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National Plan & NAPA Legislation – Advisory Council on Alzheimer’s Oct. 2015 Meeting (Part 2)


NOW FOR SOMETHING COMPLETELY
DIFFERENT. I WANT TO INTRODUCE SARAH
POTTER, THE LEAD FOR HHS STRATEGIC PLANNING.
THE NATIONAL PLAN, WHICH IS A BIG PART OF WHAT WE DO HERE, IS
PART OF THE HHS STRATEGIC PLAN, AND SARAH IS GOING TO TALK TO US
A LITTLE BIT ABOUT BOTH. [Inaudible; sounds of presenter set-up]>>[ASIDE: I’LL BE FINE HERE, I THINK. LESS TO HOLD. I DO HAVE
A SET OF SLIDES. SO WHILE THOSE ARE COMING UP, —
TECHNOLOGY, EXCITING. SO FIRST OF ALL, I WANT TO THANK
DR. PETERSON, DR. ELAM AND ROHINI FOR INVITING ME TO TALK
TO YOU TODAY. I THINK THIS IS AN INCREDIBLY
IMPORTANT TOPIC, AND I CAN’T SAY HOW MUCH I’VE VALUED BEING ABLE
TO SIT HERE THIS MORNING AND HEAR ABOUT YOUR EXPERTISE AND
EXPERIENCE, WHAT YOU’RE BRINGING TO THE TABLE, WHAT YOU’RE TRYING
TO ACCOMPLISH. I’VE BEEN WORKING ON THE
ALZHEIMER’S STRATEGIC PLAN BEHIND THE SCENES WITH THE
SUBJECT MATTER EXPERTS PRETTY MUCH SINCE I STARTED THIS JOB
AND CONNECTING THAT WORK TO WHAT YOU’RE DOING HERE TODAY IS JUST
SOMETHING I’M TREMENDOUSLY GRATEFUL FOR, SO THANK YOU SO
MUCH FOR HAVING ME HERE. I ALSO WANT TO THANK
DR. PETERSEN FOR INTRODUCING ME IN A VERY IN DEPTH WAY TO
ALZHEIMER’S. THAT WAS A FASCINATING
PRESENTATION. BUT YES, THIS IS VERY, VERY
DIFFERENT. I HAVE NO SPECTACULAR IMAGES AND
I DO APOLOGIZE. SO I’VE BEEN INVITED TO SPEAK
ABOUT THE NATIONAL PLAN IN THE CONTEXT OF STRATEGIC PLANNING AT
THE DEPARTMENT. AS YOU PROBABLY KNOW WELL, THE
DEPARTMENT TOUCH ITS THE LIVES OF EVERY AMERICAN, THROUGHOUT
THEIR LIVES. HEALTH, PUBLIC HEALTH, RESEARCH,
HUMAN SERVICES, THE DEPARTMENT HAS A TREMENDOUSLY ENORMOUS
SCOPE. ACROSS DEPARTMENT, WE HAVE ABOUT
150 STRATEGIC PLANS TO ADDRESS ALL OF THE TOPICS THAT THIS
DEPARTMENT TRIES TO FOCUS ON. WHERE I COME FROM, WE HAVE A
DEDICATED STRATEGIC PLANNING TEAM THAT IS CHARGED WITH
WORKING WITH GROUPS ACROSS THE DEPARTMENT TO HELP THEM DEVELOP
STRONG TOPIC-SPECIFIC STRATEGIC PLANS.
I HAVE TO SAY PERSONALLY I’M VERY FORTUNATE TO BE ABLE TO SEE
THE SCOPE OF THIS DEPARTMENT IN THE BIG PICTURE.
YES, I’VE READ ALL 150 OF THE DEPARTMENT’S STRATEGIC PLANS.
IT’S EXCELLENT SUMMER READING. MY JOB TODAY, THOUGH, IS TO PUT
THE ALZHEIMER’S PLAN IN THE CONTEXT OF BROADER PLANNING
ACROSS THE DEPARTMENT AT HHS. MY PRESENTATION IS VERY BRIEF,
BUT HOPEFULLY WE’LL HAVE LOTS OF TIME FOR QUESTIONS AT THE END.
SO THE STRATEGIC PLANNING TEAM IS RESPONSIBLE FOR LEADING THE
DEVELOPMENT OF THE HHS STRATEGIC PLAN, AND HELPS TO ASSESS
PROGRESS ON THAT PLAN ON AN ANNUAL BASIS.
WE WORK WITH TEAMS FROM ACROSS THE DEPARTMENT TO DEVELOP THESE
PLANS. IT’S IMPORTANT TO US THAT WHEN
OTHER TOPIC-SPECIFIC STRATEGIC PLANS ARE DEVELOPED, THEY HAVE
TO ALIGN WELL WITH THE HHS STRATEGIC PLAN.
THEY REALLY HAVE TO CASCADE. AND I HAVE TO SAY WITH GRATITUDE
THAT THE NATIONAL PLAN TO ADDRESS ALZHEIMER’S DISEASE IS
AN EXCELLENT EXAMPLE OF THAT ALIGNMENT.
YOUR PLAN’S GOALS CASCADE WELL FROM THE HHS STRATEGIC PLAN’S
FOUR GOALS. SO FOR EXAMPLE, GOAL 2 OF THE
HHS STRATEGIC PLAN FOCUSES ON RESEARCH, ACCELERATING
SCIENTIFIC KNOWLEDGE AND INNOVATION, AND THAT IS PRETTY
MUCH GOAL 1 OF YOUR PLAN. SIMILARLY, OUR HEALTH FOCUS GOAL
ALIGNS WITH YOUR EFFORT TO ENHANCE CARE QUALITY AND
EFFICIENCY, AS WELL AS ADDRESSING DISPARITIES AND
ACCESS, OUR PUBLIC HEALTH AND HUMAN SERVICES GOAL ALIGNS WELL
WITH YOUR EFFORTS TO EXPAND SUPPORT FOR CAREGIVERS AND THEIR
FAMILIES. SO THE MOST COMMON QUESTION I’M
ALWAYS ASKED IS WHAT MAKES A GOOD STRATEGIC PLAN?
WHAT’S A STRONG STRATEGIC PLAN? BASICALLY IT BOILS INTO THESE
SIX BUCKETS. WHEN WE CONSULT WITH THEM, WITH
GROUPS ACROSS THE DEPARTMENT, WE WANT TO MAKE SURE THAT WHEN THEY
CRAFT THEIR STRATEGIC PLAN, IT CAN ACTUALLY BE IMPLEMENTED.
THE GOAL IS NOT TO CREATE A BEAUTIFUL PUBLIC RELATIONS
DOCUMENT. THE GOAL IS TO CREATE A
BLUEPRINT FOR ACTION, TO ACCELERATE CHANGE.
AND I WAS REALLY HAPPY TO HEAR THAT THAT’S THE GOAL OF
EVERYBODY SITTING AROUND THE TABLE HERE TODAY.
IT’S NOT JUST ABOUT WORDS ON PAPER.
IT’S WHAT THOSE WORDS TRANSLATE INTO, INTO MEANINGFUL ACTION
THAT WORKS TOWARDS OUTCOME. A CONCRETE MEASURABLE IMPACT.
BUT AS YOU CAN IMAGINE, THIS ISN’T ALWAYS AS EASY AS YOU
THINK, THERE’S ALWAYS A TEMPTATION TO PUT MORE IN THE
PLAN THAT CAN BE DELIVERED, OR PUT THE KITCHEN SINK INTO THE
PLAN. WE OFTEN LIKE TO CALL THEM
CHRISTMAS TREE PLANS BECAUSE EVERYBODY WANTS TO STICK AN
ORNAMENT ON THE PLAN, AND IT BECOMES SO UNWIELDY, SO HUGE, SO
INCAPABLE OF BEING IMPLEMENTED, IT FALLS UNDER ITS OWN WEIGHT.
SO WHAT WE WORK WITH STAFF TO DO IS CREATE PLANS THAT ARE MORE
THAN PUBLIC RELATIONS DOCUMENTS. BLUEPRINTS FOR ACTION, THAT’S
OUR GOAL. SO WHAT WE DO FIRST IS WE
IDENTIFY THE PROBLEM. WHAT IS THE PROBLEM?
WHAT WILL THIS PROBLEM LOOK LIKE OVER TIME?
WHY IS IT A PROBLEM? AND MOST IMPORTANTLY, CAN YOU
INFLUENCE THIS PROBLEM THROUGH YOUR ACTION?
AND THAT LEADS TO THE EVIDENCE BASE.
DO YOU HAVE EVIDENCE THAT YOUR ACTIONS WILL INFLUENCE YOUR HOPE
FOR OUTCOME, RATHER THAN IMPLEMENTING 100 IDEAS THAT YOU
THINK MIGHT WORK, FOCUSING INTO A SMALLER SUBSET OF IDEAS THAT
YOU KNOW WILL WORK IS A MUCH BETTER INVESTMENT OF YOUR TIME.
THIS LEADS TO PRIORITIZING, WHICH IS OFTEN THE TOUGHEST
STEP. IT’S ALMOST AS TOUGH AS
IMPLEMENTATION. WE’VE SEEN SOME PLANS WITH
HUNDREDS UPON HUNDREDS OF ACTIONS.
AND IT’S EXTREMELY DIFFICULT TO KEEP TRACK OF ALL THOSE ACTIONS.
IT’S CERTAIN THAT NOT ALL OF THOSE ACTIONS ARE GOING TO EVEN
HAVE THE SAME IMPACT ON YOUR OUTCOME.
SO WE ENCOURAGE PEOPLE TO FOCUS THEIR EFFORTS RATHER THAN
DIFFUSE THEIR ATTENTION SO THEY CAN MAXIMIZE THEIR IMPACT.
