________________________________________________________________
Monday,
June 15,
2009
Vol. 13 No. 61
ACTION
ALERT: To Our California Readers:
An
Urgent Call to Action from the Lanterman Coalition -- Our Supports Are
Being Dismantled! Please Act Today www.sarnet.org/doc/Lanterman.doc
PUBLIC
HEALTH
MMR Causes "Autism" – Another Win In US Federal Court
Lawmakers Reveal Health-Care Investments Key Players Have Stakes in
Industry
Many Herbal Products Made By Big Pharma
NEWS
California Budget Crisis: Sweeping Cuts And Changes Proposed For
Thousands With Developmental Disabilities
Illinois Autism Service in Danger
TREATMENT
Melatonin May Counter Sleep Disorders in Autistic Children
RESOURCES
Generation Rescue Announces Rescue Family Grant Program
PEOPLE
Autism View: Fear Is The Enemy
Cops Seeking Caregiver Of Boy Believed To Be Autistic
COMMENTARY
Autism and Toxins
Dr. Baron Cohen Responds
LETTERS
PUBLIC HEALTH
MMR Causes "Autism" – Another Win
In US Federal Court
By childhealthsafety. is.gd/11Siv
Julia a three year old US citizen has
just won substantial compensation in the US Federal Court for
autism-like conditions caused by MMR vaccine – says her mother.
What is different about this case? They
kept the “autism” word out of the case. Many parents in
other US cases have been advised to do this by their US attorneys
in order to succeed: [Vaccine Court: Autism Debate Continues - Robert
F. Kennedy, Jr. and David Kirby 24 Feb 2009 is.gd/11SqK ] Julia’s Mom says:-
". . .after Julia’s last neuro
appointment when her doctor said she had signs of autism. I didn’t want
that 'word' in her records until Julia’s case was decided.
"Julia’s diagnosis was 'Encephalitis
(inflammation of her brain) most likely attributed to the MMR-V
(measles, mumps, rubella, chicken pox) vaccine she had received nine
days previously.'"
If this is what compensation means for
Julia’s Mom think of all the families and children who should never
have got sick in the first place and will never get compensation just
because they used the “autism” word. Julia’s Mom says she was:
"Accepting the loss of the world as I
knew it before she got sick, before my divorce, before I lost my house.
"This is such a huge, huge, huge help
for Julia and my family"
+ Read more: is.gd/11Siv
NOTE: We will provide more
details on this ruling as it becomes available. -editor.
. . . Read, then
Forward
the Schafer Autism Report.
$35
for 1 year - or free!
www.sarnet.org
• • •
Lawmakers Reveal Health-Care Investments Key Players Have Stakes in
Industry
By Paul Kane, Washington Post is.gd/11Rrw
Almost 30 key lawmakers helping
draft landmark health-care legislation have financial holdings in the
industry, totaling nearly $11 million worth of personal investments in
a sector that could be dramatically reshaped by this summer's debate.
The list of members who have personal
investments in the corporations that will be affected by the
legislation -- which President Obama has called this year's highest
domestic priority -- includes Congress's most powerful leaders and a
bipartisan collection of lawmakers in key committee posts. Their total
health-care holdings could be worth $27 million, because congressional
financial disclosure forms released yesterday require reporting of only
broad ranges of holdings rather than precise values of assets.
Senate Majority Leader Harry M. Reid
(D-Nev.), for instance, has at least $50,000 invested in a health-care
index, and Sen. Judd Gregg (R-N.H.), a senior member of the health
committee, has between $254,000 and $560,000 worth of stock holdings in
major health-care companies, including Bristol-Myers Squibb and Merck.
The family of Rep. Jane Harman
(D-Calif.), a senior member of the House Energy and Commerce Committee
drafting that chamber's legislation, held at least $3.2 million in more
than 20 health-care companies at the end of last year.
The reports come on the eve of what is
sure to be a dramatic health-care debate in Congress, beginning with a
key Senate committee hearing Tuesday. With several proposals floating
on Capitol Hill, the legislative battle could overhaul an industry that
represents nearly 20 percent of the national economy.
While no congressional rules bar members
from holding financial stakes in industries they regulate, some ethics
experts suggest that it often creates the appearance of a conflict of
interest, particularly if there is a chance that the legislation could
result in a personal financial boost.
