Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for February 2004 - #2. As always, email your thoughts and/or questions.
I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.
==================================================================
IF this email is NEW to you and you don't recognize the name...
WELCOME! These emails happen two to four times a month for the
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
IF YOU DO NOT WANT TO RECEIVE THESE EMAILS, just respond and I will be happy to remove you from the list. Contact us
TACA has an official web site at www.tacanow.com
---------------------------------------------------------------------------------------------------------------------
In this edition of TACA e-news:
- Next TACA Meeting Information
- Upcoming
TACA Costa Mesa schedule & other TACA meeting schedule info –
March – July 2004 - General News:
- Some autistic children get harmful treatments
- State
of
- Vaccine News
- IOM February 9th Meeting, the Wall Street Journal and a myriad of articles
- Announcing
NEW DAN! Practice in
- Need more support? MORE Coffee Talk!
- APRIL = Autism Awareness Month AND an upcoming radio program on AUTISM
- Upcoming Conferences & Seminars
- Social Events
- Personal note
-----------------------------------------------------------------------------------------------------------------
1) Next TACA COSTA
Date: Saturday, March 13th (always the 2nd Saturday of each month)
Time:
TOPIC: Health Insurance Reimbursements – Tips and Insider information!
By Kathy Ward – parent volunteer
PLACE:
(I am happy to report the church is back! With the new time, consider it
our new home!!)
(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.)
Directions:
405 FWY
South, Exit
Right on
Left on Baker
Go under FREEWAY.
The
And remember, we are still a non-faith based group!
-----------------------------------------------------------------------------------------------------------------
2) UPCOMING TACA
All meetings at the Vineyard:
- What is in a test and outside evaluations? Why are
they important? - Where should you start? And important
observations about school district and
Much more is being planned for 2004! Stay tuned!
--------------------------------------------------------------------------------------------------------------------
TACA has FIVE So.
1)
2)
Mission Hills (the Valley, man!): NEW
location! 1st Sunday of every month,
3)
February 24: Amy Langerman, Attorney - "Special Ed Law"
March 23: Sharon Lerner, Ph.D. - "The Philosophy of Inclusion: What Parents Should Look For
When Choosing a Recreational Site For Their ASD Child"
4)
NO MEETING IN FEBRUARY
March 20: Dr.
Kenneth Williams (DAN! Doctor)
and: Carolyn Doherty – Rapid Prompting Method /
5)
March 15:
Lisa Ackerman – A LOOK
BACK: A review of treatment protocol on one child
April 19: Speaker to be announced
May 17: Dr. Slezak, Naturopath, will talk about Brain Protocol for Autism
---------------------------------------------------------------------------------------------------------------------
3) General News:
|
http://www.medicalposting.ca/children/article.jsp?content=20040210_092126_4192&topStory=y
|
||||||||||
B) STATE OF
Assembly Budget Committee Set To
Approve $1 Billion Of Governor's Mid-Year Cuts Though No Cuts At This Time To
Health, Human or Social Services & Programs
The
Assembly Budget Committee, with Assemblyman Darrell Steinberg (D-Sacramento)
appointed as the new committee chair by newly installed Assembly Speaker Fabian
Nunez on Monday, is scheduled to meet February 17, Tuesday afternoon at
Any action by the Assembly would still need the approval of the State Senate - and approval by the Governor. It is not known at this point how the Senate will react to the Assembly action next week. However the Senate Budget and Fiscal Review Committee, chaired by Sen. Wes Chesbro (D-Arcata) met last week and rejected on a party-line vote, a motion by Republican Sen. Dick Ackerman to approve the entire package of mid-year spending cuts proposed by Governor Schwarzenegger. Senate Democrats on the committee said that more specific information was needed from the Schwarzenegger Administration before any action could be taken.
Assembly Democrats, who hold 48 seats of the 80-member Assembly, tentatively agreed on Tuesday to some of the Governor's proposed reductions to the state budget that went into effect last July 1, 2003. While no details or specifics were available, it is known that the Assembly Budget Committee is preparing a list of spending reductions that the Assembly Democrats did agree to that would largely be one-time spending cuts, accounting changes and other savings - and not any on-going reductions to any programs. While nothing is definite, reportedly none of those spending reductions impact any health, human or social services and programs or transportation. The Assembly - like the Senate - is likely to take action on those proposed reductions and policy changes later in the budget process probably in March or April at the earliest.
HOW DOES THIS IMPACT
PEOPLE WITH DISABILITIES AND SENIORS?
* No direct impact, given the
information that the Assembly will not take action at this point to make
cuts as proposed by Governor Schwarzenegger to the current budget (which went
into effect July 1, 2003) involving programs or services in health, human or
social services (including the Governor's proposed elimination of the In-Home
Supportive Services Residual Program, caps on several health and human service
programs, including California Children's Services).
* Full impact of the Assembly
action next week won't be clear however until details are released by the
Assembly Budget Committee. The full impact will also depend on what action the
State Senate will take - if any at all - in response to the Assembly action
next week.
NEXT STEPS
BUDGET PROPOSALS
* The Governor proposed cuts
to the current state budget now in operation (July 1, 2003 through June 30,
2004) on November 24, which at the time, included suspension of the Lanterman
Developmental Disabilities Services Act and the elimination of several programs
for children and adults with developmental disabilities. The Governor
subsequently rescinded those proposed cuts after weeks of massive protests, on
December 16. However, other cuts - including proposed elimination of the
In-Home Supportive Services Residual Program, and enrollment caps and waiting
lists for several critical health and human service programs remained.
The Governor wanted the Legislature to act on his proposed "mid-year
cuts" quickly, to go into effect in the first months of 2004, which has
not happened. Any action requires 2/3rds vote of both houses and approval
of the Governor.
