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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Monday, December 3, 2001
INDEX:
* Juvenile Vaccine Problems Worry Officials and
Doctors
* IMFAR
Autism Research Presentations
* "Charter School Commission Hearings
Set"
* POEM: My Child's Behavior
* Dear
Editor---Telegraph---Anti-MMR Doctor Is Forced Out
* Yet
more evidence released linking Autism to the MMR Vaccine
* CAN
Orange County Chapter Parent Seminar - 12/15 in Newport Beach
* Autism
Society of America-Northeast Illinois Chapter President
Treasurer-Autism Society of Illinois
******************************
Juvenile Vaccine Problems Worry
Officials and Doctors
By ROBERT PEAR
ASHINGTON,
Dec. 1 — Federal and state officials and doctors across the country are
expressing alarm at shortages, delays and uncertainty in the production and
supply of major childhood vaccines.
The delays and shortages have forced states to ration vaccines, set new
priorities and revise their immunization policies and requirements. Colorado,
for example, has reduced the number of shots a child must have to enroll in
school or in a day care center, and as a result, some children have less
protection against diseases like diphtheria and whooping cough.
Dr. David R. Johnson, chief medical executive in the Michigan Department of
Community Health, said, "We don't know from month to month, week to week
or day to day what will happen to our vaccine supply.
In a bulletin sent to states this week, the federal government reported shortages
of vaccines against 4 of the 11 diseases preventable through routine
vaccination of children: diphtheria, tetanus, whooping cough and pneumococcal
disease, which can cause meningitis and pneumonia. In addition, the government
said, many doctors have experienced serious delays in the delivery of vaccine
for six other diseases: influenza, chicken pox, measles, mumps, rubella and
hepatitis B.
Two of the largest manufacturers, Merck & Company and Wyeth Lederle
Vaccines, a unit of American Home Products Corporation, acknowledged the
problems. Merck said it was "experiencing intermittent shortages of some
of our vaccines," including the one for measles, mumps and rubella. Merck
said that it curtailed vaccine production over the summer because it was making
changes at its manufacturing plant in West Point, Pa.
In a letter to doctors, Wyeth recently apologized for the inconvenience caused
by shortages of Prevnar, its vaccine for pneumococcal disease. Douglas Petkus,
a spokesman for Wyeth, said demand had exceeded expectations, and the company
had to change manufacturing methods at a plant where it experienced a
bottleneck.
The federal government estimates that the nation needs 1.4 million to 1.6
million doses of Prevnar each month to protect infants and toddlers against
life-threatening diseases caused by the pneumococcal bacteria. But, it says,
the supply averaged only 707,000 doses a month in September and October.
Children are supposed to get four doses in the first 15 months of life.
Some manufacturers have halted production of vaccines after concluding that
they were unprofitable. Drug companies are not required to inform the
government they intend to stop making a vaccine.
Lawsuits used to be a major problem for manufacturers, but the level of concern
has dropped sharply since 1986, when Congress created a no- fault system to
compensate people injured by childhood vaccines. Under the program, the
government reviews and pays claims for injuries, using money derived from an
excise tax on every dose of vaccine.
Now, members of Congress are asking whether the federal government ought to
play a larger role in managing the supply of vaccine. The Institute of
Medicine, an arm of the National Academy of Sciences, said last month that the
government should create a National Vaccine Authority to help companies produce
and distribute vaccine.
Senator Jack Reed, Democrat of Rhode Island, said the idea was worth
considering because "the vaccine shortages pose a real threat to our
public health system."
Dr. Bruce A. Weiss, chief medical officer at AvMed Health Plan, a nonprofit
health maintenance organization in Florida, said the shortages could undermine
years of work.
Two of the four companies that made vaccine against diphtheria, tetanus and
whooping cough — Wyeth and North American Vaccine, now part of Baxter
International — have dropped out of that market.
Federal health officials said the shortages of this vaccine might continue
until late next spring.
http://www.nytimes.com/2001/12/02/health/02HEAL.html?todaysheadlines
******************************
IMFAR Autism Research
Presentations
[From the CAN Alert email list.]
