OTHER ASSOCIATIONS TO BEGIN
TO DEVELOP A CAMPAIGN FOR NEXT YEAR, THAT WILL LOOK AT AGING WELL TOGETHER AS ONE OF
THE TOPICS, IT’S BEST USE, SOMETIMES OTHER PLACES, AND WE’RE GOING WORKING WITH GROUPS,
LOOKS LIKE WE’RE ENLISTING ASSISTANCE OF MARIA SHRIVER, THE FACE OF THE CAMPAIGN, ONGOING,
WE WANT TO PIGGYBACK WITH THE GENERAL POPULATION, GOING TO BE SPECIFICALLY TARGETED TOWARD FAMILIES
AND OTHER CAREGIVERS. SO WE CAN ENHANCE WELLNESS, ENHANCE THE DEVELOPMENT
OF INDIVIDUALS IN TERMS OF HEALTH AND WELLNESS IN OLDER AGE AND TO DIMINISH ONSET OF DEMENTIA
IN THIS POPULATION. THANK YOU VERY MUCH.
>>THANKS, MATT. SARAH?
>>HI. FIRST I WOULD LIKE TO THANK THE ADVISORY COUNCIL
FOR GIVING ME THE OPPORTUNITY TO ADDRESS THEM TODAY.
I’M HERE ON BEHALF OF THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION, ALSO KNOWN AT
AFTD, AS WELL AT FTD COMMUNITY AS A WHOLE. I WILL START BY SAYING THAT I HAVE BEEN DIRECTLY
IMPACTED BY FTD, MY FATHER WAS DIAGNOSED WITH THE DISEASE IN 2008 AT THE AGE OF 58.
HIS SYMPTOMS BECAME NOTICEABLE WHEN IT WAS DISCOVERED HE HAD DIFFICULTY TYPING ON A COMPUTER,
PUTTING WORDS TOGETHER, AND WHEN HE BEGAN TO EXHIBIT UNUSUAL BEHAVIORS.
I WOULD BE REMISS NOT TO INCLUDE THE FACT THAT MY FATHER WAS A WELL KNOWN ATTORNEY WITH
ASPIRATIONS OF BECOMING A JUDGE, A BRILLIANT MAN WHO HAD A PASSION FOR SOCIAL ISSUES.
MY FATHER’S BATTLE WITH FTD WAS LONG AND ARDUOUS LASTING EIGHT YEARS BEFORE HIS DEATH IN 2016.
I WATCHED HIM DECLINE UNTIL HE WAS A SHELL OF A MAN WITH NOTHING LEFT BUT EMPTINESS IN
I HAD EYES. NOTHING MORE DEVASTATING THAN WATCHING A PERSON
SLOWLY LOSE PERSONALITY, MEMORY, ABILITY TO SPEAK UNTIL ALL THAT REMAINS IS THEIR PHYSICAL
PRESENCE. WHILE THIS EXPERIENCE WAS DEVASTATING, I KNOW
MY FAMILY IS NOT ALONE IN THIS JOURNEY. THERE ARE THOUSANDS OF INDIVIDUALS, CAREGIVERS
AND FAMILIES BATTLING FTD ON A DAILY BASIS WITHOUT ANY ACCESS TO RESOURCES.
AS A LEAD VOLUME UNTIRE FOR AFTD I FREQUENTLY RECEIVE PHONE CALLS FROM FAMILY MEMBERS OF
INDIVIDUALS DIAGNOSED WITH FTD WHO HAVE NOWHERE TO TURN.
THE DESPERATION AND CONFUSION IN THEIR VOICES HAUNTS ME AS I STRUGGLE TO OFFER THEM MY KNOWLEDGE
OR CONNECT THEM TO AFTD. I AM HERE TODAY TO ENSURE YOU REMEMBER FTD
AND MY FATHER BY ASKING THAT YOU CONTINUE TO IMPROVE UPON AND EXPAND THE RESOURCES OFFERED
THAT ARE INCLUDED IN THE NATIONAL PLAN SPECIFICALLY THAT YOU TAKE THE NEEDS OF YOUNGER CAREGIVERS
AND PATIENTS FINANCIAL IMPACT WHEN UPDATING THE NATIONAL PLAN.
