Update:
It's been a busy
time in the autism community. With the IOM Committee decision, omnibus
proceedings, and a Frist bill coming in the spring, we will bring you
frequent updates. Should you have any information you feel is
pertinent, please let us know by writing to
NAA@Nationalautismassociation.com, or
simply go to
www.NationAutismAssociation.org.
As many of you are
aware, the Wall Street Journal re-published their 'Autism and
Vaccines' editorial yesterday. It is our feeling that attacking
parents and Senators, who are simply looking out for the best interest
of our children, is as inappropriate as any harassing or threatening
letters they may have received. We do not wish for Wall Street
Journal to receive these types of letters, rather, the letters
we've seen from many of you which have been very sincere, informative,
honest.
Many have said we
should allow them to have their opinion. We're asking those
individuals to let us have ours. We simply cannot and will not accept
discrediting-attacks on the majority of parents who did nothing wrong.
We also cannot allow for a publication to create divide between autism
organizations. NAA fully supports NAAR in whatever decisions they see
fit. As we have our beliefs, they have theirs and we respect this. No
autism organization is out to hurt the children.
Members of Capitol
Hill, who are likely to read such a publication as Wall Street
Journal, need to see the facts, which Wall Street Journal,
unfortunately, has failed to provide. They also need to hear
our stories which are based on first-hand knowledge and honest
experiences. This is something that cannot be manipulated.
Our wish is not to
argue back and forth with Wall Street Journal, but to reveal
factual information for a safer tomorrow. In fact, we had hoped their
first editorial would have been their last based on hundreds of our
informative responses. Unfortunately, a total of four editorials, all
of which discredit our beliefs and our character, have been published.
As parents who seek positive change, even if it's not all at once, we
simply wish to be heard, and most of all, be heard in a way that will
help our children while preventing others from being injected with the
same toxins as our children.
If interested,
please see our response below. We realize it may not please everyone,
but have tried our best to stand up for ourselves and our children,
while hopefully changing misconceptions that may have been gained with
Wall Street Journal's very one-sided articles.
We've also included
an editorial from a parent, as well as a story written by a very
special mother who is hoping you will spread the word on an important
study. You all have been amazing. The stories, responses and honesty
we've seen from all of you has touched us deeply. You can view some of
your responses and NAA's response
here: All of you make it that much easier for us moms, dads and
grandparents to keep going.
Sincerely,
NAA Staff
In response to
Wall Street Journal's 'Autism and Vaccines.'
Click here
to review the twice-published write-up.
PRESS RELEASE
February 17, 2004
WALL STREET JOURNAL
CONTROVERSY ENSUES, PUBLICATION BRINGS SOME PARENTS OF DISABLED
CHILDREN HEARTACHE
Accusations from Wall Street Journal
Targets Special Needs Community, Many Parents Say They Went Ignored,
and the Financial Publication Went Too Far
New York, NY
– The national publication
Wall Street Journal has stirred up much heartache in one special
needs community. A national autism not-for-profit/not-for-salary
organization reported today that the financial publication has caused
many parents of disabled children extreme distress, some even to the
point of tears, after publishing the same negative article twice
within a seven-day span.
The write-up,
published February 9th and again yesterday, accuses
thousands of mothers, fathers and grandparents of stifling efforts to
help their own special needs children and grandchildren while labeling
them as “nasty,” “small,” “loud,” and “antagonistic.” This comes after
thousands responded to two earlier Wall Street Journal
editorials in December concerning vaccines and the mercury-autism
link. Parents, family and friends sent letters to the publication
citing multiple inaccuracies for which they feared might mislead the
public. A large percentage of the autism community believes the
dramatic increase in autism is due to the FDA-admitted mistake of
using the neurotoxin “ethylmercury thimerosal,” an infant-vaccine
preservative, at hundreds of times the safe mercury levels starting in
the early 90’s. Much of the current research suggests there is a link
and is under review by the Institute of Medicine (IOM), which held a
hearing last Monday, February 9th.
As a result of the
responses, Wall Street Journal lashed out at all parents that
support the mercury-autism connection, while accusing parents of
lashing out at them with “threatening” and “harassing” letters. JoAnne
Pike, President of the National Autism Association, is amazed the
publication would go so far. “The majority of these mothers, fathers
and relatives did absolutely nothing wrong, and only responded to the
Wall Street Journal in a very sincere and heartfelt manner,”
she says. “Their responses, of course, went unmentioned by WSJ.”
The initial December
articles challenged the parents’ theory while suggesting drug
companies shouldn’t be held accountable for any mistakes because they
are too “few,” and that three United States Senators, Collins (R-ME),
Chaffe (R-RI), and Snowe (R-ME), were responsible for the flu-vaccine
shortage. “Vaccine-makers produce similar amounts of shots every year,
and manufacturers are few because they, themselves, chose to be
through acquisitions and mergers,” says Laura Bono, mother of a
special needs child. “It wasn’t fair for WSJ to blame, degrade and
even bully those Senators who put themselves on the line to help the
disabled children in this country keep their rights. It was a cheap
shot. We simply responded to Wall Street Journal by stating
their facts were incorrect, but they followed up with a similar
write-up in late December, and our comments went ignored,” she said.