Researchers from around the world presented
their latest findings on autism at the recent inaugural International Meeting
For Autism Research (IMFAR). Held at the San Diego Convention Center as a
satellite meeting of the Society for Neuroscience Meeting, IMFAR was jointly
sponsored by the Cure Autism Now Foundation, the U.C. Davis M.I.N.D. Institute,
and the National Alliance for Autism Research (NAAR).
Approximately 120 researchers presented their
findings in a slide/lecture format. In addition over 100 poster presentations
were displayed summarizing other autism-related research developments. The
concurrent slide/lecture presentations were grouped into subject categories
such as Treatment, Neuropsychology, Genetics, Diagnosis, Neuroimaging,
Gastroenterology, Immunology and Animal Models.
Many presentations, including a number of those
mentioned below, involved researchers funded by Cure Autism Now in the present
or past, as well as scientists serving on the Cure Autism Now Scientific
Advisory Board. The following is a brief summary of a few presentations in each
category, as a sampling of the broad range of autism related research currently
being reported.
Abstracts on all the research presentations at
IMFAR can be viewed at www.imfar.org.
Neuropsychology
Dr. Isabelle Rapin et al, of the Albert Einstein
College of Medicine in New York presented evidence for language disorder
subtypes at school age in children with preschool DSM-IIIR autistic disorder.
Dr. Rapin re-evaluated at school age a number of autistic children who had been
studied several years earlier. Her findings showed persistent phonologic
deficits in some children with autism, but their prevalence appeared to
decrease with age. Furthermore, the language disorders of children on the
autistic spectrum fell into identifiable subtypes.
Adaptability is a temperament characteristic
that refers to the ease with which an individual modifies behavior to adjust to
changes in social context. Hepburn, Rogers, Stone and Shub of the University of
Colorado Health Sciences Center in Denver hypothesized that low adaptability
may be an early manifestation of the restricted interests and strict adherence
to routines that distinguish autistic children from other developmentally
disordered children after age 3. The researchers conducted tests comparing the
adaptability of the autistic children with other developmentally disordered
children at ages two and five. They found that the two year olds with autism
were considerably less adaptable than all their peers. They also discovered
that the younger autistic children were considerably less adaptable than the 5-year-old
autistic children.
Dr. D.J. Scambler et al., also from the
University of Colorado Health Sciences Center presented findings on emotional
responsivity in children with autism and other developmental disorders. They
measured responses to emotions expressed by others in children with autism,
children with global developmental delays, and typically developing children.
The children with autism expressed less emotional responsivity than did
children in the other two groups, both in frequency of emotional contagion and
degree of hedonic tone change across six emotionally charged tasks. The
researchers believe that their findings provide focal points for investigation
of the genetics and neuro-psychology/neuro-physiology of autism.
A study performed at UCLA Graduate School of
Education and UCLA Child Psychiatry in Los Angeles compared diadic
(adult-child) and triadic (adult-child-object) social interactions of children
with autism. C. Whalen, C. Kasari, and T. Paparella observed children from 40
to 72 months with their caregivers in play situations with and without toys.
Their results suggested that children with autism may demonstrate more severe
social deficits with their caregivers in triadic interactions (with toys) than
in diadic interactions (with caregivers and no toys) compared to typically
developing children.
Treatment
J. M. Winter and L. Schriebman of the Autism
Research Laboratory at UC San Diego, La Jolla, California presented their
findings on fathers as caregivers for children with autism spectrum disorders.
In making the presentation, Jamie Winter said that the findings confirmed that
there was generally more maternal involvement in the caretaking of children
with autism. The fathers surveyed gave as reasons for less involvement that
they felt the mother was more competent, and that fathers often lacked both the
time and understanding of the child. But the survey also revealed that 89
percent of the non- participating fathers indicated a willingness to
participate if alternative interventions more suited to fathers were developed.
The researchers concluded that the different requirements and preferences of
fathers in training formats and programs needs to be addressed.
Several presentations featured the results of
various clinical drug trials being used in the treatment of autism. Holmes et
al., in Private Practice at Baton Rouge, Louisiana, and at the Tulane
University Medical Center in New Orleans, are conducting a trial with over 400
autistic patients for the removal of heavy metals. They are using
meso-2,3-dimercapto succinic acid (DMSA) and lipoic acid (LA). In general,
noticeable improvements in language, self-help skills, interaction and core
autistic features were not seen until the patient has been on DMSA with LA for
two to three months. The majority of children excreted mercury, lead and other
metals, suggesting that there may be a generalized problem with metal
metabolism. The researchers reported that younger children respond well to this
therapy with noticeable improvement in function.