+ Read more: is.gd/11Rrw
• • •
Many Herbal Products Made By Big Pharma
Drug makers Bayer, GlaxoSmithKline and Wyeth also sell supplements
By Marilyn Marchione, Associated Press. is.gd/122Io
Some people who buy supplements to avoid
Big Pharma drug companies may find themselves doing business with Big
Herba, instead.
Some of the same companies that
mass-produce drugs in huge chemical labs also churn out vitamin and
herbal pills sold in bottles with rainbows, sunrises and flowers on
their labels.
Dozens of other supplement makers reap
more than $100 million in annual sales. One of the largest — NBTY Inc.,
on New York's Long Island — sold $2 billion last year in the United
States alone. Its brands include Nature's Bounty, Vitamin World,
Puritan's Pride and Sundown.
"They used to be mom and pop operations
but now they're major companies," said Bruce Silverglade, chief lawyer
for the consumer group, Center for Science in the Public Interest.
There are hundreds of small firms,
including niche players with only a few products. But they account for
a slim slice of total sales, industry experts say.
Supplements often are sold through
multilevel marketing — distributors and franchise holders earn
commissions by selling and recruiting others to sell for a large
company at the top of the pyramid.
Even many ingredient suppliers are
multimillion-dollar firms that do business all over the world.
Little herbal stores are only "what the
consumer sees when they're shopping," while the large companies that
supply them are mostly invisible, Silverglade said.
The industry's little-guy, granola image
has been a great marketing asset, allowing it to tap into Americans'
frustration with big medicine, big prices and big risks. Supplement
makers are dwarfed by leading pharmaceutical firms, whose drugs command
sales in the tens of billions of dollars. Yet the reality is that
natural remedy makers constitute a sizable business that doesn't have
to play by the same rules as companies that make prescription or
over-the-counter medicines.
The Dietary Supplement and Health
Education Act of 1994 exempted supplements from needing federal Food
and Drug Administration approval, or proof of safety and effectiveness,
before they go on sale.
+ Read more: is.gd/122Io
• • •
NEWS
California Budget Crisis: Sweeping Cuts And Changes Proposed For
Thousands With Developmental Disabilities
Budget Trailer Bills Released by Schwarzenegger Administration – Budget
Conference Committee Will Take Action As Early As Today (June 15) –
Advocates Sharply Critical of Timing and Use of Stakeholder Process by
Department to Push Reductions
Sacramento, Calif - The
Schwarzenegger Administration, through the Department of Developmental
Services, released six draft proposed budget related bills – called
“trailer bills” that would – if approved by the Legislature – make
sweeping changes and cuts for potentially tens of thousands of infants,
children and adults with developmental disabilities receiving regional
center funded community-based services and supports.
Copies of those proposed draft trailer
bills are available for downloading or viewing on the CDCAN website at www.cdcan.us The
major cuts include proposals impacting eligibility and services
for Early Start, the state’s early intervention program for thousands
of infants and toddlers at risk including those with developmental
disabilities and elimination of regional center funding until a new
“Individual Choice Model” program is implemented impacting educational
services for children ages 3 to 17, non-medical therapies
including but not limited to specialized recreation, art, dance and
music.
Those changes – if approved by the
Legislature could result in spending cuts of over $334 million in state
general fund money for regional centers – a figure that could rise to
over $500 million if federal funds are also factored in, and previously
approved cuts are added into the total. [CDCAN will issue
an Action Alert – and also a commentary not only on the proposed
reductions – but also on the use of the stakeholder process by the
Department of Developmental Services. ].
A seventh proposed draft trailer bill
deals with sending a proposal to the federal government seeking
approval for a change in the State’s Medicaid State Plan, that would
allow possible expansion in what Medicaid – called Medi-Cal in
California – will cover in terms of regional center funded services.
+ Read more: www.sarnet.org/doc/CDCAN1722009.htm
• • •
Illinois Autism Service in Danger
By Christen Craig. is.gd/12Fz3
A state program under the gun is
Illinois' Autism service.
It supports education of Autistic
children including a center at SIU where officials say drastic cuts
could be on the way.
They require special training but
managers at a local center say if their funding is left out the budget
numerous families will have nowhere to turn.
Four year old Joshua is now playing,
interacting with others and talking-- huge accomplishments for an
Autistic child.
"When we first started dealing with all
this he couldn't tell you what was wrong, he couldn't tell you what he
wanted, he was non-verbal" says Josh's dad, Rick Reimer.
Josh's condition has continued to
improve. He's doing things his dad never thought possible.
"...Spelling words, he's reading, he'll
sit and he reads me stories."