* The Governor proposed on
January 9th, as required by the state constitution, a proposed budget for the
fiscal year that begins on
* As of February 11, none of
the Governor's proposed mid-year budget cuts made in November, or proposed
budget proposals made on January 9 as part of his 2004-2005 budget have been
acted on yet by the Legislature.
* Even though the Assembly is
ready to take action on about $1 billion of the Governor's proposed $2 billion
in current budget spending cuts, the Legislature is almost certain to hold off
taking any action on the Governor's major proposed mid-year budget reduction
proposals - including proposed elimination of the In Home Supportive Services
Residual Program that he wanted effective April 1, 2004.
* Any action requiring major
policy changes - like IHSS, would likely happen later in the budget process.
BUDGET HEARINGS
* Hearing by the Assembly
Budget Committee is scheduled for 2/17, Tuesday to consider and approve about
$1 billion in mid-year spending reductions (and savings) proposed by Governor
Schwarzenegger - though again, none of those cuts reportedly impact health, human
or social services.
* No other hearings have been
scheduled by the Assembly.
* Hearings by either the
Senate or the Assembly on specific budget issues - like In-Home
Supportive Services, SSI/SSP, developmental services, have not yet be scheduled
yet (as of 2/10) by either the Assembly or Senate - but will likely be held in
early March - after the March 2 primary, and also during the month of April.
* No other hearings have been
scheduled by the Senate at this time. The Senate Budget subcommittees did hold
hearings on the Governor's mid-year proposed cuts to the current budget on
December 10th (with the Senate Health and Human Services Committee holding its
own informational hearing in Los Angeles on December 15th), but no actions were
taken (the Assembly has not yet held any hearings on the specific mid-year cuts
that the Governor has proposed)
PRIMARY ELECTION
* Deadline to register to vote
in the March 2 state primary election is February 17 (Tuesday). Deadline
to request an absentee ballot is February 24 (Tuesday).
* On the ballot - besides a
contested (at this point) Democratic presidential primary, are several ballot
initiatives - including three with significant impact on the state's budget
this year.
LEGISLATIVE ANALYST
* Scheduled to release its
annual review of the Governor's budget proposal on February 18,
Wednesday. This is a highly respected, lengthy, comprehensive,
non-partisan review of the Governor's proposed budget, as submitted to the
Legislature on January 9.
* The review and analysis also
contains recommendations and other options the Legislature could take as
alternatives to the Governor's specific proposals.
CONTRIBUTIONS NEEDED TO
CONTINUE ADVOCACY EFFORT
Until grant funding is finalized,
contributions from people and organizations are urgently needed to keep the
advocacy efforts going for the next two months. Please make check or money
order to: California Disability Community Action Network/Marty
Omoto (or abbreviate CDCAN). CDCAN is not yet a non-profit organization (work
on this will have this happen in within the next few months)
Send contributions to:
California Disability Community Action Network, 1225 8th Street Suite
#480, Sacramento, CA 95814. Thanks to the many friends, people with
disabilities and their families, community organizations and others who have
sent in generous and needed contributions and donations (individual thank you
letters will be coming soon!). Thanks - we will all get through this.
FOR MORE
INFORMATION ABOUT THIS ACTION ALERT
* This is a NON-PARTISAN
online news report of the non-partisan California Disability Community
Action Network, a link to thousands of Californians with developmental and
other disabilities, their families, community organizations and providers,
direct care and other workers, and other advocates. These reports (formerly the
CA UCP Capitol Reports) are for all of them. This report goes to
thousands of people with developmental and other disabilities, their families,
community providers and organizations, direct care and other workers and
advocates across California. In addition it also goes to news organizations,
state and local government officials and staff.
* If you would like to get
on this distribution (and conversely, get off of it) please send an email with
that request to: martyomoto@rcip.com. Sharing information is part
of our organizing effort. Please feel free to forward or copy this
(attribution is nice). We're all in this together!
Marty Omoto, director/organizer
California Disability
Community Action Network
4) VACCINE NEWS !
a. IOM February 9th Meeting, the Wall Street Journal, and a myriad of articles
Editor’s note: It is very hard for me to pick which articles to appear in this newsletter from the past 10 days. If I chose to select them all, this newsletter would be at least 200 pages long. If you are interested in seeing the group of articles, please email me. (A special note of thanks to Lenny Shafer and Teresa Binstock in gathering all this news and making it available to the autism community.)
First, the IOM February 9th meeting:
For details on the meeting (agenda, slides and presentation papers) please see:
http://www.nationalautismassociation.org/iom.php
And for a great summary on the February 9th IOM Meeting as witnessed by a parent with an autistic child – please read:
http://nationalautismassociation.org/newsandviews/newsandviews021704.html
(Thank you National Autism Association for having a great link for the IOM MEETING!)
Statement of Rep. Dave Weldon, M.D.- Member of Congress Before the Institute of Medicine
On the Mercury-Vaccine-Autism controversy.
February 9, 2004
Good morning. I appreciate the opportunity to address you again.
I continue to be guided by a strong desire to get at the truth in these matters and I believe passionately that we need to protect the integrity of our national vaccine programs. In my clinical practice I dispensed thousands of vaccines. I know that tremendous benefits to humanity of vaccines, and the risks associated with an undermined confidence in vaccines.
However, I continue to be the focus of a great number of phone calls and inquiries from parents, scientists, autism interest groups, and more recently members of the media. All are seeking information and answers to the questions before you.
I am very disturbed by the continued number of reports I receive from researchers regarding their experiences in pursuing these answers. It is past time that individuals are persecuted for asking questions about vaccine safety – we have recognized error before in the case of live polio, whole-cell pertussis, and rotavirus.
Many have described encountering apathy from government officials charged with investigating these matters, difficulty in getting their papers published, and the loss of other research grants.
Others report overt discouragement, intimidation and threats, and have abandoned this field of research. Some have had their clinical privileges revoked and others have been hounded out of their institutions.
An example of the latter is Dr. Andy Wakefield who has described to me how the intellectual climate at the Royal Free in London became intolerable for him and he was forced to depart.
