http://www.pittsburghlive.com/x/pittsburghtrib/s_457595.html
By Liz Hayes
VALLEY NEWS DISPATCH
Sunday, June 11, 2006
Shelby Hainan can name dozens of things that would make life with her 6-year-old autistic son easier.
She wishes a nearby school district had an autism support classroom so she wouldn't be faced with the decision of home-schooling Tyler next year, sending him to a class that's a half-hour drive away or having him remain in an emotional support classroom at Kiski Area School District that doesn't suit his needs.
She's working with limited resources -- both in her finances and in the area's professional services -- to get Tyler the correct level of medication and behavioral, speech and occupational therapy to keep him calm and focused enough to learn.
And she's trying to scrape together enough money to build a fence around her Washington Township home so she can take Tyler outside without worrying about him bolting into traffic on nearby Route 66 or disappearing into the surrounding woods.
"I cannot take my son outside because it's not safe," Hainan said as she looked into her tree-lined, sunny back yard from the inside of her locked house.
Hainan is not unique in her experience with autism and her criticism of the availability of services in the region. As the rate at which autism spectrum disorders are diagnosed continues to rise dramatically, more and more families are likely to share her problems.
Federal legislation sponsored a year ago by Sen. Rick Santorum would help address some of the difficulties experienced by families affected by autism.
The Combating Autism Act, proposed in April 2005 by Santorum, R-Penn Hills, and Sen. Christopher Dodd, D-Connecticut, would funnel almost $1 billion over five years toward exp anded research and improved diagnosis, treatment and professional training.
One of the bill's provisions would require all children to be screened for autism before they reach their second birthday because research has shown that early intervention of therapy and educational services helps children with autism or other developmental disorders to overcome their disabilities.
Sharon Huss, a New Kensington resident and former therapy provider, said the services her autistic son, Daniel, 2, receives have made a significant improvement in his language and communication skills.
"We've been really blessed with our early intervention program," Huss said, noting that Daniel is able to communicate through sign language.
Huss also advocates better training for pediatricians so they can recognize the symptoms of autism earlier, which could get autistic children into early intervention programs sooner.
The Combating Autism Act includes money for training programs for doctors, scientists and other health professionals to improve diagnosis and treatment of autism.
The act also would double the number of Autism Centers of Excellence, which were established in 2000 by the National Institutes of Health to centralize research on the causes and treatment of autism.
Another requirement would be for the National Institutes of Health and the Centers for Disease Control to create long-range goals for autism research and to continue to centralize autism research among the many government agencies involved.
Howard Carpenter, the chief executive officer of the Pittsburgh-based Advisory Board on Autism and Related Disorders (ABOARD), said his organization is very supportive of the Combating Autism Act.
"There's not a bill that's perfect, but this is a substantial piece of legislation," Carpenter said. "It will benefit the autism world.
"This will double autism funding at the National Institutes of Health," Carpenter added. "This is a tremendous improvement over the past."
Tracy Grieve-Martin, the clinical director for North Huntingdon-based therapy provider Family Behavioral Resources, said any legislation that increases funding for research and training would be welcomed.
"Most therapists weren't taught about autism in school," Grieve-Martin said. "We learn about it in the field."
With better-trained therapists working with children whose autism was diagnosed sooner, Grieve-Martin said autistic children have a better chance to thrive and lead normal lives.
"The diagnosis rate is just skyrocketing," Grieve-Martin said, noting that FBR treats 800 autistic children in the region. The agency has 13 offices, including one in New Kensington.
Carpenter noted that, while autism advocacy organizations are supportive of the legislation, some are concerned that language authorizing research into possible environmental causes of autism could be cut.
Some people believe that thimerosal, a mercury-based substance once used as a preservative in childhood vaccines, causes or helps trigger autism. Not only are many autism cases diagnosed at about the time that children finish a series of childhood immunizations, but many of autism's symptoms can mimic those of mercury poisoning.
Many government-sponsored studies have tried to rule out thimerosal's role in autism but parents and autism support organizations have not been convinced, questioning the impartiality and accuracy of the studies.
E-mails circulated by organizations including ABOARD have accused American Academy of Pediatrics' lobbyists of working to remove environmental research language from the bill.