WE WOULD RATHER PEOPLE DO 15 THINGS REALLY WELL THAN UP WITH
A HUNDRED THINGS SORT OF WELL OR UNKNOWN.
SO YOU ACTUALLY HAVE TO DO THE NEXT STEP OF IMPLEMENTATION.
MANY, MANY PLANS STOP AT THE WRITING AND FORGET ABOUT
ACTUALLY DOING. SO WE WANT TO MAKE SURE THAT
WHEN YOUR PLAN IS WRITTEN, THAT YOU’RE ACTUALLY FOCUSING ON
IMPLEMENTATION. IF AN ACTION CAN’T BE
IMPLEMENTED, WE STRONGLY DISCOURAGE PEOPLE FROM INCLUDING
IT IN THEIR PLAN. WE LIKE TO THINK OF IT, THOSE
WHO KNOW ME — IT’S LIKE BLUEPRINTS FOR BUILDING A HOUSE.
I RECENTLY RE-DID MY HOUSE. I REALLY WANTED AN INDOOR POOL
AND A BELL TOWER AND TURRETS AND A MAGNIFICENT BASEMENT WITH A
POOL TABLE. UNFORTUNATELY I DIDN’T HAVE THE
MONEY OR THE SPACE TO DO THAT, SO I COULDN’T PUT IT IN MY
BLUEPRINT FOR MY HOUSE. THERE WAS NO WAY, AS MUCH AS I
WANTED IT, THAT I COULD CONVINCE MY ARCHITECT THAT ALL OF THOSE
THINGS WERE GOING TO GO IN MY BLUEPRINT.
IT’S THE SAME THING WITH A STRATEGIC PLAN.
YOU PUT IN THERE WHAT YOU CAN DO, ACHIEVE THOSE THINGS AND
MOVE ON. THIS IS A REALLY TOUGH ONE FOR A
LOT OF FOLKS AND I WANT TO MAKE SURE I REALLY HIT THIS POINT
VERY HARD. IF YOU CAN’T IMPLEMENT IT, IF
YOU DON’T HAVE THE RESOURCES, TIME, MONEY, KNOWLEDGE, YOU
CAN’T PUT IT IN YOUR PLAN. YOU CAN PUT FOUNDATIONAL PIECES
IN TO THE POINT WHERE YOU CAN GET THE INDOOR POOL BUT IT’S
JUST NOT READY YET. SO IMPLEMENTATION DOESN’T MATTER
MUCH, IF YOU DON’T MEASURE AND TRACK YOUR PROGRESS.
WE WORK WITH GROUPS TO IDENTIFY PERFORMANCE INDICATORS,
MILESTONES, MEASURES, ANYTHING THAT THEY CAN DO TO TRACK
IMPLEMENTATION OF THEIR STRATEGIC PLAN.
THIS HELPS THEM BETTER UNDERSTAND WHEN ACTIONS ARE
YIELDING POSITIVE RESULTS, AND WHEN THEY MIGHT WANT TO RE-THINK
THEIR STRATEGIES. AND FINALLY, WE ENCOURAGE PEOPLE
TO ANTICIPATE, IDENTIFY, AND MITIGATE RISK.
EVERY STRATEGIC PLAN OPERATES IN THE CONTEXT OF RISK, AND WE TRY
TO HELP PEOPLE UNDERSTAND, RISK IS NOT GOOD OR BAD, IT JUST
EXISTS. IT’S ONLY BAD IF YOU DON’T DO
ANYTHING ABOUT IT. SO REALLY UNDERSTANDING THE RISK
THAT YOU’RE OPERATING WITHIN THE RISK ENVIRONMENT HELPS A LOT.
WHAT IF THE PACE OF SCIENTIFIC DISCOVERY DOESN’T MATCH OUR
HOPES? WHAT IF CONGRESS DOESN’T
ALLOCATE FUNDING AT THE LEVEL THAT YOU ANTICIPATED?
WHAT IF WE IMPLEMENT AN ACTIVITY AND IT HAS NO IMPACT AT ALL?
IF YOU DON’T UNDERSTAND THE RISKS THAT YOU’RE OPERATING
UNDER, YOU CAN’T DO ANYTHING ABOUT IT IN YOUR PLAN.
WE WORK WITH GROUPS TO IT UNDER SAND WHAT HAPPENS WHEN THINGS
DON’T GO AS PLANNED. SO JUST CONSTRUCTING THE PLAN,
INTENDING TO IMPLEMENT IT ISN’T ENOUGH.
WHEN WE WORK WITH PEOPLE DEVELOPING PLANS, WE ENCOURAGE
THEM TO REALLY HAVE A SINGLE PERSON OR GROUP OR POINT OF
CONTACT, RESPONSIBILITY FOR COORDINATING PLAN DEVELOPMENT,
IMPLEMENTATION, REPORTING AND COMMUNICATION.
I UNDERSTAND YOU’RE UPDATING THE ALZHEIMER’S PLAN EVERY YEAR, AND
HAVING AN IMPLEMENTATION PLAN THAT FOCUSES ON WHAT CAN BE DONE
YEAR TO YEAR IS REALLY CRITICAL. IF YOU’RE LOOKING TO INFLUENCE
OUTCOMES IN THE LONGER TERM, YOU CAN ACTUALLY BUILD YOUR ANNUAL
IMPLEMENTATION PLAN TO FOCUS ON THOSE FOUNDATIONAL ACTIVITIES
THAT LEAD YOU TO LONGER TERM SUCCESSES.
WE REALLY WANT YOU TO BE ABLE TO LAY THE FOUNDATION SO THAT YOU
CAN BEAR FRUIT IN THE FUTURE, EVEN IF YOU’RE WORKING YEAR TO
YEAR. MANAGING PLAN IMPLEMENTATION
ALSO REQUIRES THAT YOU HAVE A REALISTIC VIEW OF YOUR AVAILABLE
RESOURCES. WE KNOW FROM OUR FEDERAL WORK
VERY, VERY WELL THAT RESOURCES AREN’T STATIC, THEY EBB AND FLOW
IT DEPENDING ON A NUMBER OF EXTERNAL FACTORS, AND WHEN I
SPEAK ABOUT RESOURCES, I DON’T JUST MEAN MONEY, I MEANTIME,
EXPERTISE, KNOWLEDGE, TECHNOLOGIES, THE RESOURCES
AVAILABLE OUT THERE ARE VAST. BUT DO YOU HAVE SUFFICIENT STAFF
CAPACITY, TIME, FUNDING, SUPPORT TO IMPLEMENT YOUR PLAN?
AND THEN FINALLY, ALL OF THIS WORK IS NOT COMPLETE UNTIL YOU
ACTUALLY REPORT ON YOUR PROGRESS.
THE FACT THAT YOU HAVE THESE QUARTERLY MEETINGS TO DISCUSS
PROGRESS ON YOUR PRIORITIES RE, IS REALLY CRITICAL, VERY, VERY
IMPORTANT. ONE OF THE THINGS THAT WE
DISCUSSED WITH HHS STAFF, WORKING ON PLANS, IS TO THINK
ABOUT WHAT IS IN THEIR PLAN VERSUS WHAT THEY TALK ABOUT THE
MOST. IF THOSE ISSUES DON’T ALIGN
WELL, WE ASK THEM TO THINK ABOUT WHY THAT IS.
IF YOUR PLAN IS SEPARATE FROM WHAT IS YOUR FOCUS WHEN YOU
DISCUSS IN THESE QUARTERLY MEETINGS, THAT IS A SIGNAL THAT
MAYBE THINGS AREN’T LINING UP VERY WELL.
THE PLAN IS YOUR GUIDE FOR THE DAY TO DAY.
IT’S YOUR BLUEPRINT FOR WHAT YOU’RE GOING TO FOCUS ON, AND IT
SHOULDN’T BE SEPARATE. OKAY, THAT’S THE END.
IF ANYONE HAS ANY QUESTIONS, I’M HAPPY TO ANSWER THEM.
>>I’M SURE THERE WILL BE. SO GO AHEAD, LAUREL.
>>JUST A QUICK QUESTION. SO THE 150 STRATEGIC PLANS THAT
YOU HAVE VISIBILITY TO, HOW MANY OF THEM COME FROM A BODY LIKE
THIS, THAT’S A FACA, YOU KNOW, COMBINED FEDERAL/NON-FEDERAL
ADVISING THE SECRETARY WHO ACTUALLY MAKES THE PLAN, AND HOW
MANY OF THEM COME FROM INSIDE DEPARTMENTS, THEIR OWN STRATEGIC
PLAN?>>THAT’S A GREAT QUESTION.
AND THE 150 PLANS ARE SPECTACULARLY DIVERSE.
SOME OF THEM ARE REQUIRED BY CONGRESS, SOME OF THEM AREN’T,
SOME OF THEM ARE DRIVEN BY FEDERAL ADVISORY COUNCILS LIKE
THIS ONE, SOME OF THEM ARE INTERNAL, AT THE OPERATING
DIVISION LEVEL, AT THE AGENCY LEVEL, AT THE DIVISION LEVEL, AT
THE TEAM LEVEL. IT’S JUST AN AMAZING ARRAY OF
HOW THIS IT DEPARTMENT SETS ITS PRIORITIES FOR IMPLEMENTATION.
>>SARAH, WHAT’S A FACA?>>THE FEDERAL ADVISORY
COMMITTEE ACT. I THINK.
>>THANK YOU.>>I’M SURE LINDA WILL CORRECT
ME.>>I PRONOUNCE THAT VERY
CAREFULLY. I TRY TO BE VERY CAREFUL.
ONE TAKEAWAY MESSAGE I SEE THAT’S AN ISSUE OF DISCUSSION
HERE IS THAT THE PLAN ITSELF IS CONSTRAINED.