Virtually all of his ongoing research now has to be privately funded, while those seeking to disprove him receive government money.
I witnessed some of this first hand at a hearing, when a Dr, Brent Taylor made repeated inappropriate comments about Dr. Wakefield and his work causing me to seriously question Dr.
Taylor’s integrity and motives.
Mind you, half of Dr. Wakefield’s theory has been proven correct and accepted in the medical community. Hundreds of children with regressive autism and GI dysfunction have been scoped and clinicians are seeing the inflammatory bowel disease he first described. The NIH is finally funding an attempt to repeat Dr. O’Leary’s findings of measles RNA in Wakefield’s biopsy specimens, though I am disappointed it has taken this long.
A clinician in New York was poised to repeat Wakefield’s work two years ago, but he ultimately was refused by his IRB and then subsequently had his clinical privileges withdrawn.
This atmosphere of intimidation even surrounds today’s hearing. I received numerous complaints that this event is not a further attempt to get at the facts but rather a desire to sweep these issues under the rug. I shared these with Dr. Gerberding. Last week she called me to assure me that this is not the case. She informed me that she wants to meet with me and some of the parents, clinicians, and researchers to work with them to get the proper answers.
I understand that such outreach was attempted prior to her arrival, but that effort turned out not to be a serious endeavor. Perhaps new leadership will yield better results.
I stand ready to help with any funding issues. Though I must say that in recent years both NIH and CDC have seen dramatic increases in their funding, which unfortunately has not been matched with the will to fund the research you called for.
I have considerable confidence in Secretary Thompson, and Dr.’s Zerhouni and Gerberding.
However, they have not been well served by the people under them. I was assured by Dr Gerberding over a year ago that she would welcome outside researchers into the Vaccine Safety Datalink (VSD). It then took me over a year to secure access for independent researchers.
Once in, it was quickly discovered that if you sort the VSD looking at the children who in 1997 and later received thimerosal-free DTaP verses those who received thimerosal-containing DTaP, there is a dramatic statistically significant increase in autism for those receiving thimerosal.
Unfortunately, the CDC has hampered further research, by refusing to make available post-2000 data.
Last Wednesday I read an article by Dr. Deth in Molecular Psychiatry showing a possible biomolecular mechanism whereby thimerosal may act as a neurodevelopmental toxin.
This article was very intriguing. However, I did not expect this article to receive public attention. Amazingly the next morning my secretary told me she heard this study discussed on a local country music station. It has also received widespread attention in Canada.
A thorough medical literature search yields thousands of articles on thimerosal many of them delineating its highly toxic nature, including several recent studies reporting that thimerosal is as toxic as methyl mercury. Amazingly, some of these have actually been published by government officials. Yet other officials claim the toxicity of thimerosal is unknown, or not likely harmful.
Thimerosal and Neurodevelopmental Disorders In 2001 you concluded that "exposure to thimerosal-containing vaccines could be associated with neurodevelopmental disorders." I urge you not to retract from this conclusion, but to build upon it.
Your recommendation in 2001 that there be an immediate effort to end the administering of thimerosal containing vaccines to infants was wise. Unfortunately, it was ignored. Existing stocks and new lots of such vaccines were administered to millions of infants. Furthermore, the CDC is poised to recommend thimerosal-containing flu vaccine to 6, 7 and 23 month old babies.
Some recent literature gives me further reason for concern: • Deth provides a plausible mechanism to explain why some children are more susceptible.
• Bradstreet found that with chelation children with Autism excrete more mercury than controls.
• Holmes found less mercury in first baby haircuts for autistic children verses controls.
• Geier has found in VSD an association between higher mercury exposure levels and Autism.
• Even the much-maligned Verstraeten study found an association between higher exposures to thimerosal and neurodevelopmental disorders in some HMO populations.
Some have argued that there is no need for concern because methyl- and ethyl-mercury react very differently in the body and that ethyl mercury exposure levels were too low to cause harm.
There is very little science to back up claim of no harm. In fact, a review of the medical literature appears to show just how harmful thimerosal is. Even Dr. Neal Halsey’s evaluation of the Pichichero (Pediatrics 2003) data found toxic exposure levels in some children.
In 2001 you recommended studies to compare children receiving thimerosal with those who did not. You urged a monitoring of the prevalence of neurodevelopmental disorders as thimerosal was removed.
Unfortunately, government officials have done neither. Outside researchers have made some progress, but they have been hampered in gaining adequate access to the VSD.
MMR and Autism With regard to MMR and Autism, I urge the Committee to build upon its 2001 conclusions and recommendations. A strong signal from you could lessen the intimidation obstructing this research. You concluded that since the MMR was mandatory it was the responsibility of the government to ensure its safety, even if hypothesized adverse outcomes are rare. I concur.
As with thimerosal, my concerns about MMR have not subsided: • The NIH is presently funding an effort to duplicate Wakefield.
• Vaccine strain measles virus has been identified in the inflamed GI tract of children with regressive autism • Measles virus antibodies have been found in the CSF of children with regressive autism.
• Rechallenge cases of children with regressive autism have been observed and documented.
• The medical community has largely accepted a new form of bowel disease in children with regressive Autism.
Federal research funding has not been directed to investigating many of your MMR research recommendations.
Also, a significant shortcoming of today’s meeting is that Dr. Wakefield was not invited. In 2001 you found that cases of MMR "rechallenge" would provide evidence in favor of causality.
It is my understanding that Dr. Wakefield has developed such a case series. The lack of an invitation is puzzling.
CDC Built-In Conflict of Interest While I have considerable respect for Dr. Gerberding, I am concerned about the ability of the CDC’s National Immunization Program to objectively investigate this matter. The CDC has a built-in conflict of interest that is likely to bias any reviews.