Rick attributes his son's success to the
help he received at SIU's center for Autism Spectrum Disorders, a place
that helps more than 100 patients a year, but it's in danger of drastic
cuts.
"What would you have to say to Josh's
family?" I asked.
"We just don't have the ability to serve
the number of families we used to" says Jenny Martin with the center.
If money for the state Autism program is
cut, the center will lose its primary funding source.
Managers say they would only be able to
help a few patients, and other families dealing with Autism would
suffer.
"To get the services that we provide
they would probably have to travel outside of the state" says Martin.
Josh's dad says it's crucial that those
like his son get the treatment they need.
"You can either fund the programs now
that help them, or you can pay for them the rest of their lives in
these group homes or institutions" says Rick.
He has big dreams for Josh, starting
with normal kindergarten next year-- but all that could be in jeopardy.
"I want them to get the funding, I want
them to be able to allow Josh to come back because even though he's
come a long way, he has a long way to go" says Rick.
The center says not only will families
have to travel out of state for Autism services they will also have to
pay thousands of dollars for the treatment.
• • •
TREATMENT
Melatonin May Counter Sleep Disorders
in Autistic Children
By Jim Kling. www.medscape.com/viewarticle/704191
A pilot study in children with autism
spectrum disorders (ASD) suggests that low-dose melatonin may be an
effective treatment for insomnia in these patients. In this study,
positive effects of treatment were seen on both sleep and daytime
behavior.
Melatonin "does appear to be effective,"
Beth Malow, MD, professor of neurology at Vanderbilt University, in
Nashville, Tennessee, said during her presentation. She emphasized that
the study was small and that more work needs to be done.
"Kids with autism who have some sleep
problems are candidates for melatonin, and I believe that large,
randomized clinical trials of melatonin are well warranted," she
concluded.
Dr. Malow presented the findings here at
SLEEP 2009: 23rd Annual Meeting of the Associated Professional Sleep
Societies.
Increasing Melatonin Use
Children with ASD may experience
insomnia, the researchers note, and parents are increasingly turning to
melatonin as a sleep aid. However, not much is known about its
potential adverse effects. Melatonin also comes in a wide variety of
formulations, some with additives such as antihistamines or vitamins.
Parents perceive melatonin as a natural
treatment, but the wide variety of formulations makes it difficult for
practicing physicians to assess its utility. "I don't know what they're
taking," said 1 attendee, referring to his autistic patients.
To better assess melatonin's safety and
efficacy in autistic children, the researchers conducted a 17-week
study of children with ASD who had trouble falling asleep.
The study enrolled children aged 4 to 10
years diagnosed with ASD who required at least 30 minutes to fall
asleep on 3 out of 7 nights of the week. Parents received behavioral
sleep education before melatonin treatments began, and this was
continued through the study. Parents filled out sleep and behavioral
survey forms at the beginning and end of all study procedures. Patients
wore actigraphy watches (Respironics) for 17 weeks.
After 3 weeks, patients were given 1-mg
melatonin (Natrol). Every 3 weeks thereafter, the dose was escalated to
3 mg, 6 mg, and 9 mg, until the patient fell asleep within 30 minutes
at least 5 out of 7 nights per week. Pre- and posttreatment actigraphy
measures were analyzed using a Wilcoxon signed-ranks test.
Ten patients completed the study with no
adverse effects. Three required a dose of 1 mg, 5 required 3 mg, and 2
required 6 mg to achieve the desired end point. No patients required a
9-mg dose.
Patients started with a mean sleep
latency of 38.7 minutes that was reduced to a mean of 21.8 minutes with
treatment (P = 0.039).
The Children's Sleep Habits
Questionnaire showed improvement in sleep-onset delay (P = 0.008) and
sleep duration (P = 0.004), repetitive-behavior scale domains of
compulsive (P = 0.002) and ritualistic behavior (P = 0.004), and Parent
Interview for Autism domain of affective responses (P = 0.02).
Definite Promise
Asked for perspective on these findings,
Judith Owens, MD, professor of pediatrics at Brown Medical School, in
Providence, Rhode Island, who moderated the session, said the data
support the safety, tolerability, and efficacy of melatonin in this
patient population.
"This was open label, so you can't get
solid conclusions of efficacy, but it definitely has promise," Dr.
Owens told Medscape Neurology.
The project was supported by grants from
the Autism Speaks/Dana Foundation, the National Institutes of Health,
and Vanderbilt University. Melatonin was provided by Natrol. Dr. Malow
and Dr. Owens have disclosed no relevant financial relationships.