Genetics/Genomics
A presentation of particular interest to
researchers, parents and friends of Cure Autism Now showed the results of a
quantitative genome scan of autism endophenotypes: Language and OCD. The study
was conducted at the Departments of Neurology and Human Genetics at UCLA, Los
Angeles, by M. Alarcon, R.M. Cantor, the AGRE Consortium and Chairman of its
Steering Committee Dr. Dan Geschwind. The Autism Genetic Resource Exchange
(AGRE) was developed by Cure Autism Now. It is the first truly collaborative
autism gene bank offering DNA, serum samples and cell lines from an
ever-increasing collection of well-characterized families to qualified
researchers worldwide.
Since autism is comprised of deficits in several
distinct domains, the researchers hypothesized that a quantitative analysis of
cognitive and behavioral endophenotypes with high familiarity would increase
their power to detect susceptible loci. Using the AGRE sample, the research
findings suggest that the putative susceptibility gene on chromosome 7 may be a
quantitative trait loci (QTL) specific for the language deficits associated
with autism.
Dr. A.M. Persico and a large group of
international researchers presented their findings on the reelin pathway and
autistic disorder. Reelin plays a critical role in the development of several
brain structures putatively altered in autistic brains. This study showed
preferential transmission of APO-E2 alleles to both affected and unaffected offspring
in 235 trios, suggesting that APO-E2 may confer protection from either
infertility or miscarriage in families with an autistic proband. These results
were discussed in reference to the role of reelin as a regulator of cell
migration.
Diagnosis/Epidemiology
Dr. Lisa Croen presented findings on the
epidemiology of autism in California. Children with full syndrome autism born
in California from 1987 through1994 were identified from the Department of
Developmental Services electronic data files and compared to the total
California population of live births. Dr. Croen reported that from a live birth
population of greater than 4.5 million, 5,038 children with autism were
identified. This represents a prevalence rate of 11 in 10,000 live births.
Adjustment risk estimates indicated at 4-fold increased risk for boys and an
approximate 1.5-fold increased risk for multiple births. Noting that children
born to immigrant mothers had similar or decreased risk compared to California
mothers, Dr. Croen said that environmental factors associated with these
demographic characteristics may interact with genetic vulnerability to increase
the risk of autism.
Neuroimaging
As was noted in the neuroimaging presentation in
the closing “State-of-the-Science” symposium at IMFAR one of the
well-established facts about autism in recent years has been the related
increase in brain volume and head circumference. In a conference slide
presentation, Dr. Eric Courchesne of the Laboratory for Research on the Neuroscience
of Autism at the Children’s Hospital in La Jolla, California, presented his
findings on the subject. Dr. Courchesne and his colleagues recently reported on
abnormally large brain volume in autistic toddlers. In their most recent study,
the researchers examined whether this abnormal overgrowth was present at birth,
by obtaining birth head circumference measures from hospital records. The
estimates of brain volume of the autistic babies was not different from
published MRI brain volumes of normal neonates. Dr. Courchesne concluded that
the study suggests that in autism, there is abnormally accelerated growth of
the head and brain during!
!
the first years of postnatal life.
Cure Autism Now Scientific Review Committee
member Dr. M.K. Belmonte of the Cognitive Neuroimaging Laboratory at McLean
Hospital in Belmont, Massachusetts, presented findings on fMRI for generalized
arousal as a substitute for early selection during conditions of shifting
visual spatial attention. Preliminary data on autism from the study shows an
absence of lateralized attentional activity in the occtipitotemporal region,
and a high level of lateralized attentional activity intraparietally. Dr.
Belmonte suggested that in autism during conditions that demand rapid change in
attentional set, generalized arousal substitutes for impaired early selective
attention, leaving irrelevant stimuli to be suppressed at a later stage.