CDC is tasked with promoting vaccination, ensuring high vaccination rates, and monitoring the safety of vaccines. They serve as their own watchdog – neither common nor desirable when seeking unbiased research. This has been a recipe for disaster with other agencies.
Congress recently saw the wisdom of splitting the FAA because its dual functions left it conflicted between promoting flying and regulating the flying public.
In the aftermath of the Space Shuttle Columbia accident, The Gehman Commission found that a critical problem in the Shuttle program was that the same individuals were responsible for flying the shuttle on time and flying it safely.
This same conflict is inherent in the CDC. Unfavorable safety reports lead to lower vaccination rates. An association with between vaccines and autism would also force CDC officials to admit that their policies irreparably damaged thousands of children.
Who among us would easily accept such a conclusion about ourselves? Yet, this is what the CDC is asked to do. Also, the relationship between the CDC and vaccine manufactures has become extremely close.
Given these facts, studies conducted for or by the CDC should be evaluated with in this context.
Evaluating how best to eliminate this conflict of interest would be a worthwhile endeavor for the IOM. I urge the IOM to take this matter under review.
Further undermining my confidence in the CDC’s ability to monitor safety is the experience I had in assisting an independent researcher gain access to the VSD and what we have discovered subsequently. The CDC erected excessive barriers and has imposed severe limits on access to the data.
• Researchers are not provided data collected beyond December 2000 – seriously limiting the ability to provide for independent research to observe the effects of the removal of thimerosal.
• The IRB approval process forces researchers to receive approval from as many as 7 IRBs – each with its own requirements.
• CDC places strict limits on what data is available to researchers, access to the complete database is virtually impossible, and the data is made available on an inadequate PC.
• Raw datasets used by the CDC to conduct their studies are not made available to independent researchers – only altered datasets are provided, thus the CDC’s work cannot be evaluated by outside researchers. Does science not demand the ability to fact check and replicate work? Conclusions To
summarize: Last week, Dr. Gerberding shared with me that she would be devoting additional time personally to this issue and that she believed the research should not end with this meeting. She indicated her desire to see this research continue and emphasized that we should let the truth prevail, regardless of the consequences.
• I urge you to build on the recommendations and findings of possible associations established in your 2001 reports on MMR and Thimerosal. There are increased reasons for concern.
• The evidence of persistent measles infection in the GI tract and CSF of children with regressive autism continues to expand and further research should be encouraged.
• Many of the research recommendations you set forth in your 2001 reports have been ignored by federal research agencies.
• Results of the Wakefield duplication study will not be known until this summer.
• Studies conducted by or in conjunction with the CDC should be considered in the context of the CDC’s inherent conflict of interest.
• Neither the entire VSD, nor the datasets used by the CDC for their studies are being made available for independent review.
• More investigation is needed to answer these questions with the degree of certainty that science demands.
In closing I would quote from the Verstraeten study. While I have serious concerns about some of the findings in that study, I do concur with one of their closing recommendations. The authors stated: "We believe that additional investigation is required because of the widespread exposure from vaccinating virtually the entire birth cohort of the United States and the importance of speech and language disorders among children and adolescents. For elucidating further whether a causal association exists between thimerosal exposure and neurodevelopmental conditions, additional studies with different designs will be needed."
I concur full with these remarks and encourage you to adopt this recommendation by calling for a redoubling of these research efforts.
Second, the WALL STREET JOURNAL (as reported in the Shafer newsletter):
Autism and Vaccines: WS Journal Editorial Lashes Out at Autism Parents "Ugly.., harassing.., intimidating.., accusing.., threatening.., intolerant.., antagonistic.., silencing.., bully-police.." parents, trial lawyers want to "shut down public debate." WSJ says "coterie" of parents victimized NAAR, Congress too.
[Thanks to Garymonli.] http://online.wsj.com/article_email/0,,SB107628846745424100-H9jeoNhlaR3nJuqb
X6GbK6Hm4,00.html
Everyone in our business learns to take a punch, but even we've been surprised by the furious response to an editorial http://online.wsj.com/article/0,,SB107266917367727600,00.html?mod=article-outset-box we ran a few weeks ago about vaccines. The subject deserves further attention, not least because the goal of our antagonists appears to be to shut down public debate on the matter.
For the past few years, a small coterie of parents has taken to loudly claiming that thimerosal, a preservative used in vaccines for 60 years, is the cause of autism in their children. Their allegations have scared many parents about immunizations, sent trial lawyers scurrying to sue the few remaining vaccine makers, and inspired an ugly political dispute. Lost in the controversy has been a little thing called science.
We felt someone ought to point out that nothing currently exists in the medical world to justify this furor -- that thimerosal has never been credibly linked to autism, and that recent studies in leading medical journals have also failed to find a link. That research is one of many reasons the medical community remains solid in its belief that vaccines are safe.
To our surprise, we had wandered into a hornet's nest of moral intimidation. In letters and e-mails we've since been accused of "fraud," a "terrorist act," and of having an "industry profit promoting agenda." We've been told we belong to a vast conspiracy -- including researchers, pediatricians, corporations, health officials and politicians -- devoted to poisoning their children. A few have harassed our secretaries and threatened an editorial writer.
As writers for an independent newspaper, we aren't about to shut up. But what worries us is that these activists are using the same tactics in an attempt to silence others with crucial roles in public health and scientific research. The campaign to silence or discredit them has already had damaging consequences.
A case in point is the National Alliance for Autism Research. This widely respected outfit was founded by parents of autistic children, and its staff and volunteers have raised millions for research. When the autism claims first surfaced, NAAR dutifully co funded a Danish study, which found no connection between the measles-mumps-rubella vaccine and autism. Within days, the critics were trashing NAAR, claiming it was under the influence of drug companies (untrue) and suggesting its research couldn't be trusted. NAAR had to spend valuable time and resources rebutting those claims so it can remain a source of honest information for worried parents.
