GOOD AFTERNOON IN RESPONSE TO
THE KOBE NINETEEN EMERGENCY AND
TO PROTECT THE PUBLIC
LEGISLATORS AND EMPLOYEES WE
MUST LIMIT NONESSENTIAL
GATHERINGS AT HER HERE TO SOCIAL
DISTANCING AND FACE COVERING
GUIDELINES. AND COMPLIANCE WITH
THE ORDERS THE SENATE HAS MADE
NECESSARY ADJUSTMENTS TO NORMAL
PRACTICE IN ORDER TO ENSURE
THAT OUR PUBLIC CONTINUES TO
HAVE ACCESS TO THE LEGISLATIVE
PROCESS. IN THE SENATE CHAMBER
WITH ME TODAY ARE CENTERS NEWMAN
WHOSE CHAIRS AND CHAIRS THE
SPECIAL COMMITTEE ON PANDEMIC
EMERGENCY RESPONSE. THERE
MELINDA IS THE VICE CHAIR OF THE
SENATE COMMITTEE ONHEALTH.
CONSIDER AG CENTER'S ADMIN LEAVE
A ROCK RUBIO IN WIENER. WE ALSO
HAVE PANELISTS WHO ARE
PARTICIPATING REMOTELY. FOR
REMOTE PARTICIPANTS PLEASE MEET
YOUR PHONES OR COMPUTERS THIS
WILL GREATLY AID IN ELIMINATING
ANY ACOUSTICAL FEEDBACK. I ASK
THAT EACH TIME EVERY TIME YOU
WISH TO BE RECOGNIZED THAT YOU
USE THE RAZOR HAND FEATURE IN
THE PROGRAM. EACH TIME YOU ARE
RECOGNIZED TO SPEAK A POP UP
WINDOW WILL APPEAR ASKING IF YOU
WOULD LIKE TO AND MUTE PLEASE
SELECT YOUR MUTE BUTTON BEFORE
YOU BEGIN TO SPEAK. IT PERSONNEL
WILL PUT YOU BACK ON YOU WHEN
YOU ARE DONE ONCE RECOGNIZED TO
SPEAK. PLEASE MAKE SURE YOU CAN
BE SEEN ON THE SCREEN STATE YOUR
NAME THEN YOU ARE READY TO
ADDRESS THE COMMITTEE. TO ALLOW.
PUBLIC ACCESS WE HAVE ADMITTED
MEMBERS OF THE PUBLIC IN THE
HEARING ROOM TO THE EXTENT THAT
SOCIAL DISTANCING REQUIREMENTS
ALLOW. I'LL BE USING A
TELECONFERENCE ORVIS FOR THOSE
INDIVIDUALS WHO WISH TO TESTIFY
TODAY. BRAUN THE VIGILS WISHING
TO PROVIDE PUBLIC COMMENT.
PARTICIPANT TOLL FREE NUMBER AND
ACCESS CODE IS POSTED ON OUR
COMMITTEE WEBSITE. AND IT WILL
BE DISPLAYED ON THE SCREEN AND
I'LL ANNOUNCE IT NOW. TODAY'S
PURCHASE MY NUMBER IS EIGHT FOUR
FOUR. TWO NINE ONE FOUR ONE
EIGHT FIVE. AND THE ACCESS CODE
IS. ONE TWO SIX FIVE TWO ONE
EIGHT. FOR DETAILED INSTRUCTIONS
ON HOW THE TELECONFERENCES THEM
WORKS PLEASE REFER TO THE
SENATE. AWARD COMMITTEE WEBSITE
FOR TODAY'S HEARING WE'LL BE
HEARING ALL OF THE PANELS OF
WITNESSES ON THE AGENDA PRIOR TO
TAKING ANY PUBLIC COMMENT ONCE
WE HAVE HEARD FROM FROM ALL OF
THE WITNESSES WE WILL HAVE A
PUBLIC COMMENT PERIOD FOR THOSE
WISHING TO COMMENT ON THAT ON
TOPICS ON TODAY'S AGENDA. IT'S
IMPORTANT TO NOTE THAT TODAY'S
HEARING HAS A HARD STOP AT THREE
THIRTY PM. AND THAT WE WILL
STRICTLY MODERATE PUBLIC COMMENT
TO ENSURE IS FOCUSED ON THE TOP
OF YOUR AGENDA. IF YOU HAVE NOT
HAD AN OPPORTUNITY TO MAKE A
COMMENT BY THREE THIRTY PM YOU.
CAN ACTUALLY ENTER COMMENT BY
EMAILING THE SENATE HEALTH
COMMITTEE TO PUT YOUR REMARKS ON
TO THE RECORD. PLEASE NOTE THAT
IN ORDER FOR US TO HEAR YOU
CLEARLY AND AVOID ACOUSTIC
FEEDBACK YOU MUST MUTE THE
DEVICE YOU'RE WATCHING THE
HEARING ON PRIOR TO GIVING
TESTIMONY OVER THE PHONE. IT IS
IMPORTANT THAT WE HEAR FROM YOU
AND WE THANK YOU FOR YOUR
PATIENCE. I WILL MAINTAIN
DECORUM DURING THE HEARING AS IS
CUSTOMARY. IN ANY INDIVIDUAL
WHOSE DESTRUCTIVE MAY BE REMOVED
FROM THE HEARING ROOM OR FROM
THE REMOTE MEETING SERVICE OR
HAVE THE CONNECTIONS MUTED. SO
BEFORE WE GET OUR PRESENTERS- TO
INTRODUCE THE TOPIC I'LL MAKE A
NOTE THAT WAS JUST TWO YEARS AGO
ON JANUARY TWENTY SIX TWENTY
TWENTY. THE CDC CONFIRM THE VERY
FIRST CASE A COMB IT IN
CALIFORNIA. AND ON FEBRUARY
SIXTH TWENTY TWENTY A PERSON
FROM SAN JOSE BECAME THE FIRST
COPA DATA IN THE UNITED STATES
DUE TO MYOCARDITIS FROM THE
NOVEL CORONAVIRUS INFECTION. AND
IN A LITTLE OVER TWO YEARS THE
CDC HAS REPORTED AS OF
YESTERDAY. SEVENTY NINE MILLION
A 1-006-500-0300 EIGHT KOBE
CASES IN THE UNITED STATES. AND. NINE HUNDRED FIFTY SEVEN
THOUSAND SEVEN HUNDRED FIFTY TWO
CONFIRMED DEATHS FROM COPD
NINETEEN. THIS INCLUDES OVER ONE
THOUSAND CHILDREN. YOUR BID OVER
A MILLION EXCESS DEATHS IN THE
U. S. DURING THE PANDEMIC. NOW
GIVEN THE HORRIFYING NUMBERS A
PANDEMIC DEATHS MUCH OF THE
FOCUS ON ADDRESSING THE PANDEMIC
HAS BEEN. ON INCREASING THE
DEATH TOLL DUE TO THE CORONA
VIRUS OR DUE TO OVERWHELMED
HOSPITALS AND INTENSIVE CARE
UNITS. HOWEVER DEATH AND
HOSPITALIZATIONS ARE NOT THE
ONLY SERIOUS CONSEQUENCE OF KOBE
. OVER NINETEEN AFFECTION CAN
LEAD TO HIGHER RATES OF
PERSISTENT DISABILITY SOMETIMES
REFERRED TO AS LONG COATED.
RECENTLY THE UNITED KINGDOM THE
OFFICE OF NATIONAL STATISTICS
SHOW THAT A RAPID RISE IN THERE
WAS A RAPID RISE IN LONG TERM
ILLNESS IN PEOPLE AGED SIXTEEN
TO SIXTY FOUR OF THE LAST TWO
YEARS. WITH MORE THAN A THIRD OF
THE WORKING AGE PEOPLE IN THE
UNITED KINGDOM SUFFERING FROM
LONG TERM ILLNESS. THE STUDIES
ALONG KOVAN INDICATE THAT OVER A
QUARTER OFPEOPLE INFECTED WITH
KOBE. DEVELOP ONE OR MORE
PERSISTENT SYMPTOMS LASTING
MONTHS SOMETIMES. EVEN GREATER
SIX MONTHS AFTER INFECTION.
INCLUDINGPEOPLE WHO WERE
INITIALLY ASYMPTOMATIC ONLY HAD
MILD ACUTE SYMPTOMS. SO IN
ADDITION TO THAT WHAT IS THE
RESEARCH REVEALING ABOUT THE
LONG TERM CONSEQUENCES OF BEING
INFECTED WITH THIS CORONAVIRUS.
MANY PATIENTS REPORT NEW OR
ONGOING NEUROLOGICAL SYMPTOMS
AFTER COVE INFECTION INCLUDING
CHANGES IN SMELL OR TASTE BRAIN
FOG INCLUDING REDUCED ATTENTION
AND MEMORY FATIGUE HEADACHE
MUSCLE PAIN SLEEP PROBLEMS
DIZZINESS AND MOOD CHANGES. A
RECENT OXFORD STUDY OF BRAIN
SCANS TAKEN BEFORE AND AFTER CO
INFECTION FOUND BRAIN SHRINKAGE.
AND COGNITIVE FUNCTION DEFICITS
. KEVIN NINETEEN FACTION HAS
ALSO BEEN LAND LINKED WITH NEW
PSYCHOTIC EPISODES IN PATIENTS.
IN ADDITION TO THE SEVERE ACUTE
LUNG DAMAGE REQUIRED PROLONGED
VENTILATION INTENSIVE CARE ECMO
OR EVEN DOUBLE LUNG TRANSPLANT
THE ONES WE HEAR ABOUT. THE
NINETEEN CAN ALSO CAUSE LONG
TERM LUNG DAMAGE RESULTING IN
PERSISTENT SHORTNESS OF BREATH.
THE STUDY OF VETERAN AFFAIRS THE
ISSUE OF THE CODE FACTIONS
ASSOCIATED WITH AN INCREASE IN
TWENTY CARDIO VASCULAR PROBLEMS
OVER A YEAR AFTER INITIAL
INFECTION. EVEN IN PATIENTS WITH
MILD DISEASE OR WHO ARE AT LOW
RISK OF CARDIOVASCULAR DISEASE.
THE RISK OF HEART FAILURE
INCREASED BY 72% HEART ATTACKS
BY 63% MYOCARDITIS BY 510038% IN
STROKE BY 52% QURBAN MAY ALSO-TRIGGER ON GOING AUTO IMMUNE
RESPONSE CHRONIC INFLAMMATION.
THE FACT OVER SEVEN THOUSAND
FIVE HUNDRED CHILDREN DEVELOP
THIS YEAR'S CONDITION CALLED
MULTI SYSTEM INFLAMMATORY
SYNDROME IN CHILDREN SOMETIMES
KNOWN AS M. I. S. C. SIXTY THREE
CHILDREN. WE'VE GOTTEN IN MY S.
C. HAVE DIED. IN FACT THE
MAJORITY OF M. I. S. T. PATIENTS
ARE LATINO OR BLACK. M. I. C. M.
I. S. C. AS A CONDITION. FOLLOW
FOLLOWING COINFECTION WHERE
DIFFERENT PARTS OF THE BODY
BECOME INFLAMED TO CLEAN THE
HEART LUNGS KIDNEYS BRAIN AND
SKIN EYES AND GOT. NOW DIABETES
IS A RISK FACTOR FOR COVER
NINETEEN INCUMBENT INFECTIONS
BEEN ASSOCIATED WORSENING
DIABETES SYMPTOMS. HOWEVER
CHILDREN WHO HAVE BEEN INFECTED
WITH COVE IT ALSO BEEN OBSERVED
TO BE MORE THAN TWICE AS LIKELY
TO BE DIAGNOSED WITH DIABETES.
PREGNANT WOMEN AT HIGH RISK FOR
SEVERE DISEASE UNTIL THE
NINETEEN UNTIL THE INFECTION IN
PREGNANT WOMEN ASSOCIATE WITH A
THREE FOLD INCREASE IN
STILLBIRTH. AS WELL AS A FIVE
TIME RISK OF DEATH FOR THE WOMAN
HERSELF. IN ADDITION COVER
NINETEEN AFFECTION PREGNANT
WOMEN'S ASSOCIATE WITH INCREASED
RATES OF VERY PRETERM BIRTH WITH
RESULTING IN INCREASED RISK OF
INFANT COMPLICATIONS. NOW
THERE'S BEEN A MINUTE THAT KOBE
BAXEEN MAYBE ASSOCIATE
INFERTILITY WHICH IS UNTRUE
BECAUSE ACTING DOES NOT CAUSE
INFERTILITY HOWEVER THE CORONA
VIRUS ITSELF. IN FACT THE TEST
SEASON **** INCUMBENT INFECTION
IN MEN ASSOCIATE WITH LOWER
SPERM COUNTS. THE SIX FOLD
INCREASE IN ERECTILE DYSFUNCTION
. AND THESE ARE ONLY SOME OF THE
POST CODE PROBLEMS HAVE BEEN
REPORTED. LONG TERM DISABILITY
FROM COVE IN NINETEEN CARRY
SIGNIFICANT FINANCIAL COST TO
THE STATE SOCIETY AS WELL AS OF
COURSE PERSONAL SUFFERING OF
PATIENTS IN CHALLENGES FOR
PARENTS AND CAREGIVERS.
CONSEQUENCES INCLUDING INCREASED
HEALTH CARE COSTS REDUCTION OR
LOSS OF EMPLOYMENT INCREASED
COSTS FOR WORKERS COMPENSATION
DISABILITY SUPPORT PROGRAMS. IN
GREATER DEMAND FOR SPECIAL
EDUCATION SERVICES. IS ESTIMATED
AS MUCH AS 30% OF COVERT HELP
BURN COULD RISE IN COVERT
INDUCED DISABILITY. NOW COVERED
NINETEEN HAS ONLY BEEN WITH US
FOR A LITTLE OVER TWO YEARS SO
DEFINITIVE DATE ON THE LONG TERM
EFFECTS OF CO INFECTION IS STILL
LIMITED. THE WHAT SCIENTISTS
HAVE RAY LEARNED. INDICATES THAT
THE LONG TERM BURDEN OF COPING
INFECTION IS LIKELY TO BE VERY
LARGE FOR BOTH FAMILIES AND
SOCIETY AS A WHOLE. AFFECTING
MILLIONS OF CALIFORNIANS. THUS
WE SHOULD TAKE EVERY EFFORT TO
PREVENT PEOPLE ESPECIALLY OUR
CHILDREN FROM EVER BEING
INFECTED OR RE INFECTED BY THIS
VERY SERIOUS DISEASE. SO THIS
HEARING A BREAK PLEASE BRING
TOGETHER EXPERTS TO SHARE WHAT
WE KNOW WE STILL HAVE TO LEARN
ABOUT THE LONG TERM EFFECTS OF
COVERT INFECTION IN LONG COATED.
WITH THAT I WOULD NOW LIKE TO
GIVE THE OPPORTUNITY FOR THE
CHAIR OF OUR OF OUR PANDEMIC
RESPONSE COMMITTEE SENATOR
NEWMAN TO MAKE SOME OPENING
REMARKS AS WELL. SENTIMENT AND
THANK YOU SENATOR PAYNE AND
THANK YOU IN ADVANCE TO ALL OF
THE PARTICIPANTS IN TODAY'S
INFORMATION HEARING. ON LONG
COVE IT. FOR THE PAST FOURTEEN
MONTHS I'VE HAD THE PRIVILEGE OF
SERVING AS THE CHAIR OF THE
SENATE SPECIAL COMMITTEE. ON
PANDEMIC EMERGENCY RESPONSE IN
THAT CAPACITY I'VE BEEN GRATEFUL
FOR THE PARTICIPATION SUPPORT
CENTER PAN. AND OTHER COLLEAGUES
AS WE GRAPPLE WITH A WIDE
VARIETY OF PANDEMIC RELATED
ISSUES. AS THEY HAVE ARISEN.
OVER THE COURSE OF THE FIRST TWO
YEARS OF THIS UNPRECEDENTED
PUBLIC HEALTH EMERGENCY THE
OVERALL FOCUS. OF PUBLIC HEALTH
POLICIES HAS UNDERSTANDABLY BEEN
GEARED TOWARD CONTAINING THE
PANDEMIC. AND ADDRESSING ITS
PROFOUND AND FREQUENTLY TRAGIC
IMPACTS. NOW AS THE STATE
CONTINUES TO SHIFT TO THIS NEXT
PHASE OF PANDEMIC MANAGEMENT.
POST ONLY KRON IT'S IMPERATIVE
THAT WE NOW START TO GET READERS
ATTENTION TO UNDERSTANDING AND
TREATING LONG COVE IT. IN THE
MONTHS AND YEARS TO COME. AS WE
WERE HERE TODAY THE SCIENTIFIC
COMMUNITY'S KNOWLEDGE OF LONG
COVERT IS DEFINITELY BETTER
TODAY THAN IT WAS A YEAR AGO.
BUT THERE'S SO MUCH MORE THAT
NEEDS TO BE DONE ESPECIALLY IN
THE AREA OF TREATMENT. MUCH IS
STILL BEING DISCOVERED ABOUT THE
STARS KOBE TO VIRUSES SENATOR
PAYNE IS NOTED- BUT WE DO KNOW
NOW THAT THE VIRUS IS REACH CAN
BE THROUGHOUT THE BODY. AND ITS
IMPACT CAN BE CAN BE BOTH
DEVASTATING AND CHRONIC FOR MANY
PEOPLE DEALING WITH LONG COVER
THEIR CENTERS CAN BE DIFFUSED
AND PUZZLING. MAKING IT EVEN
MORE CHALLENGING FOR THEM TO GET
THE CARE THEY NEED. OFTEN THESE
PATIENTS HAD NOTHING PHYSICALLY
WRONG WITH THEM BEFORE THEY
CONTRACTED COVERT SO LIVING WITH
LONG COVE IT. IS LIFE ALTERING
SOME OF THESE PATIENTS ARE WITH
US TODAY TO TALK ABOUT THE
CHALLENGES THEY FACE DAY TO DAY.
THEIR STORIES MATTER. AS DAILY
CASE DEATH RATES CONTINUE TO
IMPROVE I URGE ALL OF US TO BE
AS ATTENTIVE AS POSSIBLE. TO THE
KINDS OF RISKS AND BARRIERS
THESE PATIENTS FIND THEMSELVES
FACING. THERE ARE NO EASY
SOLUTIONS OR ANSWERS TO LONG
COVE AS YOU HERE TODAY BUT WE DO
KNOW THAT THE IMPACT WILL BE
FELT ACROSS MULTIPLE SYSTEMS.
AND HAVE SUBSTANTIAL
IMPLICATIONS FOR POLICIES IN FOR
PEOPLE AFTER TODAY'S HEARING WE
HOPE TO HAVE A BETTER SENSE OF
HOW CALIFORNIA. CAN ENGAGE WITH
THEIR MULTIPLE STAKEHOLDERS TO
ENSURE THAT THESE PATIENTS ARE
NOT LEFT FURTHER BEHIND TO FEND
FOR THEMSELVES AS WE ENTER THIS
NEXT PHASE A- OF THE PAY. THANK
YOU AGAIN TO ALL THE PANELISTS.
FOR YOUR TIME AND EFFORTS THANK
YOU MR CHAIR FOR THIS TIME TO
COMMENT. AND I LOOK FOR TODAY'S
CONVERSATION. THANK YOU SENATOR
NEWMAN- DO ANY OF THE OTHER
MEMBERS WHO ARE PRESENT WISH TO
MAKE ANY OPENING REMARKS. C.
NINE THEN WE'LL GO AHEAD AND
BEGIN WITH OUR FIRST PANEL OF-
ON THE OVERVIEW OF LONG COATED
AND- WE'RE PLEASED TO WELCOME A
DOCTOR STEVEN DEEKS PRINCIPAL
INVESTIGATOR LONG TERM IMPACT OF
INFECTION. WITH NOVEL
CORONAVIRUS STUDY AT THE
UNIVERSITY OF CALIFORNIA SAN
FRANCISCO AND DR SINDHU BEHIND
US PEDIATRIC INFECTIOUS DISEASE
SPECIALIST AT CHILDREN'S
HOSPITAL OF LOS ANGELES- WELL
COME AND- PLEASE- I GUESS WE'LL
START WITH DOCTOR DESE- PLEASE
BEGIN YOUR PRESENTATION AND WILL
ALLOW QUESTIONS FROM MEMBERS
AFTER THE PRESENT AFTER EACH
PANEL. SO DOCTOR TAKES. THANK
YOU KAREN PENCE I'M GOING TO-
JUST THREE SLIDES HERE AS I AS I
WALK THROUGH SOME OF THE BIG
PICTURE OVERVIEW OF WHAT'S BEEN
HAPPENING- OVER THE LAST TWO
YEARS- AND I THINK THE STORY
ABOUT HOW WE GOT HERE IS
IMPORTANT AND SENATE PANEL
DISCUSSES IN SOME DETAIL AS
WELL. BUT WE'RE NOW TWO YEARS
INTO THIS PANDEMIC. MMHM AND THE
FOCUS IS CLEAR NOW SHIFTING FROM
THE MANAGEMENT OF THE Q.
SYNDROME TO THE SORTING OUT
CHRONIC LINGERING CONSEQUENCES
OF THE ORIGINAL AFFECTION. BUT
IF YOU GO BACK IN TIME AND AT
THE STORE I THINK IS INFORMED OF
WHAT ACTUALLY HAPPENED IS THAT
THE FIRST CASES OCCURRED. IN
MARCH AND APRIL SO FOR ABOUT TWO
YEARS AGO. AND THERE WAS THIS
IMMEDIATE FOCUS ON DEALING WITH
PEOPLE IN THE HOSPITAL FOR
OBVIOUS REASONS. AT THAT TIME WE
HAD ANOTHER. NUMBER OF OTHER
GROUPS WERE AWARE. THAT THESE
TYPES OF INFECTIONS WE MIGHT
ACTUALLY RESULT IN LONG TERM
CONSEQUENCES WE'VE SEEN THIS
WITH OTHER VIRAL INFECTIONS
WE'VE SEEN IT WITH BACTERIAL
INFECTIONS LIKE LYME DISEASE- WE
NEVER QUITE FULLY UNDERSTOOD
WHAT HAPPENED THE PAST BUT WE
HAD A VAGUE SENSE BACK IN THE
DAY THAT SOMETHING MIGHT HAPPEN
SO WE- PUT TOGETHER COHORT WORRY
BEGAN TO ENROLL PEOPLE. WHO
BASICALLY SURVIVING JUDE SETTING
AND JUST STARTEDTO FOLLOW THEM
FORWARD IN TIME AND THERE WERE
TWO YEARS INTO THIS AND I'M I'M
ACTUALLY A BIT ABOUT WHAT WE
LEARNT. BUT WHAT HAPPENED NEXT
AFTER THIS WAS IN IN ON THE
FIRST FEW MONTHS ON SOCIAL
MEDIA. THESE REPORTS JUST
EXPLODED AND THEN THESE ADVOCACY
GROUPS. BUT A FEW OF HIM YOU'RE
GONNA HEAR FROM TODAY FORMS.
EVEN THE SPRING AND THE SUMMER
TWENTY TWENTY IN THESE GROUPS
HAVE BEEN EXTREMELY EFFECTIVE.
IN GETTING THE WORD OUT THROUGH
THE NATIONAL MEDIA AND ALSO
THROUGH VARIOUS DIFFERENT
STAKEHOLDERS PARTICULARLY
GOVERNMENTS- THE UK GOVERNMENT
HAS INVESTED MASSIVELY IN NOW.
AS OF ABOUT A YEAR AGO THE U. S.
GOVERNMENT IS NOW INVESTING
ABOUT A BILLION DOLLARS. INTO
THE STUDY OF THIS PROBLEM LONG
COAT IT. AND ITS MANAGEMENT- AND
THAT'S RECOVERY MISSION OF WHICH
I CAN GO INTO SOME DETAIL. SO
THAT'S HOW WE GOT HERE. SO WHAT
WE KNOW WE DON'T REALLY KNOW
THAT MUCH. WE KNOW. WE KNOW THAT
THIS IS REAL OKAY IN THE FIRST
YEAR SO THERE WAS A LOT OF
PUSHBACK FROM MEDICARE. WHETHER
THIS WAS ACTUALLY REAL THAT NOT
PEOPLE SAYING. YOU KNOW THERE'S
A LOT OF ANXIETY A LOT OF STRESS
A LOT OF ISSUES GOING ON IN THE
BACKGROUND. DUE TO THE PANDEMIC
AND THEN EVERYBODY'S HEALTH IS
BEING AFFECTED- AND THAT WHAT
PEOPLE ARE COMPLAINING ABOUT WAS
NOT DUE TO THE VIRUS. BUT DUE TO
THE PANDEMIC I DON'T THINK
ANYONE BELIEVES THAT ANYMORE.
PEOPLE NOW HAVE THEIR OWN
PERSONAL EXPERIENCES FOR THE
MEDICAL DATA ARE NOW BECOMING
VERY STRONG. EIGHT SUBSET OF
PEOPLE. AND THE NUMBER AND THE
FREQUENCY IS ALL OVER THE MAP. I
THINK IT'S PROBABLY IN THE
10220% RANGE DEPENDING ON THE
FINAL BUT ANYWAY A SUBSET. OF
ADULTS. WHO ACQUIRE THIS
INFECTION. WILL MEET A STANDARD
DEFINITION NOW LONG CODE WHAT IS
THAT DEFINITION OF THE WHL
BASICALLY SAYS. THAT THESE
SYMPTOMS HAVE TO PROCESS THREE
BALD WITHIN THE FIRST THREE
MONTHS. LAST FOR A COUPLE
MONTHS. HAVE NO OTHER
EXPLANATION. NOT HAD BEEN
PRESENT BEFORE THE START OF THE
WEEK AND HAVING SOME IMPACT ON
PEOPLE'S DAY TO DAY LIVING. AND
THAT'S- THAT'S VAGUE BUT IT'S
BASICALLY I THINK A FAIR
ASSESSMENT OF WHERE WE ARE. N.
SOURCE COULD BE TO SPREAD
THROUGHOUT THE BODY- AND SO IT'S
PERHAPS NOT TOO SURPRISING NOW
THAT SOME WILL LINGER
EFFECTIVELY DEALING WITH ARE
QUITE SYSTEMIC. THERE ARE
DIFFERENT. M. ALL THE PEOPLE
STARTING THEIR SERBIAN REALIZES
THERE'S THESE DIFFERENT.
CLUSTERS THERE'S A DIFFERENT
FLAVORS RIGHT PEOPLE HAVE A
NEUROLOGIC. VERSION OF THIS WITH
THE BRAIN FOG IN THE ROCK AT THE
AND SO FORTH. OTHERS HAVE SUCH A
SYNDROME THAT'S KIND OF SIMILAR
TO CHRONIC FATIGUE SYNDROME.
WITH DISABLING FATIGUE AND ALSO
THEIR FAMILIES AND SO FORTH-
THERE'S A STRONG. DISTINCT
CARDIO VASCULAR. FLAVOR OF THIS
IN WHICH PEOPLE HAVE. HEART RATE
PROBLEMS AND BLOOD PRESSURE
PROBLEMS AND DEVELOP THANK YOU
CARDIFF COMPLICATIONS I SENT A
TANDEM MENTIONED- AND THERE'S A
C. A UNIQUE SYNDROME CALLED POTS
THAT THAT'S ACTUALLY WAS.
PROBABLY ONE THE EASY ONE TO
DIAGNOSE AGAIN IT'S A IT'S AN
ISSUE THAT HAS TO DO WITH THE
HEART RATE. AND THE HONEST.
THESE ARE. THESE ARE DIFFERENT
FLAVORS BUT THERE'S A FAIR
AMOUNT OF OVERLAP. BUT THE KEY
THING ABOUT. THIS THE SENTENCES
THAT THEY'RE REALLY HARD TO
DIAGNOSE. I'M A FEW OF THEM AND
PEOPLE COME IN THE CLINIC AND
DESCRIBE WHAT'S HAPPENING BUT
THERE'S NO X. RAYS IS NO BLOOD
TESTS THERE'S NO WAY TO
OBJECTIVELY PROVE WHAT'S GOING
ON AND IT'S A BIG CHALLENGE FOR
CLINICIANS AND PATIENTS. WHAT'S
THE REASONS AND INCLUDING TRYING
TO GET PEOPLE- ALL OF FIVE FOR A
DISABILITY AND SO FORTH. SO HERE
THE BIG HERE THE QUESTION RIGHT
AND NO ANSWERS HOW WE GOT THE
FINEST WE DON'T HAVE A
DEFINITIVE WAY TO DIAGNOSE THE
SYNDROME WE CAN'T DEFINE IT WE
CAN'T MEASURE IT WE REALLY AN'T
STUDY THIS IS A BIG DEAL. WHO'S
AT RISK. ALMOST ALL THE STUDIES
ARE BASICALLY SHOWING THAT THE-
THE MORE SICK YOU ARE DURING
THE- DURING ACUTE INFECTION. THE
MORE LIKELY YOU ARE TO HAVE WON
BECAUSE OF IT BUT- NEARLY PEOPLE
WHO ARE MINIMALLY SYMPTOMATIC.
ARE AT RISK OF DEVELOPING
LOCALLY JUST A LOW RISK WOMEN
SEEM TO GET MORE THAN MEN-
VARIOUS DIFFERENT COMORBIDITIES
INCLUDING DIABETES ARE ALSO AT
HIGHER RISK. WHAT IS THE NATURAL
HISTORY IT'S ALL OVER THE PLACE
- MANY PEOPLE MY EXPERIENCE TEND
TO SLOWLY GET BETTER OVER TIME.
BUT CERTAINLY THERE'S A GROUP OF
PEOPLE WHOSE SYMPTOMS PERSIST
AND HAVE SOUGHT AFTER TWO YEARS
OTHER PEOPLE WAXING ME. I'M NOT
NOT THAT WILL CHARACTERIZE WELL
VACCINES PREVENT LONG COOK IT.