SLEEP 2009: 23rd Annual Meeting of the
Associated Professional Sleep Societies: Abstract 0189. Presented June
8, 2009.
• • •
RESOURCES
Generation Rescue Announces
Rescue Family Grant Program
From an organization announcement.
We are proud to announce our Rescue
Family Grant program! Generation Rescue is offering a grant program for
first time biomedical autism treatments that may not otherwise be
covered privately or by other third-party funding sources such as
school districts, county programs, insurance, and/or other grant making
entities.
We are now accepting our first round of
250 applications for our Rescue Family program; applications must be
received by July 15, 2009. Applicants who meet the grant program
criteria and complete the grant application will be considered for a
Rescue Family grant. Rescue Family grants are based on economic need
within the applicants specific geographic area.
Generation Rescue's Rescue Family grants
are designed to provide support to individuals and families affected by
Autism Spectrum Disorders. Each grant recipient will receive two doctor
visits with a specially trained physician who treats individualized
medical conditions associated with autism. Grants also include a 90 day
supply of vitamins, minerals and supplements, a Generation
Rescue-Rescue Mentor and information on dietary interventions. We are
currently in the process of negotiating some laboratory testing as well
and hope to have some additional announcements in the next few weeks.
Applicants must complete and mail the
grant application by July 15th in order to be considered for the Rescue
Family program.
The application and complete application
guidelines are on our website is.gd/12Fbn.
• • •
PEOPLE
Autism View: Fear Is The Enemy
Noted speaker who has disorder shares her insight at conference
By Jon Walker in argusleader.com. is.gd/12FkI
Autism traps a child inside a maze of
thoughts and fears, one who's been inside the trap told educators
Friday in Sioux Falls.
"Fear is the main emotion in autism,"
Temple Grandin told a conference audience at Augustana College.
Grandin, 61, an author and associate
professor at Colorado State University, explained her own difficulties
with autism since childhood as she spoke to 370 people.
Autism is a disorder that displays
itself in difficulties in seeing, hearing, repetitive behavior or
relating to others. An autistic person can be brilliant in science,
art, music and other disciplines, and that's an opening to help.
"The autistic mind is into detail. Build
an area of strength," she said.
But mundane matters can be overwhelming.
She told her listeners that if someone released several cobras inside
the auditorium, they'd all be constantly looking around for snakes as
she spoke. Running water, loud noises and scratchy clothing all can set
off similar alarm bells for the autistic.
Movie upcoming
Grandin will be the subject of an HBO
movie next year. Jeff Iverson, director of alternative education for
Andes Central School District, said he wanted to hear her because
"autism is more prevalent and is being diagnosed more" in children.
"It's not often we get to listen to someone with the disability who is
as articulate as she is," said Melanie Paulson, a teacher from Rapid
City.
Paulson appreciated Grandin comparing
the brain to a map of U.S. airline routes. The autistic mind lacks many
lines of communication in the network, a deficiency that plays out in
daily interaction. "People with autism don't get drawn into
relationships," Paulson said.
Grandin thinks the autistic can
compensate, in part. "Social skills can be taught, but social-emotion
relatedness may remain absent or weak," she said.
Thinking visually
Grandin described herself as a visual
thinker and a "goofball student" in school until a science teacher
helped her learn to study. She regrets that algebra was required before
higher math and continues to argue with educators who are fixed on that
curriculum sequence.
+ Read more: is.gd/12FkI
• • •
Cops Seeking Caregiver Of Boy
Believed To Be Autistic
By Kelly Pedro, London Free
Press is.gd/12FVj
London, Ontario, Canada police are
asking for the public’s help finding the caregiver of a boy believed to
be autistic after he was found near Commissioners and Adelaide roads
about 6:30 a.m.
The boy is about 13.
He is white, five-foot-seven, about 100
lbs., with a skinny build, brown eyes and dark short hair.
He was wearing blue pajama bottoms, a
blue T-shirt with green trim and grey “Sugi” running shoes.
The boy was found walking around and
seemed lost, police said.
• • •
COMMENTARY
Autism and Toxins
By Jay Gordon, MD, Nationally renowned
pediatrician on the faculty of UCLA School of Medicine on
huffingtonpost.com. is.gd/12GF5
Dr Harvey Karp has just written an
excellent blog beginning to discuss the role environmental toxins play
in causing autism. I agree that the huge rise in autism is real, and
not just related to better diagnosis or reclassification of mental
illness. Autism is most likely caused by a genetic predisposition and
an environmental "trigger."