IT’S CONSTRAINED BY RESOURCES AND MANY OF THE ISSUES, BUT IT
REALLY IS DESIGNED TO OPERATE WITHIN THE CURRENT FEDERAL
BUDGET, AND YET IF WE ARE TO BE AN ASPIRATIONAL GROUP, OUR
RECOMMENDATIONS ARE COMPLETELY DIFFERENT.
SO COULD YOU COMMENT ON — ROHINI WILL GET INTO THIS A
LITTLE LATER, BUT COMMENT ON HOW THE RECOMMENDATIONS AND THE
PLANS SORT OF LIVE TOGETHER OR DON’T?
>>SURE. I CAN TALK VERY GENERALLY ABOUT
IT. GIVE YOU AN EXAMPLE OF HOW
SOMETHING LIKE THAT MIGHT WORK, AND LINDA AND ROHINI WILL
PROVIDE FOR DETAIL FOR THIS COMMITTEE, BUT WHAT WE’VE SEEN
IS THAT WHERE FOLKS GET INTO TROUBLE IS BY MAKING THE PLAN
TRY TO DO MORE THAN IT’S SUPPOSED TO DO.
SO A PLAN IS REALLY YOUR BLUEPRINT.
YOUR WISH LIST, YOUR HOPES, YOUR ASPIRATIONS, YOUR VISION, CAN
EXIST AS A COMPANION BUT HAS TO BE SEPARATE.
BECAUSE YOU’RE JUST SETTING YOUR PLAN UP FOR FAILURE IF YOU’RE
PUTTING THINGS IN THERE THAT YOU HAVE NO RESOURCES TO IMPLEMENT.
SO WHAT WE ENCOURAGE FOLKS TO DO IS BE INFORMED BY WHAT’S
POSSIBLE, THE VISION, THE RECOMMENDATION, FOR EXAMPLE,
FROM THE OUTSIDE, BUT TO ALWAYS LIVE WITHIN REALITY IN THEIR
PLAN. WE ENCOURAGE VISION.
VISION AND MISSION ARE WHY WE’RE ALL HERE.
WE’RE ALL HERE TO MAKE A DIFFERENCE IN PEOPLE’S LIVES.
THE PLAN IS A SORT OF AN EXECUTION DOCUMENT, IT’S A WAY
TO GET THINGS DONE. THE VISION IS SORT OF THE
ABILITY TO INNOVATE AND THINK OUTSIDE THE BOX AND THINK ABOUT
WHAT’S POSSIBLE, GIVEN UNLIMITED RESOURCES.
BUT I’LL DEFER TO MY COLLEAGUES ON WHAT WOULD BE HAPPENING.
>>RON, I ASSUME IN THE NEXT COUPLE OF SECTIONS, WE’LL GET
MORE DEEPLY INTO THAT, ESPECIALLY FOR THE VIEW OF THE
MEMBERS WHERE WE’RE HEADED, I TAKE IT?
>>EXACTLY. SO SARAH’S PRESENTATION WILL
SORT OF SET THE OVERALL GUIDELINES FOR WHAT OUR PLANS IN
THE GENERAL CONTEXT AND THEN WE’LL DRILL DOWN A LITTLE MORE
SPECIFICALLY WHAT THE NAPA LAW — AND LINDA AND ROHINI WILL
TALK ABOUT HOW THIS PLAN IS PUT TOGETHER.
JANE?>>I JUST WANT TO CONFIRM MY
UNDERSTANDING, SARAH, THAT THE CONSTRAINTS THAT WE OPERATE
UNDER AREN’T JUST FUNDING, BUT THEY’RE ALSO WE HAVE TO WORK
WITHIN THE LAW, WITHIN THE REGULATIONS, AND SO THAT PLUS
THE FUNDING ARE THE — ESSENTIALLY THE OVERALL
FRAMEWORK WITHIN WHICH WE HAVE TO CONSTRUCT THESE PLANS.
IS THAT CORRECT?>>I THINK THAT’S EXACTLY RIGHT.
YOU KNOW, ONE OF THOSE THINGS THAT WE DO WHEN WE ENCOURAGE
PEOPLE WOULD ARE WRITING PLANS DIRECTED BY CONGRESS IS TO LOOK
EXACTLY AT WHAT THEY ASK FOR AND MAKE SURE THAT YOU’RE BEING
RESPONSIVE TO THAT REQUEST, IN A VERY CLEAR AND CONCRETE WAY.
I TOOK A VERY CURSORY LOOK AT THE ACTS THAT GOVERN THIS
COMMITTEE AND IT DOES VIEW THE PLAN AND THE RECOMMENDATION
SEPARATELY, SO THAT’S ONE THING TO CONSIDER.
>>SARAH, THANK YOU VERY MUCH FOR YOUR COMMENTS.
OF THE OTHER FEDERAL ADVISORY GROUPS THAT OPERATE WITHIN HHS,
DID THEY HAVE EXAMPLES OF RECOMMENDATIONS FOR ACTION STEPS
ON WHAT’S IN THE FEDERAL PLAN, THEIR FEDERAL PLAN?
>>DOING A QUICK SCAN OF 150 PLANS, SO I THINK EVERYBODY
TREATS IT DIFFERENTLY, DEPENDING ON THE NATURE AND INTEREST OF
THE GROUP, WHAT THEY’RE TRYING TO ACHIEVE, BUT IN MY
EXPERIENCE, THE PLANS ARE ALWAYS FOCUSED ON WHAT’S ACHIEVABLE.
AND THEY COULD PUT RECOMMENDATIONS IN AN APPENDIX,
THEY COULD HAVE IT AS A SEPARATE DOCUMENT, A COMPANION DOCUMENT,
SOMETIMES OTHER GROUPS, THE PRIVATE GROUPS COORDINATING WITH
THE GOVERNMENT WILL POST ON ITS SITE ITS RECOMMENDATIONS AND
REFER BACK TO THE PLAN FOR THE EXECUTION OF SOME OF THE
RECOMMENDATIONS, THAT’S ONE OPTION.
BUT I THINK IT’S REALLY WHATEVER WORKS BEST FOR THE CULTURE OF
THE GROUP.>>COULD YOU SHARE WITH US
EXAMPLES OF SOME OF THOSE OTHER PLANS THAT HAVE A —
>>SURE, I’LL WORK WITH ROHINI TO GIVE YOU SOME EXAMPLES.
>>I THINK THAT WOULD BE INTERESTING FOR US TO LEARN.
>>I THINK THE MOST IMPORTANT THING TO REMEMBER IS THAT IT’S
EASY TO GET DISTRACTED BY FORMAT, WHEN REALLY WHAT THE
PLAN AND THE RECOMMENDATION SHOULD BE ABOUT IS THE OUTCOME,
THE DISCUSSION, THE CONVERSATION THE.
SO FORMAT IS EASY. YOU CAN DO ANYTHING WITH FORMAT.
THE MOST IMPORTANT THING IS FIGURING OUT WHAT THE OUTCOMES
YOU ARE WANTING TO ACHIEVE, HOW YOU’RE GOING TO ACHIEVE THEM,
WHAT THE TIMELINES ARE FOR ACHIEVING THOSE OUTCOMES.
>>SO SARAH, ONE ISSUE THAT’S COME UP IS HOW WE MEASURE OUR
PROGRESS, THAT IS, HOW DO WE REPORT BACK TO THE SECRETARY AND
THE CONGRESS WHETHER WE’RE MAKING ANY PROGRESS, AND
MOUNTAIN BACK OF OUR PLAN, WE HAVE THE ITEMS BROKEN OUT, AND
ARE WE MAKING — CAN YOU GIVE US AN EXAMPLE OF OTHER PLANS, HOW
THEY ALSO REPORT OUT PROGRESS?>>SURE.
I THINK THE NATURE OF PERFORMANCE MEASURES JUST SORT
OF GENERALLY, NOT JUST IN ALZHEIMER’S, NOT JUST HERE —
BUT ACROSS THE FEDERAL GOVERNMENT IS THERE NEVER SEEMS
TO BE THE DATA OUT THERE THAT WE REALLY WANT TO GET US WHAT WE
NEED. THE LIMITATIONS ON DATA ARE
VAST. WHAT FOLKS DO IN THEIR PLANS IS
THEY DO THE BEST WITH MEASURES THEY HAVE, THEY DON’T LET THE
PERFECT — THE GOOD, AND THEY MIX QUALITATIVE AND QUANTITATIVE
METRICS IN ORDER TO CAPTURE PROGRESS.
MANY OF THE THINGS THAT YOU DO, ESPECIALLY ON A YEAR TO YEAR
PLAN, ARE MORE GOING TO BE ON THE SIDE OF MILESTONES AND
QUALITATIVE MEASURES.>>JUST AS A FOLLOW-UP, WILL
THERE BE ANY PRESENTATION TODAY ABOUT THE PROGRESS FOR THE
PREVIOUS PLAN AND RECOMMENDATIONS?
>>YES.>>OKAY.
THANK YOU.>>SO IN MY PRESENTATION LATER
TODAY, WE’LL ACTUALLY GO THROUGH THE RECOMMENDATIONS FROM — THAT
THE NON-FEDERAL MEMBERS MADE EARLIER THIS YEAR AND WE’LL SORT
OF WALK THROUGH THEM ONE BY ONE, AND WE’LL ALSO TALK A LITTLE
ABOUT THE PROCESS THAT GOES INTO CREATING RECOMMENDATIONS AND IN
CREATING A NATIONAL PLAN EACH YEAR.