THAT APPEARS TO BE LIKELY TO BE
TRUE ALL THE COLOR STUDIES THAT
HAVE BEEN. FOR THE DAY SUGGEST
ABOUT THAT PEOPLE WHO HAVE BEEN
VACCINATED BECOME INFECTED. CAN
GET LONGER BUT BUT THE RATES ARE
ABOUT 50% LEVEL. ANTIVIRAL
THERAPIES DURING THE ACUTE
INFECTION PREVENTS LONG BECAUSE
OF IT WE HAVE NO IDEA. I SUSPECT
THAT THIS WILL BE TRUE BUT WE
REALLY DON'T HAVE ANY DATA. THE
BIG QUESTION IS- MICRON RIGHTS
IS THAT THE NUMBERS OF PEOPLE
BUT GOT NO MICRON IS SO MASSIVE.
WE'RE ALL REALLY WORRIED ABOUT
THIS- AND AT THIS POINT TIME WE
JUST HAVE NO REAL DATA TO SAY
WHETHER OR NOT PEOPLE WILL HAVE
THE- MICRON VERSION ARE GONNA
GET A LOT OF IT. THERE ARE
DEFINITELY REASONABLE TO BE
OPTIMISTIC THAT IS NOT GOING TO
ACTUALLY BE AS STRONG AS SOCIAL
BUT AGAIN WE JUST DON'T KNOW
WHAT IS THE MECHANISM. THAT'S
ACTUALLY OUR AREA EXPERTISE.
THERE ARE FOUR OR FIVE DIFFERENT
PATHWAYS TO PLAY. IT'S CERTAINLY
PROBABLY GONNA BE MULTIPLE
FACTORS. AND FINALLY HOW SHOULD
THIS BE MATCH THERE IS A
GROWING. THERAPEUTIC RESEARCH
AGENDA SMALL STUDIES THAT ARE
EMERGING- BUT RIGHT NOW MOST OF
THE MANAGEMENT. IS
REHABILITATION PHYSICAL THERAPY
MENTAL HEALTH SUPPORT FINANCIAL
SUPPORT AND SO FORTH. MY
PERSONAL OPINION. THAT WHAT.
PEOPLE WHO ARE DEALING WITH
WELCOME BUT NOW NEED MOST. IS A-
THERE IS A CLINIC WHERE THEY CAN
GO TO. A HOLISTIC APPROACH. GET
ACCESS TO INFORMATION IT ACCESS
TO CLINICAL TRIALS GET ACCESS TO
THERAPY- GET ACCESS TO HELP WITH
THE VARIOUS DIFFERENT ECONOMIC
ISSUES. YOU KNOW IN THESE
CLINICS ARE POPPING UP. BUT I'M
I'M HOPEFUL THAT WE'LL HAVE THE
CENTERS OF EXCELLENCE THAT
EMERGE OVER TIME. THAT WILL HELP. ADDRESS THIS ISSUE BECAUSE
IT'S SORELY NEEDED. SO I'M GONNA
STOP THERE. AND TURN IT BACK TO
YOU. SENATOR OKAY THANKS VERY
MUCH- DOCTOR DIXON WILL NOW MOVE
ON TO DOCTOR BEHIND US- FROM
CHILDREN'S HOSPITAL LOS ANGELES
WELCOME. I GOOD AFTERNOON
MEMBERS OF THE COMMITTEE I'M
DOCTORS INTO MY HEART YES I'M
ONE OF THE PEDIATRIC INFECTIOUS
DISEASE PHYSICIANS AT CHILDREN'S
HOSPITAL LOS ANGELES I'M ALSO.
C. H. A. P. PRINCIPAL
INVESTIGATOR ON THE RECORD STUDY
THAT DR DEEP SUSPENSION. SO
THANK YOU SO MUCH FOR GIVING ME
THE OPPORTUNITY TO DISCUSS THIS
IMPORTANT TOPIC TODAY.
THROUGHOUT THE PANDEMIC I HAVE
BEEN ACTIVELY INVOLVED IN CARING
FOR PATIENTS. FORMULATING
EVIDENCE BASED GUIDELINES AND
PARTICIPATING IN MULTI
DISCIPLINARY TEAMS. TO CARE FOR
PATIENTS WITH COPD NINETEEN AND
IT'S THE CREDIT SINCE THE START
OF THE PANDEMIC AT CHLA BEING
SEEN OVER ONE THOUSAND CHILDREN.
WITH OVER NINETEEN AND ALL OF
THESE NEARLY TWO HUNDRED HAVE
NEEDED. INTENSIVE CARE UNIT OKAY
I'M TWENTY TWENTY CHILDREN
STARTED PRESENTING WITH A NEW
SINGLE CALLED MULTISYSTEM
INFLAMMATORY SYNDROME IN
CHILDREN R. M. I. S. C. M. I. C.
IS A RARE TYPEOF IMMUNE
RESPONSE TO THE STAR SCHOOL
RITUAL INSPECTION. THAT UP TO
SEVERAL WEEKS AFTER IT CUTE
RIGHT AND THAT'S FOR SURE OUR
INJECTION CHILDREN CAN PRESENT
WITH AN ACUTE FEBRILE ILLNESS
CARDIAC ISSUES WHICH CAN INCLUDE
SEVERE CARDIAC DYSFUNCTION AS
WELL AS CORONARY ABNORMALITIES
AND SHOCK. MISSY CAN BE SERIOUS
AND THE ONE THAT WORKS
FORTUNATELY MOST CHILDREN WHO
ARE DIAGNOSED WITH THIS
CONDITION HAVE GOTTEN BETTER
MEDICAL CARE. AS OF MARCH FIRST
THE CDC HAS REPORTED SEVEN
THOUSAND FOUR HUNDRED AND FIFTY
NINE TO SIX IN THE IN THE UNITED
STATES WITH SIXTY THREE DEATHS
OUR TEAM AT CHLA HAS CARED FOR
ONE HUNDRED AND EIGHTY SIX
PATIENTS SO FAR. NYSE AND THIS
ACCOUNTS FOR MORE THAN 60% OF
PATIENTS IN THE LOS ANGELES
COUNTY AND TWO POINT 5% OFF THE
M. I. S. T. PATIENTS THE
NATIONAL. SIXTY OH FOUR PATIENTS
HAVE NEEDED I SEE CAN'T AND
UNFORTUNATELY WE ARE. TO WE HAVE
SEEN THAT M. I. S. C. STRIPS
MINORITY. COMMUNITIES
DISPROPORTIONATELY MORE THAN 52%
OFF A PATIENT PATIENTS HAVE BEEN
LET YOU KNOW AND THIS PROBABLY
REFLECTS THE FACT THAT THESE
PATIENTS ARE ALSO
DISPROPORTIONATELY AFFECTED BY
COURT NINETEEN OVERALL. DO MOST
CHILDREN RECOVER FROM M. I. S.
C. THE LONG TERM CONSEQUENCES
ARE ON THE- WE CONTINUE TO
FOLLOW THE THESE CHILDREN
CLOSELY AND I AM I S. IT CLINIC
. AS WE WERE WORKING AT TEN AM
IST CLINIC WE STARTED GETTING
MORE AND MORE CONTACTS FROM
PATIENTS P. M. DIS I WANT TO
KNOW SYNDROME IN CHILDREN WHICH
REALLY DID NOT FIT INTO THE M.
I. S. C. TRACTORS THESE CHILDREN
HAD LINGERING SYMPTOMS LONG
AFTER THE- INSPECTION. EVEN IF
THE INITIAL INFECTION WAS WITH
MY SYMPTOMS OR NO SYMPTOMS AT
ALL. THIS IS AS YOU HOOKED UP TO
EACH STATE THERE IS NO EFFORT TO
ASTRONOMICAL BIT LONG HAUL COAL
WHICH ARE SCIENTIFICALLY S.
POSTER TWO BY THE- IN NINETEEN
OUR CLASS. SYMPTOMS OF LONG CORD
AND VERY DIVERSE AND WE LAUNCHED
NEW SYMPTOMATOLOGY EVERY DAY.
MORE COMMONLY SEEN SYMPTOMS IN
CHILDREN IN OUR CLINICS HAVE
BEEN SEVERE FATIGUE HEADACHES
SHORTNESS OF BREATH. CHEST PAIN
OR PALPITATIONS DIFFICULTY
CONCENTRATING WHICH IS ALSO
CALLED BRAIN FOG MUSCLE PAIN
ENGINES AND SMELL OR TASTE MANY
OF THESE CHILDREN BUT PREVIOUS
TO COMPLETE BECAUSE- I'M DOING
VERY. WELL IN SCHOOL. AND AFTER
DEVELOPING THE SYMPTOM THERE ON
TO PARTICIPATE IN SCHOOL
ACTIVITIES ARE. MEDIA STUDIES
HAVE SHOWN THAT THE PREVALENCE
OF. LONG HAUL IT IS IN CHILDREN
IS BETWEEN FIVE AND 50% HOWEVER
WE STILL HAVE A LOT TO LEARN
ABOUT THE LOCAL CHILDREN AND
LARGER LONGITUDINAL STUDIES ARE
REQUIRED TO UNDERSTAND THE TRUE
PREVALENCE. AND I'M HOPING THE
COLOR WILL BE ABLE TO ACHIEVE
THIS AND UNDERSTANDING THE TRUE
PREVALENCE OF IT. I HAD
ESTABLISHED A LONG RECOVERY
CAN'T CLINIC AT CHLA AND THIS IS
ONE OF THE VERY FEW CLINICS IN
THE COUNTRY THAT OFFERS LONG
COLERIDGE. ALONE COULD CARE FOR
PATIENTS WE HAVE HAD SEVERAL
PATIENTS AND PARENTS PRESENT TO
A CLINIC IN TWO YEARS FRUSTRATED
IN THEIR SEARCH FOR MEDICAL CARE
FOR THEIR CHILDREN. JENNIFER
THIS PATIENCE IS COMPLEX AND
CHALLENGING AND NEEDS CLOSE
COORDINATOR COORDINATION BETWEEN
A MULTI DISCIPLINARY TEAM WHICH
OUT INSTITUTION AT OUR
INSTITUTION SO FAR HAS INCLUDED
INFECTIOUS DISEASES CARDIOLOGY
NEUROLOGY. PULMONOLOGY AND SLEEP
MEDICINE BEHAVIOR HAS RE HAB AND
SOCIAL WORK THE GOAL OF THERAPY
IS TO HELP PATIENTS TRANSITION
BACK TO BABY ACTIVITIES AS
RECOVERY PROGRESS. AND THIS IS
VERY INDIVIDUAL AND CAN TAKE.
WEEKS AND SOME PATIENTS. MONTHS
AND ON THIS. SO EVEN THOUGH WE
ARE JUST WHEN BEN B. MAYBE
MOVING. THE WITH REGARDS TO LONG
CORBETT I BELIEVE THAT WE HAVE
ONLY SEEN THE TIP OF THE ICEBERG
SYMPTOMS OF LONG CORPORATE ARE
KEEPING CHILDREN OUT OF SCHOOL
AND THEIR PARENTS OUT OF SCHOOL.
AND POTENTIAL FOR SIGNIFICANT
PUBLIC HEALTH IMPACT WE NEED TO
CONTINUE TO INVEST IN
INFRASTRUCTURE AND RESOURCES
BOTH FOR CLINICAL CARE AND
CONTINUED RESEARCH EFFORTS. TO
UNDERSTAND THE PREVALENCE OF THE
DISEASE MECHANISMS OF DISEASE SO
THAT WE CAN DEVISE OPTIMAL
TREATMENTS AND PREVENTION
TECHNIQUES. THANK YOU VERY MUCH
. THANK YOU THANK YOU TO BOTH OF
OUR PRESENTERS- QUESTIONS FROM
COMMITTEE MEMBERS. OKAY WELL I
HAVE A FEW QUESTIONS AND AGAIN
REALLY APPRECIATE THE
PRESENTATION. SO I GUESS- DR D.
X- YOU TALKED ABOUT. THE
IMPORTANCE OF AND ACTUALLY JUST
HEARD ALSO FROM DOCTOR BEHIND US
ABOUT THE IMPORTANCE OF- I GUESS
CENTERS OF EXCELLENCE RIGHT I
MEAN THIS IS THAT YOU TOLD IS A
COMPLEX DISEASE IN FACT I THINK
YOU'RE YOU EVEN MENTION. WE
DON'T REALLY HAVE A DEFINITION A
LOG OF IT BECAUSE A LOT OF
VARIATION AND SO FORTH MAYBE YOU
CAN SPEAK TO THAT FIRST- WHAT.
SO WHERE ARE WE ON THE PATH TO
ACTUALLY BETTER DEFINING THIS
DISEASE AND YELL OUT OF SUPER IN
ORDER TO COLLECT UP EMAIL
LOGICAL DATE AND SO FORTH WE DO
NEED DEFINITIONS RIGHT I THINK
YOU WERE. INVOLVED WITH- WHEN
HIV FIRST ARE- CAME OUT AND SO
FORTH HE SPEAKS TO WHAT WHAT ARE
SOME OF THE THINGS WE NEED TO
DO. ONE TWO TO BE ABLE TO DO
BETTER. THE FIRM RESEARCH ON
WHAT LONG COVE IT IS SO IN TERMS
OF DEFINITIONS. AND THEN. THE
SECOND AND THEN MAYBE ALSO HAVE
DOCUMENTED THIS FOLLOW UP ON
THIS. IN TERMS OF. THE SETTING
UP THE INFRASTRUCTURE OF THE
CENTERS OF EXCELLENCE. WHICH IT
TO BOTH COLLECT DATA BUT ALSO
PROVIDE THE- COMPLEX CARE MEAN
TO SO MANY SPECIALISTS INVOLVED
AND SO FORTH- THAT'S NOT
AVAILABLE I MEAN I THEY EVEN
HERE IN SACRAMENTO. YOU'RE WE'RE
WE'RE HAVING THE HEARING. AND I
USED TO WORK AT UC DAVIS
CHILDREN'S HOSPITAL. NOW THAT
THERE'S A LIMITED NUMBERS OF
SPECIALISTS- THAT ARE AVAILABLE
AND THAT THE DETACHED OF
SPECIALS ARE READY PRETTY TAXED
WITH DISEASES BEFORE- AND THEN
WE CAN TALK ABOUT OTHER SPECIALS
FOR ADULTS AND SO FORTH- PRIOR
TO. THAT BECAUSE OF IT AND NOW
WE HAVE ONE AND THAT THE ISSUE
LOG OF IT BUT MADE A- PRETTY
EASY ONE TO START OFF BY TALKING
ABOUT WHERE WE ARE IN TERMS OF
ACTUALLY. DEFINING THAT RESEARCH
IS GETTING THE DEFINITIONS AND
THEN- THEN MOVING TOWARD
ACTUALLY GETTING PEOPLE ACCESS
TO. HIGH QUALITY CARE. IN THE
FACE OF. THE UNCERTAINTY RELATED
TO THIS DISEASE- SO. THOSE ARE
TWO VERY BIG QUESTIONS PROBABLY
THE TWO MOST IMPORTANT QUESTIONS
IN ACTION LINKS- SO THE FIRST
QUESTION REALLY ISN'T HAVING THE
FINEST- AND AGAIN WE DON'T I
DON'T REALLY HAVE A GOOD ANSWER
TO THAT RIGHT NOW WE ARE DOING
THESE DEEP DIVES PERSPECTIVES
COHORTS AND THE RECOVERY
INITIATIVE FOR EXAMPLE IN THE
HOPE IS THAT WE CAN ACTUALLY
WITH MULTIPLE DIFFERENT IMAGING
MULTIPLE DIFFERENT PROCEDURES
ASKING MILLIONS OF DIFFERENT
QUESTIONS WILL COME UP WITH
SOMETHING THAT IS CRISP AND
CLEAR THAT WILL DEFINE WHAT THIS
IS I'M A LITTLE BIT SKEPTICAL
THAT WILL DO THAT. I THINK AT
THE END OF THE DAY WE'RE GOING
TO BASICALLY HAVE TO COUNT ON
QUANTIFYING HOW PEOPLE FEEL. NOW
THAT'S- THAT'S THAT'S DOABLE BUT
THE ISSUE THAT WE'RE GONNA
CONFRONT HERE AGAIN IS THAT. OR
TO USE THAT INFORMATION TO SAY
SOMEONE QUALIFIED FOR
DISABILITY. YOU KNOW SO SECURITY
MINISTRATION ALWAYS WANT SOME
HARD FACTS EXACTLY WHY ARE THEY
DISABLED- TRANSACTION PART OF
THE MEETING. THAT'S HAPPENING IN
WASHINGTON NEXT WEEK TODAY
MEETING FOR THE SUBSEQUENT
ADMINISTRATIONS TRYING TO FIGURE
OUT HOW THEY'RE GOING TO FIND
THIS- CLINICALLY. AND ANOTHER
BIG ISSUE ABOUT THE DEFINITION.
IS THAT UNLESS WE HAVE A- FOR
SELECT PRECISE WAY TO MEASURE
LONG COULD GET. IT'S REALLY HARD
TO GET INDUSTRY TO ENGAGE TO
DEVELOP THERAPIES. RIGHT I'M NOT
ON THE DOORS OF ALL THE DRUG ME
SAYING YOU GUYS GOT TO GET HIM
OFF WE NEED. THERE'S ALL THESE
THINGS WE CAN BE DOING AND THEY
SAY OKAY FINE. WE'RE COMMITTED.
WHAT'S THE END POINT HOW WE
GONNA BASICALLY PROVED TO THE
FDA THAT ARE DRUG WORKS. AND
THAT'S NOT EASY TO DO WHEN YOU
HAVE THESE BIG TYPES OF SYMPTOMS
. ANYWAY SO THAT'S WHERE WE ARE
RIGHT. AND UNTIL WE HAVE A
PRECISE WITH THE FINEST IT'S
REALLY GOING TO HARD TO GET IT'S
GONNA BE HARD TO DEVELOP THE
TREATMENT. WHICH TAKES ME TO THE
NEXT QUESTION WHICH IS THE ISSUE
OF HAVING TO CARE FOR PEOPLE
NOW. SO YOU THAT YOU MENTIONED I
DID I WAS A H. I. V. DOCK BACK
IN THE NINETIES. IN WHICH- WE
HAD A SIMILAR SITUATION RIGHT WE
HAD. YOU KNOW A MILLION PEOPLE
UNITED STATES WHO ARE SUFFERING
FROM HIV THEY RUN THESE PRIMARY
CARE CLINICS THEY DIDN'T HAVE
ACCESS TO GOOD CARE AND HAVE
ACCESS TO EXPERTISE. THE
INFECTION WAS A- DEFECT IN ALL
PARTS OF THEIR LIFE INCLUDING
YOUR ABILITY TO WORK. STIGMA
MENTAL HEALTH. SUBSTANCE ABUSE
ALL THESE ISSUES WERE SORT OF
INTERTWINED INTO A DISEASE THAT
WAS MORE MEDICAL IS ALSO. A
SOCIAL ECONOMIC ISSUES. AND OUR
ABILITY TO CARE FOR PEOPLE WITH
HIV MANY FORMER MARGINALIZED-
FROM DIFFERENT UNDER REPRESENTED
COMMUNITIES. OUR ABILITY TO CARE
FOR THESE INDIVIDUALS
SEMANTICALLY APPROVAL WILL
DEVELOP THE CENTERS OF
EXCELLENCE MANY OF THEM FUNDED
BY THE GOVERNMENT- INCLUDE RYAN
WHITE INITIATIVE AND I DO THINK
THAT IF WE HAD THE ABILITY TO DO
THAT NOW PUT TOGETHER THE
CENTERS OF EXCELLENCE THAT THEY
CAN DEAL WITH ALL ASPECTS OF
THIS ISSUE AND THAT WILL ALLOW
EVERYBODY TO ATTEND INCLUDING
THOSE WITHOUT INSURANCE. THAT
WOULD BE A GREAT SUPPORT. THANK
YOU AND GOOD LUCK ON THIS DO YOU
WANT TO DRESS AS USUAL. YES I
AGREE THE CHECK THE CHALLENGE
REALLY LIES IN HOW WE EXPECTED
TO FIND. SO IS THAT THE CDC AND
THE WORLD HEALTH ORGANIZATION
DEFINE IT DIFFERENTLY BUT WE DO
NEED A DEFINITION TO WORK WITH
THESE PATIENTS AND TO BE ABLE
TO. GIVE THISDIAGNOSIS TO
PATIENTS SO FAR AS A WORKING
DIAGNOSIS FOR AN HOUR BUT
CLEANING WE USE IT TO SAY THAT
ANY CHILD WHO HAS HAD NEW
RECURRING OR ONGOING SYMPTOMS
FOR ME FOUR WEEKS AFTER THE
FIRST INSPECTION. IF THE IF THEY
WERE TO MEET THIS CRITERIA AND
WE THE OTHER COULD YOU HEAR ME
USE THAT IS THAT THESE SYMPTOMS
SIGNIFICANTLY AFFECT THE QUALITY
OF LIFE AND THE SYMPTOMS WERE
NOT PRESENT PRIOR TO THE CALL
WITH INSTRUCTIONS. BENJAMIN THIS
CRITERIA WE DON'T SEE THEM IN
ALONG WITH THE CLINIC AND THE
OTHER QUESTION ABOUT CENTERS OF
EXCELLENCE I COULDN'T AGREE MORE
SINCE WE HAVE STARTED THIS AND
JUST AS YOU MENTIONED PEDIATRIC
SPECIALISTS ARE OVERSTRETCHED.
IT IS REALLY DIFFICULT TO HAVE A
WHOLE SET OF SPECIALISTS BEING
ABLE TO CONTRIBUTE TO THIS CARE
WITHOUT A SIGNIFICANT INVESTMENT
IN THIS PROCESS SO I THINK THE
BETTER INFRASTRUCTURE BETTER
FUNDING INTO DEVELOPING THIS S.
AT CENTERS OF EXCELLENCE WILL.
BE OF GREAT BENEFIT TO THE
PATIENT. THANK YOU A CENTER.
THANK YOU MR- I APPRECIATE THE
INFORMATION THAT IS BEING
PRESENTED TODAY BUT I HAVE A
QUESTION IN PARTICULAR AS IT
PERTAINS TO EDUCATION I KNOW
THAT WE WERE TALKING ABOUT THE
PHYSICAL SIDE EFFECTS FOR
CHILDREN AND I'M JUST WONDERING
IF THERE IS PLANS TO PARTNER
WITH EDUCATIONAL INSTITUTIONS TO
GATHER DATA ONE OF THE- OFTEN
WHERE IT'S USED HERE IS BRAIN
FOG NOT ONLY IN ADULTS BUT IN
CHILDREN AS WELL. AND I'M
HEARING ANECDOTAL DATA FROM-
EDUCATIONAL INSTITUTIONS SO I'M
JUST WONDERING WHAT THERE'S A
PLAN IN PLACE SO WE CAN ENSURE
THAT WE ARE ACTUALLY IN REAL
TIME GATHERING THE INFORMATION
FROM TEACHERS AND INSTITUTIONS-
I DON'T THINK WE CAN FIND A
SOLUTION UNLESS WE HAVE THAT
INFORMATION SO I WANT TO TURN IT
OVER TO YOU TO SEE WHAT YOU CAN
SHARE. THE COMMANDERS SOUNDS
LIKE MY PHONE YOUR BILL WORK.
YES I COULDN'T AGREE MORE I
THINK IT'S- A REALLY IMPORTANT
QUESTION. WE DON'T HAVE ANYTHING
IN PLACE RIGHT NOW BUT THAT'S
SOMETHING THAT SHOULD DEFINITELY
BE EXPLORED. WE HAVE HAD
PATIENTS AND CLINIC AND AS WE
SAID BEFORE THESE CHILDREN LOOK
EXTERNALLY LOOK RATHER. THERE IS
NOTHING TO SAY THAT THEY SUFFER
FROM THIS CHRONIC CONDITION. SO
HAVING THIS PARTNERSHIP WITH
EDUCATIONAL INSTITUTIONS
INCREASING AWARENESS SO THAT
EDUCATORS CAN INSTITUTIONS OUT
OF THERE AND CAN'T CAN MAKE THE
NECESSARY. AND THIS IS. CHANGES
THAT THESE CHILDREN ACQUIRE
WOULD BE A GREAT HELP AND THIS
IS SOMETHING THAT THAT WOULD BE
VERY HAPPY TO PARTICIPATE AND-
MAKE IT HAPPEN. THANK YOU. OTHER
QUESTIONS- SO ACTUALLY A DOCTOR
NEEDS A- AND ACTUALLY DOCUMENT
ON THIS. I KNOW THAT IS WHAT I
THINK QUESTIONS OUT THERE AND
AGAIN IT'S RELATED TO THE FACT
THAT WE DON'T WE DON'T HAVE A
DEFINITION OF DEFINITION
CONSISTENT- BUT YEAH I DID SAY
MY OPENING REMARKS BECAUSE NO
DIFFERENT DIFFERENT RESEARCHERS
IN DIFFERENT PARTS OF THE WORLD
HAVE FOUND DIFFERENT
FREQUENCIES. OF LONG COVE IN I
GUESS WITHOUT DEFINITION IT'S
HARD TO SAY WHAT PERCENTAGE IT
ACTUALLY IS BUT CAN YOU MAYBE
SHED SOME LIGHT AS TO- YOU KNOW
HOW BIG HOW BIG OF A PROBLEM IS
THIS- AND WHEN YOU THINK ABOUT
THE FACT THAT YOU'RE TALKING
ABOUT PEOPLE HAVING THESE LONG
TERM SYMPTOMS NEEDING THESE
SORTS OF PORTS AND SO FORTH AND
CERTAINLY. AS LEGISLATORS WE
WANNA BE SURE WERE THAT THE
STATE IS PREPARING IS IT GOING
TO BE PROVIDING SERVICES IN FACT
THE NEXT PANEL YOU'LL BE HEARING
FROM PATIENTS AND- AND ADVOCATES
ABOUT THAT WHAT WHAT FROM YOUR
PERSPECTIVE WHAT ARE SOME OF THE
THINGS WE AS A STATE SHOULD BE
ANTICIPATING GIVEN WHAT YOU'RE
SEEING AND THE FREQUENCY AND HOW
OFTEN. HOW MANY PATIENTS ARE
BEING AFFECTED IN TERMS OF
PREPARING TO SERVE- THE THESE
THAT PATIENTS IN THESE FAMILIES-
YOU KNOW. HOW MANY PEOPLE ARE
TALKING A- YOU KNOW WE'LL
POPULATE FORTY MILLION THE STATE
OBVIOUSLY THAT SOME OF IT
DEPENDS ON HOW. MUCH WE IF
THERE'S A FUTURE VARIANT HOW
MUCH WE CONTINUE LET SPREAD WE
JUST GOT OFF THE OMICRON WE'VE
BEEN THROUGH SO MANY DIFFERENT
WAYS- BUT- HE- SO I REALIZE IT
MAY BE. A LITTLE BIT THE-
RECEIVE SOME GUESS WORK INVOLVED
BUT YOU'RE TRYING TO CLOSE THE
THINGS WE GOT TO EXPERTS WHO CAN
MAYBE AT LEAST GIVE US. AT LEAST
A BALLPARK RANGE OF WHAT WE
SHOULD BE THINKING ABOUT THE
BURDEN OF LONG COVE IT. WILL
NEED TO ADD THAT THE STATE WOULD
NEED TO DRESS. OKAY I'LL- I'LL
I'LL GIVE MY OPINION. OKAY YES
ITS OPINIONS. NINETEEN IN BASED
ON THE DATA WHICH IS ALL OVER
THE PLACE. AND ALSO BASED ON
WHAT WE'RE SEEING IN OUR CO
WORKERS. SO I THINK. I THINK I'M
- IT DEPENDS ON THE WAY RIGHT SO
THE FIRST TWO OR THREE WAYS. IS
WHERE I THINK THE GREATEST
BURDEN OF AMENDMENTS DISABLING
DISEASE. KIRK PEOPLE ARE
VACCINATED THEM WE DON'T HAVE
TREATMENT WE WEREN'T MASKING
THEY WERE HI VIRUS EXPOSURES.
SOME OF THE SICKEST PEOPLE THAT
WE'RE DEALING WITH IN OUR COURTS
OUR FROM THE FIRST WAVE- I MADE
FROM THE SECOND WAVE. YOU KNOW
ONE DELTA CAME AROUND. A LOT OF
PEOPLE REQUIRING DELTA WHEN THEY
WERE- VACCINATED AND DATE. I'M
PRETTY SURE. THEIR RISK OF
DEVELOPING LONG COVERED NO
QUESTION BUT THE RATES ARE MUCH
LOWER. I'M AT THE NOW AND I HAVE
NO IDEA WHAT'S GOING TO HAPPEN
ON THE GROUND AND THAT'S THE BIG
UNKNOWN AGAIN MY GUESS IS THAT
WE'RE NOT GOING TO SEE A LOT OF
DISEASE ON THE GROUND BUT AGAIN
WE DO NOT NOT. SO I WOULD I
WOULD SAY IF YOU'RE FORTY
MILLION PEOPLE IN THE STATE OF
CALIFORNIA. AND TEN MILLION
PEOPLE BECOME INFECTED- I WOULD
PROBABLY SAY A COUPLE MILLION
ARE DEFINITELY GOING TO HAVE
PERSISTENT SYMPTOMS. BUT
DISABLING DISEASE THAT PERSIST
FOR MORE THAN A YEAR. THAT'S
WHAT I THINK IS IT WORTH A LOT
OF THE ATTENTION IS IN TERMS OF
THE MEDIA AND WHAT WE'RE DOING
IN THE CLINICS AND THIS BILL AND
SO FORTH. THAT'S PROBABLY GONNA
END UP BEING A FEW PERCENTS I'M
I'M GUESSING THAT WE'RE TALKING.