Pike, Bono and many
others fear that thousands of parents are being blamed for the poor
judgment of a few angry readers, and say they do not advocate for that
sort of behavior, “These mothers and fathers are under extreme stress,
even so, harassing or threatening responses are inexcusable,” says
Pike. “On the other hand, the majority of the parents who only wrote
very telling responses are being attacked as well. Some moms, who only
had the best intentions in writing sincere letters, have called us in
tears over how all of this may affect the children,” she says. “I
doubt Wall Street Journal writers are dealing with the same
stresses here and their actions are equally inexcusable.”
Most parents were
upset initially because Wall Street Journal stated that mercury
is out of all childhood vaccines, which, according to vaccine
manufacturers, isn’t true. As a result, many fear parents may not know
to ask for thimerosal-free vaccines. Just last week at IOM’s hearing,
one Columbia University professor showed video of rats that developed
fatal repetitive behaviors after being injected with thimerosal.
“Along with stating the wrong information about thimerosal, WSJ
insinuated that lawsuit-money is the biggest motivator here which is
way out of line,” says parent Lori McIlwain. “Parents continue to work
for free and even spend their own money traveling to Washington,
fighting for the removal of thimerosal, fighting to make vaccines
safer,” she says. “I’m wondering if the WSJ writers are working for
free.”
McIlwain also
doesn’t understand why the publication seems so threatened by parents
who simply want safe vaccines, and help for their own children. “They
call us small, yet state we’re ‘silencing’ the scientists,” says
parent Lori McIlwain. “How does one go about silencing the CDC
exactly?” she asks. “If anything, it’s the exact opposite…we’ve
continued to ask for open and fair debates to no avail, and recently
were turned down after supporting a Congressional office in requesting
the postponement of last week’s IOM only until an investigation into
the latest CDC data was completed,” says McIlwain. “We’re not
‘scaring’ parents as Wall Street Journal suggests…parents are
bright enough to make their own decisions, given the right
information…in any case, we’re not attempting to destroy the
vaccination program, rather make it better for America’s children.”
Many say the Wall
Street Journal has gone way too far by categorizing thousands in a
negative light, “So many of these moms and dads didn’t deserve what
Wall Street Journal did,” says Leslie Weed, mother of a special
needs child. “My response simply explained the trials of my daughter
following thimerosal, along with many facts Wall Street Journal
missed in their write-up.”
Wendy Fournier
agrees. She believes her little girl was injured by thimerosal. “Even
members of Congress are questioning the validity of a recent CDC
study…why is WSJ attacking us and calling us ‘anti-vaccine’ by simply
fighting for the right information? I don’t understand,” says
Fournier. “I’m not sure these people realize the pain our children
endure daily, or the pain we as parents endure watching them suffer,”
she says. “Do they know anything about having a sick child?” She, too,
believes threatening and harassing letters are extremely
inappropriate, but wonders why the majority of fact-based responses,
like hers, went unmentioned by WSJ.
Today, Wall
Street Journal posted responses to the latest autism
write-up. Most reflected WSJ's negative slant. One letter-writer went
so far as to call the parents of autistic children "ultra reactionary,
vicious, maniacal activists." Others seemingly based their opinions
on completely false information regarding the National Vaccine Injury
Compensation Program reported in WSJ’s editorials as fact. "We believe
people are entitled to differing opinions," said Pike, "but it seems
WSJ has mostly chosen to print responses that best reflect their own
viewpoint and inaccuracies. Many fact-based informative letters to the
editor from parents of autistic children, even those with a low
word-count, went unpublished yet again. How can we promote positive
change if the facts are ignored?"
WSJ has screamed
they’re entitled to their opinion and say that parents haven’t
respected that, but parents say WSJ is doing the exact same thing to
them, and attacking all of them as a whole.
Many wonder when WSJ
will focus on their own area of expertise—reporting what the rise in
autism will do America’s economy in the coming years. The Centers for
Disease Control and American Academy of Pediatrics reported yesterday
that autism now affects 1 in 166 children…something that will very
well cost tax-payers trillions. “I don’t have four-million dollars to
care for my son,” says Lori McIlwain. “I don’t expect others to pay
for it—my husband and I will do our best, but many have absolutely
nothing and their children can’t even get speech therapy,” she says.
“Meanwhile drug companies spend millions on advertising and pull in
more millions from autism drugs like Strattera—are they giving
autistic children that drug for free? WSJ is accusing us of trying to
make money off drug companies, when actually, drug companies are
making money off the suffering of our children, and, in the end,
American tax-payers will have to pay trillions.”