Studies showing that vaccines and their
many constituents do not contribute to this problem are flawed, filled
with specious reasoning and, for the most part funded by the
pharmaceutical industry. Even articles in reputable medical journals
are often written by doctors with an economic interest in continuing
the vaccination program's status quo. This does not invalidate all of
these studies but it certainly makes them suspect and a poor foundation
for an argument excluding vaccines from the list of environmental
influences on the increase in autism in America and elsewhere.
The facile dismissal of those of us
calling for safer vaccinations and scrutiny of the current vaccine
schedule is not scientifically based and polarizes the discussion.
Perhaps most importantly, this dismissal is insulting to the thousands
of parents and families who aver that their children have been harmed
by vaccines. There are extremists choosing to ignore the facts in all
vaccine/autism camps. I am not one of them.
Asking that cars be manufactured with
more attention to safety and that driving is best when done safely does
not make one "anti-car" or anti-driving. Asking for safer vaccinations
and more judicious use of those we have does not make me or anyone else
"anti-vaccine."
The studies Dr. Karp cites show pretty
much the opposite of what he's claiming they do. The opposite. The
Danish Study's data are misused by all and interpreted to suit one's
needs. The Japanese study also shows a connection between the MMR split
into three components and autism. Mainstream medical journals rarely
will publish editorial comment impugning the quality or integrity of
vaccines because they are dependent upon the good graces of the
pharmaceutical industry for their publishing dollars. Seeking out
reputable commentators is difficult because the extremists on both
sides of this debate exaggerate their claims and speak louder and more
unpleasantly as if this helps to make their points.
+ Read more: is.gd/12GF5
• • •
Dr. Baron Cohen Responds
On the Age of Autism blog. is.gd/12Gh3
AOA Managing Editor's Note: Thank you to
Dr. Baron Cohen for responding to Anne Dachel's open letter to him. We
need to be able to discuss the future of our kids with the experts and
professionals who wield tremendous influence. We might not always like
it. We might strongly disagree. But we'd darn well better keep talking
- for the sake of our kids who are hurtling toward adulthood.
Thank you, Dr. Baron Cohen. And thank you, Anne.
Here's the response from Dr. Baron
Cohen: Dear Ann Dachel, Thank you for your letter. The new research
that you referred to showing that autism spectrum conditions are now
much more common than they used to be, and which was published in the
British Journal of Psychiatry this month, was conducted by our group at
the Autism Research Centre in Cambridge.
Using 3 different methods we found that
the rate is now about 1% of primary school age children. This was a
large study based on about 20,000 children. As you rightly pointed out,
this study also found that for every 3 children who already have a
diagnosis, there are two more who would meet "research diagnostic
criteria". So, if one includes those who are undiagnosed, the rate goes
up to 1 in 64 children.
These are very high rates, especially
compared to 30 years ago, when the rates were thought to be 4 in 10,000
(using Rutter's estimates). Interestingly, other estimates from the
same period (from Wing) suggested autism was much more common even back
then (15-20 per 10,000).
I think many children in the old days
were overlooked and that we are getting much closer to the true rate in
the population these days. In that sense, the fact that more cases are
being diagnosed could be seen as an achievement, that we are getting
much better at identifying such children. If some note of alarm was
needed, perhaps it should be over all those individuals who were missed
in the old days, and who are now being better recognized.
+ Read more: is.gd/12Gh3
Note: The opinions expressed in COMMENTARY are those of the author and
do not necessarily represent the views of the Schafer Autism Report.
LETTERS
Dental Mercury Exposure
I was looking at your "five studies to watch" and it seemed that the first study could possibly look at the following idea.
In the UK we have a policy that women during pregnancy get free dental care. Dentists used to have a propensity to use this time to replace fillings that were supposedly going to need removal some time in the future. The removal of filings obviously has a potential risk for mother absorbing mercury when the old filing is removed. No one seems to have looked at this.
I tired to interest the LSHTM epidemiological study team but they did not look at dental health.
- Professor James Roger.
Horse Riding Webinar
I am Executive Director of “The Pocono Equestrian Center". I believe that your readers would definitely benefit from this program on e–learning Zoom.
Please let me know what you think and if you want to join a webinar that will be coming up soon.
elearningzoom.com/takeatour.php
- Beverly Peffer, The Pocono Equestrian Center, Scranton, PA