I GET MY MATH RIGHT YOU KNOW
SEVERAL HUNDRED THOUSAND PEOPLE.
IF YOU HAD A THOUSAND PEOPLE AT
LEAST IN THE STATE OF
CALIFORNIA. COULD END UP. WITH
PROFOUND. RESIDUAL DISEASE AS
HAVING A- BIG IMPACT ON THEIR
DAY TO DAY LIFE. ALL RIGHT THANK
YOU. I CAN UNDERSTAND YOU I TAKE
A SHOT AT THAT QUESTION. YEAH
THAT WAS ADULTS I MEAN I MEAN I
HAVE NOTHING I KNOW NOTHING
ABOUT CHILDREN. A OUT OF IT WITH
CHILDREN IT GETS A LITTLE MORE
COMPLICATED THAT I'VE I MEAN THE
ADULT CALENDAR WHAT LONG
CORBETT- IT HAS BEEN LONGER.
WITH ME WE ARE ONLY JUST
STARTING TO EXPLORE THIS
DIAGNOSIS AND PEDIATRICS. SO I
WOULD SAY IT THE INFORMATION IS
B. GET IN PEDIATRICS EVEN MORE
LACKING THAN THAT AND IT DOES.
BUT WHAT I CAN WHAT I CAN TELL
YOU IS THAT JUST AS DR PEAKS
THAT WE ARE NOW SEEING PATIENTS
WERE HAVING LONG CALL WHICH AS A
CONSEQUENCE OF THE FIRST RATE.
OUR ONLY DATA SO THERE IS A
LARGE MORE WE WILL SEE IN THE
NEXT FEW MONTHS AND JUST SINCE
THE THIS- CLINIC OPEN WHICH WAS
PROBABLY THE LAST FOUR MONTHS WE
HAVE ALREADY SEEN FORTY FIVE
PATIENTS IN OUR CLINIC. WE HAVE. CALLS FROM ALL OVER THE
COUNTRY. SURE AND PARENTS TO BE
SEEN AND NOT. SO THERE IS REALLY
A HUGE NEED. AND IN TERMS OF
PERCENTAGES BECAUSE THE STUDIES
HAVE LOOKED AT SYMPTOMS AT
DIFFERENT TIME DURATIONS. FROM
THE INITIAL INFECTION THAT'S WHY
THEY'RE ALL OVER THE PLACE SO WE
REALLY NEED SOME KIND OF A
LONGITUDINAL STUDY TO UNDERSTAND
THAT BETTER. BUT IF I WERE TO
GUESS I WOULD PUT THE NUMBER
SOMEWHERE BETWEEN TEN TO TWENTY
PERCENT. OF THOSE WHO GET
INFECTED. HAVE LOCAL IT. NO I
APPRECIATE THAT- I WOULD ALSO
AND MAYBE YOU CAN DO JUST TO
SORT OF FOLLOW UP TO THAT DOCTOR
BEHIND US- YEAH WE'VE BEEN SINCE
WE'VE ACTUALLY SEEN INCREASED
RATES. OF INFECTION IN CHILDREN
WITH ADULT AND- THE CRIME RATE
SO FOR WHATEVER REASON THAT MORE
MORE IN CHILDREN NOW- AND THEN-
AND THE VACCINATION RATES- FOR
SCHOOL AGE CHILDREN STILL FAIRLY
LOW I THINK WE'RE WE'RE LIKE.
THAT 30% OF THEM 23% SO WE STILL
WAYS TO GO THERE AND THEN WE
CAN'T VACCINATE CHILDREN UNDER
FIVE AND I DON'T NOBODY CAN
TOUCH ON WHAT ABOUT THE YOUNG
CHILDREN- WHETHER THAT- YOU KNOW
WHAT YOU'RE SAYING THERE. AND
THEN IN THE MEDIA JUST AS FOR
YOUR LAST- CONCLUDING PART OF
YOUR YOUR YOUR RESPONSE- NOT SO
MANY PEOPLE SAID WELL BECAUSE
IT'S NOT SERIOUS IT'S LIKE THE
FLU AND COLD AND YOUR INFECTIOUS
DISEASE SPECIALIST YOU'RE SEEING
THESE PATIENTS- MAYBE YOU CAN
THE BALLENGER REMARKS WITH-
WHAT'S YOUR OPINION OF- PEOPLE
WHO SAY THAT. YEAH SO COOL. LONG
HOLDING POSITIONS THAT WE HAVE
SEEN. ALMOST MORE THAN 90% HAD
READY MIGHT BE SYMPTOMATIC. SO
THAT'S WHY I KIND OF HESITATE TO
SAY THAT MOST LIKELY ON THE
GROUND WILL NOT RESULT IN A LONG
LINE OF LONG BECAUSE REALLY THE
BIG SUBSET OF PATIENTS THAT
WE'RE SEEING IN OUR CLINIC
REALLY HAD VERY MILD WINDS AND
JUST AS YOU MENTIONED MANY MORE
CHILDREN GOT INFECTED DURING THE
ON THE GROUND. AND IT'S TO BE
SEEN SO I WOULD HESITATE AND
SAYING THAT WE WOULD NOT EXPECT.
MORE SEVERE LOCAL WITH WITH ON
THE GROUND I THINK IT'S
SOMETHING THAT WE HAVE TO WAIT
AND SEE. SO MY IN FACT DOES NOT
MEAN THAT YOU CANNOT HAVE
SECRETLY BOTH OPERATIONS WITH
NYSE. AMBITIONS WITH LONG HOLD
IT HAD. MOSTLY BETTING MINE IN
FICTION AND IN MANY CASES WHAT
UNDERWENT ALREADY HAD
EXTRACTIONS IT WAS ONLY ON
QUESTIONING THAT REMEMBER ALL
HOLES EXCLUSION. SO MY LEG
INFECTION IS NOT EQUIVALENT TO
NOT HAVING PROBLEMS. DOWN THE
DOWN THE LINE. AND IT SHOULD BE
READY- AWARE OF THIS. THE
VACCINATION THERE IS THIS
DISCUSSION THAT VACCINATION- MAY
NOT BE THAT USEFUL IN CHILDREN
SINCE THE ILLNESSES MIGHT. BUT I
WOULD ENCOURAGE EVERYONE TO
THINK BEYOND THE ACUTE
INFECTION. THE C. CREDIT WHICH
CAN BE REALLY. A LIFE
THREATENING AND SEVERE AND- LIFE
CHANGING FOR CHILDREN. SO IS THE
CO THE C. AS THE FLU OR A OR A-
NOT NOT I THINK OVER THE LAST
TWO YEARS WE HAVE WE HAVE SEEN
MORE THAN ENOUGH EVIDENCE OF
THAT. WE NEED TO BE REALLY
CAREFUL AND PROTECT OUR CHILDREN
EVERYBODY THAT CAN CAN. ALL
RIGHT THANK YOU THANKS SO MUCH
STUFF ON THIS THANK YOU DOCTOR
DEEKS IS THERE ANY OTHER
QUESTIONS FROM THE COMMITTEE
MEMBERS. OKAY THANKS VERY MUCH
FOR YOUR PRESENTATIONS- NEXT
WE'LL MOVE ONTO OUR SECOND
PANEL IT'S- ON LIVING ALONG COVE
IT THE PATIENT FAMILY
PERSPECTIVE. AND WE WE'RE GONNA
BE HEARING FROM- LEARNED
READERS- PATIENT AND- HER MOTHER
STACEY GREETERS FOLLOWED BY
ANGELA VELASQUEZ- THIS PATIENT
ND PRESENT A BODY POLITICS. AND
THEN- WRAPPING UP THIS PANEL
JENNIFER STARK PATIENT MANAGING
ATTORNEY WITH DISABILITY RIGHTS
CALIFORNIA SO LET'S BEGIN WITH
US. LEARN BREEDERS AND STACY
CRITTERS WELCOME. HI THERE THANK
YOU SO MUCH I PROJECT RUN WON'T
BE ON JOINING US OKAY. ON DUE
LONG CALLED IT ACTUALLY AND
HONESTLY- SO MY NAME IS STACY
ROTORS ON IT IN HONOR FOR ME TO
BE HERE TODAY- THIS IS A CLUB
THAT. MY DAUGHTER MYSELF NEVER
WANTED ME MEMBER- AND I'M VERY
INTERESTED TO HEAR EVERYTHING
YOU'RE SAYING IT IS EMOTIONAL
FOR ME TO HEAR. BECAUSE GETTING
CARE FOR OUR DAUGHTER HAS BEEN
NOTHING- SHORT OF. CHALLENGING
AND- I APPRECIATE THE
OPPORTUNITY TO SHARE JUST FOR
CONTEXT- I MISS IS THE PRINCIPAL
OF THE K. EIGHT ALL AMERICA
FIVE. IRVINE UNIFIED SCHOOL
DISTRICT- I'VE BEEN IN EDUCATION
FOR TWENTY EIGHT YEARS SO- I'M
YOU KNOW I'M VERY AWARE OF THE
CHALLENGES. WITH SCHOOL AND COLD
AS WELL. ARE WE HAVE THREE
CHILDREN- MY FINE AND THEN TWIN
DAUGHTERS MY FRIEND OF TWENTY
TWO MY DAUGHTERS ARE BOTH
TWENTY. IN AUGUST OF TWENTY
TWENTY. AFTER BEING HOME AND
QUITE CAN'T CALIFORNIA VERY
CAREFULLY WE SENT THEM BACK TO
THE UNIVERSITY OF ALABAMA WHERE
THEY ATTEND COLLEGE. AND THEN
WITHIN TWO WEEKS OF BEING BACK
ON CAMPUS. BOTH OF OUR DAUGHTERS
TESTED POSITIVE FOR KOBE- FOR
THE VACCINATIONS WERE AVAILABLE.
THEY WERE SICK WITH A FEVER FOR
ABOUT A DAY LOST THEIR SENSE OF
TASTE AND SMELL AND THEN WITHIN
FIVE DAYS WE'RE BACK TOTALLY
NORMAL- WE KIND OF GOT LUCKY
LIKE THEY HAD WEATHERED IT.
EASILY AND WE FELT VERY
FORTUNATE THAT YOU KNOW. WHAT'S
GONNA HAVE A LONG TERM EFFECT
FOR THEM- JUST SO YOU KNOW PRIOR
TO. FLOOR AND HAVING TO COPE
WITH IT. NINETEEN SHE HAD NEVER
EXPERIENCED ANY PSYCHIATRIC
EPISODES OF DEPRESSION OR
ANXIETY. SHE IS ATTENDING
COLLEGE ON A FULL ACADEMIC
SCHOLARSHIP SHE'S EXTREMELY
SOCIAL RIGHT WARM ENGAGING.
BECAUSE SHE'S IN A SORORITY HAS
BEEN IN LEADERSHIP POSITIONS- NO
UNDERLYING HEALTH CONDITIONS-
PHYSICALLY ACTIVE. AN ATHLETE
VERY FAT. AND THEN ABOUT SIX
WEEKS LATER- AFTER HER FIRST
CALL MADE POSITIVE TEST- CAME
THE SUDDEN ONSET OF EXTREME
ANXIETY THAT WAS CRIPPLING- HER
TWIN SISTER CALLED F. VERY
CONCERNED ABOUT OUR TICKET
STUDENTS HOW. THEY TREATED HER
LIKE SHE WAS LIKE A COLLEGE KID
BASICALLY HAVING LIKE PSYCHOSIS
AND MENTAL BREAKDOWN- WITHIN A
COUPLE DAYS SHE WAS ALMOST
CATATONIC SHE WAS HAVING A HARD
TIME SPEAKING COULDN'T ANSWER
BASIC QUESTIONS. CAN ORGANIZE
HER THOUGHTS SO I JUMP ON A
PLANE THAT GOT OUT THERE AND
PICK A NEW DOCTOR. AND SHE
BASICALLY SUGGESTED THAT BECAUSE
WE LIVE IN LA AND THEY HAVE MORE
EXPERIENCE WITH COAL BED THAT WE
SHOULD PROBABLY GET A HOME THE
LEAD GUY AND A PLAIN. BATTER
BACK- WENT RIGHT TO THE AMERICAN
EXPERIMENT MISSION HOSPITAL IN
ORANGE COUNTY AND AGAIN WE'RE
TREATED LIKE WE HAD A COLLEGE
KID WITH HAVING. A MENTAL HEALTH
BREAKDOWN OR- PREGNANT OR HAD.
DONE DRUGS. PLEADED ON PANELS
THOSE ONLY TESTS THAT WERE DONE
LIKE SCREENER FOR GOD MAKING
SURE SHE WASN'T PREGNANT. I'M
VERY HUMILIATING FOR HER- VERY
TRAUMATIC EXPERIENCE. AND THEN
DO A COLD READ TO MY HUSBAND WAS
ALLOWED TO BE IN THERE WITH US
WITH THE BANK FOR THEM TO LET ME
BE THERE BECAUSE IT WAS STILL
EARLY DAYS. OKAY SHE THANK GOD
WE HAVE- A WONDERFUL
PEDIATRICIAN WHO WE'VE KNOWN
SINCE SHE WAS FOUR YEARS OLD
BASKETBALL HOOP- FOLLOWED UP
WITH THAT KIND OF THAT WAS ON A
SUNDAY ON MONDAY MORNING AND HE
HAD ADMITTED TO THE CHILDREN'S
HOSPITAL OF ORANGE COUNTY SHE
ENDED UP SPENDING EIGHT DAYS
LATER AND I DID A WHOLE BATTERY
OF TESTS AND QUICKLY REALIZED
THAT SHE HAD ON THE SIDEWALK AT
THE HER BRAIN HAD ACTUALLY
FALLEN FOR A LOT OF WHAT YOU'RE
REFERRING TO HERE IT WAS VERY
NEW THEY WERE KIND OF EVEN I'M
SURE EXCEPT THAT EVERY SINGLE
TASK THAT THEY RAN HAD- WITH
NEGATIVE WHICH IS. AWESOME SHE
HAD NO UNDERLYING CONDITIONS
HOWEVER COLD IT WAS STILL
POSITIVE- ALMOST SEVEN WEEKS
LATER. WELL SO WE WERE VERY
FORTUNATE THAT IN THE HOSPITAL
THEY HAD GIVEN HER SOME
MEDICATION FOR ANXIETY LIKE A
FAST ACTING ONE AND ALMOST
TRIGGERED HER THE COMMODITY OF
CATATONIC STATE AND WITHIN
THIRTY MINUTES OF BEING ON THE
MEDICATION SHE WAS ABLE TO
EXPLAIN TO US WHAT. HOW SHE WAS
FEELING HAS TRIED TO FIND A
GLASS WALL HAS SHE COULDN'T
COMMUNICATE. AND SHE WAS BACK TO
HERSELF THOUGH. WE GOT OUR A LOT
OF CARE- AND. AFTER YOU KNOW
SEVERAL. DIFFERENT DOCTORS
NEUROLOGISTS PSYCHIATRISTS
THERAPY- WE CAN'T QUOTE AND SHE
WAS DOING WELL SHE FINALLY- HAD
AN ON OFF AFTER THIS PAST FALL-
HE HAD BEEN QUEUING UP AND DOING
GREAT- BACK TO HER KIND OF
LIVELY ENERGETIC SELF I'M FULLY
VACCINATED BOOSTED AND THEN ON
JANUARY SECOND TWENTY TWENTY Q.
SHE- THE POSITIVE AGAIN- I GUESS
I SHOULD I SHOULD GO BACK AND
I'LL SAY THAT IN AUGUST WE WERE
CONCERNED. TO KIND OF GET A
BASELINE FOR WHAT WAS HAPPENING
COGNITIVELY FOR HER SO WE PAID
FOR AND ARE LOGICAL EDUCATIONAL
ASSESSMENT AND I WOULD BE FINE
WITH THAT LEARNED HAD BEEN
IDENTIFIED AS GIFTED WHEN SHE
WAS YOUNG. SO WE KNEW THAT OUR
I. Q. WAS SHOWING LIKE IN THE
NINETY EIGHTH PERCENTILE AND THE
DOG WHICH OFFER MASS TRANSIT
CHILD WHAT WE DIDN'T HAVE A
BASELINE FOR WHAT'S HER
EXECUTIVE FUNCTIONING BUT HER
TEST RESULTS CAME BACK THIS YEAR
WITH. HER WORKING MEMORY WITH AN
18% POP- AND I PROMISE YOU THAT
IS NOT HOW SHE WAS EVER GROWING
UP POOR IN WAR- AND SO I THINK
THAT WAS A BIG BECAUSE OF THE
ANXIETY SHE HAD THAT. HI
VISIBILITY VERSUS WHAT SHOULD BE
ABLE TO DEAL WITH COMPLETELY
DIFFERENT SO SHE HAS TO LEARN
HOW TO. RE LEARN HOW TO LEARN-
WHICH IS NOT EASY AT TWENTY THE
GOOD NEWS IS HER BRAIN IS STILL
YOUNG AND SHE HAS A COUPLE MORE
YEARS. TO HEAL BUT- JANUARY
SECOND SHE ACTUALLY TESTED
POSITIVE FOR A SECOND TIME EVEN
THOUGH SHE- SAID. AGAIN SHE WAS
FAIRLY THICK WE WOULDN'T EVER
CATHETER EXCEPTIONS THE CLOSE
CONTACT FOR SOMEONE ELSE- AND-
WITHOUT SHOES OKAY AGAIN AND
THEN- FRIDAY. THIS PAST WEEK.
SHE HAD ANOTHER EPISODE OF
SHUTTING DOWN AND WE HAD TO
FIGHT HER HOME. WELL AGAIN A
WEEK BEFORE SPRING BREAK- GET
HER BACK IN HER DOCTORS HERE
GETTING HER BACK ON MEDICATION-
AND SHE IS. DOING BETTER BUT
WE'RE WE'RE STILL DEALING WITH.
THAT- AND IT. IN THE PRICE OF MY
UNCLE MADE IT EXTRAORDINARY
EMOTIONALLY SOCIALLY PHYSICALLY
FINANCIALLY. I HAVE- I BECOME
ACUTELY AWARE OF ABOUT
PRIVILEGE. AND WE HAVE MANY WE
HAVE AN ENORMOUS LOVING NETWORK
FAMILY FRIENDS. HIGHLY EDUCATED
HEALTHY AND WE HAVE FINANCIAL
PRIVILEGE TO THAT WERE ABLE TO
HOP ON PLANES BRING THEIR KIDS
HOME GET THEM THE BEST MEDICAL
TREATMENT T. FOR THERAPY YOGA-
EVERY COGNITIVE BEHAVIOR THERAPY
AND THEN WE ARE WE ARE TRYING
EVERYTHING TO HELP OUR KIDS. GET
HER LIFE BACK- AND- IT'S HARD
BECAUSE SHE IS OVER EIGHTEEN-
AND SHE FALLS AND THAT'S VERY
UNUSUAL CATEGORY OF NOT QUITE
BEING AN ADULT- AND NOT QUITE
BEING A KID AND- SHE WE HAVE
STRUGGLED TO GET HER HELP- THAT
IS MEANINGFUL AND IT IS ALSO
VERY. CHALLENGING TO EXPLAIN TO
PEOPLE THAT THIS IS ACTUALLY A
REAL- AND THAT. AND I'M I MEAN.
YOU KNOW WE LIVE IN CALIFORNIA
BUT HAVING THE EXPERIENCE NOW
DAMAGE YOU HAVE TO HAVE A TOOTH
THAT DOCTORS RIGHT YES BUT
DOCTORS WHERE SHE'S LIVING
THERE. THEY JUST AREN'T EVEN
INFORMED ON THAT AT ALL SO THE
FACT THAT YOU ARE HAVING THIS
CONVERSATION THAT YOU'RE TALKING
ABOUT. CENTERS OF EXCELLENCE
AND- I MEAN THAT MAKES ME VERY
HOPEFUL FOR THE FAMILIES THAT
ARE LIVING WITH THIS BECAUSE-
IT'S A IT'S A NIGHTMARE AND SO-
PROFESSIONAL DIAGNOSIS NOW WHO'S
BEEN BOTH COPING I LOGICAL
THINKER- BUT- I MEAN. EVEN HEARD
HER PSYCHIATRIST AND ALABAMA WAS
LIKE WELL MAYBE SHE GETS. IT IT
PROMPTED YOU KNOW UNDERLYING
PSYCHOLOGICAL ISSUES THAT WOULD
HAVE BEEN THERE BUT- HER DOCTORS
HERE THING NOW IT'S- DIFFICULT
BUT THEY HAVE BRAIN CHANGED DUE
TO COLD AND WE CAN SEE IT AND
THOSE EDUCATIONAL. BUT WE'RE.
DONE NOW- YEAH THAT'S WHY. OH OH
OH THANK YOU- MR FOR SHARING THE
STORY AT SHARING WITH ALL OF US
IN THE PUBLIC EYE NOSE-
PROMOTIONS I KNOW HI IT'S NINE
AND THANK YOU FOR YOUR COURAGE
IN SHARING THIS- IT'S NOT ALWAYS
EASY AND AGAIN REALLY APPRECIATE
YOU SHARING THIS WITH ALL OF US-
THE NOW MOVE ON TO ANGEL OF VAST
QUIZ UP AND PRESENT BODY POLITIC. GREAT THANK YOU SO MUCH HI MY
NAME IS ANGELA MEDICARE OSCARS
AND TODAY I'M HERE TO SPEAK OF A
DISABLED FORMER ATHLETE. MONACO
WITH PATIENT AND PRESIDENT OF
BALI BODY POLITIC THE GRASSROOTS
PEACE OF MIND ORGANIZATION AT
THE FOREFRONT. OF LONG COAT WITH
ADVOCACY FUELED BY OUR SUPPORT
GROUP OF OVER TEN THOUSAND
PATIENTS WORLDWIDE. THANK YOU
MEMBERS OF THE COMMITTEE AND
STAFF FOR INVITING ME TODAY.
BEFORE GETTING HOGAN NINETEEN
HERE IN LOS ANGELES ON MARCH
TWENTY TWENTY HOURS A RUNNER FOR
NEARLY TWO DECADES. IN FACT THE
MORNING OF THE DAY I FIRST
STARTED FEELING SICK I HAD GONE
FOR A GREAT THREE MILE RUN. IT'S
BEEN NEARLY TWO YEARS OF CODE
NINETEEN SOMETIMES AND I HAVE.
THAT I'M NOT SURE WHEN I'LL BE
ABLE TO. EXPERIENCE AN
INCREASINGLY SCARY SET UPS AND
DOWNS INCLUDING SEVERE LEVELS OF
BLOOD CLOCKS A SERIES OF MINI
STROKES. BRAIN SWELLING SEIZURES
PAINFUL HEART PALPITATIONS
SEVERE SHORTNESS OF BREATH.
EXTREME CONFUSION AND NUMBNESS
IN MY FACE HANDS AND LEGS THAT
PROGRESSED TO AN INABILITY TO
WALK FOR SEVERAL DAYS. AND AT
MOMENTS UNABLE TO SPEAK- I ALSO
DEVELOPED NEW ONSET ANAPHYLAXIS
AFTER EVERY MEAL- AND JUST
HEARING STEPHANIE I DESCRIBED
HER DAUGHTER'S EXPERIENCES YOU
ARE- DIRECTLY. ARE SIMILAR TO MY
TO REALLY GET. COMPETENT
COMPASSIONATE CARE ESPECIALLY AT
THE BEGINNING OF THE PANDEMIC-
FROM ANY OF THE MAJOR HOSPITALS
IN LOS ANGELES- IT WAS QUITE A
TERRIFYING TIME AND I SURVIVED.
ALL OF THOSE- SYMPTOMS INCLUDING
THE MINI STROKES FROM MY BED- I
pSEVERAL ONGOING CHRONIC
CONDITIONS INCLUDING LIKELY A
MILD FORM OF MYALGIC AND STUFF
ON MY LATEST M. EAT. ALSO KNOWN
AS CHRONIC FATIGUE SYNDROME OR
ME CFS AT THE NARROW IMMUNE
CONDITION WHOSE HALLMARK SYMPTOM
IS POST EXERTIONAL SYMPTOM
EXACERBATION WHICH MEANS WHEN I
PUSH MYSELF PAST A DYNAMIC
THRESHOLDS. I WILL EXPERIENCE A
RELAPSE OF MY WORST SYMPTOMS
LIKE INSOMNIA BRAIN FOG AND
CONFUSION SLEEP APNEA HEART
PALPITATIONS. AND SEVERE
MIGRAINES I HAVE DEVELOPED A
STRICT HASTING REGIMEN THAT
ALLOWS ME TO WORK FROM HOME.
MORE THAN FULL TIME REALLY- BUT
I DON'T DO MUCH ELSE I DON'T
SOCIALIZE I DON'T ENJOY MY OLD
HOBBIES. AND I DON'T EVEN LEAVE
MY HOME ESPECIALLY NOW THAT I'M
CONSIDERED HIGH RISK. FOR
COMPLICATIONS FOR A SUBSEQUENT
REGULAR INSPECTION AS YOU DO
HEARD- ON MY ME AT LEAST HALF TO
KNOW IT THIRDS OF SURVEY
UNCOVERED COULD NOT WORK FULL
TIME THE VAST MAJORITY OF
PATIENTS EXPERIENCE DEEP PETITE
ALONG WITH NEUROLOGICAL AND
COGNITIVE SYMPTOMS THAT MAKE IT
DIFFICULT TO DRIVE MAKE
DECISIONS REMEMBER INSTRUCTIONS
FOLLOW CONVERSATIONS AND PLAN
AHEAD. THE BOOKING AND BROOKINGS
INSTITUTE RECENTLY ESTIMATED
THAT ONE POINT SIX MILLION
WORKERS ARE OUT OF THE WORK
FORCE DUE TO LONG COALBED WHICH
REPRESENTS AN ASTOUNDINGMAJORITY OF THE ESTIMATED TWO
POINT TWO MILLION PEOPLE BUT THE
LABOR FORCE IS MISSING FROM ITS
PRE PANDEMIC SIZED. EVEN BEFORE
KOBE TO ME CFS WHICH IS
EXTREMELY DEBILITATING AND HAVE
SIGNIFICANT OVERLAP WITH ONE
KOBE AFFECTED ONE HUNDRED EIGHTY
THOUSAND CALIFORNIANS AND OUR
CAR AND COST OUR ECONOMY FIVE
BILLION DOLLARS ANNUALLY IN LOST
WAGES AND MEDICAL EXPENSES THERE
ARE ONLY ABOUT SIX AND THE CFS
SPECIALISTS PRACTICING IN
CALIFORNIA WHICH MEANS THAT
CALIFORNIANS LIKE ME. AFFLICTED
WITH ME CFS OFTEN WAIT UP TO TWO
YEARS BEFORE BEING EXAMINED BY A
SPECIALIST MANY NEVER GET TO SEE
ONE AT ALL AND THIS TREND IS NOW
ABSOLUTELY OCCURRING WITH ONE
KOBE. I'M IN THE MILD END OF THE
SPECTRUM OF DISABILITY HAVE LONG
pCOOPERATED I HAVE BEEN PART OF
SUPPORT GROUPS LISTENING
SESSIONS AND NEWS REPORTS OF
PATIENTS WERE UNABLE TO WORK AT
ALL WHO ARE HOMEBOUND LIKE ME OR
EVEN BED BOUND. UNABLE TO CARE
FOR THEMSELVES BECAUSE THE ACT
OF MAKING A MEAL LEAVES THEM
WITH FEVERS AND PAIN SO SEVERE
THEY ARE COMPLETELY TAKEN OUT
FOR THE REST OF THE DAY THESE
PATIENTS HAVE FAMILIES THAT ARE
OFTEN PARENTS AND BREADWINNERS
THEIR ACCESS TO BENEFITS IS
NONEXISTENT BECAUSE LONG COVE IT
WAS NOT EVEN A DIAGNOSABLE
CONDITION UNTIL OCTOBER NEARLY
TWO YEARS INTO THE PANDEMIC
DESPITE THE MEDICAL RESEARCH ON
POST VIRAL CONDITIONS LIKE ME
CFS CHRONIC LYME AND EVEN AIDS.
HAS EXISTED TO GUIDE CLINICIANS
IN CARING FOR PATIENTS. WITH
INFECTION TRIGGERED THE QUALITY.
WE MUST BUILD ON THE SUCCESS
RESEARCH AND NOT TO FRAME LONG
IT AS AN ENTIRE NEW PHENOMENON.
MY FRIEND AND COLLEAGUE HANNAH
DAVIS FROM THE PATIENT LED
RESEARCH RESEARCH COLLABORATIVE-
WHO ARE STUDYING LONG COVE IT
HAS STARTED ALL OF MY TESTS CAME
UP NORMAL UNTIL I WENT TO AN
EMMY CFS DR. AND THEN NONE OF MY
LABS WERE NORMAL. THAT'S TRUE
FOR ME AS WELL I WAITED A YEAR
TO SEE A SPECIALIST WHO CAN
DIAGNOSE AND TREAT MY CONDITION
NAMELY MAST CELL ACTIVATION
SYNDROME. AND SHE HAS WORKED
WITH PATIENTS WITH POST VIRAL
ILLNESS SUCH AS M. CAST IN MECS
FAST FOR YEARS AND HAVE TO WAIT
LIST A MILE LONG. WE ALSO KNOW
THAT THE VIRUS HAS
DISPROPORTIONATELY IMPACTED
COMMUNITIES OF COLOR BOTH
ECONOMICALLY AND IN TERMS OF
THEIR HOUSE. THIS MEANS THAT
THERE ARE LIKE MILLIONS OF LONG
COVE IN PATIENTS WHO BEAT HER
BECAUSE OF INCOME OR IMMIGRATION
STATUS. REMAIN UNIDENTIFIED OR
UNSUPPORTED WITH THEIR NEW JUST
ABILITIES BY THE HEALTH CARE
SYSTEM. EMPLOYERS AND SCHOOLS. I
ALSO DID WANT TO NOTE THAT FAST
ESTIMATES SHOW THAT IT ABOUT 30%
OF INDIVIDUALS WHO HAVE HAD COPA
NINETY REPORTED AT LEAST ONE
PERSISTENT SYMPTOMS. UP TO SIX
MONTHS AFTER INFECTION. THAT
MEANS A CONSERVATIVE ESTIMATE IN
CALIFORNIA IT'S TWO POINT SIX
MILLION SURVIVING COPD PATIENTS
IN CALIFORNIA. TWO POINT SIX
MILLION PATIENTS ARE
EXPERIENCING SYMPTOMS OF LONG
COLD BED- IT WHICH ARE VARIED
AND OBVIOUSLY ARE DIFFICULT TO
TREAT IF YOU DON'T HAVE A
HISTORY OF TREATING PERSISTENT.