>>SO WITH THE CONSTRAINTS ABSOLUTELY RECOGNIZED AND THOSE
CONSTRAINTS ON ALL THE FEDERAL — AWFUL OF OUR FEDERAL
COLLEAGUES HERE ABSOLUTELY ACKNOWLEDGED AND RECOGNIZED, I
JUST PUT DOWN A MARKER FOR THE BALANCE OF THE CONVERSATION,
RON, SO THAT — PARTICULARLY FOR THOSE FOLKS WHO ARE NOT FEDERAL
MEMBERS, WE RECOGNIZE THAT BOTH THE WAY THE LEGISLATION WAS
CONCEIVED AND ENACTED, THAT THE NON-FEDERAL MEMBERS OF THE FACA
DO NOT HAVE THOSE CONSTRAINTS, AND THAT THE RECOMMENDATIONS
THEMSELVES, BY THEIR VERY EXISTENCE, SHOULD ASPIRE TO GET
TO WHAT SHOULD BE, NOT TO SIMPLY ACCEPT WHAT IF.
>>AND HARRY, I THINK THAT’S ABSOLUTELY RIGHT, AND I THINK
THAT IS EXACTLY THE INTENTION. WE DON’T WANT YOU GUYS TO BE
CONSTRAINED, BUT IT’S JUST A RECOGNITION THAT AT LEAST HALF
OF THE PEOPLE AT THIS TABLE ARE, AND THAT’S JUST — BUT WE’LL
ALSO GET INTO THAT LATER.>>ANY OTHER QUESTIONS OR
COMMENTS FOR SARAH? OKAY.
THANK YOU VERY MUCH.>>THANK YOU.
>>SO WITH THAT AS A GREAT LEAD-IN, THANK YOU VERY MUCH,
SARAH, FOR THIS. WHAT I THOUGHT WE COULD DO IS
TAKE JUST A COUPLE OF MINUTES AND LOOK AT THE LAW THAT SORT OF
CREATED US AND WHAT WE’RE SUPPOSED TO BE DOING AND SORT OF
GIVE US A DRIVING FORCE. AGAIN FOR THE NEW MEMBERS BUT
CERTAINLY REFRESHING FOR ALL OF US.
SO AGAIN, WE WERE CREATED BY THE NATIONAL ALZHEIMER’S PROJECT
ACT, WHICH WAS UNANIMOUSLY PASSED BY CONGRESS AT THE END OF
2010. SIGNED IN TO LAW BY THE
PRESIDENT IN JANUARY OF 2011. CREATED THIS COUNCIL MID 2011
AND WE’VE BEEN MEETING AS WE WERE SAYING EARLIER FOR ABOUT
FOUR YEARS. THIS LED THEN TO THE GENERATION
OF THE FIRST NATIONAL PLAN TO ADDRESS ALZHEIMER’S DISEASE,
WHICH WAS PUBLISHED IN MAY OF 2012.
AND THEN AS THE LAW REQUIRES, THERE HAVE BEEN ANNUAL UPDATES.
SO 13, 14, 15, IT’S BEEN TWEAKED, SOME OTHER FEATURES
HAVE BEEN BUILT IN, IT’S BEEN MODIFIED IN ALL BUT THE PLAN HAS
MOVED FORWARD AND HERE WE ARE TODAY WITH THE ADVISORY COUNCIL
MEETING IN OCTOBER OF 2015 WITH PART OF THE COMMITTEE COUNCIL
RECONSTITUTED. SO WHAT IS THE NATIONAL
ALZHEIMER’S PROJECT ACT? IN THE INTRODUCTORY LANGUAGE OF
THE ACT AS WE WERE SAYING EARLIER, IT REFERS TO
ALZHEIMER’S DISEASE, AND THIS IS THE FIRST NATIONAL PLAN TO
ADDRESS ALZHEIMER’S DISEASE, BUT, IN FACT, BY ALZHEIMER’S
DISEASE, AND IT SAYS IN THE LAW, THAT WE ARE TALKING ABOUT ALL OF
THE OTHER DEMENTIAS. DOWN’S SYNDROME COULD BE PART OF
ALZHEIMER’S DISEASE, BUT JUST TO BE INCLUSIVE, THAT WE’RE TALKING
ABOUT A VARIETY OF CONDITIONS, HENCE MY SLIDES EARLIER THIS
MORNING. SO NAPA, WHAT’S THE PURPOSE?
WELL, IT CHARGES THE SECRETARY OF HEALTH AND HUMAN SERVICES TO
CREATE AND MAINTAIN THE NATIONAL PLAN.
THIS HAS NEVER BEEN DONE IN THE COUNTRY, SO THIS IS THE FIRST
NATIONAL PLAN. COORDINATE ALZHEIMER’S RESEARCH
AND SERVICES ACROSS FEDERAL AGENCIES.
SO AS REPRESENTATIVES AROUND THIS TABLE AND OTHERS, THERE’S A
WHOLE HOST OF FEDERAL AGENCIES THAT HAVE BEEN DEALING WITH THE
ISSUES OF DEMENTIA AND ALZHEIMER’S DISEASE, AND I’M
TOLD THAT SOME OF YOU DIDN’T KNOW THAT THE OTHER GUYS WERE
DOING THAT STUFF, SO ONE OUTCOME OF THE PLAN ITSELF HAS BEEN TO
GET THE FEDERAL AGENCIES INTERACTING IN A SYNERGISTIC
FASHION TO TRY TO MINIMIZE, OVERLAP AND MAXIMIZE THE
RESOURCES THEY HAVE. SO ANOTHER GOAL IS TO ACCELERATE
THE DEVELOPMENT OF TREATMENTS. IMPROVE EARLY DIAGNOSIS.
THIS IS BUILT IN TO THE LAW, AND WE’VE TALKED ABOUT THAT A LITTLE
BIT AND THAT IS A FOCUS OF OUR GOALS.
COORDINATION OF CARE AND TREATMENT, ENSURE THE INCLUSION
OF ETHNIC AND RACIAL POPULATIONS AT HIGHER RISK, AND COORDINATE
WITH INTERNATIONAL BODIES. SO THIS IS THE OVERALL CHARGE,
AND YOU CAN SEE THE WAY THE PLAN WAS DEVELOPED THEN, IT INCLUDES
ASPECTS OF ALL OF THESE CONTINGENCIES.
SO THE DUTIES OF THE SECRETARY, TO OVERSEE THE CREATION AND
UPDATING OF THE PLAN, EVALUATE ALL FEDERAL PROGRAMS, INCLUDING
BUDGETS AND APPROVALS, AND CARRY OWL THE ANNUAL ASSESSMENT.
THAT’S WHAT WE WERE JUST TALKING ABOUT AND SARAH HELPED US
UNDERSTAND WHAT THAT MEANT. SO CARRY OUT THE ANNUAL
ASSESSMENT OF THE NATION’S PROGRESS, INCLUDING
IMPLEMENTATION AND RECOMMENDATIONS FOR
PRIORITIZATION. ALL THIS IS COMING AS VERY
SIMILAR TO THE OTHER PLAN. SO THE ADVISORY COUNCIL THEN IS
MADE UP OF AT LEAST, AND THERE ARE PROBABLY MORE, BUT THESE ARE
THE ONES LISTED IN THE LAW, THESE ARE THE FEDERAL AGENCIES
THAT HAVE BEEN INVOLVED WITH ALZHEIMER’S DISEASE OR OTHER
DEMENTIAS IN ONE FASHION OR ANOTHER, AND VIRTUALLY ALL OF
THESE AGENCIES ARE REPRESENTED AROUND THE TABLE.
ON THE NON-FEDERAL SIDE THEN, THERE WERE SIX CATEGORIES WITH
TWO MEMBERS APPOINTED BY THE SECRETARY FOUR YEARS AGO, AND
HALF OF THE COUNCIL HAS TURNED OVER TODAY, SO PATIENT ADVOCATES
ARE REPRESENTED, ALZHEIMER’S CAREGIVERS, HEALTHCARE
PROVIDERS, STATE HEALTH DEPARTMENT, RESEARCHERS, AND
VOLUNTARY HEALTH ASSOCIATION. SO ALL OF US — EACH OF US IS
PLOTTED INTO ONE OF THESE ALTHOUGH OBVIOUSLY WE OVERLAP IN
MANY RESPECTS. SO WE’RE TO UPDATE THE PLAN
ANNUALLY AND TO TAKE INTO ACCOUNT THE INITIAL EVALUATION
OF FEDERALLY FUNDED EFFORTS IN RESEARCH CARE, INSTITUTIONAL
PROGRAMS AND OUTCOMES, AND THE INITIAL RECOMMENDATION INVOLVED
A PRIORITIZATION OF HOW WE CAN ALTER AND CHANGE ONGOING
PROGRAMS, REDUCE THE FINANCIAL IMPACT OF THIS DISEASE TO CMS
BUT ALSO TO INDIVIDUALS AND TO FAMILIES AND IMPROVE HEALTHCARE
OUTCOMES OF THE AND THEN AGAIN, ANNUALLY THEREAFTER, TAKE A LOOK
AT ALL OF THESE GOALS, ALL OF THESE CHARGES AND SEE WHERE WE
ARE. SO THIS IS THE FIRST PLAN THAT
WAS PUBLISHED IN 2012 AND SUBSEQUENT VERSIONS LOOK A GREAT
DEAL LIKE IT. THE OVERALL GOAL OF THE NATIONAL
ALZHEIMER’S PROJECT ACT WAS TO EFFECTIVELY TREAT ALZHEIMER’S
DISEASE, PREVENT, DELAY ONSET, SLOW PROGRESS, BY 2025.
FOR THE NEW MEMBERS AGAIN, WE HAD A LONG DISCUSSION ABOUT WHAT
TIME FRAME WE SHOULD PUT ON THIS.
2025 IS A LONG WAY OUT THERE. AT THE SAME TIME, WE HAD TO BE
REALISTIC ABOUT MAKING SIGNIFICANT PROGRESS THAT WE
ENDED ON THE 2025 DATE SOMEWHAT ARBITRARILY.