Meanwhile, doctors who have spoken about the benefits of vaccination -- Paul Offit (who writes here) and Samuel Katz (the co-creator of the measles vaccine) -- have been targeted as baby killers and compared to Hitler. The goal appears to be to silence doctors who encourage immunizations.
That would be a disaster. While we don't know what causes autism, we do know that diseases like measles cause blindness and brain damage. Doctors are already struggling to be heard over Internet rumors, and they report that parents are increasingly nervous about vaccines. That's how paranoia started in England and Ireland, where parents were swept up in autism claims and refused to immunize. Ireland, a country with a population 77 times smaller than that of the U.S., reported 2,000 measles cases in 2002. The U.S. had 37.
As it happens, the thimerosal flap has already taken a human toll. Health officials recommended taking thimerosal out of vaccines in 1999 to help calm fears -- but this only fueled claims of a government cover-up. Worse, as Dr. Offit reported in a recent issue of Pediatrics, some hospitals misinterpreted thimerosal-related recommendations and suspended some vaccinations for newborns. One institution later reported the death, from acute hepatitis B-induced liver failure, of a three-month-old infant who wasn't immunized.
Aided by trial lawyers, the intimidation has spread to Congress. Vaccine makers receive some liability protection from the federal Vaccine Injury Compensation Program -- which pays out to the rare family whose child is injured by vaccines. But tort lawyers have exploited loopholes to file billion-dollar thimerosal suits that could bankrupt the few remaining vaccine makers.
When Republican Majority Leader Bill Frist tried to modernize VICP -- and require autism claims to go through the program like everyone else -- the autism police went to work. They camped out in Washington and convinced three Republican Senators to kill any liability protection. The Senators claimed in a recent letter to us that they hope the bill will be reconsidered, but it seems to have disappeared. The lawsuits go on.
None of this, we should stress, is in the interest of families struck with autism. Researchers have spent years studying the vaccine-autism link, and we hope they continue. But if the research disproves a connection -- as it has up to now -- the autism community needs to listen and move on. Research dollars are limited, and parents of autistic children deserve to see the money spent where it will do the most good.
Autism is a terrible diagnosis, and we hope science soon gives parents the chance at a cure. But the best way to achieve that goal is through open and honest inquiry that shouldn't be stopped because of the clamoring of an intolerant few.
* * * MORE IN THE WALL STREET JOURNAL:
When Judges Play Doctor: Wall St. Journal
[By Paul A. Offit. The opinions expressed are those of the writer and do not necessarily reflect the views of the Schafer Autism Report.] http://online.wsj.com/article_email/0,,SB107628882967224104-INjeoNhlaR3nJuobYCGbq6Jm4,00.html
In the spring of 2001, thimerosal (an ethyl mercury-containing preservative) was removed from all routinely recommended vaccines given to young infants. As a consequence, lawsuits claiming that vaccines cause neurological damage, specifically autism, are now quietly amassing across the country. Soon, judges and jurors may decide whether thimerosal in vaccines caused harm.
Removal of thimerosal was precipitated by the finding that the level of mercury in vaccines exceeded safety guidelines recommended by the Environmental Protection Agency. Although the level didn't exceed guidelines recommended by the Food and Drug Administration (the agency charged with determining vaccine safety), thimerosal was removed as a precautionary measure. Not surprisingly, some parents felt that thimerosal was removed from vaccines because it was harmful, and subsequently worried that thimerosal might cause autism, a developmental disorder characterized by difficulties with language, communication and behavior.
So, are there any scientific data supporting claims that vaccines containing thimerosal cause autism or any other form of neurological damage? Parents can be reassured by the following facts: • First, EPA guidelines were recommended for methyl mercury (the type of mercury found in the environment), not ethyl mercury (the type of mercury found in vaccines). Ethyl mercury and methyl mercury are different molecules; ethyl mercury is eliminated from the body seven times faster than methyl mercury, and is, therefore, far less likely to accumulate; and ethyl mercury is not actively taken up into the nervous system (because it is a larger molecule), and is, therefore, far less likely to enter the brain.
• Second, safety guidelines by the EPA were based on exposure of the unborn child to methyl mercury in the womb (where the brain is still developing), not exposure of two-month-old children to ethyl mercury.
• Third, studies performed in both Denmark and the U.S. found that receipt of thimerosal-containing vaccines didn't increase a child's risk of autism.
• Fourth, the motor, visual, speech, sensory and psychiatric manifestations of methyl mercury poisoning are dramatically different from those found in children with autism.
Taken together, these findings should reassure parents that ethyl mercury contained in vaccines does not cause autism.
If the question of whether thimerosal causes autism is a scientific one, why does society turn to judges and jurors for answers? + Commentary continued:
http://online.wsj.com/article_email/0,,SB107628882967224104-INjeoNhlaR3nJuobYCGbq6Jm4,00.html <- - address ends here.
Third, the fall out!
Federal Panel Hears
Testimony on Vaccinations and Autism
By ALICIA AULT
A panel is trying to determine whether a mercury-based preservative once common
in routine childhood vaccines was behind the rising rates of autism in the U.S.
http://www.nytimes.com/2004/02/10/politics/10VACC.html?th
Debate grows on
vaccine-autism link - Stakes are high as panel reviews risk from mercury
By Scott Allen,
Globe Staff, 2/8/2004
http://www.boston.com/news/nation/articles/2004/02/08/debate_grows_on_vaccine_autism_link
The new vaccines kept coming, each containing a tiny amount of mercury as a preservative. For nearly a decade, until regulators realized the problem in 1999, children who received all the recommended vaccinations could have absorbed an elevated amount of the toxin by the time they were 6 months old.
"I feel badly that I didn't pick it up," acknowledged an adviser to the National Immunization Program, Dr. Neal Halsey of Johns Hopkins University, at a hearing in Cambridge three years ago.