INFECTIOUS CHRONIC ILLNESS SO
TOGETHER WITH THE DISABILITY AND
CHRONIC ILLNESS COMMUNITIES LONG
COVERED PATIENTS NEED CALIFORNIA
TO DO THE FOLLOWING. THE FIRST
IS TO ADDRESS THE CLINICAL CARE
CRISIS AND LONG COAL BED AND
RELATED POSTS VIRAL ILLNESSES
LIKE ME CFS. CALIFORNIA'S
CENTERS OF EXCELLENCE MUST BE
CREATED. THE CENTER SHOULD BE
LOCATED THROUGHOUT THE STATE AND
SHOULD PROVIDE ADEQUATE CARE
CONDUCT RESEARCH AND ENGAGE IN
EDUCATION TRAINING AND OUTREACH.
TO POLICIES THAT ENSURE THAT ALL
PATIENTS WITH COMPLEX CHRONIC
ILLNESS. HAVE ACCESS TO THE BEST
POSSIBLE PRIMARY AND SPECIALIST
CARE FULLY COVERED BY PRIVATE
INSURANCE AND MEDICAL. AND IN
THE CASE OF COVER NINETEEN
REGARDLESS OF HAVING A POSITIVE
TEST. DUE TO TESTING ISSUES
THROUGHOUT THE PANDEMIC
ESPECIALLY IN POOR BLACK AND
BROWN COMMUNITIES. THREE ENSURE
THAT LONG COVERED PATIENTS ARE
ABLE TO ACCESS STATE DISABILITY
INSURANCE BENEFITS. EVEN IF THEY
DO NOT HAVE A POSITIVE TEST
GIVEN THE PERSISTENT TESTING
ISSUES. FOR REQUIRE COMMERCIAL
AND PUBLIC HEALTH PLANS WITH
GUIDANCE FROM THE CALIFORNIA
DEPARTMENT OF PUBLIC HEALTH IN
CAL AG JUST. TO CONDUCT
EXTENSIVE OUTREACH AND EDUCATION
TO PROVIDERS AND BENEFICIARIES
ABOUT THE SYMPTOMS. OF LONG
PROBATE AND GUIDE IT'S ON HOW TO
ACCESS. FIVE CREATE AN FOR
PROVIDERS AND MEDICAL STUDENTS
INCLUDING MEDIC HELP PROVIDERS
TO RECEIVE ONGOING CLINICAL
EDUCATION ON COMPLEX CRACKED AND
CHRONIC INFECTION. INFECTION
INITIATED ON THAT SAYS AND
FINALLY AT SIX STRONGER
ENFORCEMENT OF EMPLOYER IN
SCHOOL ACCOMMODATIONS FOR LONG
CARPET AND OTHER CHRONIC
CHRONICALLY ILL PATIENTS WHO MAY
BE ABLE TO WORK OR GO TO SCHOOL
IF THEY HAVE ACCESS TO TELEWORK
OR DISTANCE LEARNING. CAN HAVE
ADOPTED SCHEDULES ARE PROVIDED
WITH REASONABLE ACCOMMODATIONS
INCLUDING MASKING REQUIREMENTS
FOR THEIR COLLEAGUES WITH WHOM
THEY SHARE INDOOR SPACE. AND
HAVE THE OPPORTUNITY TO
RESTRUCTURE THEIR ASSIGNMENTS OR
JOBS THANK YOU SO MUCH. THANK
YOU THANK YOU THIS FAST WITH
THIS- AND- AGAIN THANK YOU ALSO
FOR SHARING YOUR PERSONAL STORY
AS WELL- WITH ALL OF US AND YEAH
I KNOW HOW CHALLENGING THAT IS
IN THIS PUBLIC FORUM TO SHARE
SOMETHING SO PERSONAL AS WELL.
LET'S NOW MOVE ON TO JENNIFER
STARK- PATIENT IN MANAGING
ATTORNEY AT DISABILITY RIGHTS
CALIFORNIA. AFTERNOON THANK YOU
MISTER CHAIR AND MEMBERS OF THE-
COMMITTEE FOR INVITING ME TO
SPEAK TODAY. MY NAME IS JENNIFER
STARK AND I'M THE MANAGING
ATTORNEY OF THE MENTAL HEALTH
PRACTICE GROUP AND DISABILITY
RIGHTS CALIFORNIA. I'M HERE TO
SPEAK ABOUT MY PERSONAL
EXPERIENCES WITH LONG COVETED.
AND IMPORTANCE OF AFFORDING
DISABILITY ACCOMMODATIONS AND
PROTECTIONS. FOR THOSE WHO ARE
NEGATIVELY AFFECTED BY IT.
ALMOST TWO YEARS AGO TO THE DAY
I BECAME SICK. AT THE TIME I WAS
ON PARENTAL LEAVE AND BARELY
LEAVING THE HOUSE BECAUSE I
NEEDED TO CARE FOR MY FOUR MONTH
OLD DAUGHTER AND I WAS ALREADY
CONCERNED ABOUT THE VIRUS. HOW
THE STATE'S LOCKDOWN ORDERED
GONNA JUMP BACK JUST ONE WEEK
PRIOR. I LIKELY WOULD HAVE BEEN
SPARED THE VIRUS AND THE
CONTINUING TOLL IT TAKES. I WAS
SICK FOR APPROXIMATELY THREE
WEEKS. WELL ALL MY SYMPTOMS
TRACKED THOSE OF KOBE AND I
NEVER RECEIVED A POSITIVE TESTS-BECAUSE TESTS WERE NOT AVAILABLE
FOR PEOPLE LIKE ME. REALLY LEAVE
THE BED BUT I DID NOT REQUIRE
HOSPITALIZATION. IN THE WEEKS
AFTER HAVING COME IN I FEEL
EXTRAORDINARILY GRATEFUL FOR
HAVING RECOVERED AND MOVED
BEYOND- SUCH A FRIGHTENING
EXPERIENCE. BUT APPROXIMATELY
TWO AND A HALF MONTHS LATER I
DEVELOPED BREATHING PROBLEMS
AGAIN. I WONDER DO YOU KNOW
WHETHER I MIGHT HAVE CALLED IT A
SECOND TIME. PROSPECT IT SEEMS
NEARLY IMPOSSIBLE BECAUSE I
HADN'T LEFT THE HOUSE. I WENT IN
I GOT TESTED FOR KOBE AND FOR
CODY ANTIBODIES AND BOTH CAME
BACK NEGATIVE. DOCTORS HAD NO
EXPLANATION FOR ME. I'M SEVERAL
IT I WAS BASICALLY TOLD JUST TO
TAKE AN ANTACID- SEVERAL WELL
MEANING FRIENDS AND FAMILY
EXPRESSED DISBELIEF THAT I AND
EVERYONE HAD KOBE OR ANYTHING
RELATED TO IT. THEY WONDERED
WHETHER THE EXTREME FATIGUE THAT
I WAS EXPERIENCING WHICH IS AKIN
TO HAVING MONO WAS SIMPLY DUE TO
HAVING A NEW CAR. THE QUESTION
THE SERIOUSNESS OF MY SYMPTOMS
RECURRING LOW GRADE FEVERS SHORT
TERM MEMORY LOSS BRAIN FOG.
DIFFICULTY BREATHING RACING
HEART BEAT DIGESTIVE PROBLEMS
ANXIETY DEPRESSION. ACCORDING TO
THEM BECAUSE I WAS MANAGING TO
KEEP WORKING AS A LITIGATOR AND
I DIDN'T NEED TO AND I DIDN'T
COMPLAIN VERY OFTEN. I SEEMED
FINE. THEY SOON I WAS MERELY
EXAGGERATING OR BEING A
HYPOCHONDRIAC. WHEN I WENT TO A
DOCTOR TO EXPRESS CONCERN TO MY
SCHOOL AND I IN SCHOOL AND
HOSTED IN TURN RUFFLED PURPLE
AND MADE IT DIFFICULT TO WALK.
THEY ME THAT I SHOULD JUST STOP
WEARING FLIP FLOPS. THIS IS THE
BEGINNING OF WEEKS MONTHS AND
NOW YEARS OF- PEOPLE JUST
BELIEVING ME AND MY EXPERIENCE
HAS. SIMPLY BECAUSE SCIENCE HAS
NOT CAUGHT UP TO THE LIVED
EXPERIENCES OF PEOPLE WITH LONG
. SINCE MARCH OF TWENTY TWENTY I
HAVE HAD RECURRING WAVES OF
SYMPTOMS THAT WE NOW RECOGNIZE
EMBLEMATIC OF LONG IT. IS WIDE
RANGING SYMPTOMS OF AFFECTED ME
FROM HEAD TO TOE I SPENT MONTHS
TRYING TO GET A DOCTOR'S
APPOINTMENTS AND MEETINGS WITH
SPECIALISTS. IN WHAT FEELS LIKE
A GAME OF WHACK A MOLE. AFTER
WAITING FOR MORE THAN THREE TO
FOUR MONTHS TO SEE A NEUROLOGIST
MY SYMPTOMS MOVE TOO MUCH FROM
MY BRAIN TO MY LUNGS. BY THE
TIME I GOT TO MEET WITH THE
PULMONOLOGIST MY SYMPTOMS HAD
MOVED TO MY JOINTS AND SO ON. I
REQUEST YOU REFERRALS TO SEE THE
LONG HOPING UNITED UCSF. BUT
INITIALLY DIDN'T QUALIFY BECAUSE
I WAS NEVER HOSPITALIZED. I'M
NOT ON THE LIST FOR AN
APPOINTMENT WITH YOUR SCHEDULE
MORE THAN NINE MONTHS AGO AND
UCSF HAS ALREADY CANCELLED. ONCE
I'M STILL WAITING. I'VE BEEN
LIVING WITH LONG COVERED FOR
ALMOST TWO YEARS NOW AND HAVE
YET TO BEAT ME WITH ANY MULTI
DISCIPLINARY DOCTORS WHO CAN
HELP ME TO UNDERSTAND. IN FACT
THE LONG CALL BUT IS HAVING ON
MY BODY. AND WHAT IF ANYTHING I
CAN DO TO TREAT IT. THE IMPACT
OF HAVING LONGER BUT IT'S HAD ON
ME MENTALLY AND PHYSICALLY IT'S
HARD TO QUANTIFY. BUT I FEEL
COMPARATIVELY LUCKY MANY PEOPLE
WITH LONG KOBE HAVE HAD FAR MORE
DEVELOPED DEBILITATING
DEBILITATING EXPERIENCES. AND
I'VE NOT BEEN ABLE TO WORK. AT
ALL. THIS HAS TAKEN IT. ON MY-
AND I. TO TAKE FARM SICK THAN
EVER. YOU KNOW THINK. AND I
CHANGING. AND DOCTORS AND- I'VE
OPTED OUT OF CERTAIN CAREER
OPPORTUNITY. I'M CONCERNED THAT
THAT SYMPTOMS MIGHT RETURN. AND
I MIGHT NOT BE ABLE TO PERFORM
THE TASKS NECESSARY. DESPITE THE
SETBACKS I HAVE BEEN ABLE TO
KEEP WORKING BECAUSE I HAVE A
JOB THAT OFFERS FLEXIBILITY
MAKES REASONABLE ACCOMMODATIONS
FOR PEOPLE WITH DISABILITIES. IF
I WERE IN A DIFFERENT WORKPLACE
REFUSE TO OFFER THESE
ACCOMMODATIONS I MAY HAVE NEEDED
TO QUIT SEVERAL MONTHS AGO.
THERE'S NO QUESTION THAT THIS IS
ONE OF THE MOST DISABLING
ADVANCE IN UNITED STATES HISTORY
. AND THE DISPROPORTIONATE
IMPACT THE CODE NINETEEN HAS HAD
ON UNDERSERVED COMMUNITIES AND
COMMUNITIES OF COLOR ESPECIALLY
THE BLACK LIKE NEXT IN AMERICAN
INDIAN COMMUNITIES. MAKES THE
NEED TO RESPOND TO THIS
DISABLING EVENT IN A WAY THAT'S
SQUARELY ADDRESSES SOCIO
ECONOMIC INEQUALITY ABSOLUTELY
VITAL. BASED ON MY OWN
EXPERIENCES IN THE WORK I'VE
DONE A DISABILITY RIGHTS
CALIFORNIA FOR MANY STATES
THAT'S THE CALIFORNIA MUST HATE
TO ADDRESS THIS CRISIS. WE'VE
ALREADY FEEL HEARD A FEW OF
THOSE AND I JUST WANNA ECHO
SUPPORT. I'M BUILDING ON WHAT
SEVERAL OTHER PANELISTS AMARI
SAID. FIRST THERE NEEDS TO BE
CLEAR RECOGNITION THAT LONG CODE
CAN BE DEEMED A DISABILITY UNDER
THE AMERICANS WITH DISABILITIES
ACT. WHICH TRIGGERS THE NEED TO
PROVIDE ACCOMMODATIONS. DESPITE
THE OFTEN INVISIBLE NATURE OF
THIS CONDITION IT MUST BE CLEAR
TO BUSINESSES SCHOOLS AND
EMPLOYERS. THE PEOPLE WHOSE LONG
COVERED QUALIFIES AS A
DISABILITY MUST BE AFFORDED THE
SAME PROTECTIONS FROM
DISCRIMINATION. THE REASON
ACCOMMODATIONS AS ANY OTHER
PERSON WITH A DISABILITY UNDER
THE ADA AND REHABILITATION.
THERE ALSO NEEDS TO BE FAR MORE
RESEARCH ON LONG PROBATE THIS IS
A BIG FOCUS ON UNDERSERVED
COMMUNITIES COMMUNITIES OF COLOR
AND PEOPLE WITH DISABILITIES AND
UNDERLYING HEALTH CONDITIONS.
AND AS WE'VE ALREADY HEARD THERE
IS A NEED FOR EXPANDED TREATMENT
OPTIONS INCLUDE MULTI
DISCIPLINARY TREATMENT TEAMS
ACCESS CENTERS OF EXCELLENCE.
BUT A REDUCTION OF UNNECESSARY
BARRIERS TO TREATMENT AND
REIMBURSEMENT SUCH AS
ELIMINATING THE NEED FOR
HOSPITALIZATION OR PROOF OF THE
POSITIVE CONTEST. AND THERE HAS
TO BE CONTINUOUS FEEDBACK LOOP
WITH LEADING REPRESENTATIVES OF
THE PATIENT COMMUNITIES
INFORMING RESEARCH AND POLICY
DECISIONS. HOW MANY OF TE
PROBLEMS THAT PEOPLE WITH LONG
KOBE AND ARE EXPERIENCING ARE
NOT NEW TO THE DISABILITY
COMMUNITY. THIS IS A NEWLY
POLITICAL PROBLEM GIVEN HOW MANY
MORE PEOPLE ARE NOW GOING TO BE
IMPACTED. FOR ME THE SCARIEST
PART OF ALL OF THIS IS THAT WE
HAVE NO IDEA WHAT THE FUTURE
HOLDS. WHILE I AM THANKFULLY
ONLY EXPERIENCING WHAT SEEMED TO
BE MINOR LONG COVERED SOMETHING
RIGHT NOW. I HAVE NO IDEA WHAT
TOMORROW NEXT MONTH OR NEXT YEAR
MIGHT BRING. WHETHER LONG
COVERED WILL BECOME A LIFELONG
CHRONIC CONDITION FOR ME EARLY
TO EARLY MORTALITY. WHETHER MY
TIME WITH MY TWO YOUNG CHILDREN
WILL BE CUT SHORT OR MY ABILITY
TO BUILD A MEANINGFUL CAREER WE
HOLD. NO ONE KNOWS. I HOPE THAT
OTERS DON'T HAVE TO CONTINUE TO
NAVIGATE THESE TERRIFYING
QUESTIONS IN A WAY THAT I HAVE
LARGELY ALONE. THANK YOU. THANK
YOU MR ARCA AND THANK YOU FOR
SHARING YOUR PERSONAL STORY AS
WELL AND- YEAH AND- END OF IT
SAID IT. IT'S ALWAYS CHALLENGING
TO DO IN THE PUBLIC ENVIRONMENT
TO SHARE YOUR PERSONAL STORIES.
AND I WANNA THANK ALL OUR
PANELISTS- FOR BEING HERE AND
FOR SHARING WITH US SO THAT- WE-
THERE'S A LEGISLATURE CAN. I TRY
TO- HOPEFULLY MAKE PROGRESS AND-
AND ADDRESS THE ISSUES THAT
YOU'VE RAISED- I'M NOT SURE WHO
HAD A MICROPHONE UP FIRST BUT
OKAY SIR LATER. THANK YOU
SENATOR PAM I JUST WANT TO
REITERATE MY THANKS TO THESE
THREE AMAZING WOMEN WHO SHARED
THEIR STORIES ALL AT DIFFERENT
POINTS IN THEIR LIFE. AND I JUST
HOPE AS HARD AS IT MAY BE THAT
THEY WILL KEEP SHARING THEIR
STORIES. BECAUSE I'VE HEARD OF
LONG COVERT BUT HEARING THE
ACTUAL DETAILS AND HOW
DISRUPTIVE IT IS TO THEIR LIVES
WE ALL NEED TO HEAR THAT SO THAT
WE UNDERSTAND THAT IT'S REAL.
THAT IS HAPPENING AND THAT WE
HAVE TO FIND A WAY TO TACKLE IT.
I DON'T REMEMBER WHICH OF THE
THREE WOMEN STATED THAT ONE
POINT SIX MILLION. PEOPLE ARE
OUT OF WORK RIGHT NOW DUE TO
LONG COVE IT. I THINK THAT WAS
SHOCKING TO ME AND IT- THAT
PROBABLY HELPS US UNDERSTAND WHY
THERE'S SUCH A SHORTAGE OF
WORKERS RIGHT NOW. WHEN WE ADD
THAT TO THE ALMOST ONE. MILLION
PEOPLE WHO HAVE DIED DUE TO A
COVERED- IT'S NO WONDER THAT
WE'RE HAVING A HARD TIME GETTING
THE WORK FORCE- BACK UP AND
RUNNING SO I JUST WANT TO SAY
THANK YOU TO THESE THREE BRAVE
WOMEN. BECAUSE IF WE DON'T KNOW
BETTER WE CAN'T DO BETTER THANK
YOU. OKAY THANK YOU SIR LIVER
CENTER RUBIO. THANK YOU MR
PRESIDENT I ALSO WANT TO THANK
THESE WONDERFUL INDIVIDUALS FOR
SHARING THEIR STORY I KNOW IT'S
NOT EASY BUT I THINK IT'S
IMPORTANT THAT THEY DO. YOU KNOW
WHAT. REALLY SET OUT TO ME AS I
BELIEVE THAT- SOME OF THE- THE
TWO LADIES I SPOKE FIRST SAID
THAT THEY HAD ALREADY BEEN
BOOSTED AND THEN THEY GOT COLD
FEET AGAIN AND I JUST WANT TO
REITERATE THAT SINCE THERE'S SO
MUCH MISINFORMATION I HEAR IT
CONSTANTLY. FROM OUR YOUTH AND
ADULTS SAYING THAT THEY WANT TO
GET COVERAGE IS TO GET IT OVER
WITH AND IT'S IMPORTANT TO NOTE
THAT IT'S NOT JUST GETTING CALL
OF IT. BUT IT'S ALSO DEALING
WITH THESE LONG TERM EFFECTS AND
THE FACT THAT THEY WERE GOT IT.
AFTERTHEY WERE ALREADY SICK I
JUST WANTED TO MAKE THAT POINT
THAT. IT'S CLEAR THAT YOU DON'T
KNOW IF IT'S GOING TO COME BACK
AGAIN. I HEARD EARLIER TODAY
AGAIN SOMEONE WANTS TO GET
COVERAGES BECAUSE THEY WILL NOT
GET IT AGAIN. THANK YOU SO MUCH
FOR SHARING YOUR STORIES I THINK
THAT THAT PUTS. THAT PUTS IT IN
PERSPECTIVE AND I THINK THAT
LEARNING FROM YOUR STORIES WE
NOW THAT THERE'S A LOT OF WORK
TO DO AND- WILL DO WHAT WE CAN
TO CONTINUE THE RESEARCH AND TRY
TO. FIGURE OUT SOLUTIONS BUT
ONCE AGAIN THANK YOU FOR YOUR
TIME. THANK YOU SENATOR RUBIO
CENTER WINNER. THANK YOU VERY
MUCH MR CHAIRMAN I ALSO JUST
WANT TO THANK- PEOPLE TODAY BUT
ALSO IN IN GENERAL OF THE LONG
HAULERS- WHO HAVE BEEN-
SUFFERING ARE OFTEN THE LAST TWO
YEARS- AND WHO HAVE BEEN
ADVOCATING AND SOMETIMES I KNOW
IT FEELS LIKE THEY'RE YELLING
INTO. THE VOID- ESPECIALLY FOR
PEOPLE WHO- KAKU VERY EARLY- IN
SPRING SUMMER TWENTY TWENTY-
WHEN WE KNEW ALMOST NOT ME SO
LITTLE ABOUT THIS VIRUS IN
GENERAL AND WE WERE IN A FIRE
DRILL EMERGENCY TRIAGE MODE- TO
YOU KNOW STOP PEOPLE FROM. DYING
TO STOP TO STOP THERE. IN OTHER
LUNGS FROM DISSOLVING
EFFECTIVELY- AND WE WERE NOT AS
A SOCIETY REALLY PAYING- ENOUGH
ATTENTION THE PEOPLE WHO HAD
RECOVERED AND- IN QUOTES FOR
COVERED UP OR NOT REALLY
RECOVERED- AND WE'RE
EXPERIENCING THESE LONG TERM.
EFFECTS AND I KNOW IT'S IT WAS
SO FRUSTRATING FOR SO MANY
MONTHS STILL AS IN TERMS OF.
GETTING THREE MEN AND SOMETIMES
GETTING THE- HEALTHCARE SYSTEM
TO TAKE THEM SERIOUSLY. AND WE
KNOW THAT EVEN BEFORE COVERT FOR
PEOPLE WITH POST VIRAL- SYMPTOMS
WHETHER FROM A MONO OR OR FROM
OTHER- VIRUSES THEY WERE NOT
TAKEN- SERIOUSLY CONSISTENTLY
AND PEOPLE WERE TOLD THAT THEY
WERE SUPPOSED- HAD A MENTAL
HEALTH ISSUE OR THEY WERE JUST-
OVERLY SENSITIVE OR THEY WERE
MAKING IT UP- AND- AND I THINK-
ONE OF THE THERE'S NOTHING GOOD
ABOUT COVERT BUT AT LEAST COVE
IT HAS. SHINED A BRIGHT LIGHT
ON- POST FILES- PROBLEMS ARE NOT
JUST FOR COVERED BUT FOR OTHER
VIRUSES AND I REALLY HOPE. THIS
LEADS TO DRAMATIC INVESTMENT AND
RESEARCH ODDS FIGURE OUT. HOW WE
PREVENT THIS FROM HAPPENING WHEN
SOMEONE HAS A VIRAL INFECTION
AND HOW WE TREAT OUR PEOPLE
AFTER THE FACT SO THANK YOU FOR
YOUR ADVOCACY- AND PLEASE KEEP
ADVOCATING. AND HOLD ALL OF US
ACCOUNTABLE. THE OTHER QUESTIONS
FROM COMMITTEE MEMBERS I DID
HAVE A QUESTION I WANTED TO
BECAUSE- ANSWER CAME FROM THE
FIRST PANEL AND- MAYBE WELL DO
IS I'LL START WITH THAT FIRST
WITH THEM THE STARK BECAUSE YOU
ALSO HAVE YOUR HAT ON AS
WEARING- DISABILITY RIGHTS AND-
I DO SEE. THAT YOU KNOW WHAT I
SEE- CITY GREETERS HAND UP SO
DID YOU WANT TO DO I RESPOND TO
ONE OF THE SENATORS WHO JUST
SPOKE. AT SO MAYBE I'LL LET YOU
GO FIRST AND THEN I'LL POST MY
QUESTION HOW IS THAT. THANK YOU
SO MUCH- I GUESS I THINK- I
APPRECIATE INPUT FROM BOTH OF
THE OTHER. WOMEN WHO SPOKE ON
THEIR- ON THEIR JOURNEY WITH US.
I JUST THINK IT'S REALLY
IMPORTANT ONE I THINK THAT WAS
BROUGHT UP THAT NEVER OCCURRED
ME AND MY EDUCATIONAL HAT AND MY
PARENTS HAD THE SAME TIME. IT
CAN BE DONE PROBABLY VERY
QUICKLY IS TO IDENTIFY WHAT WE
CAN DO IN OUR SCHOOL SYSTEM TO
HELP THESE KIDS- ONLY BECAUSE
I'M AN EDUCATOR AND I KNEW. THAT
WE COULD GO TO THE OPERA
DISABILITY. THROUGH MY DAUGHTER
TO THE UNIVERSITY TO GET HER
EXTENDED TIME. EXCUSED ABSENCES
BECAUSE SOME PROFESSOR STILL.
LIKE STILL YOU. KNOW HE MISSED
THREE CLASSES YOUR GREAT GOT. I
WHEN IT. TO A DIFFERENT. BUT I
THINK IT'S VERY IMPORTANT
BECAUSE AT ONE POINT WE WERE
TOLD BY THE UNIVERSITY COAL BED-
WILL NO LONGER BE AN EXCUSE.
MMHM AND THAT WAS VERY STARTLING
BECAUSE SO THEN WE ACTUALLY HAD
A OKAY SHE HAS ANXIETY. SO THAT
WAS IT I DON'T THINK BUT
COMFORTABLE WITH GIVE HER
ACCOMMODATION BUT THEY DID NOT
WANT YOU CALL THAT AS A- AS A
WAY FOR HER TO GET.
ACCOMMODATION THAT SHE
ABSOLUTELY NEEDED TO HAVE AND-
YOU KNOW AN EDUCATIONAL SETTING
FOR K. THROUGH TWELVE I KNOW
THAT WE CAN BE AFFECTION BIBLE
PORTION THAT MAYBE SOMETHING
THAT PARENTS DON'T EVEN KNOW
WHAT'S AVAILABLE TO THEM- I
SPEAKING FAST MAY NOT KNOW THAT
THOSE ACCOMMODATIONS. ARE GOING
TO BE NECESSARY FOR SOME OF THE
KIDS- WHO ARE GOING TO BE
TRAVELING WITH THEM I THINK IT'S
VERY IMPORTANT TO GET THAT
IDENTIFIED BY. MY POSITION THAT.
THANK YOU THANKS VERY MUCH AND
ACTUALLY THAT WAS KIND OF
REFERRED TO THE QUESTION ABOUT
THE PROS WHICH ACTUALLY INVOLVE
ME ABOUT THESE I'M GONNA START
OFF WITH- THE STARK- AND-
PARTIALLY BECAUSE ALSO YOU YOU
HAVE YOUR HATS ON AS A- AS- A AS
A- BEING AN ATTORNEY AT
DISABILITY RIGHTS- AND- THEN
THEY GO OUT AND THEN WE'LL HAVE
THIS VAST QUIZ AND ACTUALLY
MYSTERIES IF YOU WISH TO.
COMMENT ON IT AFTER HEARING THE
OTHER ANSWERS. SO THIS WHOLE
ISSUE ABOUT WHO QUALIFIES FOR
SERVICES RIGHT NOW- IT ENDED YOU
MENTIONED- SIR HE TALKED ABOUT
THE FACT THAT. YOU KNOW YOU YOU
YOU GOT TOLD EARLY ON SO THERE
WAS NO TESTING AVAILABLE ARE
VERY LIMITED TESTING AND I
REMEMBER WHEN HE DIDN'T HAVE ANY
TESTS. AND SOMETIMES EVEN NOW
SOMETIMES IT'S A BIT OF A
CHALLENGE TO- SO WHAT DO YOU SEE
FROM FROM. THE POLICY POINT OF
VIEW FROM. OUR PERSPECTIVE IS AS
LEGISLATORS WE SHOULD BE DOING
IN TERMS OF- I GUESS. BE SURE
PEOPLE AT. TO THE SERVICES THEY
NEED- YEAH HI HOW. DO PEOPLE SAY
WELL WE NEED TO HAVE SOME
GATEWAY RIGHT WE HAVE TO SOME
DEFINITIONS SOME SOMETHING IT
JUST CAN'T BE. COMPLETELY WIDE
OPEN. BUT AND MAYBE THIS IS IT-
BUT- BUT CLEARLY WE ALSO KNOW
THAT IF WE HAVE DEFINITIONS LIKE
YOU HAVE TO HAVE A POSITIVE
TESTER AND BUYS OR SOMETHING IN
MANY. AND I THINK EACH OF YOU
LIKE TO TALK ABOUT THE FACT
THAT. YOU HAD BUNCH OF TESTS AND
THEY'RE ALL NEGATIVE RATE THAT
YOU CLEARLY HAVE SYMPTOMS AND SO
FORTH- WHAT WHAT. WHAT HOW
SHOULD WE APPROACH THIS FROM A
POLICY POINT OF VIEW IN TERMS OF
BEING FREE FOR PEOPLE HAVE
ACCESS. TO SERVICES WHO ARE
PEOPLE OF DISABILITIES RELATED
TO- TO COVET OR LONG CODE OR
POST CODE- DISEASE. SO HOW CAN
HOW WE ADDRESS THAT GAP. I'M
THANK YOU VERY MUCH YOU KNOW
I'LL BE INTERESTED IN WHAT OTHER
PEOPLE TO SAY I DON'T. CLAIM
EXPERTISE IN THIS ROUND BUT-
YEAH I WOULD SAY THAT- YOU KNOW
SOME OF WHAT I BELIEVE DOCTOR
DIETZ MENTIONED EARLIER IN TERMS
OF- LOOKING AT SYMPTOMS- SEEMS
LIKE. A YOU KNOW A REALLY GOOD
APPROACH- AND ALSO BEING REALLY
COGNISANT OF. YOU KNOW THE
DEFICIENCIES. IN TERMS OF-
RECOGNIZING WHAT IS NORMALLY
BEEN REQUIRED TO QUALIFY AND
WHAT DOES NOT WORK IN THIS
CONTEXT SO AS YOU SAID.
