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In This Issue:
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SPECIAL
Obama and Clinton Respond to
Autism Questionnaire
Your Vote Counts
This questionnaire comes from A-CHAMP with this introduction.
Senators Clinton and Obama responded to the A-CHAMP Autism Issues Questionnaire earlier in the campaign. Given the importance of tomorrow’s Pennsylvania primary and the remaining primaries to follow, we wanted to provide this information again to undecided voters.
The following responses are unedited. Senator Obama’s comments are first because his campaign responded first. A-CHAMP does not support or oppose any candidates for elected office.
Senator Obama's Response to the A-CHAMP Autism Issues Questionnaire
Will you fully fund the Individuals with Disabilities Education Act?
As a member of the Illinois State Legislature I fought to support special education and as a U.S. Senator I have continued that fight. As president, I will fully fund IDEA so that we provide children with the support they need to receive a free and appropriate education in the least restrictive environment based upon best practices and with the goal of fully including them in schools and the community. As the number of children diagnosed with autism spectrum disorders (ASD) increases, we must ensure that teachers, classrooms and school districts are prepared to meet their special needs.
Do you believe that the Combating Autism Act provides enough money to find the cause, or causes, of autism andeffective treatments?
I supported the Combating Autism Act of 2006. It was a good start. As President I will make sure that money appropriated by Congress for autism spectrum disorders reaches the organizations and people that they were intended for. Research is important but it is only one of the steps we need to take. Americans with ASD should be supported throughout the lifespan. Early diagnosis and early intervention has been proven to lessen the amount and intensity of services Americans with ASD need as they grow older. We must appropriate the funds needed to support all Americans with disabilities. As president, I will go beyond the Combating Autism Act to develop a comprehensive autism policy that invests $1 billion annually by the end of my first term in office to address ASD on all fronts. I will also ensure that all federal efforts to combat ASD are coordinated through a central Federal ASD Coordinator who will work across agencies to better coordinate ASD research, awareness, treatment, and support for families.
How much funding will you request to study potential environmental triggers of autism?
There is much evidence to suggest that ASD is a genetically-based neurological condition with environmental triggers. As president, I will lead an effort to conduct research to confirm these findings and study the potential triggers. We must find out why many Americans have ASD and other special needs, the causes, and best treatments and intervention.
Do you believe there is an autism epidemic in the United States?
Autism Spectrum Disorders (ASD) is the fastest growing developmental disorder in the United Sates and, perhaps the world.. One in 150 children is diagnosed with ASD. These numbers can not be explained solely by increased awareness or changes to the diagnostic criteria. It is a health crisis and I will act accordingly. There are many Americans with special needs. They will have a partner in the federal government under my administration.
What will you do to stop health insurers from discriminating against people with autism and their families?
Many parents and state legislatures have led the fight to prevent medical insurance companies from delaying and denying coverage to those with ASD, claiming it as a preexisting condition. Because of this, too many Americans with special needs and their families have struggled with a crushing financial burden. Many Americans have tried to do something about this, and I applaud their efforts. In South Carolina, for example, parents Marcella Ridley and Lorri Unumb and state senators Joel Lurie (D) and David Thomas (R) led the way in passing Ryan's Law, which ensured that children with ASD would get the treatments they need. Of course, after we create universal health care by the end of my first term as president, all Americans with ASD will have access to affordable and quality health care, regardless of "preexisting" conditions.
What will you do to assure that health insurers pay for promising new treatments and behavioral therapy?
As president I will work to create universal health care by the end of my first term so that all Americans have access to affordable health care. My health care plan will also improve the quality of care available to Americans and uphold the principle of mental health parity. I will also work to bring Americans with ASD, their families and experts together to deal with important issues, like standardization of treatments, diagnostics, screening, and support for promising new treatments and therapy.
Do you think vaccines should be investigated as a possible cause of autism?
I believe that the next president must restore confidence and open communication with the American people. This includes environmental policies and government funded research. An Obama administration will go where the science and the facts lead us, whether it is about climate change or toxic heavy metals in our environment.
What will you do to protect Americans, especially young children and pregnant women, from exposure to mercury through vaccines?
I support the removal of thimerosal from all vaccines and work to ensure that Americans have access to vaccines that are mercury free.
What will you do to provide for the lifetime care that 250,000 to 500,000 current children with autism will need in the future?
ASD is not just a medical issue nor a children's issue. ASD affects behavior, communication and socialization and means that Americans with ASD will have a lifetime struggle to fully integrate within the community. However, the nation must also work to recognize the valued role that Americans with special needs have within our communities. Americans with special needs must be supported throughout their lifetimes. As President, I will work with the special needs community to ensure that those with ASD acquire the skills and education they need, achieve to their fullest capabilities and live the independent life of a full citizen in their community. I will support programs that create opportunities, improve the quality of life and maximize potential for all individuals with ASD and their families.
Would you support a large-scale federal study of the differences in health outcomes between vaccinated and unvaccinated groups?
Experience has taught that effective medical research must be "large-scale" and well funded. I believe Americans should know must know the health effects that caused by the presence of mercury in vaccines. I will also support an examination of the National Vaccine Injury Compensation program, a program designed to compensate those injured by vaccinations.
Would you support a federal right for families and individuals to choose for themselves which vaccines they will use?
I support screening for a wide variety of diseases and disorders. Early diagnosis and early intervention are the best practice for most illnesses. I believe that every American has the right to access these screenings, and I believe that every American has the right also to refuse these screenings voluntarily if they so choose. I also support a thorough and independent review of our nation’s vaccination policies.
Are you satisfied that the federal vaccine approval process is free of conflicts of interests, transparent and rigorous?