Gastroenterology/Toxicology
Eight presentations explored the incidence and
significance of gastrointestinal (GI) symptoms among children with autistic
spectrum disorders. J. Perrault and a group of researchers from the Mayo Clinic
in Rochester, Minnesota, presented their findings characterizing
gastrointestinal dysfunction in autistic children. They evaluated 126 children
in a clinical trial lasting 12 weeks. Twenty-one percent of the subjects had an
extensive constellation of GI symptoms. Diarrhea was present in 42 percent of
the patients, 29 percent had abnormally low chymotrypsin in stool, and 26
percent had elevated calprotectin in stool. Dr. Perrault said that overall, the
studies provide suggestions of specific abnormalities, either in pancreatic
secretion or mucosal inflammation.
C. Halloway and a group of Arizona-based
researchers presented preliminary work on heavy metal toxicity in people with
autism. They hypothesize that there may be a statistically significant
association between levels of heavy metal toxicity and the severity of autism,
as measured by the GARS. If such an association is observed, it could warrant
further research into the mechanism of effect that involves exposure to one or
more heavy metals and the development of autism.
Sensorimotor Processing
Cure Autism Now Scientific Advisory Board member
Dr. Geraldine Dawson of the University of Washington presented findings on
high-density event-related potentials to fear and neutral facial expressions by
children with autistic spectrum disorders. Dr. Dawson is also a Cure Autism Now
research grantee. In this study, high-density event-related potentials (ERPs)
were used to measure brain activity in response to digitized photos of the same
woman posing either a fear or a neutral facial expression. Previous fMRI
studies have shown activation of the amygdala by fear expressions. Dr. Dawson
said that the present finding that typically developing children, but not
children with autism, show differences in the right temporal ERP component to
fear stimuli supports the hypothesis that dysfunction of the amygdala is involved
in autism spectrum disorders.
Animal Models
Eight presentations explored the use of animal
models in autism research. Cure Autism Now grantee S. Akbarian of the Whitehead
Institute for Biomedical Research in Cambridge, Massachusetts presented
findings on the expression pattern of the Rett disease gene MECP2 in the
developing and mature primate prefrontal cortex, complimented by comparative
studies on mouse cerebral cortex. The researchers concluded that MECP2
expression in rodent and primate brain is not limited to the developmental
period. MECP2 may be important for neuronal maintenance both in the developing
and in the adult brain. This is consistent with their observation that mutant
mice with a neuron-specific deletion of Mecp2 in the early postnatal period
developed a Rett-like phenotype in adulthood.
Patricia Rodier of the Departments of OBGYN and
Pathology at the University of Rochester School of Medicine in New York spoke
about stereology and the inferior olive (a part of the brain) in an animal
model of autism. Reduction of Purkinje cell (PC) numbers is the most frequently
reported abnormality in postmortem studies of individuals with autism. Exposure
of rat embryos on the 12th day of gestation to sodium valporate (NaVP), a drug
known to increase the risk of autism, leads to reduced PC numbers and changes
in cerebellar volume. The most likely candidate for a structure whose
alteration might disrupt cerebellar development is the inferior olive. So the
researchers compared the inferior olives of exposed rats and controls. They
found that neuron density was normal in treated animals, but the shape and
volume of the inferior olive was significantly altered paralleling observations
in human cases of autism. They suggest that autism may result from an early
injury to th!
!
e inferior olive.
Immunology
Eight presentations explored the role of immune
dysfunction in autism and related subjects. Cure Autism Now grantee Dr. Andrew
Zimmerman presented on the increased incidence of HLA-B60 and maternal DR-4 in
autism. Since autoimmune disorders frequently have human lymphocyte antigen
(HLA) associations, genes coding for HLA may provide markers of genetic
determinants for brain development. Dr. Zimmerman and his colleagues found that
HLA-B60 and DR-4 may serve as markers for genes on chromosome 6p, possibly in
linkage disequilibrium, that are important for development and function of both
the immune and nervous systems. Maternal HLA-DR4 might predispose the fetus to
a maternal immune reaction or infection. High resolution typing may clarify
these relationships in autism.
D.A. Trauner et al., of UC San Diego School of
Medicine in La Jolla, California have explored markers of immune function in
children with autism and epileptiform EEG abnormalities. They found that these
children had an increased production of pro-inflammatory cytokines by CD-4+ T
cells, suggesting an altered immune system. Studies are underway to determine
whether these immune changes predict response to steroid treatment.