NOW I PUT IN — I ADDED A PARENTHETICAL STATEMENT, DELAY
ONSET, SLOW PROGRESSION, BECAUSE ARE WE REALLY GOING TO PREVENT
ALZHEIMER’S DISEASE? I THINK WE’RE GOING TO
PREVENTIVELY TREAT BUT ARE WE GOING TO PREVENT IT?
I THINK SLOWING WOULD HAVE A HUGE IMPACT ON THE DISEASE.
THE ABSOLUTE NUMBERS ARE NOT IMPORTANT, BUT THE TRENDS AND
THE PATTERNS, I THINK, ARE USEFUL.
SO IF THERE ARE NO THERAPEUTIC ADVANCES IN THE ALZHEIMER’S
DISEASE SPACE, HERE’S WHAT WE’RE LOOKING AT OUT TO 2050.
THE ORANGE PORTION OF THE BARS ARE MILD DISEASE, THE YELLOW
PART ARE MODERATE TO SEVERE DISEASE.
SO THIS IS WHAT WE’RE LOOKING AT.
DON’T WORRY ABOUT THE ABSOLUTE NUMBERS, IT’S GOING TO TAKE OFF
AND ACCELERATE OVER THE NEXT DECADE OR TWO.
WHAT IF WE DELAY THE ONSET, WE DON’T CURE THE DISEASE BUT WE
PUSH BACK THE ONSET BY THREE OR FIVE YEARS?
THIS WOULD BE THE IMPACT. IT WOULD BE HUGE.
THE NUMBERS OF INDIVIDUALS WITH THE DISEASE WOULD BE REDUCED
VERY DRAMATICALLY. SO THIS IS A REALISTIC GOAL THAT
WE, IN FACT, DEVELOP THERAPIES, BE THEY
PHARMACOLOGIC/NON-PHARMACOLOGIC, THAT ACTUALLY DELAY THE ONSET OF
THE DISEASE. ANOTHER APPROACH WOULD BE TO
DELAY DISEASE PROGRESSION. HERE, WE WOULD GET THE FIGURES
THAT LOOK LIKE THIS. SO WE HAVE THE SAME NUMBER OF —
ABSOLUTE NUMBER OF CASES, BUT THE PROPORTION IN MILDER ASPECTS
OF THE DISEASE ARE LARGER THAN THEY WOULD BE AS PROJECTED
WITHOUT THIS TYPE OF TREATMENT, AND THAT’S HUGE, BECAUSE NOW
INDIVIDUALS CAN STAY THE AT HOME, FAMILIES CAN MANAGE
INDIVIDUALS AND RECEIPT DUCKS IN COST AND BURDEN TO THE
HEALTHCARE SYSTEM WOULD BE SIGNIFICANT.
OF COURSE IF YOU PUT THOSE TWO TOGETHER, THEN YOU GET THE BEST
OF BOTH POSSIBLE WORLDS. YOU HAVE FEWER CASES OVERALL AND
OF THE CASES YOU HAVE, THEY’RE MORE IN THE MILDER RANGE.
SO WHILE WE LIKE TO CURE THE DISEASE, BY MY EARLIER SLIDES OF
THE COMPLEXITY OF THE DISEASE PROBLEM WE’RE LOOKING AT, THAT’S
GOING TO BE A BIG CHALLENGE. BUT I THINK WE COULD DO THIS.
WITH ACROSS THE WATERFRONT OF THESE VARIOUS DISEASES, I THINK
IT’S REALISTIC TO DELAY THE ONSET AND SLOW THE PROGRESSION.
SO IF WE PUT THE GOAL — THE 2025 GOAL IN THESE PERSPECTIVES,
I THINK IT MAKES A LITTLE MORE SENSE.
SO HERE ARE THE FIVE GOALS OF THE PLAN, THEN.
THE FIRST IS THE RESEARCH KIND OF GOAL, PREVENT AND EFFECTIVELY
TREAT ALZHEIMER’S DISEASE BY 2025, THE SECOND ONE, ENHANCE
CARE QUALITY AND EFFICIENCY. THIS IS THE CLINICAL CARE.
THIRD IS EXPAND SUPPORT FOR PEOPLE WITH ALZHEIMER’S DISEASE
AND FAMILIES. SO THIS IS THE SERVICES AND
SUPPORT GOAL. FOUR, ENHANCE PUBLIC AWARENESS
AND ENGAGEMENT, AND FIVE, TRACK THE DISEASE PROGRESS, ARE WE
MAKING IT, ARE THE METRICS OUT THERE FOR US.
SO THIS IS THE FIVE GOALS THAT HAVE BEEN THERE SINCE THE ORIGIN
OF THE PLAN, AND WE WORK AROUND THEM AND CONTINUE TO UPDATE THEM
WITH EACH VERSION. SO THE ANNUAL UPDATING PROCESS
IS IMPORTANT AND VARIOUS CHANGES HAVE OCCURRED OVER TIME, SO IN
2013, WE ACTUALLY STARTED TO PUT IN THE SET OF MILESTONES THAT
WOULD MAKE ASSESSING PROGRESS TOWARD THE GOALS EASIER AND WE
ALSO ASK THE VARIOUS SUBCOMMITTEES TO PUT IN SHORT,
INTERMEDIATE AND LONG TERM GOALS SINCE THAT WILL HELP US
DETERMINE WHETHER, IN FACT, WE’RE MAKING PROGRESS.
AS WE JUST TALKED ABOUT WITH SARAH, THAT THERE ARE TWO
ASPECTS OF OUR CHARGE. ONE IS THE NATIONAL PLAN.
AND THAT’S THE PLAN, THAT’S THE DOCUMENT THAT’S BEING GENERATED
AND REVISED ANNUALLY, FOCUSING ON CURRENT ACTIVITIES.
WHAT’S REALISTIC, WHAT CAN WE DO, WHAT EXISTED IN THE
CONSTRAINTS OF THE FEDERAL GOVERNMENT AND OTHER NATIONAL
ENTITIES TO ACHIEVE PROGRESS AT THIS POINT IN TIME.
A SEPARATE SET OF DOCUMENTS OR A SEPARATE DOCUMENT INCLUDES OUR
RECOMMENDATIONS. AND THESE ARE THE
RECOMMENDATIONS THAT ARE UNCONSTRAINED.
SO THIS GIVES US AN OPPORTUNITY AS AN ADVISORY PANEL TO SAY
WHERE WE NEED TO GO. IF IT WEREN’T FOR PEOPLE,
LEGISLATION, AND FINANCES, WHAT’S IT GOING TO TAKE TO GET
TO THAT GOAL OF 2025? SO WE GENERATE THESE SET OF
RECOMMENDATIONS EVERY YEAR, GENERALLY IN JANUARY, TO INFORM
THAT YEAR’S VERSION OF THE UPDATING OF THE NATIONAL PLAN TO
THE EXTENT OUR RECOMMENDATIONS CAN BE INCORPORATED, IF NOT, THE
RECOMMENDATIONS STAND BY THEMSELVES AND GO DIRECTLY TO
THE SECRETARY AND SIMULTANEOUSLY GO TO CONGRESS.
SO OUR RECOMMENDATIONS AS TO WHAT IT’S GOING TO TAKE TO HAVE
AN IMPACT ON THESE DISEASES THEN ARE STATED IN THAT FASHION AND
GO DIRECTLY TO CONGRESS. SO AGAIN, THE STRUCTURE THEN OF
THIS COMMITTEE, WE HAVE ABOUT 26 FEDERAL AND NON-FEDERAL MEMBERS.
WE HAVE THREE FEDERAL WORK GROUPS, SO THESE ARE COMPRISED
OF THE FEDERAL MEMBERS OF THIS COMMITTEE.
ONE ON RESEARCH, CLINICAL CARE, A THIRD ONE ON SERVICES AND
SUPPORT. IN PARALLEL AND INTERACTING, WE
HAVE THREE SUBCOMMITTEES THAT ARE COMPRISED OF FEDERAL AND
NON-FEDERAL MEMBERS, AGAIN, RESEARCH, CLINICAL CARE AND
SERVICES AND SUPPORT. SO MANY OF THE FEDERAL MEMBERS
POPULATE BOTH OF THESE, AND THE NON-FEDERAL MEMBERS, THE
SUBCOMMITTEES. THIS IS HOW WE HAVE OUR
DISCUSSIONS TO GENERATE THE RECOMMENDATIONS AND OTHER
ACTIVITIES THAT ARE GERMANE TO THIS COUNCIL.
FOR EXAMPLE IN THE RESEARCH DOMAIN, THERE HAVE BEEN A
VARIETY OF SUPPLEMENTS THAT HAVE TAKEN PLACE OVER THE LAST
SEVERAL YEARS THAT HAVE LED TO CERTAIN CONCEPTS BEING
DEVELOPED, RECOMMENDATIONS, MILESTONES, TIMING OF THESE BE
AND THESE HAVE BEEN TRANSLATED INTO OUR RECOMMENDATIONS AND
HAVE ALSO FOUND OUR WAY INTO THE PLAN.
SO THE ACTIVITIES ARE INTERACTIVE IN THAT SENSE.
I’D SAY A WORD ABOUT THE ALZHEIMER’S ACCOUNTABILITY ACT,
SINCE THE LAST AGENDA ITEM DEALS TO WHAT’S CALLED THE BYPASS
BUDGET. THIS WAS A LAW THAT WAS PASSED
IN 2014 THAT REQUIRES THE NATIONAL INSTITUTES OF HEALTH TO
GENERATE AN ANNUAL BUDGET TO ASSESS WHAT’S REALISTIC AND HOW
MUCH WILL IT TAKE TO ACHIEVE THE GOAL IN 2025.