RECOGNIZING THAT TESTING WAS NOT
AVAILABLE AND THAT THERE
CONTINUE TO BE LIMITS WITH
TESTING RECOGNIZING THAT.
HOSPITALIZATION IS NOT A PROXY
FOR- WHETHER OR NOT SOMEBODY CAN
HAVE LONG PROGRAM. RECOGNIZING
THAT ANTIBODIES IS NOT
NECESSARILY PRESS THE STAR. I
THINK LOOKING AT WHAT ARE THE
SYMPTOMS EVEN IF IT'S IN
PERFECT. THAT TEND TO- THEY TEND
TO YOU KNOW CORRELATE TO
WITNESS. AND NOT- CREATING.
UNNECESSARY HURDLES. ON
OBSTACLES PARTICULARLY
RECOGNIZING THE TREMENDOUS-
SOCIAL SOCIOECONOMIC INEQUALITY.
THAT PREVENTS MANY PEOPLE FROM.
I'M GOING THROUGH AND YOU KNOW.
CHECKING THE BOXES THAT MIGHT
OTHERWISE OTHERWISE NECESSARY.
READ ALSO BE REALLY INTERESTING
ISN'T VASQUEZ'S OPINION BECAUSE
I FEEL LIKE. SHE HAS EVEN MORE
EXPERIENCE IN THIS REALM AND I
FEEL LIKE I HAVE WHILE I AM AN
ATTORNEY AND I CAN TALK ABOUT.
KNOW WHAT IS REQUIRED TO MAKE
SURE THAT PEOPLE ARE YOU KNOW
QUALIFY AS HAVING A DISABILITY
UNDER THE ADA- I FEEL LIKE MUCH
OF THAT MY EXPERIENCE HERE HAS
BEEN. AS AN INDIVIDUAL NOT THE
PATIENT. I'M I GUESS I WOULD
JUST ADD ONE THAT. THE
FRUSTRATE. OF FEELING LIKE I
HAVE- DOES THE DESPERATION FOR
TREATMENT THE DESPERATION FOR
LIKE CREDIBILITY FOR PEOPLE TO
BELIEVE WHAT I'M SAYING- AND NOT
BEING ABLE TO POINT TO ANYTHING
TANGIBLE HAS BEEN- A
TREMENDOUSLY CHALLENGING PIECE
OF THIS IS LED TO ALSO- YOU KNOW
A LOT OF MENTAL HEALTH
CHALLENGES. AND SO I THINK- JUST
RECOGNIZING THE WAY THAT- STIGMA
PLAYS INTO THEIR EYES AND
RECOGNIZING THAT- YOU KNOW SOME
OF THE NEED TO. DEFINE PEOPLE
CAN LEAD TO ADVERSE CONSEQUENCES
AND ALSO MAKE IT MORE OR- LESS
LIKELY THAT PEOPLE EVEN CARE.
THANK YOU THANK YOU AND I AND
AGAIN I. T. SERVICES ARE I THINK
OUR EXPERTS HAD MENTIONED- THE
FIRST PANEL MENTIONED THAT
CERTAINLY COMES EVEN PEOPLE VERY
MILDER PRACTICALLY SYMPTOMATIC.
CAN ALSO DEVELOP LONG CODES OF
THIS IDEA OF HOSPITALIZATION IS
THE THRESHOLD OF THE SOUTHWEST.
YES ON THE TAKE A GREAT
QUESTION- THAT THE FIRST THING
I'LL I'LL NOTE IS THAT- IT'S
REALLY IMPORTANT TO REMEMBER
THAT IN THE BODIES- ARE ARE. NOT
THE BEST WAY TO- IDENTIFY A
PREVIOUS INSPECTION- AND IN FACT
ESPECIALLY IN LONG COALBED THERE
SEEMS TO BE SOME SORT OF
CONNECTION BETWEEN NOT- WHAT'S
CALLED CERRO CONVERTING NOT
CREATING ANTIBODIES- OR
SUFFICIENT ANTIBODIES OR TIMELY
ANTIBODIES. AND LONG COVERT
SYMPTOMS AGAIN PROBABLY NOT BE
THE SAME THAT CAUSES LONG HOLD
IT BUT THERE'S CERTAINLY SOME
ASSOCIATION AND IT SEEMS REALLY
PREVALENT IN OUR COMMUNITY-
ALONG WITH PATIENTS WHERE-
DESPITE NO MATTER WHEN WE'RE
BEING TESTED WE ARE NOT- WE ARE
NOT- AT PRODUCING. A DETECTABLE
ANTIBODIES SO I REALLY REALLY
WANT TO CAUTION POLICYMAKERS
FROM- FROM USING TESTING AS A
MEANS OF GATE KEEPING BOTH OUR
CLINICAL CARE. RESEARCH COHORTS
AND- AND BENEFITS BASED ON
TESTING BECAUSE IT'S JUST SIMPLY
NOT SENSITIVE ENOUGH TO. PICK UP
EVEN THE MAJORITY OF ONE CALL
THAT PATIENT I WOULD I WOULD
SAY- IN TERMS OF YOU KNOW HOW DO
WE ENSURE THAT FOLKS. ARE YOU
KNOW. TRULY SICK TO GET- GET
BACK THE FIFTH I WOULD I WOULD
CHALLENGE POLICYMAKERS TO THINK
ABOUT THE HISTORY OF MEDICAL GAS
LIGHTING AND- UNDERMINING OUR
PATIENT- NARRATIVES OF THEIR OWN
ILLNESS AND REALLY CHALLENGE.
YOU KNOW THE STATE AND POLICY
MAKERS TO BELIEVE PATIENTS AND-
YOU KNOW THEY ARE THE EXPERTS ON
THEIR OWN EXPERIENCE AND THEIR
BODIES I MEAN THERE WAS A HUGE-
THERE'S A HUGE HISTORY OF. NOT
JUST UNDERMINING WOMEN'S HEALTH
EXPERIENCES AND DIMINISHING
THEIR PAIN AND THEIR- THEIR
NARRATIVES OF THEIR OWN
SUFFERING- BUT THERE IS ALSO A
VERY- A VERY STRONG- ANTI- AIDS. MOVEMENT IT'S THE NIHILISM
EVEN JUST FOR RECENTLY SO I IT
IS. IT FOR ME. I A DIAGNOSIS
ONCE- ESPECIALLY ONCE IT'S
DEVELOPED- MUST BE INCLUSIVE
THAT MUST BE INCLUDED IN SORT OF
BENEFITS EVALUATION- FOR EXAMPLE
THERE'S NO TEST TO- DEFINE
MIGRAINE. BUT PEOPLE THERE ARE
PEOPLE WHO ARE DISABLED AND NOT
FIND MY GREEN TO RECEIVE LONG
TERM DISABILITY BENEFITS AND SO
I WOULD REALLY STRONGLY
ENCOURAGE US AGAIN IF
POLICYMAKERS TO ACCEPT THAT LONG
HOPE IT CAN BE CLINICALLY
DEFINED BY. YOU KNOW SOMEONE WHO
KNOWS WHAT TO LOOK FOR BY YOU
KNOW BY POST BY ROLE. AT EXPERT.
AND NOT SPOTS WHERE I WOULD PUSH
POLICYMAKERS TO GO IS TO CREATE
A STRONG CLINICAL DEFINITION OF
ONE KOVIC AND THEN EDUCATE
DISABILITY- ADMINISTRATORS AND
AUDITORS BECAUSE OFTEN WHAT I'VE
HEARD FROM OTHER PATIENTS I
MYSELF HAVE NOT. APPLIED FOR
DISABILITY BENEFITS ALTHOUGH I
HAVE I DO HAVE ACCOMMODATIONS
FOR MY EMPLOYER- DIET THAT
DISABILITY EVALUATORS ARE OFTEN
QUICK TO UNDERMINE CLINICAL
DIAGNOSES- EVEN WHEN DOCTORS ARE
ARE ARE VERY THOROUGH AND FOR
RENT AND DOCUMENTING A PATIENT'S
DISABILITY IS- SO I THINK THERE
NEEDS TO BE NOT JUST. EDUCATION
ON THAT CLINICIANS WHO ARE YOU
KNOW SUPPORTING PATIENTS IN
APPLYING FOR DISABILITY BENEFITS
BUT WE NEED A MASSIVE. EDUCATION
EFFORT ON DISABILITY
ADMINISTRATORS AND AUDITORS- WHO
WHO EVALUATE THESE CLAIMS AND
MAKE DECISIONS BECAUSE- I THINK
ALSO A LOT OF INSTITUTIONAL
GENDER BIAS AND RACE AND
ETHNICITY BIAS OFTEN COME INTO
PLAY WHEN EVALUATING THESE
CLAIMS AS WELL. AND THAT'S IT
THANK YOU FOR CALLING THANK YOU
AND MISTER PETERS DID YOU WANT.
TO MAKE ANY ADDITIONAL REMARKS-
THE THIS ISSUE. NO I THINK AT
THE END THEY WERE VERY WELL
SPOKEN TO I JUST THINK IT'S
SOMETHING BE VERY HOT- THAT WE
MAKE SURE THAT- THE COMBINATION
BETTER DUE TO PEOPLE THAT NEED
THEM ESPECIALLY IN AN
EDUCATIONAL SETTING- I AVAILABLE
. ANY OTHER QUESTIONS FROM
COMMITTEE MEMBERS BUT YES THAT
WAS THE LAST TIME YOU SAID
EARLIER THANK YOU YOU KNOW I
JUST WANTED TO ADD ON TO WHAT MS
VASQUEZ SAID ABOUT- BELIEVING
PEOPLE M. BELIEVING WOMEN IN
PARTICULAR IT KIND OF REMINDS ME
OF FIBROMYALGIA BEFORE THAT WAS-
READILY DIAGNOSABLE I HAD A VERY
GOOD FRIEND WHO IT TOOK ALMOST
TEN YEARS FOR HER TO GET THAT
DIAGNOSIS SO YES WE HAVE TO BE
OPEN TO NEW THINGS I WANT TO
BELIEVE PEOPLE I JUST DON'T
THINK PEOPLE. GO TO THE DOCTOR
BECAUSE THEY HAVE NOTHING BETTER
TO DO AND MOST PEOPLE ON LIVE
THEIR HEALTHIEST AND BEST LIFE
AGAIN THANK YOU TO ALL THE
MEMBERS ON THIS PANEL. HELLO
THANK YOU ALL VERY SO VERY MUCH
AND AGAIN THANK YOU SO MUCH FOR
SHARING YOUR PERSONAL STORIES-
MISTERS I'M HOPING YOUR DAUGHTER
LAUREN. IS GOING TO GET BETTER
SOON I KNOW SHE'S- AND THEN
ALSO- THIS PAST CHRISTMAS STAR
HOPEFULLY THAT- YOUR SYMPTOMS
HOPEFULLY WE CAN. STILL BE SOME
RESOLUTION SOMETIME- AND- AGAIN
PREACHER YOU TAKING THE TIME ALL
OF YOU TAKING YOUR TIME OUT TO
ADVOCATE AND SPEAK OUT SO WE CAN
HEAR YOUR STORIES AND- AND
HOPEFULLY- LEARN FROM THEM TO
PURSUE- BETTER POLICIES. SO
AGAIN THANK YOU VERY MUCH. ARE
WE GONNA MOVE IT ONTO OUR THIRD
PANEL- ON STATEWIDE PLANNING
PREPARATION RESPONSE SO AS WE'VE
BEEN DEALING WITH KOVIN- WHAT
ARE WE DOING TO TRY TO ADDRESS
LONG BECAUSE OF IT. AND PLEASE
WE HAVE TWO PANELISTS WE HAVE
DOCTOR COUPON WHO IS THE-
CALIFORNIA STATE EPIDEMIOLOGIST
AND DEPUTY DIRECTOR. FOR THE
CENTER FOR DISEASES AT THE
CALIFORNIA DEPARTMENT PUBLIC
HEALTH. AND DOCTOR JOANN ELMORE
PRINCIPAL INVESTIGATOR OF
INNOVATIVE SUPPORT FOR PATIENTS
WITH SARS CODE TO INFECTIONS
REGISTRY AT THE UNIVERSE ACCOUNT
FORMULA LOS ANGELES. SO START
WITH DOCTOR PUN WELCOME. GOOD
AFTERNOON SENATOR PANDA NEWMAN
AND COMMITTEE MEMBERS THANK YOU
SO VERY MUCH FOR HAVING ME THIS
AFTERNOON. I WANTED TO POSE ALSO
AND JUST ECHO THE HUGE THANKS TO
THE PRIOR SPEAKERS FOR SHARING
THEIR EXPERIENCES THAT REALLY
IS- HELPFUL AND MEANINGFUL TO
ALL OF US AND TAKES A LOT OF
COURAGE TO THANK YOU VERY MUCH.
I'M HERE TODAY TO PROVIDE YOU
WITH INFORMATION ABOUT THE
STATE'S EFFORTS TO ASSESS STUDY
AND PREVENT POST CODE
CONDITIONS. AND ALSO HIGHLIGHT
SOME OF OUR ACTIVITIES AND PLANS
TO EVALUATE AND ADDRESS THE
BROADER IMPACTS OF THIS
DEVASTATING PANDEMIC ON
CALIFORNIANS. AS WE TRANSITION
INTO THIS NEXT PHASE OF THE
PANDEMIC AND IMPLEMENTATION OF A
SMARTER PLAN. THERE ARE SEVERAL
KEY AREAS FOR CALIFORNIA TO
FOCUS ON. IN ADDITION TO
UNDERSTANDING THE DIRECT
PHYSICAL AND MENTAL HEALTH
CONSEQUENCES OF INFECTION WITH
SARS COULD BE TO- THAT WE'RE
DISCUSSING TODAY AND FOCUSING
ON- WE ALSO NEED TO UNDERSTAND
THE LONG TERM HEALTH. ECONOMIC
AND SOCIETAL CONSEQUENCES OF
LIVING THROUGH THIS PANDEMIC.
FOR BOTH SURVIVORS AND THOSE WHO
DID NOT EXPERIENCE INFECTION. WE
NEED TO ADDRESS RESEARCH
ANALYSIS ON THE RELATIONSHIP
BETWEEN THE PANDEMIC. AND
COMMUNITY LEVEL SOCIAL
DETERMINANTS OF HEALTH. AS WELL
AS EVALUATION OF THE
EFFECTIVENESSOF ECONOMIC
EMPLOYMENT AND OTHER SOCIAL
POLICY MEASURES. ON MITIGATING
THE NEGATIVE EFFECTS OF THE
PANDEMIC ON COMMUNITIES AND
INDIVIDUALS. FINALLY THERE NEEDS
REMEMBER STRUCTURE TO SUPPORT
PUBLIC HEALTH AND ACADEMIC
COLLABORATION TO ALIGN AND
PRIORITISE APPLIED RESEARCH THAT
BENEFITS ALL CALIFORNIANS.
REQUESTING A CONCEPT PAPER TODAY
TO OUTLINE OUR INITIAL THOUGHTS
ON HOW OUR STATE SHOULD USE THIS
OPPORTUNITY TO BUILD ON AND
EXPAND OUR ACADEMIC PARTNERSHIPS
TO DEVELOP A SUSTAINABLE
INFRASTRUCTURE TO COLLABORATE
AND LEAD TO LONG TERM IMPACT
STUDY ALONG WITH OTHER RESEARCH
ANALYSIS TO HELP US LEARN FROM
THIS EXPERIENCE. AND BE BETTER
AND MORE PREPARED FOR THE NEXT
SURGES AND FUTURE PUBLIC HEALTH
EMERGENCIES AND PANDEMICS. WHILE
WE'RE CONTINUING OUR RESPONSE TO
THE ACUTE COMBAT IMPACTS OF
COVER NINETEEN. WE ARE INVOLVED
IN EFFORTS TO UNDERSTAND AND
ADDRESS THE LONG TERM IMPACTS OF
COME IN NINETEEN THE FOCUS OF
OUR HEARING TODAY. THERE WERE
MORE THAN EIGHT POINT FOUR
MILLION REPORTED CASES OF COMMON
NINETEEN IN CALIFORNIA. ANALYSTS
NINE HUNDRED CASES OF MULTI
SYSTEM INFLAMMATORY SYNDROME IN
CHILDREN INCLUDING A TAX.
BECAUSE NOT ALL CASES ARE
REPORTED THE ACTUAL NUMBER
INFECTIONS IS MUCH HIGHER. WHILE
THE PROPORTION. SAUDIS AS WAS
RECENTLY DISCUSSED IT'S LIKELY
THAT A LARGE NUMBER OF
CALIFORNIANS WILL BE AFFECTED.
WE ALSO KNOW THIS DISEASE HAS
DISPROPORTIONATELY IMPACTED SOME
POPULATIONS MAGNIFYING PRE
EXISTING DISPARITIES. WELL THE
LONG TERM BURDEN OF POST CODE
CONDITIONS ENOUGH WINDOW ON THE
COVER NINETEEN PENNOCK HAS THE
POTENTIAL TO BE AN ENORMOUS
DISABLING EVENT IN ADDITION TO
BEING A CAUSE OF ACUTE ILLNESS
AND DEATH. SO WHAT IS THE
CALIFORNIA DEPARTMENT OF HEALTH
DOING TO EDUCATE AND INTERVENE.
PREVENTION OF COURSE IS STILL
INCREDIBLY IMPORTANT STUDIES AND
FOUND A VACCINATION REMAINS THE
BEST WAY TO PREVENT INFECTION
THE STARS COULD BE TOO AND HAVE
A LITTLE ON THE POST CODE
CONDITIONS. CITY PAGES WORKING
TO PROMOTE VACCINATIONS AND
BOOSTERS ADAPTED DATE AS THE KEY
ELEMENT TO PREVENT POST CODE
CONDITIONS. AS WELL AS
RECOMMENDING MASKING THAT HAS
GOOD FRIEND FILTRATION. THOSE
ARE SMARTER PLAN LAYS OUT AFTER
SHOT THE MASKING AWARENESS IS
THE NEXT ESSENTIAL STRATEGY. TO
THAT END WE HAVE TAKEN SEVERAL
ACTIVITIES TO KEEP ASSESSING
COMMUNICATING AND COORDINATING
ON POST CODE CONDITIONS. SOME OF
THESE AWARENESS EFFORTS INCLUDE.
WORKING AND COLLABORATION WITH
UCSF AND UCLA ON THE INSPIRE
STUDY WHICH YOU'LL HEAR A LOT
MORE ABOUT DR ELMAR. A CDC
SPONSORED STUDY AND AGAIN SHE'LL
DESCRIBE THAT AND MORE DETAIL-
WE'VE BEEN COLLABORATING WITH
UCLA SINCE AUGUST OF TWENTY
TWENTY ONE AND WITH UCSF SINCE
DECEMBER TWENTY TWENTY ONE. AND
OUR PARTNERSHIP WITH ACADEMIC
INSTITUTIONS IN CALIFORNIA
INSURERS THAT A REPRESENTATIVE
SAMPLE OF THE STATE WILL BE
INCLUDED IN THE INSPIRE COVERT.
AND AGAIN YOU'LL HEAR MORE ABOUT
THAT WITH THE NEXT BIGGER. AS
FAR AS COMMUNICATION. WE'VE
DEVELOPED VAGUELY ASK QUESTIONS-
WE JUST RECENTLY LAUNCHED A WEB
PAGE AND SOCIAL MEDIA MATERIALS
TO ADDRESS CONCERNS ABOUT LONG
COVERED. IT JUST WENT LIVE ON
DECEMBER TWENTY FIFTH TWENTY
TWENTY TWO. AND WE WILL PROVIDE
THAT LINK AND I CAN ADD IT TO
THE CHILD LATER AS WELL. WE'VE
ALSO PARTNERED WITH RESOLVE TO
SAVE LIVES TO SHARE THEIR VOICE
IS ALONG COVERED CAMPAIGN. WHICH
CONTAINS FIRST HAND EXPERIENCES
OF PEOPLE STRUGGLING WITH POST
ACUTE COVERED AND IT FOCUSES
PRIMARILY ON EIGHTEEN TO TWENTY
TWO AGE GROUP. THE VIDEOS AND
SOCIAL MEDIA MESSAGES IN THIS
CAMPAIGN ARE PART OF OUR LONG
COOK COMMUNICATION TOOL KIT.
WHICH IS DESIGNED TO BE USED BY
LOCAL HEALTH PROJECTIONS AND
OTHER PARTNERS AND ENCOURAGE
AGAIN THE OTHER SPEAKERS TO TAKE
A LOOK AT THIS AS WELL AND- JUST
AS TODAY ADDING THESE PERSONAL
TESTIMONIES ARE SOME OF THE MOST
MEANINGFUL WAYS TO. TO GET THE
MESSAGE OUT TO PEOPLE. WE'RE
ALSO PLANNING OUT REACH TO
HEALTHCARE PROVIDERS AND THE
PUBLIC AS WELL AS GENERAL
EDUCATION MATERIALS WERE
PREPARING THESE AND EXPECTED TO
BE READY IN THE NEXT MONTH OR
SO. WE HAVE A DETAILED PLAN
INCLUDING INFORMATIONAL FLYERS
BROCHURES ADDITIONAL ONLINE
CONTENT AND TRAINING WEBINARS
ABOUT LONGER BUT- AND THEN FOR
OTHER INTER AGENCY COORDINATION
WERE PARTICIPATING AGAIN IN THE
UNIVERSE OF CALIFORNIA LONG CODE
WORKING GROUP. INITIALLY
CONVENED BY THE UC OFFICE OF THE
PRESIDENT TO COORDINATE POST
CODE CARE AND RESEARCH ACROSS
THE UC SYSTEM. WE'VE BEEN
INVITED TO JOIN DUE TO OUR
EXISTING RELATIONSHIP BETWEEN HE
SAID HE- AND OUR DEPARTMENT AS
WELL AS THE DEVELOPING
COLLABORATION WITH INSPIRE. SOME
OTHER POSSIBLE NEXT STEPS ARE TO
EXPAND OUR SURVEILLANCE EFFORTS-
SO WE WANT TO ADOPT A MULTI
FACETED APPROACH TO MEASURING
THE BURDEN OF POST CODE
CONDITIONS IN THE STATE. THERE
ARE DIFFERENT STRATEGIES THAT
WILL BE NEEDED TO ASSESS THE
IMPACTS AND OF THE CODE NINETEEN
PANDEMIC IN CALIFORNIA. WE COULD
ACTUALLY WORK TO DEVELOP THE
CALIFORNIA CONSENSUS CASE
DEFINITION AND CONSIDER MAKING
CLOTHES BECAUSE THE CONDITIONS
REPORTABLE DISEASE IN
CALIFORNIA. WE ALSO COULD USE A
CASE CONTROL STUDY FRAMEWORK TO
GATHER DATA ON POST CODE
CONDITIONS AND THIS WOULD ALLOW
FOR DATA COLLECTION FROM A
REPRESENTATIVE SAMPLE OF STATE
RESIDENTS WITH AND WITHOUT
HISTORY OF INFECTION. AND THEN
AS I OPEN WITH ME REALLY ALSO
WANT TO STUDY THE BROADER
SOCIETAL IMPLICATIONS OF THIS
PANDEMIC. WE ARE CONSIDERING
THAT IT JUST SAYS THAT BROADER
IMPACT AND HOPE TO LAUNCH
EFFORTS WITHIN THE NEXT SIX
MONTHS. IMPORTANT QUESTIONS TO
CONSIDER ARE THE IMPACTS ON
PERSONS WHO LOST FAMILY MEMBERS.
DEFERRAL OF CARE FOR CHRONIC
DISEASES DIFFER- HEALTH
SCREENINGS. MENTAL HEALTH
IMPACTS AND LOSS OF TIME AT
SCHOOL FOR CHILDREN. WILL
PARTNER WITH FEDERAL AND OR
ACADEMIC ORGANIZATIONS ON BROAD
SURVEYS OF PEOPLE IN CALIFORNIA.
POLICY ASSESSMENTS AND OTHER
COLLABORATIVE RESEARCH TO ASSESS
THE IMPACTS OF THIS PANDEMIC ON
CALIFORNIANS. WE'RE VERY
COGNIZANT OF SOCIETAL
IMPLICATIONS BEYOND PUBLIC
HEALTH INCLUDING THE NEED TO
CONSIDER ACCESSIBILITY
ADAPTABILITY AND ACCOMMODATIONS
AND SURVIVORS TELLING LIES. AS
IT RELATES TO EDUCATION
EMPLOYMENT AND MORE. I OPPOSED
TO CONSERVE PAPER US FOR
ADDITIONAL INPUT AND FEEDBACK BY
MARCH EIGHTEENTH AFTER WHICH
TIME A LOT OF WORK GROUP OF
PARTNERS AND FURTHER DEFINE
PRIORITY STUDIES TO- RESOURCE
AND WORK ON. AND I WAS STUCK
THERE THANK YOU VERY MUCH. THANK
YOU SO MUCH LOCKED UPON A NOTES
MOVE ONTO DR ELMAR. WITH A VIEW
TO. UCLA WELCOME. THANK YOU.
WELL I AM WAS ASKED TODAY TO
TALK ABOUT THE INSPIRE STUDY AND
I WANT TO STEP BACK AND SAY
THAT- ONE OF THE BENEFITS OF THE
PANDEMIC IS IT'S BRINGING US ALL
TOGETHER IT'S BRINGING
LEGISLATORS AND PATIENTS AND
FAMILY MEMBERS AND CLINICIANS
AND SCIENTISTS WE ALL HAVE A
COMMON GOAL AND WE WANT TO WORK
ON THIS TOGETHER AND I THINK BY
JOINING FORCES AS UCLA HAS DONE
WITH THE CALIFORNIA DEPARTMENT
OF PUBLIC HEALTH IN OUR ONE
STUDY. YOU KNOW I THINK TOGETHER
THE OUTCOME WILL BE BETTER SO IT
HAS BEEN A PLEASURE
COLLABORATING WITH THE STATE I
WILL REFER EVERYONE TO OUR
WEBSITE FOR UCLA STUDY IT'S
INSPIRE LIKE TO BREED I. N. S.
P. I. R. E. WE'RE RECRUITING OF
QUITE A FEW THOUSAND PATIENTS
AND WE HOPE TO HAVE INFORMATION
THAT WE CAN SHARE WITH THE STATE
IN THE NEXT FEW MONTHS. WE ARE
RECRUITING PATIENTS AT THE TIME
OF KOBE TESTING AND A UNIQUE
FEATURE OF THE STUDY IS THAT WE
HAVE WELCOME AND POSITIVE AND
KOBE NEGATIVE INDIVIDUALS SO WE
HAVE A CONTROL. I WAS ASKED. IN
THINKING ABOUT WHAT YOU WANTED
ME TO SAY TODAY I WAS ASKED TO
TALK ABOUT. WHAT WE KNOW WHATWE
DON'T KNOW AND WHAT MY
SUGGESTIONS WOULD BE. SO TO
START WITH WHAT WE KNOW. WE NOW
NO LONGER EXISTS AND THIS IS A
MONUMENTAL STEP FORWARD BECAUSE
TRULY A YEAR AGO. PHYSICIANS AND
SCIENTISTS DIDN'T BELIEVE IN
SUCH AN ENTITY AND THIS IS
IMPORTANT. AND THIS VALIDATES
THE REALLY- HEARTFELT COMMENTS
BY OUR THREE EARLIER SPEAKERS.
THEN THE SECOND TOPIC IS WHAT WE
DO NOT KNOW AND WHAT WE NEED TO
STUDY- ALMOST EVERYTHING THERE
IS BASICALLY. AN INFORMATION
VOID WE DO NOT KNOW WHAT ARE THE
MAIN FEATURES OF LONG CALLED IT
WE DON'T KNOW HOW COMMON IT IS.
I KNOW YOU WERE ASKING EARLIER
SPEAKERS WHAT THEIR ESTIMATE IS
WHAT PERCENTAGE IT MIGHT BE EVEN
IF IT'S ONLY 5% OF PEOPLE THAT
GET CODE HAVE LONG CALLED IT
THAT IS AN ASTRONOMICALLY LARGE
AND IMPACTFUL NUMBER- SO THE
PERCENTAGES THAT ARE BEING
REPORTED 510% TO FIFTY PERCENT-
WE DON'T KNOW. WE DON'T KNOW IF
IN THE FUTURE. TEN YEARS FROM
NOW. WE MAY SEE LONG TERM
EFFECTS FROM CODED THAT WE HAD
EVEN ANTICIPATED THINK ABOUT
SHINGLES BUT MANY OF US DEAL
WITH DECADES AFTER- WE- WE DON'T
KNOW HOW TO DIAGNOSE LUNG KOBE.