Marjorie Tharp, a spokeswoman for the academy in Washington, said the organization has not taken a position on the legislation and is not lobbying for or against it.
"The American Academy of Pediatrics (AAP) supports ongoing research to determine the cause or causes of autism, to improve screening, diagnosis and treatment st andards and to find ways to prevent it," she said.
A spokesman for the National Institutes of Health declined to comment on the bill, noting that it was NIH policy not to take a position on pending legislation.
A Santorum spokesman said the bill's language is being finalized among members of the Senate's Health, Education, Labor and Pensions Committee, but he said provisions for environmental research will remain in the bill.
"We absolutely are keeping in the environmental research," said Robert Traynham, Santorum's director of communications.
However, he said research into thimerosal and vaccines likely won't be mentioned in the bill because it is unusual for legislation to be that specific in identifying research topics.
"It is preferred to let the science lead where it leads, not exclude any possibilities or draw any preconclusions," Traynham said.
He noted that it is very rare for Congress to get involved in disease-specific legislation, and that the bill is unlikely to pass unless it is widely supported by the autism community.
"They (Congress) won't go near this with a 10-foot pole if there is not a consensus," Traynham said.
Traynham said Santorum hopes the committee will approve the Combating Autism Act in the upcoming weeks and that it will go to the entire Senate for a vote.
"We strongly believe something needs to be done about autism," he said. "(The legislation) is timely and very much needed."
It couldn't come too soon for Shelby Hainan and her son, Tyler.
"They're not talked about as much as other special needs kids," Hainan said of autistic children. "If you've got a mental retardation diagnosis, you've got it made. They have the facilities and services for them.
"I'm always fighting somebody for him," she said.
She gazed around her modest home, where she uses dog leashes to secure her kitchen cabinets, locks every door and has cleared the shelves of knickknacks to prevent Tyler from smashing valuables or smearing food on himself.
"You can't leave him alone for 20 seconds or it's a disaster," Hainan said. "But I'm crazy about him. I'd have him all over again."
About autism
Autism is a developmental disorder associated with a wide range of behavioral, communication and learning problems. It is classified under the umbrella of autism spectrum disorders, which include Asperger syndrome and pervasive-development disorder as well as classic autism.
Part of the difficulty in diagnosing and treating autism lies in the disparity in symptoms.
Some autistic children never speak while others can talk normally. Some throw tantrums over something as simple as a missing puzzle piece while others rarely react to their environment. Some have severe mental retardation while others have few learning problems.
Other characteristics include obsessive-compulsive tendencies, problems with sensory overload and self-stimulating behaviors such as h and-flapping, rocking and jumping.
Prevalence of autism
Although no national data exist that clearly show how common autism has become, research by the Centers for Disease Control and Prevention indicates that from 1 in 500 to 1 in 166 children are diagnosed with an autism spectrum disorder.
The CDC estimates 24,000 children are diagnosed with autism every year -- or about one child every 20 minutes.
Autism is more common than all other developmental disabilities except for mental retardation, which affects about 1 in 100 children.
Prevalence rates for other childhood disorders and illnesses include:
• Cerebral palsy: 1 in 350
• Diabetes: 1 in 400 to 500
• Cancer: 1 in 6,600.
Liz Hayes can be reached at lhayes@tribweb.com or (724) 226-4680.
TWO Joint Statements from the National Autism Association and SafeMinds on the Combating Autism Act of 2006
Statement One
With all of the recent activity and controversy surrounding this legislation, we wanted to provide a more detailed update to everyone on the efforts of NAA and SafeMinds, much of which has had to remain behind the scenes up until this point. As some people unfriendly to our community also read these lists, we haven’t wanted to risk tipping our h and to them, possibly threatening our ongoing work to get the most we can for our kids from this bill. However, we think it is important to set the record straight on our activities and motivations, since unfortunately these have come into question recently on this list. Since the consideration of the CAA provides an unprecedented opportunity to mobilize federal resources for our children, we have been motivated to work as hard as we can to get something positive and meaningful for vaccine-injured children out of this legislation.