******************************
"Charter School Commission
Hearings Set"
from MIRS
The Charter School Commission, created by the Michigan
Legislature to review all aspects of public school academies in Michigan, will hold
two public hearings in December. The first will be 7 p.m. Tuesday, Dec. 11 at
Focus Hope, 1400 Oakman Blvd. in Detroit. The second will be Wednesday, Dec. 12
at Eberhard Center, 301 W. Fulton St. in Grand Rapids.MSU President Peter McPHERSON
is chairman of the commission, which is composed of seven other members,
including state Superintendent Tom WATKINS and Michigan Education
Association president Lu BATTAGLIERI. The commission is expected to
report its findings and recommendations to the Legislature, Gov. John ENGLER,
and the public in February 2002
******************************
POEM:
My Child's Behavior
My child's behavior
Is not a discipline issue.
It is not a moral issue.
It IS a neurological issue. The question is not,
"How can we punish this child
"so as to extinguish this behavior?"
He has been punished enough by fate. To cease one behavior,
He must have another at his command,
To replace the old.
AS children do not have this skill. The question thus becomes,
"How can we teach him NEW behaviors
"To compensate for this disability,
"So that he, and others he meets, are both enriched?" This is a
teaching issue. Do not be afraid to gently speak to him,
To model patience and tolerance.
If he does not respond right now,
Perhaps he will later. Or perhaps another child will be inspired
To treat others with good will.
Kind words never go unnoticed,
Though my child will never get enough of them.
Anonymous--mother of a child with
Asperger Syndrome
******************************
Dear
Editor---Telegraph---Anti-MMR Doctor Is Forced Out
Dear Editor:
In response to the article titled Anti-MMR Doctor Is Forced Out by
Lorraine Fraser, Medical Correspondent, I would like to say that our
organization will continue to support the research of Andrew Wakefield,
MD, without doubt. I think I can speak for all the parents in the U.S.
and say that we were sadden that the Royal Free Hospital let a doctor of
the calibre of Andrew Wakefield leave.
To those that have opposed Andrew Wakefield's pursuit of science and his
findings, I say that they have gained only a phyric victory. Andrew
Wakefield will be vindicated in the history of medical science and those
that opposed him will not even be relegated to a foot note. What has
happened will only galvanize the parents to press for more science and
the detractors of Andrew Wakefield will find that they will be under
heavy fire for avoiding the truth. This event will not stop the science
from moving forward.
Raymond Gallup, President and parent
45 Iroquois Avenue
Lake Hiawatha, NJ 07034
Tel (973) 299-9162
truegrit@gti.net
http://www.gti.net/truegrit/ http://www.casiquest.org/
******************************
Yet more evidence released
linking Autism to the MMR Vaccine
Todays Sunday Express [UK] has reported on yet another study, the
largest
one to date, showing a causal link between the MMR (Measles, Mumps
and
Rubella) Vaccine and the development of Autism in children.
Dr. Vijendra Singh, lead researcher, studied 200 autistic
children, 50 with
other brain disorders and 100 normal children. He found that nine
out of
10 of the autistic children had experienced a reaction to the MMR
vaccine
whilst only two out of the other children had reacted.
Dr. Singh said his findings highlight the "urgent need"
to re-evaluate use
of the triple vaccine. He added, "It suggests MMR is not safe
in certain
children whose immune systems are not able to cope with the three
vaccines
and this is causing autism.
In related news, new research has shown that the incidence of
autism has
increased 10-fold in the past 10 years. The MMR vaccine was
introduced in
the late 1980s. Many medical experts believe that the MMR places
too much
strain on a childs immature immune system.
Richard Holverson, a London doctor who has just won the right to
administer
separate Measles, Mumps and Rubella vaccines, said, "This
research gives
further weight to a number of different studies that show a link
between MMR
and autism. A large number of parents are continuing to report
their
children developing problems. We cannot just ignore this - it is
almost
impossible that everyone is wrong."