NOW THIS MAY SEEM STRANGE TO
SOME IN THE AUDIENCE WE HAVE A
C. D. C. IN A W. H. O. CASE
SURVEILLANCE CRITERIA AND THESE
ARE USEFUL WHEN YOU'RE STUDYING
THINGS OUT BEFORE WE KNEW WHAT
CAUSED AIDS. AND WE HAD CASE
CRITERIAS BEFORE WE KNEW HOW TO
DIAGNOSE LEGIONNAIRES DISEASE OR
LYME DISEASE WOULD HAVE CASE
CRITERIAS. AND SURVEILLANCE THAT
WE THEN WOULD STUDY BUT THAT IS
THAT IS NOT THE SAME THING IS
WHEN I'M A DOCTOR I'M SEEING
PATIENTS IN CLINIC AND I WANT TO
KNOW HOW DO I DIAGNOSE I DON'T
HAVE A BLOOD TEST I DON'T HAVE
AN X. RAY. THAT WILL
DEFINITIVELY TELL ME THAT THIS
IS DUE. TO THE EARLY KOBE
DISEASE AND WE NEED WE NEED
HELP- WE DON'T KNOW WHAT THE
RISK FACTORS ARE. FOR THE
DEVELOPMENT OF LONG COATED. AND
WE DON'T KNOW HOW TO TREAT.
THERE'S BASICALLY THIS
INFORMATION VOID IT'S KIND OF
LIKE A PERFECT STORM PATIENTS
AND THEIR FAMILIES ARE ANXIOUS
AND SUFFERING THERE'S NOT
ADEQUATE SUPPORT FOR HEALTH CARE
PROVIDERS IN THE HEALTH SYSTEM
WE WOULD LIKE TO SEE MORE
PATIENTS WE DON'T HAVE CAPACITY
AND WE NEED TO SUPPORT
COLLECTION OF HIGHER QUALITY
EVIDENCE. IN ADDITION TO BEING A
PHYSICIAN AND SEEING PATIENTS IN
CLINIC I'M ALSO AN
EPIDEMIOLOGIST AND NOW THAT WE
HAVE THE PANDEMIC PEOPLE HAVE
HEARD OF THAT WORD AN
EPIDEMIOLOGIST I BASICALLY LIKE
TO STUDY HOW TO DIAGNOSE AND
TREAT DISEASES AND HOW TO DO A
BETTER JOB. AND I HAVE TO TELL
YOU S. GENEALOGIST. THIRTY ONE
KOBE IS NOT EASY THERE ARE SO
MANY REASONS- IT IS UNIQUELY
CHALLENGING- ONE REASON HAS TO
DO WITH ALL THE WASTE IT HAS
CHANGED OVER TIME. EARLY ON WE
COULDN'T EVEN DIAGNOSED WE DID
HAVE DIAGNOSTIC CAPABILITIES
THEN THERE BEEN THESE NEW
ADDITIONS OF DIFFERENT
TREATMENTS THAT HAVE COME INTO
PLAY WE DON'T KNOW HOW THOSE
WILL AFFECT SUBSEQUENT LONG
CORRECT. THEN WE HAVE NEW
VACCINES NOW WE HAVE DIFFERENT
VARIANTS AND SO WE NEED TO LEARN
HOW THESE EVOLVING CHANGES OVER
TIME WE'RE GOING TO IMPACT LONG
KOBE. I WILL BE FOR THE AUDIENCE
TO A PAPER THAT I PUBLISHED
YESTERDAY ACTUALLY IN THE ANNALS
OF INTERNAL MEDICINE IT'S ONLY
IT'S SHORT ONLY TWO PAGES LONG
AND IT DESCRIBES SOME OF THE
CHALLENGES THAT SCIENTISTS ARE
GONNA HAVE AND WE NEED TO PAY
ATTENTION AND BE CAREFUL AND
STUDIES. I AM WORRIED THAT SOME
OF THE EARLY STUDIES HAVE BEEN
LOW QUALITY AND I THINK WE NEED
TO DO A BETTER JOB PATIENTS TO
SURVIVE. AND IT HAS BEEN
MENTIONED BY OTHERS DISPARITIES
IN HEALTH AND HEALTH CARE. THE
PANDEMIC IS MAKING IT WORSE AND
I'M VERY CONCERNED AS A POSITION
. AND AS A SCIENTIST- THE BURDEN
OF THE PANDEMIC INCLUDING HIGHER
INFECTION RATES AND HIGHER
HOSPITALIZATION RATES IT HAS
FALLEN DISPROPORTIONATELY ON
INDIVIDUALS WHO ARE ALREADY
VULNERABLE. TO INEQUITIES IN
HEALTH AND HEALTH CARE YOU KNOW
SO WE HAVE LONG KNOWN
DISPARITIES AND I THINK THAT NEW
INEQUITIES IN BOTH THE
DEVELOPMENT THAT PRESENTATION
AND DOCUMENTATION OF LONG
CORBETT I THINK IT'S GONNA BE
ECCENTRIC PROBLEMS- THE
INVOLVING LONG KOBE CASE
DEFINITION IT'S GOING TO BE
INFLUENCED BY. PATIENTS THAT
WE'RE SEEING IN CLINICS. NOT
EVERYBODY CAN GET IN THE CLINICS
IT'S GOING TO BE INFLUENCED BY
HIS PARTICIPATING IN RESEARCH.
AND BECAUSE MARGINALIZED GROUPS
OFTEN RECEIVE LESS TIMELY
DIAGNOSIS SO THEY OFTEN HAVE
THEIR SYMPTOMS UNRECOGNIZED OR
UNDOCUMENTED. I'M WORRIED THAT
LONG CODE MAYBE UNDER DESCRIBED
IN THOSE WHO ARE ALREADY
VULNERABLE. I'LL CLOSE WITH
THREE PRACTICAL SUGGESTIONS FOR
OUR STATE FIRST IS REALLY. NOT
SELF EVIDENT OUR BEST DEFENSE IN
PREVENTING CODE IS WITH
VACCINATIONS AND SO I ENCOURAGE
US TO CONTINUE OUR REALLY
IMPRESSIVE STATEWIDE EDUCATION
AND OUTREACH EFFORTS. MY SECOND
SUGGESTION IS- REALLY SIMPLE. WE
NEED SMOKE DETECTORS. MILLIONS
OF PEOPLE IN THE US CANNOT SMELL
NOW BECAUSE THEY'VE HAD CALLED
IT THIS IS WAS ONE OF THE FIRST
LONG COALBED. YOU KNOW SYMPTOMS
THAT BECAME APPARENT. YOU KNOW
I'VE I'VE DIAGNOSED KOBE IN
PATIENTS THAT. CALL ME UP
BECAUSE THEY SAID THEY HAD A CUP
OF COFFEE AND TEY COULDN'T
SMELL THE CAFFEINE IN THE COFFEE
AND THEY WONDERED WHY AND I SAID
GO GET TESTED FOR COLD AND THEY
HAD KOPEN. AND NOW A YEAR LATER
THEY STILL CAN'T SMELL- IN
ADDITION TO HAVING A REDUCED YOU
KNOW QUALITY OF LIFE YOUR SENSE
OF TASTE YOUR ENJOYMENT YOU
CAN'T SMELL THE FLOWERS. YOU
CAN'T SMELL FIRES AND SO A
SIMPLE SUGGESTION IS- RAMPING UP
OUR EDUCATIONAL EFFORTS-
REGARDING SMOKE DETECTORS IT'S
ESTIMATED THAT THERE ARE
MILLIONS OF PEOPLE IN THE U. S.
NOW THAT I HAVE REDUCED. SENSE
OF SMELL THIS AND KNOWS ME UP.
THE GOOD NEWS IS THAT 95% OF
PEOPLE THAT HAVE IT ONLY LASTS
FOR A FEW WEEKS TO MAYBE A FEW
MONTHS. BUT IT'S NOT THE 225%
HOW PERSISTENT AND WE DON'T KNOW
HOW LONG BUT I HAVE SOME
PATIENCE IT. IT'S DEFINITELY
PERSISTENT FOR TWO YEARS. NOT MY
FINAL SUGGESTION WILL BE.
RESONATING WITH EARLIER COMMENTS
IT HAS TO DO WITH THE CENTERS OF
EXCELLENCE. FOR MANY YEARS I
HAVE WORKED IN DOING RESEARCH IN
CANCER AND HIV AND SEEING
PATIENTS WITH CANCER AND HIV. IN
THE U. S. WE PROVIDE OUTSTANDING
QUALITY OF CARE AND WE HAVE
AMAZING STRIDES AND
ACCOMPLISHMENTS THAT WE'VE MADE
IN RESEARCH ENDEAVORS. BUT
THAT'S BECAUSE THESE ARE USUALLY
DONE ON THE BACKBONE OF.
COMPREHENSIVE CANCER CENTERS OR
CENTERS OF EXCELLENCE FOR HIV
CARE. WE WE'RE UNDERSTAFFED AND
UNDER POWERED YOU KNOW I THINK A
LOT OF THE LONG COLD MEDICATIONS
THEY NEED TO GET FUNNELED INTO
PRIMARY CARE TO START WITH AND
THAT IS BECAUSE THERE'S SUCH A
WIDE RANGE OF SYMPTOMS THAT ARE
ASSOCIATED WITH LONG COAT AND
THEN WE NEED CARE COORDINATORS
AT THE CENTERS THAT CAN HELP YOU
NAVIGATE THROUGH ALL OF THE MANY
SOME SPECIALISTS FROM
CARDIOLOGISTS TO A NEUROLOGIST
WE DIDN'T NEED SUPPORT FOR
PHYSICAL THERAPISTS
REHABILITATION AT THEIR BEST
THEN WE NEED SOCIAL WORKERS TO
HELP THESE PEOPLE WITH THE
QUALITY OF LIFE AND FINANCIAL
ISSUES. I THINK THE UNIVERSITY
OF CALIFORNIA HEALTH SYSTEM IS
POISED TO TAKE ON SUCH A ROLE.
THE UC SYSTEM IT'S REALLY A
CROWN JEWEL IN OUR STATE IT'S
LARGE IT'S MASSIVE. AND THE
HEALTH SYSTEM IS ASSOCIATED WITH
ACADEMIC POWERHOUSES FOR
RESEARCH THE SCHOOLS OF MEDICINE
IN THE SCHOOLS OF PUBLIC HEALTH-
THIS. NETWORK IS UNLIKE ANY
OTHER IN THE COUNTRY. SO I WOULD
REALLY WANT TO SECOND OR THIRD
THIS IDEA OF CENTERS OF
EXCELLENCE. I SHOULD SAY THOUGH
THAT- I HEARD SOME OF THE
PATIENTS TALK ABOUT HOW THEY
COULDN'T GET IN TO SEE ANYONE.
THAT IS A REAL ISSUE NOW AND
IT'S ONLY GONNA GET WORSE. MANY
OF THE POSITIONS ARE
VOLUNTEERING THEIR TIME TRYING
TO HELP OUT AND SO- I REALLY
THINK THAT GOING FORWARD ALL
WORKING TOGETHER- I'M HOPING
THAT WE CAN IMPROVE PRESS. I
WANNA THANK EVERYONE FOR
BRINGING THE TOPIC OF LONG CODED
TO THE FOREFRONT WE HAVE A LONG
HAUL AHEAD OF US AND I
APPRECIATE EVERYONE'S SUPPORT
AND ENCOURAGEMENT THANK YOU.
THANK YOU SO MUCH- DR- MORE-
QUESTIONS FROM COMMITTEE
MEMBERS- CENTER NEWMAN. THANK
YOU MR CHAIR SHOW PROFESSIONAL
FIRST THANK YOU TO BOTH OF THE
PANELISTS SAID DR POT IT'S BEEN
A YOU KNOW JUST A PLEASURE
WORKING WITH YOU- AS ONE OF THE
LEADERS LET'S SAY CORNER A GROUP
OF LAST YEAR- AND THANK YOU FOR
YOUR PARTICIPATION TODAY AND
ALSO OUR- OUR COMPLIMENTS WE'VE
ALL BEEN COMPANY HERE ON THIS
ONE FOR GLASSES THAT MATCH YOUR
BACKGROUND SO WELL. AND DR- MORE
I- YOU KNOW TO YOUR POINT ABOUT
LOSING ONE'S SENSE OF TASTE I
ACTUALLY- TECH COVE AND I LOST
MY SENSE OF TASTE OFFERED A
COUPLE OF DAYS AND IT WAS IT
IT'S HARD TO APPRECIATE WHAT
YOU'VE BEEN THROUGH IT JUST HOW.
IMPACTFUL THAT IS IT WAS A
BUILDING ON THAT I'D LIKE TO ASK
BOTH OF YOU TO SPEAK A LITTLE
BIT ABOUT THE MENTAL HEALTH
DIMENSIONS. OF LONG COVE IN
PARTICULAR AS WE AS WE THINK
ABOUT- THE YOU KNOW THE WAYS IN
WHICH WE SHOULD INTEGRATE AND
OORDINATE MENTAL HEALTH
SERVICES IN ADDITION TO SOME OF
THE- YOU KNOW THE OTHER
PHYSICAL. NEEDS THAT HAVE BEEN
ADDRESSED TODAY SHOULD BE
INTEREST IN BOTH YOUR COMMENTS
HERE. SURE I'LL START AND JUST
SAY YOU KNOW ABSOLUTELY I THINK
AND SOME OF THEM BECAUSE HERE'S
HOW MULTI DISCIPLINARY. THIS IS
GOING TO NEED TO BE NOT ONLY FOR
THE HEALTH AND MENTAL HEALTH
THAT BUT ALL THE OTHER IMPACTS
AS WELL IS THAT THERE ARE A LOT
OF EFFORTS TO IMPROVE OVERALL
INTEGRATION OF MENTAL HEALTH
AND- AND MEDICAL. HEALTH AND I
THINK AS A STARTER HOME OR
MENTION I THINK WE'RE JUST
SCRATCHING THE SURFACE ON A LOT
OF THE IMPACTS OF. LONG HOOD AND
OTHER IMPACTS OF CODE IN
GENERAL- SO. THINK AGAIN ARE
INTENDED TO BE VERY MULTI
DISCIPLINARY- ACROSS DIFFERENT
HEALTH DISCIPLINES AS WELL AS-
OTHER- SOCIAL SERVICES OTHER
POLICY MAKERS AT CETERA. THE
PANDEMIC ITSELF HAS LED TO AN
INCREASE AND MENTAL HEALTH
ISSUES CERTAINLY MADE A LOT OF
PEOPLE DEPRESSED AND ANXIOUS- I
THINK THAT THIS OBVIOUSLY WILL
NEED TO BE A KEY COMPONENT OF
THE CENTERS AND SUPPORT- VOICES
OF THE PATIENTS NEED TO BE HEARD
WITH COMPASSION AND THEY NEED
ACCESS TO INFORMATION AND ACCESS
TO CLINICAL TRIALS AND I THINK
IF OF OUR COMMUNITY HEARS THAT
WE WANNA ALL WORK TOGETHER YOU
KNOW WILL IT WILL BE BETTER IN
THE END- IF YOU THINK ABOUT
DEPRESSION WE ALSO HAVE A
PROBLEM WITH THE HEALTH CARE
WORKERS. YOU KNOW THEY'RE TIRED
IT'S BEEN A LONG TWO YEARS FOR
EVERYONE. I APPRECIATE THAT
THANK YOU MISTER CHAIR THANK.
EARLIER THANK YOU SENATOR PAN
THANK YOU TO BOTH OF THE DOCTORS
FOR THEIR EXPERTISE A DOCTOR
ELMORE I HAD A QUESTION WHEN YOU
TALK ABOUT THAT WE DON'T KNOW
THE MAIN FEATURES OF LONG COVE
IT HOW ARE WE GOING ABOUT
FIGURING OUT WHAT THOSE ARE-
THIS IS GOING TO SEEM OVERLY
SIMPLISTIC I'M NOT A DOCTOR DO
IS PEOPLE COME IN DO YOU ASK
THEM DID YOU HAVE COVERED AND
THEN MAYBE IT'S KIND OF LIKE A
CHECKLIST OF WHAT THEY HAVE AND
DON'T HAVE THE DO YOU CROSS
REFERENCE THAT WITH WHAT OTHER
FOLKS HAVE TO HOPEFULLY COME UP
WITH SOME DATA. IN THE FUTURE
THAT CAN HELP MORE EASILY
DIAGNOSED LONG COVERED. THAT'S A
GOOD QUESTION- I SUSPECT IN THE
END THERE ARE GOING TO BE MANY
DIFFERENT TYPES OF LONG COVE IT
. SOME PATIENTS MAY ONLY HAVE A
NOSE MIA THE INABILITY TO SMELL
BUT THAT IS VERY IMPACTFUL.
OTHERS MAY JUST HAVE NEUROLOGIC
SOME MAY HAVE CARDIAC SOMEBODY
JUST TEMPERAMENTAL LOGIC. AND IN
THE STUDIES FOR EXAMPLE IN THE
INSPIRE STUDY WE ARE HAVING
PATIENTS FILL OUT SURVEYS REALLY
LONG LIST OF SYMPTOMS AND THEY
CHECK OFF WAT SYMPTOMS THEY
HAVE AND THEN WE'RE FOLLOWING
THEM FORWARD EVERY THREE MONTHS
TO FIND OUT ARE THOSE SYMPTOMS
STILL PRESENT ARE THEY GOING
AWAY FOR THE DEVELOPING NEW
SYMPTOMS AND WHEN YOU ARE ABLE
AND HAVE THOUSANDS OF PATIENTS
PARTICIPATING IN HELPING YOU IN
THIS STUDY. YOU THEN CAN COMPARE
THE RATE OF SYMPTOMS IN THOSE
THAT HAD COAL BED TO THE RATE
AND THOSE THAT WERE COMMON
NEGATIVE WE'RE RECRUITING
PATIENTS AT THE TIME WHERE THERE
THEY THINK THEY'RE SYMPTOMATIC
WITH AN ACUTE CO INFECTION YOU
KNOW THERE THEY'VE GOT A FEVER A
COUGH DON'T FEEL WELL- AND THEN
WE TAKE THEM REGARDLESS OF
WHETHER THE COMMON POSITIVE OR
NEGATIVE AND SO THIS WAY YOU
HAVE CONTROLS AND THERE'S A
CERTAIN LOW RATE BACKGROUND A
SMALL NUMBER OF PEOPLE HAVE
HEADACHES EXCEPT HER BUT WHEN
YOU CAN COMPARE THE RATE. GOING
FORWARD OVER MONTHS TO A. YEAR
OR TWO. AND YOU SEE. FIVE
SYMPTOM POP OUT AS BEING
STATISTICALLY SIGNIFICANT AND
MUCH MORE COMMON IN PEOPLE THAT
HAD KOBE. THAT'S HOW YOU GET THE
ANSWER. BUT YOU'RE RIGHT IT'S
VERY CONFUSING- AND
SCIENTIFICALLY IT'S A MESS ALL
OF THE PUBLICATIONS ARE USING
DIFFERENT DEFINITIONS- AND SO
IT'S HARD TO COMPARE IT'S LIKE
YOU'RE COMPARING APPLES TO
ORANGES. THANK YOU VERY MUCH.
THANK YOU SIR RUBIO. THANK YOU
MISTER CHAIR- I HAVE A SIMILAR
QUESTION TO THAT OF A MY
COLLEAGUE THAT JUST HAS TO
QUESTION IT JUST SEEMS THAT THE
INFORMATION IS ALL OVER THE
PLACE AND I RIGHTFULLY SO THIS
IS SOMETHING NEW AND EVERYONE'S
DEALING WITH DIFFERENT THINGS
BUT JUST BASED ON THE STORIES
THAT STACYAND ANGELA AND
JENNIFER SHARED. OB SORRY
THERE'S A LOT THAT WE'RE
LEARNING FROM THESE CASES AND IN
PARTICULAR THE INS FIRE STUDY
I'M JUST CURIOUS HOW ARE WE
GETTING INFORMATION DOWN TO
LOCAL HEALTH DEPARTMENTS I KNOW
THAT YOU HAVE THE INFORMATION
AND YOU'RE LEARNING AS YOU GO
BUT I'M JUST STILL TRYING TO
FIGURE OUT HOW DO WE FIND A
CENTRALIZED PLACE. WHERE ALL
THIS INFORMATION IS READILY
AVAILABLE FOR EVERYONE YOU KNOW
AT THE LOCAL LEVEL- SO THEY CAN
CONTINUE TO SORT OF MONITOR IN
THEIR OWN WAY IS THERE
CONNECTIONS CAN YOU HELP ME
UNDERSTAND HOW ARE WE CONNECTING
ALL THE PIECES FROM LOCAL I.
HEALTH DEPARTMENTS TO OUR STATE
TO THE STUDY THAT INSPIRE IS
DOING AND ALL THE STORIES THAT
WE'RE HEARING FROM. FROM OUR
PATIENTS HOW ARE WE MAKING SURE
THAT EVERYONE'S HEARING THE SAME
THING INSTEAD OF EVERYONE AND I
THINK I HEARD YOU SAY IT'S A
MESS WE'RE ALL OVER THE PLACE
THAT WAS SOMETHING YOU SAID HOW
DO WE BRING IT TOGETHER I WANT
YOU TO HELP US UNDERSTAND OR
HELP YOU HOW DO WE BRING IT
TOGETHER SO EVERYONE HAS THE
SAME INFORMATION. YEAH I CAN.
TAKE DOWN AN EARLY START I
THINK- YOU KNOW CERTAINLY AT THE
STATE HEALTH DEPARTMENT WE WORK
VERY CLOSELY WITH OUR LOCAL
VETERANS WE ACTUALLY JUST WITHIN
A COUPLE- ACTUALLY RECENTLY-
PRESENTATIONS ARE LOCAL HEALTH
DEPARTMENTS ABOUT KIND OF THE
WORK WE'RE DOING ESPECIALLY THIS
NEW OUT REACH EFFORTS- AROUND
THE PUBLIC COMMUNICATIONS AND
MORE INFORMATION- AND THEN AS
THE BALLS AND- AND ONE THING I
MENTIONED JUST TO. TO REITERATE
AND IT WILL COURSE BE TALKING TO
YOU KNOW IF THE CDC IS GONNA
COME UP WITH A COMMON CASE
DEFINITION OR NOT. THERE'S BEEN
A LOT OF DISCUSSION TODAY ABOUT
THE CHALLENGES OF THAT BUT- IF
WE DO DO THAT EITHER NATIONALLY
OR OR AT THE STATE LEVEL WE CAN.
WORK TO COLLECT THAT DATA- MORE
COMPREHENSIVELY AT A MINIMUM
WITHIN CALIFORNIA AND THEN WORK
WITH OUR OUR PARTNERS TO KIND OF
RECEPTIONIST US THE OTHER THING
THAT ACTUALLY WE HAVE. JUST
LAUNCHED RECENTLY AS WELL IS- IN
KIND OF OUR STATEWIDE SYSTEM
THAT HAS- CASES AND CONTACTS AND
ACTUALLY THERE ARE WAYS TO KIND
OF SEND AUTOMATED SERVICE. ABOUT
POST CODE SYMPTOMS SO THAT IS
SOMETHING THAT HAS BEEN
LAUNCHED- WE'RE JUST NOW
STARTING TO. INCREASE
UTILIZATION OF IT BUT IT'S
ANOTHER WAY WE CAN TRY TO HAVE
MORE CONSISTENT DATA COLLECTION
ACROSS THE STATE. AND THEN OF
COURSE YOU KNOW AS MENTIONED
EARLIER BUT REALLY THE OTHER
KIND OF. LINK THAT NEEDS TO BE
THERE IS HEALTH CARE PROVIDERS
ARE SEEING PATIENTS AND REALLY
HAVING ALL OF THAT- SORT OF ALL
OF US. REALLY QUICK MEETING
ORGANIZED. TOGETHER THANKS. I
CAN TELL TO THAT THAT THE-
UNIVERSITY OF CALIFORNIA OFFICE
OF THE PRESIDENT- THEY HAVE
CONVENE TO HEALTHCARE PROVIDERS
FROM. ALL OF THE UNIVERSITY OF
CALIFORNIA SCHOOL OF MEDICINE.
AND WE HAVE REGULAR MEETINGS WE
ARE SHARING. BEST PRACTICES FOR
AT LEAST WHAT WE THINK IS THE
BEST PRACTICE- WITH THIS VOID OF
INFORMATION AND WE DISTRIBUTE
THE INFORMATION TO ALL OF THE
ACADEMIC HEALTH CENTERS ON FOR
EVERY ORGAN SYSTEM LIKE FOR
SOMEONE THAT COMES IN WITH
NEUROLOGIC SYMPTOMS OR SOMEONE
THAT COMES IN WITH CARDIAC HEART
RATE INSTABILITY OR SOMEONE THAT
COMES IN WITH. CHANGE IN THEIR
TOES COLORS TO PURPLE WHAT IS
THE SUGGESTED STANDARDIZED
EVALUATION AND WHAT ARE SOME
EARLY IDEAS FOR TREATMENT
OPTIONS THAT MIGHT HELP AND SO
WE'RE TRYING TO SHARE
INFORMATION AND WE'VE EVEN HAD
DISCUSSIONS ON HOW WE- AS
EDUCATIONAL INSTITUTIONS WE HAVE
A COMMITMENT. TO HELP EDUCATE
ALL OF THE MANY OTHER PROVIDERS
IN OUR STATE WHO DON'T HAVE
ACCESS TO THE SAME INFORMATION
WE HAVE- I KNOW- JUST A WEEK AGO
I WAS GIVING A TALK TO ALL OF
THE MENTAL HEALTH CARE
PROVIDERS. IN THE DEPARTMENT OF
MENTAL HEALTH IN LA COUNTY- I
GAVE THAT TALK WITH THE
PROFESSOR OF NEUROLOGY AND A
PROFESSOR OF PSYCHIATRY AT UCLA
SO WE'RE WE'RE SLOWLY TRYING TO
GET THE WORD OUT BUT I THINK
YOUR QUESTION IS SOMETHING THAT
WE NEED TO CONSIDER FURTHER.
THANK YOU. THANKS THE OTHER
QUESTIONS FROM COMMITTEE MEMBERS
. I JUST HAVE- MAYBE ONE VERY
BRIEF QUESTION AND THAT WE ARE
SORT OF COMING CLOSE TO THE END
OF OUR TIME SO I WANNA BE SURE
WE GET OUR LAST ENOUGH TIME FOR
LAST PANEL HERE BUT- SO ON A
PRIMARY CARE PHYSICIAN I MEAN IT
WAS IT YOU SEE- UC DAVIS. AND I
CAN IMAGINE THE PRIMARY CARE
DOCTORS LISTENING TO THIS AND IF
WE ARE AGAIN VERY SYMPATHETIC TO
ALL THE PATIENTS YOU KNOW WHEN
THE EXPERTS ARE SAYING WHAT'S
STILL A MASS FOR THE DEFINITION
IS AND THEN MEANTIME WE'RE
EXPECTED TO FILL OUT PAPERWORK
CERTIFYING AT THE RISK OF UP
ALLOW LICENSE IT'S AT AROUND AT
DOWN SOMEONE'S. NEEDS
QUALIFICATION FOR DISABILITY
ETCETERA AND STILL SORT OF VAGUE
OUT THERE WHAT KIND OF SUPPORT
OR WE CAN PROVIDE A TICKET FROM
A CHAIR POSITIONS TO BE ABLE TO
AND IT MEANS THAT THEY NEED AN
ACCESS TO MULTI DISPLAY TEAM ALL
RIGHT THEY CAN TRY TO PUT ONE
TOGETHER THROUGH REFERRALS BUT-
WHICH I NEED TO GIVEN THE
NUMBERS THAT'S HAPPENING WITH
SOMETHING MORE SYSTEMATIC. SO
THAT THE PRIMARY CARE PHYSICIANS
COULD HAVE MORE CONFIDENCE THAT
ACTUALLY CAN HELP THE PATIENTS
MORE AS WELL I THINK YOU KNOW
WE'RE NOT TRYING TO GET KEEP
WE'RE JUST TRYING TO FIGUREOUT
BUT OFTEN TIMES THE BURDEN OF
QUOTE UNQUOTE CERTIFYING SUPPORT
FALLS ON HIS PRIMARY CARE
PHYSICIANS WHO- YOU KNOW WHAT TO
SAY YES BUT THEN AT THE SAME
TIME. THEY FEEL LIKE THAT NO I
CAN'T DO THE WHOLE VALUATION
MYSELF AND ESPECIALLY IF THE
EXPERTS THAT WE WERE HEARING
FROM THEIR LIKE IT'S ALL OVER
THE MAP WELL HOW'S THAT
FRONTLINE PRIMARY CARE DOCTORS
TO FIGURE OUT ON THEIR OWN
RIGHT- SO. MAYBE I GUESS THE
QUESTION IS THAT OUR SUGGESTION
IS THAT THE STATE SET UP MULTI
DISCIPLINARY EVALUATION TEAMS
THAT PRIMARY CARE DOCTOR CAN
REFER TO WHETHER TO USE YOUR
SOMETHING BUT IT'S GONNA AND WE
HAVE TO HAVE A LOT MORE CAPACITY
WE CAN'T HAVE LIKE OH BY THE WAY
AND EXPLAIN IN SIX MONTHS. JUST
I GUESS IN THE SAME WAY WE HAVE
FOR EXAMPLE IN THE D. YOU CAN I
CAN REFER SOMEONE TO REGIONAL
CENTER YOU KNOW I MAY MAKE AN
INITIAL DIAGNOSIS I THINK THE
CHILD HAS AUTISM SIMILAR
DEVELOPED A DELAY BUT ACTUALLY
THEY CAN DO AN EVALUATION AND
START BEGINNING SERVICES SO- I
CAN YOU CAN USE IS THAT MAYBE
OUR ASSETS THAT HAVE- DUCK POND.