THIS IS DONE ON AN ANNUAL BASIS, SO DR. HODES AND HIS TEAM TOOK
THIS CHARGE ON EARLIER THIS YEAR, AND THE FIRST BYPASS
BUDGET WAS PRESENTED TO THIS COUNCIL AT THE JULY MEETING BY
DR. COLLINS AND DR. HODES, AND THIS SET FORTH THE BLUEPRINT FOR
THE NEXT YEAR AS TO WHAT IT WOULD TAKE, AND WE’RE HOPEFUL
THAT THIS IS GOING TO HAVE AN IMPACT, THEN, ON THE FUNDING FOR
THE YEARS GOING FORWARD. ALSO IN THE ALZHEIMER’S
ACCOUNTABILITY ACT, THE BUDGET WAS PRESENTED TO US FOR COMMENT
AS IT’S BEING SENT TO CONGRESS, SO THE SECRETARY MAKES COMMENTS,
WE MAKE COMMENTS, AND THAT’S OUR ACTIVITY AT THE END OF THE DAY
TODAY, TO COMMENT ON THE CURRENT BYPASS BUDGET.
SO THIS IS WHERE I STARTED AND WHERE I WILL END.
THIS IS AN ITERATIVE PROCESS, AND I THINK IT’S BEEN WORKING
REASONABLY WELL BUT IN TERMS OF OUR TALKING ABOUT PROCESS AND
ROHINI IS GOING TO GO INTO MORE SPECIFICS ABOUT HOW OUR ACTUAL
ANNUAL PLAN COMES ABOUT, BUT THIS WAS SORT OF THE BACKDROP OF
THE LEGISLATION THAT LEADS TO US BEING HERE.
SO LET ME STOP THERE. QUESTIONS?
MYRIAM.>>YES, I HAD A QUESTION ABOUT A
CHART THAT YOU HAD WITH THE DISEASE IN CURRENT AND THEN WHAT
IS EXPECTED IN 2020. IT SAID DELAY DISEASE ONSET.
ON THAT CHART.>>RIGHT.
>>I GUESS MY QUESTION IS, HOW DO YOU GO ABOUT DELAYING IT, IF
SOMEONE DOESN’T HAVE ANY SYMPTOMS?
>>SURE. IT’S A GOOD — THE QUESTION YOU
REALLY RAISE IS HOW ARE WE GOING TO MEASURE THAT ASPECT OF THE
PLAN? IF THAT’S THE MAJOR ASPECT OF
THE PLAN, HOW DO YOU MEASURE THAT?
IT’S NOT A TRIVIAL QUESTION, BECAUSE WHAT YOU WOULD PROBABLY
BE LOOKING AT WOULD BE SOME EPIDEMIOLOGIC FEATURES OF THE
DISEASE. SO WHAT IS THE SO-CALLED
INCIDENCE RATE OF THE DISEASE RIGHT NOW?
WHAT DOES THAT MEAN? THAT MEANS HOW MANY PEOPLE ARE
PROGRESSING FROM COGNITIVELY NORMAL TO, SAY, MILD COGNITIVE
IMPAIRMENT OR FROM MILD COGNITIVE IMPAIRMENT TO THE
DEMENTIA STAGE? SO WE KNOW THOSE NUMBERS FROM A
VARIETY OF POPULATION-BASED STUDIES THAT THE NATIONAL
INSTITUTE ON AGING HAS SUPPORTED OVER THE YEARS.
SO IF THOSE NUMBERS ARE CHANGING NOW, IF THE INCIDENT RATE IS
DOWN, IF THERE ARE FEWER PEOPLE GOING FROM NORMAL COGNITION TO
MILD COGNITIVE IMPAIRMENT OVER A PERIOD OF TIME, THAT WOULD BE AN
INDEX OF THE FACT THAT WE ARE DELAYING THE ONSET OF THE
DISEASE. THINGS LIKE THAT.
BUT IT’S A GOOD QUESTION BECAUSE IT’S NOT STRAIGHTFORWARD.
>>JUST I GUESS A COMMENT THAT THE BYPASS BUDGET THAT YOU
MENTIONED, IT ADDRESSES THE COST ON THE RESEARCH SIDE, NOT ON THE
LONG TERM SERVICES AND SUPPORTS, AND CLINICAL SERVICES.
>>THAT’S CORRECT.>>OKAY.
>>AND THAT’S BEEN AN ISSUE. WE’LL PROBABLY CIRCLE BACK TO
THAT LATER ON TODAY, BUT YES, IT’S JUST THE RESEARCH.
SHARI.>>SO THANK YOU FOR POINTING OUT
THAT THIS IS ALL ITERATIVE AND WE HAVE THESE DISTINCTIONS FOR
THE WORK GROUPS AND YET THERE IS A CONSIDERABLE AMOUNT OF
OVERLAP. I THINK THAT’S AN IMPORTANT
POINT. SOME MAY WONDER WHY IT’S SO
ARTIFICIALLY DEFINED, AND IT’S REALLY JUST FOR MEASUREMENT
PURPOSES. BUT I ALSO, JUST — I’VE SAID
THIS BEFORE, AS FAR AS THE OVERARCHING GOAL, EFFECTIVELY
TREATING ALZHEIMER’S DISEASE, I WOULD ALSO WANT TO MAKE THE CASE
THAT IT IS ALSO THAT EFFECTIVE MANAGEMENT OF PEOPLE WHO HAVE
THE DISEASE.>>RIGHT.
>>SO CLINICAL SERVICES AND LONG TERM SERVICES REALLY KIND OF GO
BEYOND JUST THE ACTUAL ACT OF TREATMENT.
SO JUST TO MAKE THAT POINT.>>GOOD POINT.
I MEAN, I THINK THE TERMINOLOGY CAN GET IN THE WAY, BUT WE’RE
NOT JUST TALKING ABOUT THE MAGIC PILL, BUT WE’RE TALKING ABOUT
THE BROADER SCOPE OF THE DISEASE PROCESS.
LAUREL, THEN GARY.>>JUST A CLARIFICATION, EXCUSE
ME IF THIS TAKES A SECOND, BUT IN SARAH’S PRESENTATION, WE
CLEARLY CAN’T RECOMMEND THINGS THAT ARE AGAINST THE LAW.
THE LAW THAT EMBODIES US. OR ENABLES US.
SHE USED THE TERM “LAW” SEVERAL TIMES.
BUT IF WE’RE WELL WITHIN THE CHARGE TO OUR GROUP, IMPROVE
CLINICAL CARE, WE CAN MAKE ALL KINDS OF RECOMMENDATIONS.
SO THEN MY QUESTION IS, WHEN WE MAKE RECOMMENDATIONS, JUST FOR
EXAMPLE’S SAKE, JUST TO BE NOT SO VAGUE, IT IF WE SAY CHANGING
REIMBURSEMENT FOR DIAGNOSIS AND CARE PLANNING SO THE PATIENT
DOESN’T HAVE TO BE PRESENT, SO THAT FAMILIES GET SOME ADVANCED
CARE PLANNING AT THE TIME OF OR RIGHT NEAR THE TIME OF
DIAGNOSIS, AND THAT SHOULD BE COVERED BY MEDICARE IN A NEW
WAY, THAT’S NOT AGAINST THE LAW, IT’S A NEW IDEA, BUT IF THE
RESPONSE IS WE CAN’T DO THAT, JUST CAN’T HAPPEN, THAT’S A
FISCAL STATEMENT, BUT IT’S NOT AGAINST THE LAW.
IS THAT FAIR?>>I THINK YOU’RE
MISUNDERSTANDING WHAT SHE MEANT BY LAW.
WHAT WE’RE TRYING TO SAY IS THAT YOUR RECOMMENDATIONS ARE
UNCONSTRAINED. YOU CAN RECOMMEND ANYTHING.
WHAT YOU DO HAVE TO UNDERSTAND IS THAT FOR US, FOR THE FEDS,
IT’S ILLEGAL FOR US TO CHANGE THE WAY MEDICARE REIMBURSES.
WE CAN’T ASK FOR THAT TO HAPPEN. THAT’S A LEGISLATIVE CHANGE THAT
WOULD HAVE TO COME FROM THE PEOPLE UP THE STREET IN THAT BIG
BUILDING OVER THERE. AND THEY WOULD HAVE TO WRITE A
LAW OR MAKE A CHANGE TO THE EXISTING LAW WHICH WE DON’T HAVE
THE ABILITY TO DO.>>RIGHT.
SO YOU ARE WELCOME TO RECOMMEND THAT FOREVER, BUT WE CAN —
THAT’S WHY WE HAVE TO SAY NO BECAUSE THAT’S WHERE OUR
CONSTRAINTS COME IN.>>I THINK THIS GETS TO A REAL
FUNDAMENTAL PROBLEM FOR US, BECAUSE IF WE COULD ONLY DO WHAT
YOU CAN DO, WE CAN’T ACHIEVE THESE GOALS.
JUST FLAT OUT, WE’RE JUST NOT GETTING THERE.
BUT IF WE CAN MAKE RECOMMENDATIONS THAT WE
UNDERSTAND REQUIRE MOREY SOURCES, IT GETS TO THIS STICKY
POINT TO WHERE THE SECRETARY DOESN’T PUT THEM IN THE PLAN
BECAUSE SHE DOESN’T HAVE THE RESOURCES OR FOR WHATEVER
REASON, BUT WE ARE TRYING TO MAKE A PLAN THAT WILL GET US
PROGRESS. SO IF IT TAKES GETTING MORE
MONEY, YOU KNOW, FROM THE CONGRESSIONAL SIDE AND CHANGE IN
THE BUDGET OR THE PRESIDENT, GREAT, LET’S TOSS IT TO THEM AND
SAY GREAT, WE NEED YOUR HELP. BUT WE HAVE THE STICKING POINT
OF WE CAN’T DO THAT BECAUSE IT’S NOT IN OUR BUDGET SO IT NEVER
GETS IN THE PLAN.>>SO A, I WOULD ASK YOU TO HOLD
THAT THOUGHT BECAUSE WE’RE GOING TO ASK YOU TO GO INTO THAT IN MY
PRESENTATION, BUT ALSO, WE ALSO CAN’T GO ASK THE PRESIDENT OR
CONGRESS TO DO THOSE THINGS. YOU GUYS CAN.