The preservative, called thimerosal, is used only in trace amounts or not at all in today's US vaccines, but the debate over the human cost of that public health miscalculation is growing. Tomorrow, a panel of the Institute of Medicine will hear new evidence on whether mercury-containing vaccines could explain the apparent increase in autism, a neurological disorder whose victims have difficulty interacting with others or even with talking, and often rely on ritual behavior to cope.
By some estimates, the number of US autism cases has risen tenfold in the past 30 years, although it is unclear how much of the increase reflects greater awareness of the disease rather than a true rise. Many public health officials say the amount of mercury was too small to do much harm, but parents of autistic children say their concerns are not getting a fair hearing because federal health agencies, along with vaccine manufacturers, manipulate studies to play down the role of vaccines in neurological problems.
"I just want to figure out what happened to my kid," said Mark Blaxill of Cambridge, whose 8-year-old daughter was diagnosed with autism shortly after she received childhood immunizations.
The anticipated hearing in Washington marks the second time that the institute, an independent science adviser to the government, has tackled the emotional and politically charged issue. In 2001, it concluded that it is "biologically plausible" that mercury, used since the 1930s to keep vaccines fresh, causes autism. The institute's Immunization Safety Review Committee found insufficient evidence to substantiate the claim but recommended that mercury be phased out of vaccines for children as a precaution.
Since then, advocacy groups have zeroed in on changes in the vaccine program beginning in the late 1980s as a possible cause of the apparent increase in autism cases. In that period, a broad effort to increase vaccination rates raised the number of children getting thimerosal-containing vaccines, and new vaccines for hepatitis B and a form of bacterial meningitis were added. The US Food and Drug Administration found that an infant would receive more mercury from the shots than the federal safety standard for mercury in the environment, although mercury in vaccines takes a different chemical form.
But studies in the past three years have reached conflicting conclusions about whether any harm was done. The federal Centers for Disease Control and Prevention has found no consistent link, but other specialists, such as Richard Deth of Northeastern University, have found in laboratory experiments that the form of mercury in vaccines can disrupt chemicals that are key to the developing brain.
The stakes in the vaccine review, expected to be made public by May, are enormous, both for the parents of autistic children and for the US childhood immunization program. Already, 3,500 families of autism patients have applied to the National Vaccine Injury Compensation Program, a federal fund that pays hundreds of thousands of dollars for proven vaccine injuries. Hundreds of other families of autism sufferers have sued the government and vaccine makers directly. But "no one has been compensated one penny yet alleging that mercury in vaccines causes autism," said Jack Hamilton, a lawyer in Melbourne, Fla., who represents more than 50 claims before the compensation program.
More broadly, researchers say the thimerosal controversy has contributed to growing anxieties about children's scheduled shots, and they fear a drop in immunization rates even though today's vaccines, collectively, contain 60 times less thimerosal than the 1990s vaccines. A new University of Michigan survey found that 93 percent of pediatricians had encountered at least one parent who refused vaccines for his or her child in the past year.
"We can do tremendously more harm if we in fact create an environment where children don't get vaccines and we begin to have outbreaks of vaccine-preventable illnesses," said Dr. Gary Freed, director of the Child Health Evaluation and Research Unit at the University of Michigan and author of the study.
Critics say the CDC itself may have undermined confidence in vaccine safety with a study published last November that found no consistent link between mercury in vaccines and autism. The study, based on a review of records from three health maintenance organizations, found only scattered evidence of an increased risk of tics and speech delays -- but not autism -- for children exposed to thimerosal. The study called for further investigation.
But SafeMinds, an advocacy group, obtained the transcript of a meeting in July 2000 in which study authors and advisers discussed preliminary findings that indicated the risk of autism was 2 1/2 times greater among children who received the highest levels of thimerosal compared with those who received none. "I do not want [my] grandson to get a thimerosal-containing vaccine until we know better what is going on," said Richard Johnston, a pediatrics professor at the University of Colorado, according to the transcript.
The version of the study published in the journal Pediatrics last year found no such link, in part because the researchers obtained new data on children from Harvard Pilgrim health plan that diluted the original findings.
US Representative Dave Weldon of Florida, one of the few doctors serving in Congress, is pressing the CDC to give outside researchers access to the study data and calling for an independent review. "There may have been a selective use of the data to make the associations in the earliest study disappear," he wrote to CDC director Julie Gerberding.
CDC spokesman Von Roebuck declined to respond publicly to Weldon's charge, although the researchers have said they collected the Harvard Pilgrim data to broaden their analysis. And Roebuck defended the CDC's objectivity in the vaccine debate: "We're really trying to take a look at the science and understand it."
© Copyright 2004 Globe Newspaper Company.
|
---------------------------------------------------------------------------------------------------------------------
5) Announcing a new DAN! Practice in Orange County:
Dr. Ken Williams and the Orange Coast Family Medical Group are pleased to announce the opening of their Center for Biological and Neurodevelopmental Disorders (CBND). The Center is dedicated to using approved and current DAN! protocols, and a comprehensive evidenced-based biological approach for the treatment of Autistic Spectrum Disorders (ASD) and other related medical diseases. We are currently taking appointments for consultations and appointments.
CBND provides comprehensive and preventative medical care to patients with ASDs and other biological and neurodevelopmental disorders. The center is staffed by physician's assistants and nurse practitioners and certified pediatric nurse infusionists for intravenous therapies requiring IVIG, Secretin, and other therapies for disorders such as heavy metal overload. The center provides the integration of traditional science and medicine with new evidence-based research on the etiology, treatment, and therapies of neurodevelopmental disorders and ASDs. Visit our website at www.ocfamilymedicalgroup.com .
Contact our office in Orange at 714-972-8001
Address: 2881 E. Katella Ave #100 Orange, CA 92861
----
Parent Editorial: As many of you are aware, I had the privilege of working with Dr. Williams as he got his DAN! practice started. We worked together to update the website and to determine how to coordinate the appointments to ensure a quality and comprehensive visit. From the emails I received from the families who met with Dr. Williams, I can tell you they mentioned mostly his kindness, his professionalism and the confidence in knowing he would help them determine the best path for their child. Wow, with so few DAN! doctors available in Orange County I can tell you we are blessed to have one of Dr. Williams? caliber in our area. You must know that I no longer work professionally with Dr. Williams, but continue to support his efforts to help the autism community. He is absolutely dedicated to helping the rest of us.