IS. THERE SOME CONSIDERATION OF
THAT- GOING ON IN AND IN SOME
THIS. OF AT ST I WOULDN'T SAY
SIT C. P. H. BUT AT. A YOU AWARE
DISCUSSIONS. THAT NATURE. I'M
NOT AWARE YET OF ANY OF THOSE
LIKE TAKE THAT BECAUSE BACK IN.
HELLO OKAY ALL RIGHT AND THEN I
DON'T KNOW WHAT YOU SEE- I MEAN
AGAIN I KNOW YOU HAVE REFERRED
FROM UCLA ETCETERA BUT- I MEAN
IS THERE SOME THOUGHT ABOUT
BASICALLY BUT DOES MEAN OPENING
THE DOORS YOU HAVE A LOT OF
PRIMARY CARE DOCTORS OUT THERE
SAYING I'M TRYING TO STRUGGLE I
HAVE A PATIENT WHO SEEMS LIKE
THEY HAVE LONG COVETED. YOU KNOW
THEY DON'T HAVE THAT TESTS ARE
NEGATIVE A LOT CETERA BUT WHO
CAN I SEND THEM TO GET A MORE
DEFINITIVE VALUATION AND I AM
ABLE TO DO IN MY OFFICE. WELL WE
HAVE A- TSUNAMI OF PATIENTS
THAT. WANT TO GET IN AND THAT
WILL BE COMING. AND RIGHT- IT
WOULD BE HELPFUL IF IN THE STATE
THERE WAS. A BETTER SUPPORT FOR
THIS. THANK YOU. OKAY SO SOUNDS
LIKE AN IDEA I MEAN I REALIZE
THAT DOZENS OF OLD WORKFORCE
ISSUES BUT AGAIN YOU KNOW HOW
DEEPLY SURE WE ASSURE ACCESS. TO
SERVICES AT CETERA AND HOW TO
PROVIDE SUPPORT. TO PEOPLE SO
THAT WE CAN BE SURE AT LEAST. WE
CAN GET A QUALIFIED FOR EXISTING
SERVICES OBVIOUSLY AS WELL AS
DEVELOPING ADDITIONAL SERVICES
ARE NECESSARY. ALL RIGHT- SEE NO
THE QUESTION LOOKS AT THANK YOU
SO VERY MUCH BOTH OF YOU FOR
YOUR PRESENTATION LOOKING
FORWARD TO FOLLOWING UP AND
AGAIN WE CAN ALSO APPRECIATE THE
PRESENTATION ON TO INSPIRE
REGISTRY AS WELL. CAN BE
EXTREMELY VALUABLE TO ALL OF US.
THANK YOU. ALL RIGHT WE'LL MOVE
ON TO OUR LAST PANEL ON LONG
TERM COSTS AND CONSEQUENCES IN
RIPLEY'S WE HAVE. DR GREG IT IS
CONFIRMED HIS MEDICAL DIRECTOR
AT MAYO THE MAYO CLINIC COVERT
ACTIVITY REHABILITATION PROGRAM
AND THEN ALSO A DOCTOR JENNIFER
KAMINSKI WHOSE- DEPUTY PUBLIC
HEALTH OFFICER RIVERSIDE COUNTY
THE PRIME PUBLIC HEALTH IS ALSO
PUBLISHED I'D DONE NUMEROUS-
PAPERS AS WELL ARTICLES AROUND
THE LONG TERM COST CONSEQUENCES
A CODED AND SO LET'S BEGIN WITH
THAT DOCTOR FINNISH CULTURAL-
FROM THE MAYO CLINIC THANK YOU
SO MUCH FOR BEING HERE AND-
SPEAKING TO US IN CALIFORNIA.
READ BY MEMBERS OF THE SENATE
COLLEAGUES AND PATIENTS THANK
YOU FOR SHARING PART OF YOUR DAY
WITH ME I'M REALLY ONORED TO BE
HERE. SO AGAIN MY NAME IS A
GREAT MINISTER SHARON AND I'M AN
OCCUPATIONAL AND AEROSPACE
MEDICINE PHYSICIAN AT THE MAYO
CLINIC IN ROCHESTER MINNESOTA.
ALSO THE MEDICAL DIRECTOR FOR
OUR CALL THAT ACTIVITY
REHABILITATION PROGRAM. AND WE
HAD THE PEASURE TO VISIT WITH
PATIENTS SUFFERING FROM LONG
HAUL COVE IT SINCE ABOUT MAY OF
TWO THOUSAND TWENTY. AND I
WANTED TO SHARE SOME INSIGHTS
INTO LOCAL MADE IT FROM MY
PERSPECTIVE. AS AN OCCUPATIONAL
MEDICINE PHYSICIAN. WE'VE HEARD
TODAY FROM MANY COLLEAGUES AND
EXPERTS AND MOST IMPORTANTLY THE
PATIENTS ABOUT THE KINDS OF
SYMPTOMS. THAT PEOPLE EXPERIENCE
WITH LONG HAUL CODED. IN THEIR
STORIES ARE ACCURATE WITH WHAT
WE HAVE SEEN ALSO IN OUR PATIENT
POPULATIONS HERE. IN THIS SLIDE
YOU CAN SEE A DISTRIBUTION OF
THE KINDS OF SYMPTOMS THAT WE
HAVE SEEN THE PATIENTS IN OUR
CARPET CLEANING CAN AGAIN AT THE
VERY TOP. OUR FATIGUE AND
RESPIRATORY COMPLAINTS BUT
THAT'S ONLY THE TIP OF THE
ICEBERG WE ALSO SEE A FAIR
AMOUNT OF NEUROLOGICAL ISSUES. A
LOT OF BRAIN FOG AS WELL AND
SLEEP ISSUES AS WELL AS TROUBLES
WITH MENTAL HEALTH. NOW WHEN
MOST PEOPLE THINK ABOUT LONG
HAUL PROVE IT. WHAT THEY THINK
ABOUT ARE THE SYMPTOMS LIKE THIS
BUT IN REALITY THIS IS ONLY ONE
HALF OF THE PICTURE. AND THE
OTHER HALF AND WHAT I WOULD
ARGUE IS EVEN MORE IMPORTANT. IS
HOW THIS CONDITION REALLY
IMPAIRS THE ABILITY OF THE
PATIENT TO LIVE THEIR LIVES.
THIS IS SOMETHING THAT WE'VE
BEEN FOCUSED ON FROM THE VERY
BEGINNING AS AN OCCUPATIONAL
MEDICINE CLINIC. AT THE TIME OF
PRESENTATION OVER 30% OF OUR
PATIENTS REPORTED DIFFICULTIES
WITH SOME OF THE MOST BASIC
ACTIVITIES OF LIFE ON A DAILY
BASIS. THINGS LIKE BEING ABLE TO
TAKE A SHOWER OR BE ABLE TO PUT
THEIR CLOTHES ON OR USE THE
BATHROOM. 82% REPORTED
DIFFICULTIES WITH THE MORE
ROUTINE THINGS LIKE. GOING
GROCERY SHOPPING OR TAKING CARE
OF HOUSEHOLD CHORES. WERE GOING
TO WORK. NOW 63% OF THE PATIENTS
THAT WE HAVE SEEN OUR CLINIC HAD
BEEN ABLE TO GET BACK TO WORK BY
THE TIME THEY STARTED HERE WITH
US. AND THAT SOUNDS PROMISING
BUT IT'S IMPORTANT TO NOTE THAT
AT THE TIME THAT WE DID THE
SURVEYING THE AVERAGE TIME
BETWEEN THE INFECTION AND
PRESENTATION WITH OUR CLINIC WAS
THREE MONTHS. SO ANOTHER WAY TO
LOOK AT THIS IS THAT AFTER THREE
MONTHS FROM INFECTIONS START
ONLY A LITTLE BIT MORE THAN HALF
OF PATIENTS ARE GETTING BACK TO
THEIR LIVELIHOOD. ON TOP OF THAT
OF THOSE PATIENTS THAT ARE BACK
MANY OF THEM WERE WORKING
REDUCED HOURS OR HAD OTHER KINDS
OF WORK RESTRICTIONS. AGAIN THIS
IS WHAT WE HAVE SEEN HERE IN OUR
OWN CLINIC BUT THIS IS ALSO
CONSISTENT WITH WHAT'S BEEN
FOUND AT OTHER CLINICS ACROSS
THE UNITED STATES AND ACROSS THE
WORLD. SO FOR EXAMPLE IN MOUNT
SINAI AND WHICH IS ONE OF THE
FIRST LOCALLY CLINICS IN THE
COUNTRY- THIS IS A DIAGRAM THAT
COMES IN THEIR PATIENT
POPULATION WHICH YOU CAN SEE IN
THE DARK BARS ARE- EMPLOYMENT
STATUS BEFORE COATED. IN A LIGHT
GRAY BARS AFTER. IN WHICH YOU
CAN SEE IS OF COURSE THE FULL
TIME WORK IS DECREASING AS TIME
GOES ON PART TIME WORK GOES UP.
RESUME PLAYMATE GO UP AND THOSE
WHO ARE RETIRED GOAL OF. AND AS
FOR THE LONGEVITY OF THESE KINDS
OF FUNCTIONAL LIMITATIONS THERE
IS NOT GOOD NEWS. AS MENTIONED
EARLIER WE'RE ALMOST NOW TWO
YEARS ALICE INTO TRYING TO
MANAGE THIS CONDITION AND WE DO
HAVE THE INFORMATION NOW ABOUT
HOW PATIENTS ARE DOING. OVER THE
LONG TERM BIKE THE STUDY THAT
CAME OUT OF NEW YORK. LOOKING AT
HOW FIVE HUNDRED AND THIRTY
PATIENTS WERE DOING TWELVE
MONTHS AFTER THEY WERE
DISCHARGED FROM THE HOSPITAL.
AND WHAT WE SEE FROM THAT SURVEY
IS THAT 41% OF PATIENTS REPORTED
WORSE HEALTH STILL THAN THEIR
BASELINE BEFORE CALLED IT. 45%
ALMOST HAVE PERSISTENT SYMPTOMS
MORE ALARMING THEIR FUNCTION WAS
ALSO LIMITED 36% REPORTED
DIFFICULTIES WITH CARRYING THEIR
GROCERIES ALMOST 40% HAD
TROUBLES WALKING UP A FLIGHT OF
STAIRS. SO THE FUNCTIONAL
DEFICITS THEY CAN STICK AROUND
FOR QUITE A LONG TIME. A
QUESTION I'M OFTEN ASKED WHEN
THIS INFORMATION IS PRESENTED AS
WHY ARE PATIENTS WITH LONG COAT
WOULD LOSING THEIR JOBS. MOST
WOULD THINK THAT THE ANSWER IS
PRIMARILY TIME AGENTS ARE JUST
NOT GETTING BETTER FAST ENOUGH.
HOWEVER IT'S IMPORTANT TO NOTE
THAT GETTING SOMEONE BACK TO
WORK EVOLVES MORE THAN JUST
MAKING SOMEONE FEEL BETTER.
THERE ARE MULTIPLE FACTORS AT
PLAY WHEN IT COMES TO THE
INTERACTION BETWEEN WORK AND
HEALTH NEEDS WHY I HAVE A JOB IN
HIS CAREER. FOR EXAMPLE MANY
EMPLOYERS ARE VERY CONFUSED
ABOUT WHAT THEY CAN DO TO HELP
EMPLOYEES. WITH LONG HAUL CODE
WOULD COME BACK TO WORK
SUCCESSFULLY. THE USUAL RESPONSE
BY EMPLOYER GROUPS WHEN
CHALLENGED WITH THIS CONDITION.
WELL PLEASE DON'T COME BACK
UNTIL YOU ARE 1100% BETTER. WHAT
I DON'T KNOW IF ANY OF US START
THE DAY WITH 1100% OF FEELING
WELL WHEN IT COMES TO OUR WORK
SO THIS IS A VERY DIFFICULT
CHALLENGE FOR MANY EMPLOYEES. SO
THE POINT I REALIZE AGAIN THAT
THERE ARE SO MANY THINGS THAT
ARE LEFT TO BE ADDRESSED IN
ADDITION TO MEDICAL CARE. TO
HELP PEOPLE GET BACK TO THEIR
LIVELIHOODS. IN THE MEANTIME
WITH THIS KIND OF DATA AND BASED
ON WHAT WE'VE SEEN IN THE
CLINICS. I AM WORRIED THAT WE'RE
GONNA BE FACING A TIDAL WAVE OF
PATIENTS UNABLE TO RETURN TO
WORK FOR A PROLONGED PERIOD OF
TIME DUE TO LONG COATED. AND I
REALLY FEAR WHAT THIS MAY DO TO
OUR WORLD AS WE KNOW IT. WE DID
HAVE A PREVIEW OF WHAT COULD
HAPPEN DURING THIS LAST HOLIDAY
SEASON. MANY OF YOU REMEMBER
THAT THERE WERE THOUSANDS OF
HOLIDAY FLIGHTS YOU MAY CANCEL
AT THE WORST TIME. DUE TO
PATIENTS- HE'S MADE DUE TO
FLIGHT CREWS. AND PILOTS BEING
OUT OF WORK DUE TO OVERCROWDING.
WE ALSO HEARD STORIES OF. FIRE
DEPARTMENTS IN CINCINNATI HAVING
TO WORK OVERTIME BECAUSE OF THE
STAFF SHORTAGE. SO THERE IS A
POTENTIAL IMPACT ON OUR WORLD
OUR SOCIETY OR ECONOMY. DUE TO
THE NUMBER OF PEOPLE WHO ARE
SUFFERING FROM LONG COATED. OF
COURSE THE WORKFORCE ISSUES ONLY
ONE OF MANY CHALLENGES AND THEY
MY COLLEAGUES THEY HAD MENTIONED
SOME OF THESE ALREADY SOLVED
JUST IN BRIEF. ONE THING THAT I
DO WORRY ABOUT VERY MUCH SO IS
THAT WE ARE NOT SEEING ALL
PATIENT POPULATIONS. REPRESENTED
IN THIS GROUP INCLUDING
INDIVIDUALS WHO ARE COMING FROM
OTHER KINDS OF JOBS LIKE. MORE
LABOR INDUSTRIES AND SO FORTH.
WE ALSO DON'T HAVE A GOOD WAY OF
ASSESSING IMPACTS ACROSS THE
NATION OR A STATE WIDE FASHION.
WE DON'T HAVE ENOUGH PROVIDERS
TO HELP MANAGE THIS CONDITION
AND PROBABLY MOST ALARMING. THIS
IS NOT RARE. TO GIVE YOU AN IDEA
OF THE KIND OF. PROBLEM THAT WE
HAVE AHEAD OF US WITH THIS
CURRENTLY AS OF THIS WEEK- BEEN
SEVENTY NINE MILLION COVER
NINETEEN CASES IN THE UNITED
STATES ALONE. HERE THE MAYO
CLINIC JUST LIKE OUR FIRST
PRESENTER WE ESTIMATE
CONSERVATIVELY BASED ON THE
RESEARCH CONSERVATIVELY ESTIMATE
THAT TEN TO TWENTY PERCENT. OF
INDIVIDUALS WITH COVER NINETEEN
ARE GOING TO COME DOWN WITH LONG
ALL COOL. SO THAT'S SEVEN POINT
NINE MILLION PEOPLE. BASED ON
OUR CLINIC EXPERIENCE AS WELL AS
RESEARCH IS OUT THERE WE
ANTICIPATE THAT 30% OF THOSE
INDIVIDUALS WILL HAVE LONG TERM
DIFFICULTIES GETTING BACK TO
THEIR NORMAL WORK. AND THAT IS
ROUGHLY TWO POINT THREE SEVEN
MILLION PEOPLE OUT OF WORK DUE
TO LOW HOW COOL IT FOR MANY
MONTHS OR INDEFINITELY. SO THE
CHALLENGE AHEAD OF US WITH LOCAL
WHICH IS MORE THAN JUST A HEALTH
CARE CHALLENGES A CHALLENGE FOR
OUR SOCIETY. IN OUR ECONOMY AS A
WHOLE. WITH THAT I WILL PAUSE
AND- NEIL TO OUR NEXT PRESENTER.
THANK YOU OUR DOCTOR SHOULDN'T
SPEAK. WELCOME THANK YOU. I
APPRECIATE THE OPPORTUNITY TO
SPEAK TODAY ABOUT LONG COVE IT
IT'S A TOPIC THAT I'VE BEEN
RESEARCHING BIRTH FOR THERE IS
EVEN A NAME TO PUT TO THE
SENTENCE. NOW AS YOU HEARD HERE
TODAY IT'S IMPORTANT TO
UNDERSTAND THAT NOT EVERYONE HAS
THE PRIVILEGE OR THE OPPORTUNITY
TO BE ABLE TO RETURN TO LIFE AS
USUAL- CALIFORNIANS WHO ARE
SUFFERING. MY NAME IS DR
JENNIFER STEVENS THE ANIMAL
DOUBLE BOARDED PREVENTIVE
MEDICINE AND LIFESTYLE MEDICINE
PHYSICIAN SERVING AS A DEPUTY
PUBLIC HEALTH OFFICER FOR
RIVERSIDE COUNTY. IT HAD MORE
THAN WHERE WE'VE HAD MORE THAN
SIX THOUSAND THREE HUNDRED
CALLED NINETEEN RELATED THAT. I
OVERSEE THE DIVISION OF
INFECTIOUS DISEASE COMMUNITY
HEALTH PLANNING AN EQUITY AND
SERVE AS A MEDICAL ADVISER FOR A
LOCAL COMPANY IN RESPONSE. I'M
SPEAKING ALSO ON BEHALF OF THE
CALIFORNIA CONFERENCE ON LOCAL
HEALTH OFFICERS AND THE COUNTY
HEALTH EXECUTIVES ASSOCIATION OF
CALIFORNIA. BEFORE JOINING
RIVERSIDE COUNTY AROUND SIX
MONTHS AGO I WORKED AT THE CDC
AS AN EPIDEMIC INTELLIGENCE
SERVICE OFFICER. OR IS DEPLOYED
TO THE LATE TO QUALIFY OR POST
KOBE CONDITION UNIT. IN THIS
ROLE I WROTE THE CDC'S INTERIM
GUIDANCE FOR HEALTHCARE
PROVIDERS EVALUATING IN CARING
FOR PATIENTS WITH POST ON THE
CONDITIONS. MY FEEDBACK FROM THE-BODY POLITIC SURVIVOR CORPS AND
THE PATIENT LED RESEARCH
COLLABORATIVE. I'VE ALSO
AUTHORED MULTIPLE PUBLICATIONS
ON POST CODE CONDITIONS AREN'T
LONG KOBE. AND HELP INFORM THE
DECISION TO CONSIDER LONG CODE
AS A DISABILITY AND TO CREATE.
AN ICD CARCASS COMPETITION. WHAT
TIME CALLED NINETY IS LOOKED AS
A VIRUS THAT PEOPLE EITHER
SURVIVE OR DIE FROM. THERE'S A
LOT THAT FALLS IN BETWEEN. IT IS
SHOWING THAT THERE ARE
WIDESPREAD IMPACTS THE PHYSICAL
HEALTH MENTAL HEALTH AND QUALITY
OF LIFE. AND WHILE IT WAS ONCE
THOUGHT THEY COULD NINETEEN WAS
PRIMARILY A DISEASE OF THE LUNGS
WE'VE COME TO LEARN THAT THE
EFFECTS OF CARBON NINETEEN. ARE
MUCH MORE WIDESPREAD. PEOPLE
CAN. EXPERIENCE A VAST NUMBER OF
DIFFERENT KINDS OF SYMPTOMS AS A
BEEN DESCRIBED THROUGHOUT THIS
YEAR AND- MANY OF THESE SYMPTOMS
CAN BE DIFFICULT DIFFICULT TO
DESCRIBE. AND STUDIES SUGGEST
THAT LONG BECAUSE IT MAY BE MORE
COMMON IN WOMEN. AND SO IT
BECOMES EVEN MORE IMPORTANT FOR
US TO PAUSE AND LISTEN TO THESE
EXPERIENCES AND TAKEN SERIOUSLY.
AS A STARKLY WE KNOW THAT WOMEN.
PARTICULARLY WOMEN OF COLOR.
HAVE UNFORTUNATELY EXPERIENCED
MEDICAL RACISM AND SEXISM
WHETHER SYMPTOMS HAVE BEEN
DISMISSED. IMPORTANTLY JUST AS
THERE BEEN DISPARITIES IN COMMON
NINETEEN CASES IT'S INTOXICATED
THAT SIMILAR DISPARITIES HAVE
AND WILL EXIST FOR LONG BECAUSE
OF IT. IT MEANS THAT OUR
COMMUNITIES OF COLOR ARE LIKELY
TO EXPERIENCE HISTORICAL AND
CURRENT DISPARITIES NOT RELATED
TO KOBE. DISPARITIES RELATED TO
Q. CODE NINETEEN AND THEN ON TOP
OF THAT ALSO ADDITIONAL BURDEN
OF LONG COMMENT. SOME OF THE KEY
ACTIVITIES THAT HELP DEPARTMENTS
HAVE DONE AND WILL CONTINUE TO
DO IN ORDER TO PREVENT LONG
COMMENTS. INCLUDE THE SAME
ACTIVITIES THAT HELP PREVENT
COMMON NINETEEN. THROUGHOUT THE
PANDEMIC HEALTH DEPARTMENTS HAVE
BEEN ON THE FRONT LINES TO
PROVIDE VACCINATION TESTING
NOVEL THERAPEUTICS. AS WELL AS
GUIDANCE ON MASKING ISOLATION
QUARANTINE VENTILATION HAND
WASHING. WE KNOW THAT THESE
STRATEGIES WORK AND WE STRIVE TO
PROVIDE THESE PROGRAMS AND THIS
GUIDANCE CENTERING ON WE IN OUR
MISSION. MANY OF THESE ASPECTS
ARE FOUNDED HIGHLIGHTED IN
CALIFORNIA SMARTER BLACK. OTHER
ACTIVITIES THAT COUNTY HEALTH
DEPARTMENTS CAN AND HAVE DONE
INVOLVED THE RULES EXPERT
CONVENERS OF COMMUNITY PARTNERS
AND RESOURCES THEY CAN USE THEIR
COMMUNICATION PLATFORMS TO SHARE
INFORMATION ABOUT LONG CODE ON
THEIR WEBSITE EITHER DIRECTLY OR
BY LINKING TO THE CDPH WEBSITE
POST INFORMATION ON OUR SOCIAL
MEDIA MEDIA PLATFORMS. AND SHARE
INFORMATION ABOUT LOCAL POSTCODE
CARE CLINICS DISABILITY BENEFITS
AND RECOMMENDATIONS ON FLEXIBLE
WORK AND SCHOOL POLICIES. WITH
SOME OF THIS GROUNDWORK HAS BEEN
DONE HOW DEPARTMENTS CAN HELP
SHARE AND BRING THIS INFORMATION
TO THEIR TRUSTED COMMUNITY BASED
ORGANIZATIONS. FAITH BASED
ORGANIZATIONS SCHOOLS EMPLOYERS
AND OTHERS. LOCAL HEALTH
DEPARTMENTS ARE GREAT AT
COMPETING GROUPS CONNECTING THE
DOTS SHARING INFORMATION AND
PARTNERING WITH THE COMMUNITY.
SOME OF THE MORE SPECIFIC
INITIATIVES THAT WE PARTNER ON
HERE IN RIVERSIDE COUNTY INCLUDE
CONDUCTING POST CODE FOLLOW UP
CALLS TENS OF THOUSANDS OF
CALLS. TO LEARN ABOUT THE LONG
TERM EXPERIENCES THAT OUR
RESIDENTS HAVE AFTER TESTING
POSITIVE FOR COMMON NINETEEN.
PARTNERING WITH MEMBERS OF OUR
AFRICAN AMERICAN COLLABORATIVE
ON BUILDING SUPPORT GROUPS WITH
TRAUMA INFORMED APPROACHES. AND
HOSTING TRAINING SESSIONS ON MY
UNCLE BUT FAR FROM THE TOURISTS
AND COMMUNITY HEALTH WORKERS
HAVE BEEN INTEGRAL TRUSTED
MESSENGERS THROUGHOUT THE COMMON
NINETEEN RESPONSE. REACHING OUR
LOT NEXT COMMUNITY INCLUDING
MIGRANT AGRICULTURAL WORKERS.
AND ACTUALLY IN OUR COUNTY WE
PERSONALLY FELT THE EFFECTS OF
LONG CALL THAT AS ONE OF OUR
COMMON TORRES HAS EXPERIENCED
ONGOING EFFECTS OF LONG CALLED
IT. SUCH THAT SHE HAVEN'T BEEN
ABLE TO GO BACK OUT INTO THE
FIELD AND CONTINUE DOING THE
GREAT COMMUNITY WORK SHE HAS A
MUCH PASSION FOR. THIS RIPPLE
EFFECT CAN BE FELT THROUGHOUT
THE COMMUNITY. YOU MUST CONTINUE
TO BUILD STRATEGIES AROUND LONG
COLD WINTER RECOVERY PLANS
CENTERING EQUITY AT THE CORE OF
THE STRATEGIES. WE MUST LEARN
FROM LESSONS OF PASSOVER POST
VIRAL CONDITIONS LIKE THE
EXPERIENCES FROM POST POLIO WORK
WEST NILE VIRUS. AS WELL AS SOME
COMMUNITIES THAT HAVE LONG
SUFFERED WITH CONDITIONS THAT
ARE OFTEN DOWNPLAYED. LIKE THOSE
EXPERIENCING ANY CFS OR MYALGIC
ENCEPHALITIS AN IMPASSE. MORE
STUDIES ARE NEEDED THAT'S THAT'S
CERTAIN AND WE'LL IT'LL LIKELY
TAKE TIME BEFORE CENTERS OF
EXCELLENCE ARE ESTABLISHED. BUT
IN THE MEANTIME WE NEED TO HELP
THOSE WHO ARE SUFFERING NOW. SO
WHAT WITH YOUR SUPPORT FOR OUR
STAFF AND PROGRAMS WE CAN
PREVENT NEW CARBON NINETEEN
CASES NOW WE CAN SHARE CURRENT
BEST PRACTICES AND RESOURCES
NOW. YOUR CONTINUED SUPPORT WITH
PLANNING AND BUDGETING FOR
SERVICES TO HELP US GROW THESE
INITIATIVES AND ACHIEVE THESE
GOALS NOT ONLY FOR THE
COMMUNITY. BUT WITH THE
COMMUNITY. CALIFORNIA HAS A
COMBINED AND SHOULD CONTINUE TO
TAKE THE LEAD. HOW DO WE NEED TO
CALIFORNIA. THE FRONT SO I THANK
YOU FOR YOUR TIME. THANK SO VERY
MUCH YOUR PRESENT- QUESTIONS
COMMITTEE. OKAY ACTUALLY I DO
HAVE A QUESTION FOR YOU BUT NOW
BEFORE I ASK MY QUESTION IS
WHERE COME IS THIS IS THE LAST
PANEL I DO JUST WANT TO INVITE-
THE PUBLIC WHO WISH TO
PARTICIPATE IN PUBLIC COMMENT WE
DO HAVE A HARD STOP TIME AT
THREE THIRTY. TWO IF THEY WANT
TO CALL IT NOW PLEASE DIAL THE
TOLL FREE NUMBER. EIGHT FOUR
FOUR TWO NINE ONE FOUR ONE EIGHT
FIVE. AND USE THE ACCESS CODE
ONE TWO SIX FIVE TWO ONE EIGHT
SO JUST ONE OF THOSE PEOPLE ARE
CALLING IN THIS IS A GOOD TIME
TO DO THAT- SO- DOCTOR VANISH-
THERE'S CONCERN E. MENTIONED- TO
SERVE I GUESS YOUR ESTIMATE OF-
ESSENTIALLY. TWENTY ROUND TWO
TWO POINT FOUR MILLION.
AMERICANS UNABLE TO WORK
ATTENTION LEE- FROM LONG COATED.
OUR OUR OUR POST CODED- INDEX
AND AS YOU MENTIONED- I THINK
WE'RE ABOUT SEVENTY NINE
MILLION- KOBE CASES ALTHOUGH OF
COURSE SOME PEOPLE SAY THAT'S
FINE UNDER ESTIMATE- BUT I
THINK. THE AT LEAST I'VE SEEN
AND PLEASE CORRECT ME IF I'M
WRONG. BECAUSE I'M NOT- PROBABLY
ROUGHLY A LITTLE UNDER HALF OF
AMERICANS PRIDE HAD COATED-
POTENTIALLY- AGAIN IT'S A BIT OF
A GAS- WE KNOW THEY'RE SEVENTY
NINE MILLION YOU ACTUALLY.
REALLY STUCK IT CASES
IDENTIFIED- THE ACTUAL NUMBER
PERHAPS A LITTLE BIT HIGHER-
BUT- THAT ALSO MEANS. THE TAPE
OUT HALF FOR A LITTLE OVER HALF.
OVER HALF OF AMERICANS HAVEN'T.