In response to demands from families who want to have the choice
of
administering single vaccines, the Royal College of General
Practitioners
[RCGP - UK] has called on the government to license individual
vaccines and
to scrap the policy whereby doctors receive extra payment for
meeting
vaccination targets. The Australian Vaccination Network urges the
Australian
Government and the AMA, whose policies are a copy of those
criticised by the
RCGP, to follow the lead set by their British counterparts.
More than 2000 families in the UK are currently involved in a
class-action
lawsuit against the Department of Health due to adverse reactions
suffered
by their children during the UKs MMR vaccination campaign. These
reactions
include Convulsions, Autism, Arthritis and a host of other
problems.
As an added irony, Dr. Andrew Wakefield, the whistle-blowing
researcher who
first linked MMR vaccination with Autism in articles published by
the Lancet
in 1998 and again in 2000, announced last night that he has been
asked to
resign from his position at the Royal Free Hospital in London
because his
research results had been unpopular with the medical community.
His
situation reached crisis-point last year when he reported that he
had seen
almost 170 children with a hitherto unknown combination of bowel
damage and
autism linked to administration of the MMR vaccine. That number
has now
reached almost 200, with a waiting list of patients trying to see
him so
long, it threatens to risk breaking the NHSs 18-month limit.
******************************
CAN Orange County Chapter
Parent Seminar - 12/15 in Newport Beach
Orange County Chapter Presents
Parent Education Seminars
Special Education Workshop
Surviving & Getting What you Want in the IEP Process!
Saturday, December 15 ˛ 9:30 a.m. – 4:00 p.m.
Newport Beach, CA
Seminar Topic:
A child diagnosed with autism would seem like it would be work enough!
But,
the battle has just begun once your family obtains a diagnosis. As a
parent
you need to arm yourself with the latest information in how to work with
regional center and your school district effectively in obtaining the
services your child needs. This incredible and informative seminar will
provide you the basic knowledge you need in navigating the waters in Special
Education law. Don’t miss this seminar! Remember a well-informed
parent
can be the most powerful tool used in obtaining appropriate services for
your child! This one day seminar will provide parents the following:
o A introduction into special ed law
o Common mistakes by parents and how to correct them
o Effective communication with your school district /
regional center
o Common mistakes that the regional center / school district
make and how to
spot them
o A mock IEP (Individualized Education Program) Meeting
o An incredible amount of information on your child’s rights
o Two books on special education law
Seminar Speaker:
Paul Roberts – Attorney at Law, Private Practice Huntington Beach, CA
Mr. Roberts is the founding Partner of a Law Firm that specializes in the
representation of the parents of children with disabilities. His firm has
assisted over a hundred families obtain appropriate educational services for
their children from a majority of the school districts and public service
agencies located in Los Angeles, Orange and San Francisco Counties. Mr.
Roberts is a Committee Member for the Juvenile Courts Educational Rights
Project (“JCERP”), a member of the State Bar of California and the United
States District Court, Central District of California. He has published,
“Autism and the Law”, Foothill Autism Alliance Parental Powerpack (2000) and
“A Quick Reference Guide on Commonly Used Statutes for Courts of Limited
Jurisdiction” (2001).
Cost to attend:
For Current CURE AUTISM NOW (CAN)
members: $10.00
For
Non-members:
$50.00
Includes seminar registration & annual CAN membership
Please e-mail Trascee Wilson at twilson@cureautismnow.org or 888-8AUTISM to
receive a registration packet or register over the phone.
******************************
Autism Society of
America-Northeast Illinois Chapter President
Treasurer-Autism Society of Illinois
ILLINOIS STATE BOARD OF EDUCATION ("ISBE") is conducting several
PARENT MEETINGS in the Chicago and suburban areas because of complaints,
particularly by parents of children with AUTISM.
ISBE has scheduled meetings to receive public comment on the delivery of
special education services, IEPs, Extended school year, and the state process
of review and delivery of services.
November 7, 2001
6:30pm-8:30PM
Wilmington High School
715 Joliet Street
Wilmington, IL
Anyone who wishes to provide written comments for the November 7th meeting may
do so by sending
to:
Ruth Brown
Illinois State Bd of Education
100 West Randolph
Suite 14-300
Chicago, IL 60601
or via e mail at: RBrown@isbe.net
******************************
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INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR
GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE
KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED
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VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU
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