NAA and SafeMinds were involved early on with the Combating Autism Act, although as with other organizations focusing on the role of environmental factors in creating the autism epidemic, we were excluded from participation in the initial drafting of the legislation. As a result, we were presented in the original draft of April of 2005 a piece of legislation that we did not want to support. Three important areas were neglected: research into vaccines and thimerosal, greater oversight from the community, and support for biomedical treatment. Representatives from SafeMinds and NAA, working with other organizations including A-CHAMP, NoMercury and Generation Rescue decided together to work with groups such as Cure Autism Now and Autism Speaks that were involved in drafting the original legislation to draft another version of the bill that would address the obvious shortcomings of the original version. Many teleconferences ensued as the language was variously considered, written, inserted, deleted, rephrased, re-inserted, and so on, until we finally came up with a version that all involved at that time could support. This community consensus version was a significant achievement for all members of the autism community.
Last week, nearly a year after the re-writing phase was in progress, we received a revised version from HELP committee staffers that differed in numerous ways from the consensus version. Most prominently, the vaccine research language was officially stripped from the consensus version of the bill. In addition, there were many other drawbacks to the revised version that represented a step backward from the consensus draft. Those of us with NAA and SafeMinds were as disappointed and frustrated as anyone else at the deletion of the vaccine research language and were also deeply concerned about the other changes.
At the same time, the revised bill language had retained some positive attributes from the consensus version. There were major increases in unrestricted research funding. For the first time ever, there was an official declaration of support for research into the environmental causes of autism. The role of the CDC was substantially diminished relative to the original draft and there were provisions for funding for treatment. As we are constantly reminded, many members of Congress oppose the funding of disease specific bills, and the passage of this legislation would represent an historic achievement for the autism community.
Representatives from the community met on Friday, July 15 with the HELP committee staff who explained that there was absolutely no way that the HELP senators would pass the bill with the vaccine language intact. We learned, however, that the reference to environmental research would remain and the bill would be brought to the Senate floor accompanied by legislative history stating clearly that the intent of the environmental research is to include all possible causes of autism, not excluding thimerosal.
This meeting was viewed as a final opportunity for the organizations to express concerns and objections on the bill before the final draft was to be completed on the following Tuesday. NAA and SafeMinds presented - in writing and verbally - our concerns on the following 3 areas:
1. The importance of NIH accountability for research spending and provisions for increased participation and oversight from the autism community.
2. Treatment and evaluation should not exclude biomedical approaches like gastro, metabolic, toxicologic, etc.
3. The allocation of funds to NIEHS as opposed to NIH.
In large part, these concerns were addressed by the committee to our satisfaction. Since no other objections were raised, it seemed that the community left the meeting feeling hopeful that we would still come out at the end of this process with a bill we could work with.
When the manager’s amendment was released on Tuesday, it contained several new problems and, again, many individuals within both NAA and SafeMinds considered declaring official opposition to the bill. The most glaring problem was the addition of language stating that the environmental research was subject to availability of appropriations. Since every bill in Washington is subject to appropriations, we were concerned that this proviso was added to the environmental research section and nowhere else, suggesting a hierarchy of research funding with environmental research at the bottom of the list. We pointed this out to a HELP staffer and the staff immediately agreed to resolve that issue by adding the appropriations reference throughout the bill, not just under environmental research. This left us with several other concerns that could be addressed during the process of "technical and conforming" changes made after the markup on Wednesday.
While considering our options in the hours following our review of the manager’s amendment, Wendy Fournier, Scott Bono, and Jim Moody met with several HELP Committee Senate offices in Washington, visiting personally with Senator Reed and Senator Sessions of the HELP committee and communicated regularly with those of us contacting HELP staff by phone. After again considering our course of action, we decided that rather than backing away from negotiations and publicly withdrawing support, we would communicate our specific concerns privately to the HELP committee, and search for solutions that would improve the bill to the greatest extent possible before it was too late to have a say in the final outcome.
We submitted a letter to the HELP committee that included six specific areas of concern with the Manager’s Amendment:
1. The addition of the phrase “subject to the availability of appropriations” in the two most important areas to many of us, the strategic plan and increased non-center research, and the Centers of Excellence on Environmental Health and Autism. Singling out these two critical areas could send a subtle signal that they are of lesser importance than others. The staff had already agreed to a conforming change to apply the phrase throughout all sections of the bill, but we felt we needed to reconfirm this critical point.