WE CAN’T AGAIN. SO IF YOU GUYS REALLY FEEL, YOU
KNOW, THAT A LEGISLATIVE CHANGE IS STRICTLY NECESSARY, YOU ARE
AS A PRIVATE CITIZEN COMPLETELY ABLE TO GO UP TO CONGRESS,
ANYBODY IN CONGRESS, AND ASK FOR THAT TO HAPPEN OR, YOU KNOW,
LOBBY FOR THAT IN WHATEVER WAY YOU CAN.
BUT WE, AGAIN, WE’RE NOT ABLE TO DO THAT.
IT’S THE LAW. WE’RE NOT JUST DOING IT TO BE
DIFFICULT. I PROMISE.
WE AGREE WITH YOU, BUT WE CAN’T DO THINGS, IT’S THE LAW.
>>SO WE CAN PUT IT IN RECOMMENDATIONS, AND THEY EXIST
AND THEY GO TO CONGRESS, BUT THE SECRETARY, BECAUSE HE/SHE,
CURRENTLY SHE, CAN’T SIGN OFF ON SOMETHING LIKE THAT BECAUSE IT’S
NOT WITHIN HER BUDGET –>>IT’S NOT HER BUDGET, IT’S NOT
HER JURISDICTION.>>SO IT’S NEVER GOING TO MAKE
IT TO THE PLAN –>>UNLESS BY ACT OF CONGRESS,
SOMEONE CHANGES THE LEGISLATION AND SAYS WE HAVE TO DO THAT.
>>AND TO DEFER THAT, IF YOU RECOMMENDED A REORGANIZATION,
FOR EXAMPLE, OF CMS, I’M JUST — I’M NOT THINKING OF THAT BUT
IF — THE SECRETARY WOULD PROBABLY NOT HAVE CONSTRAINTS ON
ADDING A NEW DIVISION TO CMS OR SOMETHING LIKE THAT, SO THAT
WOULDN’T MAKE THE PLAN, SO ANYTHING CROSS CUTTING,
REQUIRING BUDGET, REQUIRING REORGANIZATION, IS NEVER GOING
TO MAKE IT TO THE PLAN?>>SO I THINK IT’S HELPFUL TO
THINK OF THESE AS COMPLEMENTARY PIECES AND RECOMMENDATIONS IN
THE PLAN, NOT SO MUCH OF AS A SUBSET, WHICH IS WHAT I THINK
I’M HEARING, LAUREL. SO THE AMBITIONS SHOULD BE
COMMUNICATED AND SHOULD BE TAKEN AS FAR AS THEY CAN GO, BUT IF
YOU HARKEN BACK TO WHAT SARAH SAID ABOUT SORT OF THE BLUEPRINT
NATURE OF THE PLAN, IT’S NOT TO DIMINISH THE AMBITION, BUT IT’S
TO HAVE A PLAN THAT IS IMPLEMENTABLE GIVEN THE
REALITIES OF WHAT WE’RE WORKING IN.
DO THINGS CHANGE? OF COURSE THEY DO.
THEY DON’T NECESSARILY CHANGE BECAUSE OF THE PLAN, THEY CHANGE
BECAUSE OF OUTSIDE ACTIVITIES THAT CREATE A DIFFERENT
ENVIRONMENT, WHETHER IT’S A FISCAL ENVIRONMENT OR RESOURCE
OR WHAT HAVE YOU, FOR THOSE AMBITIONS TO MATERIALIZE.
SO I GET WHERE YOU’RE COMING FROM, IT COULD BE SEEN AS THESE
THINGS BUMP INTO ONE ANOTHER, BUT I THINK THAT THEY ARE VERY
COMPLEMENTARY IN THAT A RECOMMENDATION TYPE OF DOCUMENT
CAN HAVE THAT BROADER REACH AND CAN HELP SET THE STAGE FOR THE
KINDS OF CHANGES THAT WOULD THEN ALLOW THE PLAN TO MOVE IN THAT
DIRECTION.>>I UNDERSTAND THAT, TO SOME
EXTENT, WE THE NON-FEDERAL MEMBERS NEED TO OWN THAT MORE IN
TERMS OF GETTING THAT MESSAGE OUT, BE MORE, LIKE, LOBBYISTS IN
TERMS OF GETTING THAT MESSAGE OUT.
>>YEAH, AND LIKE I SAID, IN MY PRESENTATION, I DID HAVE SOME
IDEAS ON HOW WE CAN IMPROVE THAT, WHICH ACTUALLY HELEN
HELPED ME WITH THAT AS WELL SO WE CAN DISCUSS BETTER WAYS OF
COORDINATING AND SEEING HOW FAR WE CAN PUSH IT GIVEN OUR
CONSTRAINTS.>>WITHOUT DOMINATING, ONE MORE
LAST THING, IF YOU THINK ABOUT A DIFFERENT DISEASE OR DIFFERENT
PROBLEM THAT MIGHT REQUIRE A NATIONAL PLAN TO ADDRESS, OF
WHICH THERE ARE MANY, IMAGINE — AND I CERTAINLY HOPE IT WOULDN’T
BE A FACA, BUT THE NATIONAL PLAN TO DEAL WITH EBOLA IN THE UNITED
STATES, AND SOMEONE WAS CHARGED OR A GROUP OF PEOPLE WAS
CHARGED, CAN YOU IMAGINE SOMEONE SAYING, WELL, YOU KNOW, WE NEED
MORE RESEARCH MONEY, WE NEED TO REORGANIZE STATE HEALTH
DEPARTMENTS TO DO CASE DETECTION AND WE NEED TO IMPROVE CARE AND
THEN IT WOULD BE LIKE, NO, WE DON’T HAVE THE BUDGET FOR THAT,
DON’T HAVE THE BUDGET FOR THAT, DON’T HAVE THE BUDGET FOR THAT,
CAN’T DO IT, THAT WOULD BE SHOCKING TO EVERYONE BECAUSE IT
WOULD TAKE EVERYBODY, IT WOULD TAKE THE LEGISLATURE, THE
PRESIDENT, AND CMS AND CDC, IT WOULD TAKE EVERYBODY CHANGING
THE WAY THEY CURRENTLY ALLOCATE MONEY AND NEW MONEY IN ORDER TO
ADDRESS THAT, AND I SEE THE SIMILARITY TO ALZHEIMER’S
DISEASE, BUT WE ARE JUST TREATING IT SO DIFFERENTLY.
>>I HEAR WHAT YOU’RE SAYING BUT I WOULD ALSO ADD THAT THAT
PRESUPPOSES OR SORT OF PAINTS A PICTURE OF A STATIC ENVIRONMENT
THAT NONE OF US WISHES TO SEE. THE FACT THAT SOMETHING LIKE
EBOLA ALSO CAPTURES A LOT OF THE PUBLIC ATTENTION, YOU HAVE
PEOPLE OF THE UNITED STATES OF AMERICA FEARING FOR THEIR LIVES
THINKING THEY’RE GOING TO GET EBOLA.
YOU HAVE A LOT OF ACTIVITY THAT IS GENERATED OFF OF THAT KIND OF
THING. SO PART OF IT IS ALSO OUR CHARGE
TO GET THAT KIND OF PASSION AND THAT KIND OF PUBLIC AWARENESS,
WHICH MANY OF YOU DO AS PART OF YOUR JOBS, OUT THERE, BECAUSE
THAT DOES MOVE A LOT OF DIFFERENT IMPORTANT ACTORS THAT
THEN SET THE STAGE FOR THE KINDS OF CHANGES YOU’RE TALKING ABOUT.
>>IF I CAN JUST ADD ON TO THAT, EBOLA IS A GREAT EXAMPLE OF
CONGRESS GETTING INTO IT, CREATING THE LEGISLATIVE CHANGE.
I MEAN, BUT AGAIN, NO ONE IN HHS SAID DEAR CONGRESS, PLEASE GIVE
US MONEY FOR EBOLA. CONGRESS WAS SCARED BY EBOLA,
LIKE EVERYONE ELSE, AND CONGRESS JUMPED IN AND DID SOMETHING.
SO THAT’S WHAT I’M TRYING TO SAY, I MEAN, THOSE THINGS
HAPPEN, THEY DON’T HAPPEN IN A VACUUM, THERE’S AN ENVIRONMENT,
PEOPLE ARE SCARED, CONGRESS IS SCARED, CONGRESS JUMPED IN AND
CAN DID SOMETHING, THE PRESIDENT JUMPED IN AND DID SOMETHING.
RIGHT. AND ONE FINAL POINT, AT THE SAME
TIME, THE DEPARTMENT IS NOT PASSIVELY SITTING BACK WAITING
FOR THINGS TO HAPPEN, AND I THINK THAT’S CLEAR AS WELL.
THERE’S A SENSE OF IMMEDIACY, THERE’S NOT WELL, WE’LL WAIT FOR
MONEY TO COME TO MAKE THINGS HAPPEN.
WE ARE DOING ALL OF THAT URGENT WORK, BUT AGAIN, IT’S THE
COMPLEMENTARY ASPECT OF WHAT OUR ROLES ARE THAT REALLY WILL —
WHEN WE’RE WORKING IN CONCERT, WE’RE MUCH MORE EFFECTIVE.