Instead of sending
responses to the Wall Street Journal, many mothers and fathers
say they will now send both their December and current responses to
competing publications, local media, state legislators, and
advertisers.
For more information
on the latest autism numbers and research, visit
www.nationalautism.org or
www.safeminds.org.
Just One
Person's Opinion: The IOM
Time for our own editorial
perhaps—the honest kind. I mean, I'm an honest person, or at least try
my darnedest to be. I'm sure you're honest, too, as most parents with
sick children are. I'm too proud to be a hypocrite and too open-minded
to be too proud. So what I'm about to say might come off as some
sarcastic rant as a result of four years of sleep deprivation, but I
can assure you, every bit of it is based on my own observations. Lack
of sleep doesn't make them any less honest.
Three rows back to the right is where I sat that day. The Institute of
Medicine's hearing on vaccines and autism. When we walked in we were
told the IOM committee had received death threats from
parents—security was increased. I personally wasn't frisked or sent
through a metal detector, no one was come to think of it. But I'm sure
some person out there was dumb enough to make that sort of call. A
threat on someone's life is inexcusable. As a result of this lame
action, we all get painted with the same brush---the "crazy,
irrational" one. Heck, we don't even know if it was a parent of an
autistic child. That's what we were told, but how do we know for sure?
Could have been anyone. Of all people, we should know that you can't
simply report something and be given the benefit of the doubt. The
facts must present themselves first. Either way, credibility gets lost
with us. What a shame. One reporter at the IOM said they received
11,000 "nice" e-mails from parents of autistic children after they ran
a very balanced story. I guess we're not so small after all. I guess
we're not all hateful either.
Read entire
editorial
here
Frist is Back?
We’ve been informed
Frist is not planning to attach a vaccine provision to this bill (see
below), but that he is planning to put something out this spring. We
will keep you posted.
From Frist:
“We are in crisis,
and I need your help this week.
As you well know,
our broken medical litigation system is causing a national health care
access crisis. Across the nation, doctors are being forced to drop
services, move or leave practice altogether. Ultimately, it is
patients who are hurt. In fact, the AMA now lists 19 states where
access to care is seriously threatened. The situation bad, and it is
getting worse.
As Majority Leader
of the United States Senate, I am committed to addressing this growing
crisis head on. Last year, a good comprehensive medical litigation
reform bill passed the House of Representatives. When I tried to bring
a similar bill before the United States Senate in July, a minority of
Senators used a filibuster to block us from even debating the
legislation.
On Monday, February
23, I am once again bringing legislation to the floor of the United
States Senate to begin to address the medical litigation crisis. The
“Healthy Mothers and Healthy Babies Access to Care Act" (S. 2061) is
modeled on successful reforms with a proven track record, like those
in place in the State of California. The difference is that S. 2061
focuses primarily on OB/GYN services. We chose to focus this
legislation on OB/GYNs and other doctors who perform these services to
highlight the acute patient access problems in this field of medicine.
We have not given
up on comprehensive reform. Rather, this legislation will keep the
issue in the national debate and serve as a step toward passing the
broader reforms that we all know are necessary to protect patients.
I need your help
today! The personal injury lawyers and opponents of reform are working
hard. Reluctant Senators will only be persuaded to vote with us if
they feel political pressure at the local and grass roots level. I
urge you to contact your Senators and encourage them to vote for this
needed reform. I also encourage you to use whatever avenues of
communication you have to get the word out broadly about the need for
the United States Senate to Act. Talk to your friends and neighbors,
e-mail your friends, or write a letter to the editor of your local
paper. Together, we can help America's patients.”
Val's
story
When I
read the fundraiser information from the National Autism Association
for Dr.Krigsman's research, I felt compelled to share Alex's story
with others to show the necessity and emergent action needed to fund
this project.
Alex was born April 11, 1995. He had a total normal development up
until 15 months. He crawled, walked and talked early, everything was
fine. A very bright child, at around a year and a half he had a 60-70
word vocabulary and was starting to put two and three words together.
I have him on video singing "happy birthday dear Jacob" to his
brother, everything was oh so normal, oh so nice.
Read entire story here
http://www.nationalautismassociation.org/alexstory.php
Dollar Drive
The National Autism Association’s annual
Dollar Drive has begun! Our goal is to get thousands
of families to donate a buck, that’s right, just $1. Your dollar will
entitle you to your own shooting star with a name or your personalized
wish (ten-word maximum) on the star to be displayed on our website.
We’ll be offering different sized stars for different sized
donations.
Click here to view our shooting stars
page. As always, you can remain anonymous if you
so choose.
Click
here
to learn more
Total
donations collected to date for our dollar drive $1104.00
Total donations
collected to date for the Autism/GI Study $2677.07
Please ask everyone you know for just $1.
You can submit your donations (no cash please) to:
National Autism Association
P.O. Box 1547
Marion, SC 29571
or anyone can donate
online at
http://www.nationalautismassociation.org/proddetail.php?prod=DollarDrive