HAD BECAUSE OF IT- THIS LOOKING
AT THE NUMBERS OF LONG COVE IN
AND THAT YOU KNOW WHAT WE HAVE A
RANGE OF FREQUENCIES AND SO
FORTH. WHAT YOU EAT IMAGE SHOULD
WE BE WORKING HARDER THIS STOP
TO PREVENT THE OTHER HALF FROM
ACTUALLY ARE LITTLE OVER HALF
FROM GETTING COLD IN THE FIRST
PLACE I MEAN WE WE'VE BEEN
TALKING ABOUT. ALL THE SERVICES-
FOR THEM WE NEED TO DO THAT
THERE'S SO MANY PEOPLE RAVE
GOTTEN COBIT OR A HALF BLOCK OF
IT. WHAT YOU'LL BE DOING TO. IT
YOU KNOW SOME PEOPLE SAID WELL
HEY YOU KNOW WHAT'S IT'S OKAY
PEOPLE CAN GET KIND OF IT AND- I
WILL DEAL WITH IT LATER- BUT-
WHAT YOU'RE TELLING ME IN TERMS
OF THE BURDEN. SHOULD WE BE
WORKING HARDER TO TRY TO PREVENT
THE CODED SO THAT WE DON'T KEEP
ADDING TO THIS BURDEN OF LONG
KERR. COVE IN. YES GREAT
QUESTION THANK YOU FOR THAT AND
I THINK THERE'S THREE MAIN.
POINTS THERE THAT I COULD JUST
TOUCH ON BRIEFLY FIRST YES THE
NUMBERS THAT WE HAVE. FOR THESE
ESTIMATES THEIR ESTIMATES DOES
THAT. AND THERE ARE MANY PEOPLE
OUT THERE WHO MAY HAVE HAD KOBE.
WHO DEMAND ACCESS OF TESTING
ESPECIALLY EARLY ON THE
PANDEMIC. YOU MAY BE
EXPERIENCING THE SYMPTOMS AND
ARE FALLING THROUGH THE CRACKS
AND WE MAY NOT KNOW ABOUT THEM.
WHEN IT COMES TO- THE NEXT WAVE
HERE YOU'LL WHEN WE HAD- MORE
CONCERTS A LOT OF PEOPLE TOOK
SOLACE IN THAT THIS CONDITION
WAS- OVER THIS PERIOD- TREATED
INDIVIDUALS LESS SEVERELY BUT AS
WE HAVE HEARD MULTIPLE TIMES
OVER TODAY- LET. A SEVERE
INFECTION IS NOT REQUIRED IN
ORDER FOR SOMEONE TO HAVE. A
LOCAL OF IT AND THIS IS OFTEN
STILL VERY SURPRISING TO MANY
INDIVIDUALS OUT THERE SO I THINK
THAT. EDUCATION ABOUT WHO CAN
GET LONGER WHO'S AT RISK FOR
THIS AND HOW LONG YOU CAN REALLY
LAST. IS SOMETHING ELSE THAT WE
NEED TO FOCUS IN ON. AND OF
COURSE THERE'S ALSO THE
VACCINATION BY FAR THE BEST WAY
TO NOT GET LOCAL BIT IS TO NOT
GET CALLED IT IN THE FIRST
PLACE. AND CONTINUING OUR
EFFORTS TO MAKE SURE THAT
INDIVIDUALS ARE PROPERLY
VACCINATED THAT WE CONTINUE TO
DO THE RESEARCH. INTO THE PROPER
VACCINES. ARE GONNA BE IMPORTED
AS WE GO FORWARD. THANK YOU AN
INDUCTION IN SKI ME A D. YOU
KNOW YOU DESCRIBE YOUR
BACKGROUND- OF COURSE YOU WERE
YOU KNOW WORKING AT THE CDC BUT
YOU'RE ALSO SPEAKING ON BEHALF
OF THE LOCAL HEALTH OFFICERS
AND- THE A LOCAL HELP. THE
COUNTY HEALTH DEPARTMENTS WE DID
HEAR FROM THE STATE ABOUT SOME
OF THE THINGS THAT THEY'RE
DOING. OR SOME OF THE THINGS
THAT LOCAL HEALTH DEPARTMENTS
ARE DOING AND WHAT THESE LOCAL
HEALTH DEPARTMENTS NEED FROM THE
STATE THAT YOU'RE SPEAKING TO. A
STATE SENATORS HERE. WHAT DO YOU
WHAT DO YOU NEED FOR- AS AS THIS
COUNTY HEALTH DEPARTMENTS AND
HEALTH OFFICERS. TO HELP.
SUPPORT YOU IN. BOTH DEALING
WITH LONG COVETED ADDRESSING
LONG COVETED BUT ALSO PREVENTING
LONG BECAUSE OF IT SO THAT WE
DON'T KEEP ADDING TO THAT THE
NUMBERS OF PEOPLE TALK OF IT.
SHARKS WELL FROM OUR SIDE YOU
KNOW AS WE HAD THROUGHOUT YOU
KNOW OUR OUR TIME DEALING WITH A
PANDEMIC WHERE WE'RE STILL
WORKING ON VACCINES ARE STILL.
YOU KNOW WORKING ON TESTING
WE'RE STILL. WORKING ON
THERAPEUTIC STAFF SUPPORT FOR
THOSE ONGOING ACTIVITIES IS
VITAL. AND WHAT THAT SUPPORT
LOOKS LIKE THAT'S ALSO HELP WITH
STAFFING SO WE'VE HAD SOME
STAFFING CONCERNS OVER TIME. THE
BUILDING UP OFF OF THE WORK
FORCE AND HAVING FUNDING TO HELP
DO THAT CAN REALLY HELP US TO.
ACCOMPLISH OUR OUR ONGOING
ACTIVITIES WITH THAT CODE
RESPONSE. BUT THEN ALSO AS WE
BRANCHED INTO- YOU KNOW NEWER
ACTIVITIES AROUND LONG CALL THAT
YOU- THERE ARE THERE ARE EFFORTS
THAT WE ALREADY HAVE UNDERWAY AS
AS I MENTIONED IN RIVERSIDE
COUNTY. I'M A LOT OF THOSE
FOCUSED AROUND THE EQUITY
COMPONENT AND REACHING INTO OUR
LOT NEXT COMMUNITY- AFRICAN
AMERICAN COMMUNITIES. AMERICAN
INDIAN COMMUNITIES- SO BEING
ABLE TO HAVE THE STAFF AND HAVE
THE RESOURCES TO BE ABLE TO
EXPAND. OUR LONGER BUT
AFTERWARDS. HELLO WE TRY TO MAKE
THAT EVERYBODY'S THE COMMUNITY
HAS THIS INFORMATION. INTO THE
SCHOOLS INTO THE EMPLOYMENT
SECTORS AND- AND MOST
IMPORTANTLY INTO ON. THE AREAS
THAT ARE OTHERWISE. I HAVE A
LARGE SOCIAL AND ECONOMIC
BARRIERS. AND MAYBE TO FOLLOW UP
WITH YOU TALKED ABOUT EQUITY- AT
TWO TWENTY THREE DO YOU THINK
PERHAPS LONG COVE IT MAY BE
UNDER DIAGNOSED AND TO ME IS A
COLOR AND LOW INCOME COMMUNITIES
AND WE TALKED ABOUT IT'S HARD TO
DEFINE- PEOPLE. WHAT WE TRY TO
ESTIMATE THE NUMBERS AND I KNOW
THAT THE DIRECTORS SERVE WIDE
VARIATION BUT ALSO WE GET. LESS
ACCESSIBLE WHETHER IT'S PRIVATE
CARE DOCTORS. OF COURSE THAT
MEANS EVEN LESS ACCESS TO MULTI
DISPLAY TEAMS OF SPECIALISTS AND
SO FORTH AND THEN OF COURSE THAT
WE TALKED ABOUT LESS ACCESS TO
TESTING AND OTHER TYPE THINGS
AND THEN IF I WAS EVEN HAD
CALLED IN THE FIRST PLACE- AND
HOW OFTEN IT TURNS OUT SOMEONE
MAY NOT BE NECESSARILY- HAVE YOU
KNOW NOT HAVE A POSITIVE TEST
AND STILL HAVE LONG CODE HE
MAYBE SPEAK TO. WHAT WE NEED TO
DO TO ENSURE THAT THERE WERE
ACTUALLY IDENTIFYING- PEOPLE
BLOCK OF IT WHO ARE ARE
DEFINITELY WHAT THAT THE BURDEN
OF LOCAL IT IS AND UNDERSERVED
COMMUNITIES. SURE I THINK AGAIN
THAT DAY THAT GOES BACK TO SOME
EDUCATION COMPONENTS AND THE
REACH OUT INTO THE COMMUNITIES
AND BEING ABLE TO FIND. OUR
COMMUNITY BASED ORGANIZATIONS
ARE FAITH BASED ORGANIZATIONS
THOSE THAT ARE TRUSTED
MESSENGERS. AND BEING ABLE TO
DELIVER. THIS INFORMATION. AND I
CERTAINLY ANTICIPATE THAT WE'RE
UNDER DIAGNOSING AND UNDER
EVALUATING. THE AMOUNT OF LONG
CODE THAT ARE IN THESE
COMMUNITIES AND COMMUNITIES OF
COLOR. AND NOT PART OF THAT
COMES FROM MY EXPERIENCE WITH
TALKING WITH PEOPLE AND LEADERS
IN THESE COMMUNITIES. AS WE WORK
ON SOME OF THESE LONG CORPORATE
EFFORTS. AND WHAT I'VE HEARD
FROM SOME OF THOSE INDIVIDUALS
IS. I HAVEN'T BEEN ABLE TO
CONCENTRATE IN A REALLY LONG
TIME I HAD CALLED IT. AND I'VE
BEEN HAVING THIS THIS PROBLEM
SINCE THAT I HAVEN'T BEEN ABLE
TO CONCENTRATE I'VE LOST MY
MEMORY BUT I DON'T KNOW WHAT IT
IS. SO PEOPLE DON'T HAVE WORDS
FOR IT THEY DON'T KNOW WHAT
THEY'RE EXPERIENCING THEY JUST
KNOW THEY'RE SUFFERING. I THINK
THAT'S WHY IT'S REALLY IMPORTANT
THAT WE GET THIS INFORMATION OUT
THERE- AND THAT WE'D FINALLY
THROUGH ALL OF OUR- TRUSTED
PARTNERSHIPS. BECAUSE PEOPLE ARE
SUFFERING AND THEY DON'T EVEN
KNOW WHAT IT'S FROM. BOTH THANK
YOU VERY MUCH. BOTH THE DOCTOR-
MANAGE KRISHAN AND- DOCUMENTS P.
THANK YOU SO VERY MUCH FOR YOUR
PRESENTATIONS- IT'S BEEN VERY
VALUABLE AND REALLY GET. TO YOU
YOU BEING HERE PRESENTED TO US
THANK YOU- CENTER NEWMAN DID YOU
HAVE ANY CONCLUDING REMARKS
BEFORE HE MOVED TO PUBLIC
COMMENT. VERY BRIEFLY SERVED AT
THANK YOU MISTER THANK YOU TO
EVERYBODY WHO PARTICIPATE IN
TODAY'S HEARING- PARTICULARLY
THOSE- YOU KNOW VERY BRAVEST
CENTER LEAVING OTHERS. NOTED YOU
KNOW FOLKS WHO WHO EXPERIENCE
COVEIT FIRST HAND. I ADD TO THE
MEDICAL PROFESSIONS ARE WORKING
SO HARD. ON ON FINDING
SOLUTIONS- AND RENDERING CLARITY
AROUND LONG CODE COVETED I THINK
YOU. THIS IS CLEARLY A PROJECT
THAT WILL GO ON- AND I KNOW I
SPEAK FOR SENATOR PAN THAT WE
ARE COMMITTED. TO WORKING WITH
YOU AS WE DO THAT. THANK YOU.
THANK YOU AND I TO I THANK ALL
THE PRESENTERS AND- ESPECIALLY
THE- PATIENTS AND FAMILIES WHO
SHARED THEIR PERSONAL STORIES.
AND THAT DEFINITELY DOES NOT
WORK FOR US. WITH THAT I. DO
WANT TO MOVE TO PUBLIC COMMENT-
SO- WE'RE GOING TO- FIRST- HEAR
PUBLIC COMMENT FROM PEOPLE
PRESENT IN THE CHAMBER- GIVEN
THE LIMITED AMOUNT OF TIME WE
HAVE LEFT THEY ASKED YOU. YOU
NEED TO INTRODUCE YOUR NAME IF
YOU REPRESENT AN ORGANIZATION
THE NAME OF THE ORGANIZATION
AND- EACH COMMENTS- GIVE YOU
THIRTY SECONDS. AND THEN- WE'RE
GOING TO THEN MOVE ON TO OUR
PHONE LINES. SO WE'LL BEGIN WITH
THE PUBLIC GALLERY- TWO WE'RE
SORRY WE ARE OKAY DOVE- PLEASE
PLEASE BEGAN THE NAME
ORGANIZATION IF YOU HAVE AN
ORGANIZATION AND THEN THE SET
THIRTY SECONDS. MY NAME IS
MAXWELL DNIA I AM NOT ASSOCIATED
WITH THE SPECIFIC ORGANIZATION
BUT I JUST WANT TO SAY THAT
CALIFORNIA HAS HAD. THE LOWEST-
KOPEN INFECTION RATES FOR
MONTHS- BUT YET NEWSON CHOSE TO
EXTEND THE INDOOR AND SCHOOL
MASK MANDATES. AND YOU SAY THAT
YOU CARE ABOUT US YOUNG KIDS AND
THAT YOU WANT TO HEAR ME OUT BUT
THE POLICIES YOU'VE BEEN
IMPLEMENTING DON'T ALIGN WITH
THAT. YOU SAY IT'S AN
INSPIRATION- THAT I AM AN
INSPIRATION. BUT IN MY EYES THE
MONEY IN YOUR BACK POCKET IS
INSPIRING YOU MORE THAN I EVER
WILL. PUBLIC OFFICE SHOULDN'T BE
A POLITICAL CHANGES ARE VERY
MUCH NEXT SHOULD BE. NYNEX PETER
PLEASE. YES THIRTY SECONDS IS UP
. WE HAVE A LOT OF PEOPLE WANT
TO SPEAK. THANK YOU WELCOME I'M
AN RN AND HAVE BEEN P. I'M
COMING TODAY WHAT I SAW AT LEAST
INTRODUCE YOURSELF NAME PLEASE I
I'M SORRY YOU DIDN'THEAR ME MY
NAME IS GENEVIEVE BUCKLEY I'M IN
LABOR AND DELIVERY REGISTERED
NURSE AND A FAMILY NURSE
PRACTITIONER. SPEAKING OUT TO
GREATLY AGAINST YOUR PRIMARY
PREVENTION POLICIES FOR COVERED
NINETEEN GIVEN THAT THE- SURGE
OF OMICRON HAS COME THE VIRUS
WILL CONTINUE TO MUTATE THERE
WILL BE ANOTHER. YET THERE IT
WILL NOT TO BE A VACCINE THAT
CAN MANAGE THIS AND I APPRECIATE
YOUR CONCERN AND I REALLY
APPRECIATE COMING AND HEARING
ALL OF THE COMMENTS FROM OTHER
PEOPLE. YOU'RE TAKING AN
AUTHORITARIAN. POSITION ON
PEOPLE'S HEALTH THANK YOU MA'AM
THE DEMOCRATIC SPEAKER PLEASE.
PLEASE INTRODUCE YOUR NAME FIRST
MY NAME'S MELISSA CREW I'M WITH
THE ALLIANCE- A NONPARTISAN
ALLIANCE OF CALIFORNIA AT THE
OPENING STATEMENTS AND
STATISTICS AS WELL AS TESTIMONY
THAT YOU SELECTED TO BE HEARD
TODAY ARE NOT WITHOUT BIAS WHEN
IT COMES TO COPE WITH NARRATIVES
IN SACRAMENTO I DON'T. THERE IS
NO EQUITY- THESE THAT SINCE WE
THE PUBLIC WHO ARE WITHOUT A
CONFLICT OF INTEREST OR NOT
GIVEN THE OPPORTUNITY TO PRESENT
OUR EXPERTS I'LL ADDRESS THE
MOST GLARING REASON WHY YOU ARE
WITHOUT OBJECTIVITY AND YOU'RE
NOT QUALIFIED TO BE THE CHAIR OF
THE HEALTH COMMITTEE. AND SENATE. THANK YOU DAN BIGGAR NUMBER
THREE TO YOU THANK YOU NEXT
WEEK- PLEASE. HELLO MY NAME IS
NIKKI MYERS I JUST WANNA TALK
ABOUT SOME. RECKLESS AND
DANGEROUS ELEMENTS THAT YOU HAVE
TO CONSIDER- 80% OF CHILDREN
AGES FIVE ELEVEN HAVE ACQUIRED
NATURAL IMMUNITY. NATURAL MEAN
ANY MEANS THOSE CHILDREN HAVE.
HIGH AMOUNTS OF THE AGENTS IN
THEIR BODY POTENTIALLY FOR YEARS
AND FOURTEEN IS THAT ANY KIND OF
ACCIDENT A MANDATE. ON THEM
AFTER NATURAL AGENTS PRESENT IS
KNOWN TO CAUSE HYPER IMMUNE
RESPONSE WHICH IS VERY LIKELY
CAUSING DEATH- THAT IS SIX
MILLION CHILDREN CALIFORNIA.
THAT IS ALMOST FIVE MILLION
CHILDREN AT RISK FOR VERY HIGH
DEATH FOR VACCINATION. AND EVEN
IF YOU. FIND OUT WHO'S HEARING
IS ON LONG COVE IN THANK YOU
YOUR TIME IS UP. NEXT WEEK-
HELLO MY NAME IS KASHA WILLIAMS
I'M AN ELEMENTARY SCHOOL
LIBRARIAN WE WENT BACK IN PERSON
LOOKED OVER TWENTY TWENTY. KNOWN
WHAT A BACKSEAT AGAINST
COPYRIGHT WE MADE IT THROUGH THE
YEAR. FOR TWENTY TWENTY ONE
AGAIN SAME THING. I WOULD LIKE
ALL MY CHILDREN TO ATTEND SCHOOL
IN PERSON NEXT YEAR REGARDLESS
OF THE VACCINATION STATUS. THE
VACCINE DOESN'T STOP THE SPREAD
OF THE VIRUS. IF THEY CONDUCT IN
SCHOOL IN PERSON THE HEALTHY
CHILDREN. ARE DISCRIMINATED
BECAUSE THEY WILL NOT BE ABLE
TO. ATTEND SCHOOL. YOU I REMIND
YOU THIS IS A HEARING ON LONG
COVE IT. NEXT WEEK- CATHERINE
MCBRIDE PLASTER COUNTY THE
NUMBER POSITIVE CASES AT EIGHT
AND A HALF MILLION DEATHS AT
EIGHTY SIX THOUSAND ARE HIGHLY
INFLATED THE NUMBER OF CASES
MEANS NUMBER PEOPLE WHO RECEIVE
DEPOSIT POSITIVE COVER TEST
THEIR HIGHLY INACCURATE AN OVER
EXAGGERATION OF POSITIVE
BECAUSE- UP 290% OF THE TIME
ACCORDING TO MIKE EVEN. VISORS
CHIEF SCIENCE ADVISOR DEBORAH
BERKE SAYS SAYS THAT NO DEATHS
ARE COUNTED THIS IS THE SAME. AS
FROM COME FROM COLD AS WELL WITH
KOPEN- FROM MY DOCTORS ABOUT
TREMENDOUSLY THANK YOU EARLY
TREATMENT BECAUSE. I VERY MUCH
NEXT WEEK- PLEASE. ALL RIGHT
NEXT WEEK- PLEASE. NOW I CAN
HEAR YOU. YEAH VERY GOOD. HI
DOCTOR PAM MY NAME IS RELAX I
WORK IN THE LABORATORY FIELD FOR
TWENTY YEARS I'M REALLY THE LEAD
SACRAMENTO ADVISER FOR
ORGANIZATION LED BY JAMES P.
BRADLEY RUNNING FOR US SENATE
TODAY I'M SPEAKING ON BEHALF OF
MY EXPERIENCE AND KNOWLEDGE OF
VIRUSES THAT EFFECTS OF VACCINES
AND I WOULD LIKE TO OFFER YOU
SOME FACTS FOR CONSIDERATION
THAT YOU MAY NOT BE AWARE OF OR
MAYBE YOU ARE IN DETERMINING
WHAT ACTION YOU'RE GOING TO
CONSIDER IN REGARDS TO EMERGENCY
RESPONSE PLAN. TO LONG COVE IT
IMPACTS ONE WOULD HAVE TO HAVE
LONG TERM STUDIES THANK YOU.
NEXT WEEK- DOCTOR THEN YOU NEED
TO LET US THANK YOU EXPECT HER.
YOU ARE YOU YOU YOU YOU ARE FREE
TO SUBMIT WRITTEN COMMENTS IN
WRITING. TO THE COMMITTEE WHICH
WILL BE PART OF THE RECORD-
JAPAN ONE MINUTE IS NOT ENOUGH.
WELL I AND I APOLOGIZE BUT WE DO
HAVE A LOT OF PEOPLE IMPACTED BY
PEOPLE SPEAKING HERE. NEXT SORRY
YOU HAVE. TO THE RULES HAVE BEEN
SET NEXT WEEK- PLEASE. PLEASE
MAKE YOUR COMMENTS IN WRITING
THEN THANK YOU. MY NAME IS CHAS
CASTING YEAH THAT I REPRESENT
THE HISPANIC COMMUNITY THE
CHILDREN TO YOU THE MEN AND
WOMEN OF SACRAMENTO COUNTY AND
YOU DO NOT SPEAK FOR US I
DECLARE FOR THE RECORD YOU
DOCTOR PANTANO ARGON OLIVIA
BECAUSE SORRY SHALL BE HELD FOR
MEDICAL MALPRACTICE BY WE THE
PEOPLE OF SACRAMENTO COUNTY THE
CONSTITUENTS THAT YOU DO NOT
REPRESENT THE CORPORATE INTEREST
IS WHAT YOU REPRESENT. YOU KNOW
SOME ARE GUILTY OF CONSPIRACY
WITH THE COMMUNIST REPUBLIC OF
CHINA WE WILL NOT TOLERATE YOUR
TRESPASS AGAINST US WE WILL HOLD
YOU IN NEXT SPEAKER RACISM IS
NOT. ACCEPTED HERE THANK YOU I
THANK SPEAKER. I AM LINDA HART
DRAFT A MOTHER A GRANDMOTHER.
CURRENT REALITY AND FROM THE
OTHER SIDE OF THE SHIP. THE CDC
STATES THAT THIRTY SIX CHILDREN
DIED OF COATED IN THE USA AND
THAT IS NOT JUST IN CALIFORNIA.
IT WAS MAYBE FIVE IN CALIFORNIA
AND THAT NUMBER REDUCED TO ZERO
BY APRIL TWO THOUSAND TWENTY
ONE. AFTER THIS MANDATE THREE
MILLION IN CALIFORNIA ARE HIGHLY
LIKELY TO DIE FROM HYPER IMMUNE
RESPONSE FROM VACCINATION AFTER
HAVING NATURAL IMMUNITY TESTING.
FOR NINETEEN EIGHTIES EXCHANGER
PLEASE. NEXT WEEK- PLEASE THE
CHILD AND WE NEXT SPEAKER. OR
MAYBE WE CALL GAVIN ANY TWENTY
UNFORTUNATELY WE ARE RECALLING
BUT THE COMMUNITY WE REPRESENT
FEELS THE FAST TRACK A BILL THAT
YOU'RE WAITING THE THIRTY DAY
HOLD EXTREMELY RECKLESS AND
DANGEROUS DR YEAH AND ALL OF YOU
BELOW THE DATA IS PRESENTED
CANNOT BE IGNORED. WE DID NOT
ABLE THAT YOU DIDN'T KNOW BETTER
IS NOW GONE WE USED TO HAVE
TRUSTED OR ELECTED
REPRESENTATIVES TO DO NECESSARY
CRITICAL THINKING. NOT GOING TO
MAKE A DECISION FOR OUR
COMMUNITY THANK YOU WE- THANK
YOU. AGAIN I WOULD POINT OUT
THIS IS ON LONG COVE IN. HI IS
THERE ANY OTHER SPEAKERS AT THE
GALLERY. ALL RIGHT SO WE'RE
GONNA MOVE ON TO THE PHONE
SYSTEM PLEASE. SO LET'S SERVE
MODERATOR- WILL YOU PLEASE OPEN
THE LINES AND- CALL FOR MEMBERS
OF THE PUBLIC WHO WISH TO MAKE
COMMENTS AGAINST THIRTY SECONDS
WE DO HAVE A HARD STOP AT THREE
THIRTY. WHICH IS UNFORTUNATELY
ONLY- GIVEN THE TIME GALLERY
WELL I HAVE A COUPLE MINUTES
LEFT BUT AT LEAST IT MIGHT GIVE
THEM ENOUGH AT LEAST SOME PEOPLE
THE OPPORTUNITY TO BE ABLE TO
SPEAK. THE MODERATOR IF YOU CAN
PLEASE OPEN THE LINES. YES THANK
YOU MISTER CHAIR LADIES AND
GENTLEMEN IF YOU WISH TO PROVIDE
PUBLIC COMMENT PLEASE PRESS ONE
BUTTON ZERO FIRST WE WILL GO TO
LINE THIRTY NINE. WELCOME. YOU
KNOW TO LIMIT OF THAT RULE YOU
HAVE NO RIGHT TO CUT THE- WE
PEOPLE. IT YOU'RE GETTING WHICH
- WE YOUR JOB BUT BECAUSE. THE
TRUTH IS REITER THIS UNFORTUNATE
NOT ON THE TOP OF THE HERE NECK
COMMENT. EXPLAINABLE GO TO LINE
THE- SIXTY EIGHT. MY NAME IS
TRISH NEW YORK YOU DO NOT
REPRESENT ALL OF US WE THE
PEOPLE VACCINES HAVE BEEN PROVEN
. MANY PEOPLE WHO WORK HERE THEY
ARE NOT AFFECTED AND YES THIS
DOES RELATE FROM JUAN COLE THAT
. I. AND NEXT WE'LL GO TO LINE
SEVENTY SIX THANK YOU.
ONE SEVENTY SIX AT THIS
CONNECTED NEXT WE'LL GO TO LINE
ONE HUNDRED TWENTY FOUR. THANK
YOU VERY. YES YES. OKAY MY NAME
IS RACHEL I'M NOT AFFILIATED
WITH ANYBODY OFFERS ALSO LET'S
SEE YOU'RE MAKING CORRELATIONS
AND STATISTICAL CONCLUSIONS THAT
DON'T EXIST- KIND OF MANY
DIFFERENT FACTORS YOU TALK ABOUT
YOU NOT KNOWING THAT THE BEER
IMPERMISSIBLE ARE A FACT OF ONE
CODE WE ALSO DON'T KNOW THAT
ABOUT THE VACCINE NOBODY DOES
BECAUSE THERE'S BEEN NO LONG
TERM STUDIES BUT THERE HASN'T
BEEN A THIRTY PAGES THIRTY PAGES
A NEGATIVE SIDE EFFECT BUT JUST
GOT RELEASED FROM PILAR NOT TO
MENTION THE MYOCARDITIS BUT IT'S
SO BAD IN CHILDREN AT ORANGE
COUNTY IS NOW HOW WE DETECT
CHILDREN BEFORE THEY PLAY
SPORTS. WE DO NOT WANT. MANDATE
PEOPLE THINK THEY YOU- AND FOR
WE ARE NOW NOW THREE THIRTY WE-
AND FORTY WE'RE NOT ABLE TO TAKE
ADDITIONAL PUBLIC COMMENTS
VERBALLY HOWEVER YOU CAN SUBMIT
PUBLIC COMMENTS TO THE
COMMITTEE- THROUGH OUR WEBSITE
OR BY EMAIL AND SO IF YOU WISH
TO SUBMIT COME PUBLIC COMMENT
PLEASE DO SO FOR THE RECORD
AGAIN I WANT TO THANK ALL THE
INDIVIDUALS WHO PARTICIPATED
THAT DAY- AND- AGAIN WANT TO
THANK ALL OF THE PRESENTERS- YOU
PROVIDE US VERY VALUABLE
INFORMATION THAT WE NEED AS OUR
LEGISLATURE AND THE STATE
GOVERNMENT NEEDS TO. FIGURE OUT
HOW WE'RE GOING TO ADDRESS THE
NEEDS OF PEOPLE WHO HAVE LONG
COVE IT HOW WE'RE GOING TO TRY
TO PREVENT ADDITIONAL CASES OF
COVERT THAT MAY LEAD TO LONG
COVE IT BUT ALSO ENSURE THAT
PEOPLE WHO HAVE LONG COVE IT
RECEIVES SERVICES THAT- THEY
NEED SO AGAIN I WANT TO THANK
EVERYONE FOR THEIR PATIENCE AND
COOPERATION AND AGAIN AND FOR
ANYONE WHO WISHES TO MAKE
COMMENT BUT UNFORTUNATELY WAS
NOT ABLE TO BECAUSE OF OUR TIME
LIMITS. YOUR COMMENTS
SUGGESTIONS ARE IMPORTANT TO US
AND PLEASE- WE LIKELY YOUR
TESTIMONY INDIVIDUAL HEARING
RECORDS SO PLEASE SUBMIT THEM TO
IN WRITING TO THE SENATE
COMMITTEE ON HEALTH SO AGAIN-
WITH THAT ANY FINAL REMARKS-
CENTER NEWMAN FOR A GERMAN. NINE
THANK YOU SENATOR THANK YOU
AGAIN THANK YOU TO ALL THE
PRESENTERS REALLY APPRECIATE YOU
TAKING OUT YOUR TIME. AND WITH
THAT WE HAVE CONCLUDED THIS
AGENDA OF THIS INFORMATIONAL
HEARING ON THE LONG HAUL
PREPARING FOR THE IMPACTS OF
LONG TOBIN- THIS COULD BE THE
HEARING OF THE SENATE COMMITTEE
ON HEALTH AND THE SPECIAL
COMMITTEE A PANDEMIC EMERGENCY
RESPONSE IS NOW ADJOURNED. THANK
YOU.