>>THANK YOU. THIS OVERVIEW IS VERY HELPFUL TO
SYSTEMATICALLY GO THROUGH AND ORIENT ME, SO I HAVE ONE
CLARIFYING QUESTION ABOUT THE FEDERAL WORK GROUPS AND
DISTINCTION BETWEEN THE FEDERAL WORK GROUPS AND THE
SUBCOMMITTEE, AND IS THE FEDERAL WORK GROUP OPERATING SEPARATE
FROM NAPA? IF YOU COULD JUST EXPAND ON THAT
DISTINCTION.>>I’LL SAY A COUPLE WORDS, THEN
YOU’LL TURN IT TO ROHINI AND LINDA.
THE FEDERAL WORK GROUPS ARE ACTUALLY THE GROUP THAT IS
FINALLY CHARGED WITH GENERATING THE PLAN, SO THE PLAN THAT IS
WRITTEN BY THE HHS STAFF IS INFORMED BY THOSE FEDERAL WORK
GROUPS. AS I SAY, THOSE GROUPS ALSO
PARTICIPATE INTO SUBCOMMITTEES THAT ARE A COMBINATION OF THE
TWO, BUT THE FEDERAL WORK GROUPS ARE SORT OF RESPONSIBLE FOR
ACTUALLY GENERATING THE PLAN UNDER THE SECRETARY’S GUIDANCE.
>>AND THE FEDERAL WORK GROUPS WAS SORT OF AN ATTEMPT TO BRING
THE AGENCIES THAT ARE WORKING ON, SAY, THE SAME THING TOGETHER
SO THAT THEY’RE ALSO TALKING TO EACH OTHER AND COORDINATING
ACROSS, AND THEN WHEN WE DO MEET WITH THE SUBCOMMITTEE AT LARGE,
SO EVERYONE IS THERE OFFERING WHAT THEIR AGENCIES CAN DO AND
WHAT SORT OF HAS BEEN DISCUSSED INTERNALLY AND CAN BE SHARED
THAT WAY. AND I’LL EXPLAIN THAT A LITTLE
MORE ABOUT THE PROCESS OF THE PLAN.
>>SO ONCE AGAIN FOR RESPECTING THE CONSTRAINTS THAT ALL OF YOU
ON THE FEDERAL SIDE HAVE, LAUREL KIND OF GOT CLOSE HERE TO THIS,
I THINK, IN THE SENSE OF — IT’S THE ADMINISTRATION, RIGHT?
IF THE ADMINISTRATION WANTS TO PUT SOMETHING FORWARD, IT CAN.
THAT’S THE OPTION OF THE ADMINISTRATION.
YOU ALL WORK FOR THE ADMINISTRATION AND WE RECOGNIZE
THAT. RESPECT THAT.
JUST, YOU KNOW, FOR CLARIFICATION ON EBOLA, I
BELIEVE THE PRESIDENT, HHS, DID ASK FOR IT, AND YOU KNOW
APPROPRIATELY. REGRETTABLY, FOLKS, WE’RE NEVER
GOING TO GET THE KIND OF ATTENTION THAT COMMUNICABLE
DISEASE DOES. IT’S NOT GOING TO HAPPEN.
I REGRET TO SAY THAT, BUT THAT’S A REALITY.
COMMUNICABLE DISEASE IS ALWAYS GOING TO MOVE FASTER, BUT THAT
DOESN’T DIMINISH WHAT IS OUR RESPONSIBILITY FROM THE
NON-FEDERAL SIDE TO ADVANCE THESE THINGS, BOTH FROM WITHIN
THIS COUNCIL AND THEN OUTSIDE OF THE COUNCIL IN WHAT MANY OF US
DO EVERY DAY TO THEN ADVANCE THINGS BASED ON THE
RECOMMENDATIONS THAT THIS COUNCIL HAS THE OPPORTUNITY TO
MAKE. IN FACT, MANY OF THE THINGS WE
HAVE ADVANCED ON HAVE COME FROM THOSE KINDS OF STEPS.
THE EXISTENCE OF NAPA DERIVES IT SELF FROM THAT, THE
RECOMMENDATIONS WE’VE DONE BEFORE HAVE — THE PURSUIT OF
OTHER POSSIBILITIES. SO IT REALLY COMES DOWN TO THE
ADMINISTRATION NOT WANTING TO DO IT, WHICH IS, I THINK, WHAT YOU
WERE GETTING AT, LAUREL, THAT’S OOO BAD, AND AGAIN WE’RE NOT
BLAMING YOU FOR THAT. BUT THAT IS TAU BAD BECAUSE OF
THE ENORMITY OF THE PROBLEM OF DEMENTIA IN AMERICA.
BUT THAT SHOULD NOT, ONCE AGAIN, LIMIT OUR PURSUIT OF THESE
THINGS. THAT WE HAVE THE OPPORTUNITY
HERE ON THE COUNCIL TO PUSH THOSE THINGS FORWARD TO
HOPEFULLY GET TO THE STAGE WHERE THESE THINGS ARE EMBRACED IN A
WAY THAT THEY SHOULD BE ULTIMATELY, IT’S REALLY
IMPORTANT TO NOTE THAT THE LEGISLATION AND I THINK RON
TOUCHED THIS, THE LEGISLATION REQUIRES BOTH PROGRESS UPDATE
FROM US AND ALSO IT REQUIRES US TO GO DIRECTLY TO CONGRESS AS
WELL AS TO THE ADMINISTRATION.>>I’M SORRY, COULD YOU CLARIFY
WHEN YOU SAY THE ADMINISTRATION DOESN’T WANT TO DO THIS
CONSIDERING THE PRESIDENT IS THE ONE WHO SIGNED THIS INTO LAW,
WHAT EXACTLY DO YOU MEAN, HARRY?>>WELL, USING THE ALZHEIMER’S
RESEARCH BUDGET AS A POLITICAL FOOTBALL, SAYING TO CONGRESS
THAT IF THEY RAISED TAXES, THEN THE ADMINISTRATION WOULD RAISE
FUNDING FOR ALZHEIMER’S RESEARCH DOESN’T SEEM RIGHT TO ME.
AS AN EXAMPLE.>>SORRY, I THINK GARY’S ACTUAL
QUESTION WAS I’D LIKE TO ACTRESS THAT DIRECTLY, SO YOU WERE
TALKING ABOUT HOW THE SUBCOMMITTEES INTERACT, AND I
COULD TELL YOU HOW IT WORKS FOR THE LONG TERM SERVICES AND
SUPPORTS. WE HAVE THE — AS ROHINI SAID,
WE HAVE THE FEDERAL AGENCIES THAT BASICALLY USE THAT AS AN
OPPORTUNITY TO COORDINATE THEIR EFFORTS, MAKE SURE THEY
COMPLEMENT ONE ANOTHER, THAT SORT OF THING, AND THE SHARE OF
THAT FEDERAL COMMITTEE WORKED VERY CLOSELY WITH DAVE HOFFMAN
FROM NEW YORK STATE WHO HELD HIS OWN MEETINGS, WE WERE INVITED TO
THEM, THE FEDERAL PEOPLE, AND WE HAD A CHANCE TO HAVE A DIALOGUE
ABOUT WHAT THE NON-FEDERAL FOLKS WERE GOING TO MAKE IN THE WAY OF
RECOMMENDATIONS, AND WE GOT A CHANCE TO UNDERSTAND THE
REASONING BEHIND THAT, HAD GOOD WORKING RELATIONSHIPS, AND I’LL
GIVE YOU AN EXAMPLE, YOU’LL HEAR MORE ABOUT THIS WHEN WE GIVE AN
UPDATE ON OUR PROGRESS, BUT WE HAVE, IN THE ADMINISTRATION FOR
COMMUNITY LIVING, WHICH IS WHERE THE ADMINISTRATION ON AGING IS
HOUSED, WE HAVE A PROGRAM CALLED THE ALZHEIMER’S DISEASE
SUPPORTIVE SERVICES PROGRAM. THE FEDERAL LAW STATES THAT THE
GRANTS HAVE TO GO TO IT STATE. THE FEDERAL LAW ALSO STATES THAT
THERE’S A MINIMUM OF SERVICE REQUIREMENT.
WE HAVE FLEXIBILITY AROUND HOW WE CAN MANAGE THOSE GRANTS AND
WE’VE SHOWN SOME FLEXIBILITY OVER TIME, WE’VE DONE DEMENTIA
CAPABILITY, THAT ARE RECOMMENDATIONS FROM THE
NON-FEDERAL MEMBERS OF THE GROUP, BUT WE CAN’T DECIDE TO
GIVE THE STATE GRANTS TO — JUST TO HAWAII OR TO THE CITY OF
NEW YORK. WE HAVE TO FOLLOW THAT LAW.
WE HAVE ABOUT $4 MILLION A YEAR TO DO IT.
WE CAN’T SPEND $40 MILLION ON IT.
SO WHEN WE TALK ABOUT THE CONSTRAINTS OF THE LAW, AS LINDA
WAS SAYING, EVERYTHING COMPLEMENTS ITSELF, AND WE DO
THAT BY COMMUNICATION AND THAT HAPPENS ON A REGULAR BASIS, AT
LEAST QUARTERLY, NON-FEDERAL MEMBERS MEET, FEDERAL MEMBERS
MEET AND WE HAVE DIALOGUE THAT HELPS YOU MOVE FORWARD AS MUCH
AS WE CAN WITHIN OUR CONSTRAINTS TO MEET THE RECOMMENDATIONS OF
THE NON-FEDERAL MEMBERS. THEY DON’T EXIST IN ISOLATION
WITH ONE ANOTHER, THEY COMPLIMENT ONE ANOTHER, AND WE
LEARN FROM EACH OTHER OVER TIME.>>THANKS, JANE.

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