Mary Romaniec
Mom to Daniel
Member of the TACA family
---------------------------------------------------------------------------------------------------------------------
6) Need more support? MORE COFFEE TALK !
Coffee Talk is going to be your hour (or so) once the kids are away at school to chat with other families affected by Autism. This is an unstructured, casual meeting environment to chat and talk about what you want to talk about.
Date:
Tuesday, March 16th
Time:
9:00 a.m. – 10:30 a.m.
Location: Diedrich Coffee – Costa Mesa
1170 Baker Street (off the 405 freeway and Fairview Street)
NO need to RSVP, just join us for a little coffee, a little talk, no big whoop!
7) APRIL IS AUTISM AWARENESS MONTH:
- Here is a list of activities FOR APRIL
- CAN WalkNOW April 17th – info www.cureautismnow.org / www.walknow.org
- Project SEA Walkathon April 24th www.projectsea.org
- Power of 1.5 Rally in Washington DC April 21-23 www.unlockingautism.org
RADIO PROGRAM ON AUTISM:
April 12, from 1 pm – 2 pm ET (WMNF 88.5FM). The show is on medicine, is hosted by Carol Roberts, MD, and is also heard on the Internet at www.WMNF.org . The first half of the show is talk, the second half listeners call in with questions. The show is based in Florida, but with the Internet can be heard anywhere. Speakers include: Dr Jeff Bradstreet, attorney Jim Donnelly and our VERY OWN MARY ROMANIEC (parent to Daniel).
---------------------------------------------------------------------------------------------------------------------
8) UPCOMING FEE-BASED
CONFERENCES & SEMINARS IN SOUTHERN CALIFORNIA:
SCLARC Autism And *Other Disabilities - English-speaking Parent Support Group presents:
Sensory Integration in Children with Developmental Disabilities
Date: Thursday, February 19, 2004
Time: 6:30 p.m. to 8:30 p.m.
Location: FURMAN PARK, 10419 Rives Ave. Downey, CA 90241
Sensory integration involves neurological processes in the brain that help us to receive, process, organize, and respond to information from our bodies and our environment so that we can engage in everyday activities and interactions.
Speaker: Patricia S. Nagaishi, PhD., OTR/L, BCP, Pediatric Occupational Therapy Consultant
Contact: Martha Sánchez, AA, FRC Coordinator at (213) 744-8882. Marthas@sclarc.org
Paquita M. Vales, MS, ACBSW, FRC Supervisor at (213) 744-8804. Paquitav@sclarc.org
=====
Scientific Meeting on Autism, Main Topic: Mirror Neurons,
Psychoanalysis and Autism
Main
Speaker: Gilbert Kliman, M.D., Medical Director San Francisco's
Children's Psychological Health Center
Discussant: Pauline Filipek, M.D., Associate
Professor of Pediatrics and Neurology, UC Irvine
Feb 21 Los Angeles, 9:30 – 4:00, $50, Los Angeles Psychoanalytic Institute 2014 Sawtelle Blvd.
Phone: 310 478 6541 Fax: 310 477 5968 lapsi@aol.com
=====
OUR SPECIAL CHILDREN - Complementary Supports to Behavioral Therapies for Children With Autism Spectrum Disorder
Presenter: Sarina Kier MA, CVT
This one-day workshop will introduce participants to the importance and success of a complementary multi-disciplinary approach to accelerate all aspects of a child’s development. Emphasis will be placed on biological medicine.
Discussions will include: · What is and why use a multi-disciplinary approach · The importance of your child’s complete history · Cleansing, healing, and rebuilding the body and brain · Navigating the significance of digestion, neurotransmitters, and nervous system development within ASD · A guide to following a practical bio-medical protocol · Diet, nutrition and supplements.
Location and Time: Saturday, February 21, 2004 9:00 AM - 3:30 PM -
PHP 3041 Olcott Street Santa Clara, CA 95054
Registration Information Fee: $100 per person
Make check payable to: Sandra Sentieiro, “Our Special Children” PO BOX 19598 Stanford, CA 94309
650.387.7810
=====
TASK Accessing the Internet: A Surfin' Safari
Date – February 24, 2004
Where: TASK, 100 W. Cerritos Ave., Anaheim, CA 92805.
When: 8:30am - 1:00 pm
Contact Info: 866-828-8275
Fees: $25 / half day, $35 / full day, $45 / two-day
Information
provided by course provider: Basic Internet Training. Have you ever
wanted to learn how to "surf" the internet? Here's your chance!
You will learn about e-mail, search engines, browsing, and learn the
definitions of commonly used "internet terms." We will also
provide suggestions on where to access the internet for those who do not have a
computer. There will be some "hands on" training available.
More information about this course can be found at http://www.taskca.org.
=====
TASK IEP Rights and Strategies
Date: February 28, 2004.
Where: TASK, 100 W. Cerritos Ave., Anaheim, CA 92805.
When: 8:30 am - 4:30 pm
Contact
Info: 866-828-8275
Fees: $25 / half day, $35 / full day, $45 / two-day
Information
provided by course provider: An overview of the rights and protections
mandated for special needs children by the Individuals with Disabilities
Education Act and Section 504 of the Vocational Rehabilitation Act.
More
information about this course can be found at http://www.taskca.org.
=====
Finding Ourselves - 2004 FACT Conference
Date: Saturday, March 6, 2004
"FINDING BEN: A Mother's Journey Through the Maze of Asperger's" And her son, Ben Levinson. Also, Linda Andron-Ostrow, LCSW, Editor of "Our Journey Through High Functioning Autism and Asperger Syndrome: A Roadmap, and Glen Darlington shares his life with you about growing up with high functioning autism.