IT IS IMPERATIVE INDIVIDUALS AND FAMILIES BATTLING FTD HAVE UNRESTRICTED ACCESS TO THE
NECESSARY RESOURCES THAT CAN ASSIST THEM. THANK YOU FOR YOUR TIME TODAY.
>>THANK YOU, SARAH. I’M NOW GOING TO READ THREE COMMENTS.
SO FIRST IS FROM TERESA GODWIN MORRISON, PARENT OF A YOUNG ADULT WITH DOWN SYNDROME.
I WOULD LIKE TO ADDRESS REGRESSION AND THE FREQUENT MISDIAGNOSIS OR MORE PROPER TO SAY
INCORRECT DIAGNOSIS OF ALZHEIMER’S DISEASE AND/OR DEMENTIA FOR VERY YOUNG PEOPLE WITH
DOWN SYNDROME. I KNOW FROM PERSONAL EXPERIENCE HOW DIFFICULT
IT IS TO GET AN ACCURATE DIAGNOSIS. HERE IS OUR STORY.
REGRESSION IS CRIPPLING PEOPLE LIKE MY 27 YEAR OLD SON WHO HAD AT AROUND 21 WAS SHOWING
REGRESSION. QUALITY OF LIFE WAS SLOWLY DIMINISHING FROM
BEING AN ACTIVE YOUNG MAN IN THE COMMUNITY AND IN SCHOOL TO SITTING IN A CHAIR AND STARING
AT WALLS. JONATHAN SPENT DAYS SITTING IN A BED WHEN
CONFUSION WAS HIGH. THESE ARE THINGS THAT HAPPENED.
FIRST, DEPRESSION FOR BOTH HIM AND ME AS HIS CAREGIVER.
AT ONE POINT ABOUT TWO YEARS AFTER HIS REGRESSION BEGAN AND WE STILL HAVE ZERO ANSWERS ABOUT
WHY THIS IS HAPPENING, THE REGRESSION WAS GETTING WORSE.
HIS CONFUSION CAUSED HIM TO BE ANGRY AND HE STARTED TO HIT AND ABUSE OTHERS THAT WERE
TRYING TO HELP HIM. HE STOPPED ACTIVITIES, HE LOAFED SUCH AS GOING
TO SCHOOL, GOING TO JOBS WITH THE JOB COACH, DANCES, PLAYING BASEBALL AND RIDING LIST BIKE.
OUR DEPRESSION GREW AND MINE GOT SO SEVERE THAT I WAS NEARLY HOSPITALIZED FOR MENTAL
HEALTH. MY FAMILY WAS FALLING APART BECAUSE I WAS
SO FOCUSED SO HIGHLY ON WHAT WAS WRONG WITH MY SON.
I WAS UNABLE TO PROPERLY MOTHER AND CARE FOR MY TEENAGE DAUGHTER.
BY THE TIME I FOUND THE ONLINE CAREGIVER SUPPORT GROUP SPONSORED BY THE NTG AND DAY I REACHED
OUT TO THE ALZHEIMER’S SOCIETY, I WAS SUICIDAL. I DON’T LIKE SHARING THIS BUT THAT’S THE REALITY.
IT WAS AT THAT VERY LOW POINT THAT I STARTED THINKING ABOUT THE QUALITY OF MY SON’S LIFE.