2. The addition of a new section: "The Secretary, acting through the Director, may consolidate program activities under this section if such consolidation would improve program efficiencies and outcomes." This raised concerns that the environmental centers could be merged into the activities of the ACE centers, risking the needed focus on environmental research. We suggested a conforming change moving that language to the section on the strategic plan so that the bill would be specifying that research should not be duplicated within the plan, and would leave the research centers intact.
3. The addition of a new provision for involvement of the CDC Director for best practices, an unprecedented role for CDC creating a potential for conflict between NIH and CDC in carrying out NIH's research mission. We believed this was inadvertently inserted in the bill in the wrong place and should have been in the Centers of Excellence in Epidemiology section. The staff agreed to a technical correction to move this provision to the appropriate section.
4. The addition of "rule out" language which could be read to apply to treatments and intervention strategies and might also affect insurance reimbursement and malpractice litigation. Staff indicated to us that “rule out” applied only to diagnosis. We suggested technical corrections to read: "The Secretary, acting through the Director, shall promote research to determine evidence-based best practices for diagnosis (or ruling out a diagnosis), treatment, and intervention strategies for individuals with autism spectrum disorder and other developmental disabilities." The HELP Staff agreed to change the language as suggested.
5. The omission of vaccine/thimerosal language from the bill. We have received assurances from the Senate staff that they will address this important omission in the legislative history presented with the bill. While thimerosal is a leading contender as to cause, the potential causative effects of vaccines in general and thimerosal in non-vaccine biological products must be included within the research m andate. We are still working with HELP Staff on this crucial item.
6. Establishing an Autism Advisory Board. Following up on a discussion SafeMinds and NAA had with HELP staff on Monday, we learned that the Executive Branch can establish advisory committees that provide oversight for federal activities without express authorization from Congress. Recognizing the difficulty of incorporating this item from the community consensus in actual statutory language, we suggested applying the IACC m andate to recommend opportunities for improved public participation. Either the Secretary or Director on their own, or the IACC by recommendation, could establish an advisory board structured as suggested by the community. We are still in negotiations with the HELP Committee on this important oversight board.
After reviewing the CAA as reported out of committee on Thursday that has already been posted here, we believe that four out of the six issues we raised have been successfully addressed. Our dialogue with HELP committee staffers and Senate offices of HELP committee members is ongoing to resolve item numbers five and six that can be addressed through report language and/or colloquy.
We hope that this will help alleviate the doubts that have been raised regarding the commitment to our children on the part of NAA and SafeMinds in our h andling of the process. Withdrawing our support has been ( and remains) a serious option and we underst and why other groups have chosen that route based on the current situation. But in our view, hanging on to the idea that we could still keep the consensus version of the bill (a version we all knew at the time it was drafted would be subject to further negotiation and changes) would not deal with the problem in front of us. We found ourselves presented with a new reality. Either we could continue to work the problem and seek practical solutions or we could walk away. We chose to stay at the table, continue to negotiate, and fight for our kids. NAA and SafeMinds reasoned that if we didn’t work with the new bill presented while there was still time to influence the final outcome, then there would be no one representing our side in the process and making sure our children get the best possible future treatments and research they deserve. We are continuing to negotiate with HELP staff and no matter what the final outcome is, we want parents to know that we left no stone unturned in trying to secure some benefit for our vaccine-injured children from this legislation.
Lastly, despite bizarre rumors to the contrary, NAA and SafeMinds will not receive financial benefits of any kind from this legislation. As parents, however, it is our most sincere hope that the bill will lead to urgently needed environmental research into the causes and cure for all of our children.
Sincerely,
National Autism Association
SafeMinds
Statement Two
We share the concerns expressed earlier today by A-CHAMP, Moms Against Mercury, NoMercury, and individuals within our community regarding the version of the Combating Autism Act distributed yesterday. Since reviewing this latest version, we have been actively engaged with HELP Committee staffers both in person and through teleconference to address these concerns in the hope of obtaining a bill that will truly benefit our children. There are recent encouraging developments that we want to share with all of you.