Location: DE NEVE CONFERENCE PLAZA – UCLA (Located at the Northwest portion of the campus, between Sunset Village and Tom Bradley International Hall. Suggested parking: Lot 8).
Time:
10 AM TO 3 PM.
Costs: $50 Individuals - $80 Couples Lunch tickets - $10 or Bring
your own bag.
Please subscribe to our email list for further information and registration
forms or call the office at (310) 475-9620 and leave your name and address.
=====
Transition
To Adulthood Services Presented By Team Of Advocates For Special Kids (TASK) Hosted
By Regional Center of Orange County
A
workshop focused on coordinating services from school to adulthood.
Supported employment, independent living, recreation and post-secondary
education will also be discussed. An overview of the Individualized
Transition Plan within the IEP will be included.
When:
Saturday, March 6, 2004, 8:30 a.m. to 4:30 p.m.
Where: Regional Center of Orange County South Office 26311 Junipero Serra Road,
Suite 180 San Juan Capistrano, CA 92675. Space is limited to 35 people.
Reservation required-please contact Thelma Day at (714) 796-5223.
=====
Picture Exchange Communication System (PECS) 2-Day Workshop – San Diego
March 15 & 16, 2004: Picture Exchange Communication System (PECS) 2-Day Workshop Presented by Donna Banzhof, M.Ed. and Christine Cavarretta, BCBA
Holiday Inn Mission Bay Sea World
$375 professional tuition, $235 parent/student tuition, includes 2nd Edition PECS Manual and handout packet for note taking
Sara Moore at smoore@pecs.com or 302-368-2515. Mention Sara Moore on your registration form and receive a $20 discount on the one-day workshops and a $30 discount on the two-day workshops.
=====
Workshop 4: Teaching Verbal Behavior to Children with Autism and other Developmental Disabilities Hands-on workshop for Tutors and Therapists
March 22- 24, 2004 in Southern California (most likely Torrance or Redondo Beach)? We will have only 21 openings. More details to come.
For
more info: Sabrina Y. Marasovich, M.A., Board Certified - Resources in Autism
Education - (310) 320-5856 – web: www.autismed.com
=====
Estate
Planning
Seminar
When: Thursday, April 22, 2004
Metlife
and Attorney Chris Poulos will discuss the importance of a special needs trust,
and other aspects of planning and protecting the future of a loved one with a
developmental disability.
Time: 6:30 to 8:30
p.m.
Locale:
Regional Center of Orange County-East Area Office, 801 Civic Center
Drive, Board Room B, Santa Ana, Cost:
FREE
Reservations (English recording) can be made by calling (714) 796-5100 ext.
5904.
=====
Autism
Conference announced for Southern California by CASD.
Location: Long Beach – May 14-16
Watch web site for speaker list: http://www.casdweb.org/index.htm
If you have questions or would like more information, please email the director at kazuko@grandecom.net.
=====
Autism One Conference – MAJOR conference in CHICAGO, IL. Yes, that is far, but the speaker lineup and content is AMAZING. For more details: www.autismone.org
Dates: May 27-30, 2004.
=====
DAN! (Defeat Autism NOW!) CONFERENCE UPDATE:
Spring DAN! Washington D.C. - April 16-18
Fall DAN! Los Angeles, CA - October 1-3
Watch www.autism.com/ari for more details!
______________________________________________________________________
9) SOCIAL EVENTS:
- South Coast Plaza FREE Carousel rides!
Come join us for a morning of horse rides and fun at South Coast Plaza!
Dates:
Next date is: Saturday,
February 21st (CONFIRMED)
Times: 8:30 am - 9:30 am
(BEFORE the mall opens)
Local:
South Coast Plaza by the
carousel (NOT the Crystal Court carousel!)
Costs: FREE!!!!!!!!!
Park: Park by ZTejas Restaurant
DAY OF SHARING
Date: March 27th, 2004, the Orange County Chapter of the Knights of Columbus will once again be sponsoring the Day of Sharing for the Developmentally Disabled of Southern California.
This event is a daylong festival of fun, food, entertainment, and game booths with prizes for everyone, provided at NO CHARGE.
Where: St. Pius V Church Grounds 7691 Orangethorpe Ave. Buena Park, CA
When: Saturday, March 27th 10 a.m. to 3 p.m.
Please RSVP to Gabriel Ruiz at (714) 839-0564
--------------------------------------------------------------------------------------------------------------------------------------
10) Personal Note:
I try not to get discouraged with the different portrayal of autism in the media. It seems like over the past two weeks, there has been the most news coverage I have seen than any other time period over the past four years. At last count, there were over 25 articles following the IOM meeting from February 9. You could pick from a handful of articles each day, which article you agreed with and which one you did not.
The other amazing factor to me was “how could these articles that are so different be about the same meeting?!!” It appeared as if the reporters were speaking about completely unrelated events, not the same meeting. The good news for me is that autism is in the headlines. While I may not agree with each article published, I appreciate that autism is top of mind. In addition, it appears with all the coverage and type of coverage portrayed that autism will be top of mind for some key decision makers. Let’s pray and think good thoughts that these folks make some good decisions for the many affected by autism. It is something I think about before I go to bed every night.
And on a side note: Is cold and flu season over yet? I don’t know about your family, but this year seemed no different than the past few years with about 3 colds/flu that hit our family starting in October and continuing today. I have taken several “new and improved” supplements to help build the immune system and it does not feel like I am any healthier! I look forward to when the month of March has come and gone and spring returns with good health! I hope this newsletter finds your family in good health!
Hugs, thanks, and be SAFE,
Lisa A Jeff's mom
Web Page for the TACA GROUP: www.tacanow.com - check it out/let me know your thoughts at contact us!
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.
P.S. TACA e-news is now at 1,073