IT WAS ALL CONSUMING. WITH THE HELP OF LEADERS OF THE ONLINE GROUP
AND MY LOCAL ALZHEIMER’S ASSOCIATION I WAS ABLE TO START LOOKING AT CAUSES FOR HIS AGGRESSION
AND SOME SOLUTIONS. THIS TERRIBLE TIME IN OUR LIVES COULD HAVE
BEEN AVOIDED, I BELIEVE, IT TOOK OVER A YEAR BEFORE WE LEARNED 3450EU MY SON DOES NOT HAVE
ALZHEIMER’SS, HE HAS DOWN SYNDROME REGRESSION WHICH MEANS HE HAS LOST SKILLS HE WON’T REGAIN
BUT IS NOT DYING FROM ALZHEIMER’S. MY ASK IS THE NAPA COUNSEL WORK WITH PEOPLE
TO HELP DOCTORS UNDERSTAND DIFFERENCE BETWEEN DON SYNDROME REGRESSION AND ALZHEIMER’S, I
WOULD LIKE TO MAKE IT EASIER TO FIND OUT WHAT IS WRONG WITH YOUNG ADULTS SHOWING REGRESSION.
IF THERE’S A MEDICAL REASON PERHAPS IT MIGHT BE ADDRESSED WITH TREATMENT AND MEDICATION.
POSSIBLY ALLOWING THEM TO RELEARN SKILLS THEY HAD PREVIOUSLY.
THERE NEEDS TO BE A MEDICAL CHECK LIST AVAILABLE TO DOCTORS, ESPECIALLY NEUROLOGIST AND PSYCHIATRISTS
AND OTHERS WHO WORK WITH PEOPLE INTELLECTUAL DISABILITIES ESPECIALLY DOWN SYNDROME.
THANK YOU FOR THE OPPORTUNITY TO SHARE THE MISDIAGNOSIS OF ALZHEIMER’S DISEASE AND TURMOIL
FOR MY FAMILY. NEXT IN PAULA GAN PARENT OF ADULT WITH DOWN
SYNDROME. AS PARENT OF A 46 YEAR OLD DAUGHTER WITH DOWN
SYNDROME I’M INTERESTED IN THE WORK OF THE COUNCIL.
PEOPLE WITH DOWN SYNDROME HAVE A VERY HIGH INCIDENCE OF ALZHEIMER’S WHICH APPEARS EARLIER
THAN THE GENERAL POPULATION AND PROGRESSES MORE RAPIDLY.
I FOUND THE PRESENTATION OF THE DYAD POPULATION COMPELLING BUT IT HAS A LOWER RISK OF DEVELOPING
ALZHEIMER’S DISEASE THAN DOWN SYNDROME. THERE’S UNCERTAINTY AND LACK OF GOOD MEDICAL
SERVICES TO DELIVER DIAGNOSIS AND PROGRAMS TO ADDRESS THE ISSUE WHEN DIAGNOSED.
THIS PROBLEM IS ONLY GOING TO GROW AS THE BABY BOOMERS’ CHILDREN IN THE CASE OF DOWN
SYNDROME OFTEN LATER IN MATERNAL LIFE REACH 40s AND ABOVE.
NOW IS THE TIME FOR DEVELOPING STRATEGIES TO ADDRESS THE SPECIFIC POPULATION WHEN PLANNING
FOR THE GENERAL POPULATION. MY DAUGHTER KILEY IS ENROLLED IN THE NIA STUDY
ON ALZHEIMER’S DISEASE AND DOWN SYNDROME SEARCHING FOR BIOMARKERS, NOVELTY EASY WITH COGNITIVE
AND TESTING AND LUMBAR TESTING BUT IS BEING PREPARED TO RETURN WHEN CALLED.
IT WAS DISAPPOINTING NOT TO RECEIVE RESULTS OF THE TESTING.
I HOPE YOU WILL BE HEARING REPORTS OF THIS STUDY AS IT PROGRESSES.
WHEN KILEY MANIFESTED SYMPTOMS, HER CONDITION HAS NOT PROGRESSED.