One thing we want to emphasize is that there are many positive aspects to the bill, most notably the allocation of $1 billion in federal funds to autism over five years. Perhaps of most significance to many in our community are the bill's provisions for funding specifically directed towards environmental research. This is the first federal legislation to acknowledge the existence and importance of environmental factors in the development of autism.
While this bill provides a great opportunity to direct large amounts of resources to helping our children, we must be diligent in ensuring that these taxpayer dollars are well spent. Therefore, it is important to both raise legitimate concerns, and to make sure that such concerns are addressed. Here are a few examples of what has transpired over the past 24 hours.
One area of concern involved the addition of the phrase "subject to the availability of appropriations" in two areas of critical importance: the strategic plan and increased non-center research, and the Centers of Excellence on Environmental Health and Autism. Discussions with staff last night led to an underst anding that technical/conforming changes could be made so that the same phrase "subject to the availability of appropriations" would be used throughout all sections of the bill. This change will re-establish the parity among sections of the consensus version of the bill.
Another concern involved is the repeated use of the term "rule out" as in the following example:
The Secretary, acting through the Director, shall promote research to determine evidence-based best practices for diagnosis or rule out, treatment, and intervention strategies for individuals with autism spectrum disorder and other developmental disabilities .
We initially feared the term was used in relation to treatments and interventions and raised the issue with the HELP staff. We have been assured that "rule out" is only being used in reference to diagnosis of Autism Spectrum Disorder, and has no implications for treatment or any other area beyond diagnosis. We are working with the staff for further clarification so that there will be no room for misinterpretation of this phrasing.
The ultimate passage of legislation that will hold to our children's best interests depends on continuing negotiations with those on the Hill who have been involved with the bill since its early stages. To that end, we are maintaining an ongoing dialogue with the HELP committee staff and will continue to update you as we learn more. As with all of you, we are committed to working towards the very best legislation we can get for our children.
Sincerely,
National Autism Association
SafeMinds
STATEMENT FROM A-CHAMP REGARDING THE COMBATING AUTISM ACT
In November 2005 A-CHAMP made a commitment to many autism organizations, the community and our children to support the consensus revision version of the Combating Autism Act. see: http://www.a-champ.org/combatingautismactrevisednew.html The consensus revision bill contains a modest provision for vaccine, vaccine component and vaccine preservative research. This is the bill A-CHAMP supports and we have worked hard to advocate for the revised bill. We have kept and will continue to keep our promise to the community.
If other organizations choose to break the consensus and support legislation that drops the vaccine research provision their action will be evident to the community.
If the vaccine language is dropped from the final bill that is introduced in the Senate or House, A-CHAMP will advocate for language to be incorporated into the legislative history that will support vaccine research. But make no mistake: any communication to the Senate that suggests it is acceptable to drop the vaccine research language is a breach of the promise that the organizations made to each other when they joined the consensus.
Everyone compromised on the consensus language. A-CHAMP does not view every provision in the consensus revision bill favorably but there is enough in the revised bill to make the entire package worthwhile.
Some organizations have criticized A-CHAMP for taking a strong position on the vaccine language, claiming that a bill containing the vaccine research language will not pass the Senate, and to vigorously support a bill with the vaccine research language will kill the bill. A-CHAMP regards that criticism as misguided. Pressure must be brought to bear for what we want. If the "fix is in" in the HELP committee and the vaccine research language is dropped we must nevertheless st and up for what we want and what our children need. There is no good reason to omit vaccine research from the bill - it is but a small part of the revised bill. If we fail to push for the vaccine research provision those in the Senate who have yielded to pharmaceutical and AAP lobbyists will think that our community has no backbone, and will always sell out our kids for political expediency. The suggestion that continued advocacy for the vaccine research language jeopardizes the bill is wrong, and is a distortion of the legislative process that has occurred. Communications that signal the Senate that it is acceptable to disregard our consensus represents unprincipled posturing by persons or organizations that seek to curry favor with politicians, at the expense of our children.