HER FAMILY AND I ARE PREPARED FOR THIS CHANGE IN THE FUTURE AND FEEL THIS GIVES US TIME
TO REACH OUT TO PEOPLE LIKE YOU. WE DO NOT WANT YOU TO FORGET WITH PEOPLE WITH
DOWN SYNDROME AND SUFFERING, OR AGING PARENTS CARE FOR FAILING CHILDREN, DO NOT WANT YOU
TO FORGET BROTHERS AND SISTERS LEFT TO MANAGE SIBLINGS WHILE CARING FOR AGING PARENTS, WE
DON’T WANT YOU TO FORGET KILEY AND THOSE LIKE HER NOW FACING THE PROSPECTS OF BEING DECIMATED.
SEE THAT THE POPULATION IS BEING CONSIDERED AND VOICES ARE HEARD.
FINAL FROM ASHLEY. THE NATIONAL DOWN SYNDROME
SOCIETY BELIEVES THE IMPORTANCE OF CAREGIVERS SHOULD NOT BE UNDERESTIMATED.
IN ANOTHER NDSS AND PARTNERS RELEASED ALZHEIMER’S DISEASE AND DOWN SYNDROME, A GUIDE LOOK FOR
CAREGIVERS, FOR THOSE CARING FOR AN INDIVIDUAL WITH DOWN SYNDROME DIAGNOSED WITH ALZHEIMER’S
DISEASE. WE WANT TO SHOW CAREGIVERS NDSS IS WITH THEM
EVERY STEP OF THE WAY AND PROVIDE RESOURCES IN ONE GUIDE.
THE PREFERENCE OF ALZHEIMER’S IN THE DOWN SYNDROME COMMUNITY IS HIGH.
THIS GUIDE BOOK WAS WRITTEN TO HELP EMPOWER CAREGIVERS AND FAMILIES WITH KNOWLEDGE AND
GUIDANCE ABOUT THE CONNECTION BETWEEN DOWN SYNDROME AND ALZHEIMER’S DISEASE.
HOW TO CAREFULLY AND THOUGHTFULLY EVALUATE CHANGES THAT MAY BE OBSERVED WITH AGING AND
HOW TO ADAPT AND THRIVE WITH AN EVER CHANGING CAREGIVING GOAL AND DIAGNOSIS IS MADE.
INDIVIDUALS ARE NOW GOING TO COLLEGE GETTING COMPETITIVE JOBS, GETTING MARRIED AND LIVING
LONG FULL LIVES. WE KNOW THIS GUIDE WILL BE AN AMAZING RESOURCE
FOR THE CAREGIVERS OF THOSE WITH DOWN SYNDROME AS THEY AGE.
WE ENCOURAGE EVERYONE ON THE ADVISORY COUNCIL TO VISIT OUR WEBSITE AND LOOK UNDER PUBLICATIONS
TO OBTAIN THIS VITAL RESOURCE. IF YOU HAVE ANY QUESTIONS E MAIL ASHLEY HELLSING
AT NDSS, WE LOOK FORWARD TO WORKING WITH THE ADVISORY COUNCIL ON THESE IMPORTANT ISSUES.
>>THANK YOU, ROHINI, AND EVERYBODY FOR YOUR THOUGHTFUL PUBLIC COMMENTS.
WE WOULD LIKE TO NOW BREAK FOR LUNCH, BUT WE WILL RETURN AT 1:00, UNLIKE WHAT’S ON THE
AGENDA THAT SAYS 1:30. THIS WILL GIVE US EXTRA TIME WHICH WE WERE
HOPING WE WOULD GET TO DEVOTE OUR AFTERNOON TO HEARING RECOMMENDATIONS AND VOTING ON THEM.
OKAY? SO WE’RE GOING TO BREAK, COME BACK HERE, WE’LL
START SHARP AT 1:00, FOR THOSE ON THE TELEPHONE AND ONLINE, AND VIEWING US.
SEE YOU SOON.

Author: Kevin Mason

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