There is never sufficient justification for actions that place political positioning and expediency over efforts that make our community unified and strong. If our community were sufficiently unified and strong we could tell the Senate: NO!, that is not what we wanted, and we would be able to come back to the Senate and win a stronger bill. Unfortunately, the day for our community's unity and strength is yet to be realized.
A-CHAMP has never opposed the Combating Autism Act but we cannot endorse the omission of vaccine research language from the final bill. We will continue to advocate strongly for research in the one area of autism research that has been neglected: research into vaccines, vaccine components and vaccine preservatives. We will continue our advocacy in other areas that benefit our children, such as health insurance coverage, education and funding for lifetime care.
If other autism groups break their promise to the consensus for the sake of political expediency that is their choice. A-CHAMP will maintain its consistent position, one that is based on principle, a commitment to our community and, most importantly, a commitment to our children.
Thank you.
Robert J. Krakow
President, A-CHAMP
New Vaccine Safety Legislation – Weldon:
http://releases.usnewswire.com/GetRelease.asp?id=69803
National Autism Association Endorses 'Vaccine Safety and Public Confidence Assurance Act of 2006'
7/26/2006 12:54:00 PM
To: National Desk
Contact: Wendy Fournier, ( Portsmouth, RI), 401-632-7523, Rita Shreffler, ( Nixa, MO), 417-818-9030, both of the National Autism Association
WASHINTON, July 26 / U.S. Newswire/ -- The National Autism Association (NAA) today announced its support for vaccine safety legislation presented by U.S. Congressman David Weldon, MD (R-FL) at a press conference held this morning. Co-sponsored by Congresswoman Carolyn Maloney (D-NY), the Vaccine Safety and Public Confidence Assurance Act of 2006 would for the first time create a separate agency to oversee and implement vaccine safety research. The proposed Agency for Vaccine Safety Evaluation would conduct vaccine safety research currently under the purview of the Centers for Disease Control and Prevention (CDC), the same agency charged with promoting high vaccination rates. In recent years, the CDC has been the subject of criticism from a growing number of parents and independent researchers for its h andling of vaccine safety thought by many to take a back seat to vaccine promotion.
"Congressman Weldon's legislation is crucial if eroding confidence in the safety of vaccines is ever to be restored," stated Scott Bono, NAA board member and father of a vaccine- injured son. "The inherent conflicts of interest with having the CDC recommend and promote vaccines and then evaluate its own recommendations as to safety have led to widespread distrust of this agency's ability to put the health of consumers first. Non- biased government research has been a critical missing piece in our underst anding of an increasingly aggressive vaccine program, and especially of its effects upon pregnant women and young children."
According to a UPI article in July 2003 entitled "The Vaccine Conflict", children under the age of two receive nearly 40 doses of various vaccines, double the number since the mid-1980's, all m andated by the CDC. The article states that:
-- Members of the CDC's Vaccine Advisory Committee get money from vaccine manufacturers. Relationships have included: sharing a vaccine patent; owning stock in a vaccine company; payments for research; getting money to monitor manufacturer vaccine tests; and funding academic departments.
-- The CDC is in the vaccine business. Under a 1980 law, the CDC currently has 28 licensing agreements with companies and one university for vaccines or vaccine-related products. It has eight ongoing projects to collaborate on new vaccines.
In addition to removing the potential for conflicts of interest to better oversee vaccine safety, the Agency for Vaccine Safety Evaluation is expected to conduct research long ignored by the CDC. For example, the long term impact of a single vaccine on the immune system and when given simultaneously with other vaccines has never been investigated. Another study yet to be conducted is that of fully-vaccinated vs. unvaccinated children in relation to health status including obesity, asthma, cancer, juvenile rheumatoid arthritis, diabetes and neurological disorders including ADHD, Tourette's, Bipolar Disorder and autism.
According to NAA Vice President Ann Brasher, "It hasn't been lost upon parents that the rates of neurological and other disorders among the children of this nation have risen alarmingly and are in direct proportion to the addition of numerous vaccines to the routine pediatric schedule over the past two decades. The CDC has yet to address the concerns of parents and have made it clear they don't intend to. Congressman Weldon's legislation is essential in establishing a trustworthy agency to conduct desperately needed vaccine safety research."
For more information: http://www.nationalautism.org |