As President, I will conduct a thorough examination of all federal programs to ensure that they are effective and operating in the best interests of the American people. And I will ensure that sound and unbiased science, not ideology, guides decisions made in my administration.
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Senator Clinton’s response to the A-CHAMP Presidential Candidate’s Questionnaire
Will you fully fund the Individuals with Disabilities Education Act?
Yes. I support fully funding the Individuals with Disabilities Education Act. Among my many efforts to fully fund IDEA, I co-sponsored the IDEA Full-Funding Act of2003 to finally fulfill the federal government's long-standing promise to provide for 40 percent of the average per pupil expenditure for each and every child with a disability. In 2005, I offered an amendment to provide $4 billion in additional funding for IDEA; the amendment failed by a narrow margin. I have been an advocate for people with disabilities throughout my career in public service. After graduating from law school in 1973, I went to work for Marian Wright Edelman at the Children's Defense Fund, walking door to door in New Bedford, Mass., to figure out why there were discrepancies between the number of school-age children and the number of children enrolled in school. What I discovered was heartbreaking - kids were kept out of school because of their physical disabilities. We submitted our findings to Congress and our study helped lay the groundwork for the Individuals with Disabilities Education Act, which mandated that children with physical, emotional, and learning disabilities receive a free, appropriate public education. As a Senator, I helped write the IDEA Reauthorization Act in 2004 in order to ensure that we have targeted resources dedicated to teacher training. As President, I will continue my fight on behalf of children with disabilities.
Do you believe that the Combating Autism Act provides enough money to find the cause, or causes, of autism and effective treatments?
A key aspect of my plan to address autism, which I unveiled in November, is to fully fund the Combating Autism Act, which the Bush administration has failed to do. Through this legislation, we can work to identify the causes of autism; provide funds for surveillance; and increase autism education, early detection, and intervention. As President, I will double investments in the National Institutes of Health's efforts to identify the causes of autism, including possible environmental causes. I will expand the Centers for Disease Control and Prevention's Autism and Developmental Disabilities Monitoring Network and I will create Centers of Excellence in Autism Spectrum Disorder Epidemiology. And I will require the Secretary of Health and Human Services to disseminate information about signs of autism, early screening, and training for professionals who deal with young children through federal programs that reach children and families - such as the Child Care and Development Block Grant, Head Start, and the Children's Health Insurance Program - and to pediatricians.
How much funding will you request to study potential environmental triggers of autism?
I am very concerned about the possible links between autism, the environment and other chronic diseases. Because there is so much we don't know, I not only support increasing funding for the environmental research authorized by the Combating Autism Act, but I've also introduced legislation - the Coordinated Environmental Public Health Tracking Act - that would enable us to link disease surveillance to environmental information, and investigate disease clusters. This bill would provide $100 million to monitor the environmental causes of disease. I have also proposed to increase the NIH budget by 50 percent over five years and to double it over 10 years. As President, I will provide a total of about $700 million annually to address autism. That funding will go toward expanding research to identify causes of autism as well as creating a task force charged with investigating evidence-based treatments, interventions, and services; improving access to post-diagnosis care; providing teacher training; providing planning and demonstration grants for adults; creating a National Technical Assistance Center; and guaranteeing quality, affordable health care.
Do you believe there is an autism epidemic in the United States?
Yes. Today, one in 150 children rare diagnosed with autism, for a total of about 25,000 eachyear. In sum, about 1.5 million Americans and their families are affected by autism today. This national health crisis is costing the United States at least $35 billion each year. I have long been a strong advocate for individuals and families impacted by autism. I have cosponsored the Combating Autism Act and introduced the Expanding the Promise for Individuals with Autism Act, in order to ensure that Americans living with autism could have access as quickly as possible to evidence-based treatments, interventions, and services. When I am President, I will dramatically boost research funding for autism and support services for families caring for an autistic loved one.
What will you do to stop health insurers from discriminating against people with autism and their families?
As President, it will by my top domestic priority to provide quality, affordable health care to all Americans, including those with autism. My American Health Choices Plan will ensure that no one is denied coverage, refused renewal, unfairly priced out of the market, or forced to pay excessive insurance company premiums because of pre-existing medical conditions or disabilities.
What will you do to assure that health insurers pay for promising new treatments and behavioral therapy?
My American Health Choices Plan will make quality health care affordable to every single American, including those with autism and their families. My plan will also create a BestPractices Institute that would work as a partnership between the existing Agency for Healthcare Research and Quality and the private sector to fund research on what treatments work best and to help disseminate this information to patients and doctors to increase quality and reduce costs.
Do you think vaccines should be investigated as a possible cause of autism?
I am committed to make investments to find the causes of autism, including possible environmental causes like vaccines. I have long been a supporter of increased research to determine the links between environmental factors and diseases, and I believe we should increase the NIH's ability to engage in this type of research. My administration will be committed to improving research to support fact-based solutions, and I will ensure that the NIH has the staff and funding to fully explore all possible causes of autism.
What will you do to protect Americans, especially young children and pregnant women, from exposure to mercury through vaccines?
I will ensure that all vaccines are as safe as possible for our children by working to ensure that Thimerosal and mercury are removed from vaccines. I plan to fully invest in our research agencies so they can protect our children's health, and so they can find the causes and cures for conditions such as autism.
What will you do to provide for the lifetime care that 250,000 to 500,000 current children with autism will need in the future?
Individuals with autism need assistance in many areas including education, employment, transportation, housing, health, and recreation throughout their lives. As President, I will provide support and resources to help them lead full, rich, productive lives. Under my plan, I will provide funding for a planning grant for states and a multi-year service provision demonstration grant program to increase access to appropriate services to adults living with autism, including job training, housing, and transition services for young people leaving school. I will also create a dedicated funding stream to help schools train teachers who work with children with autism spectrum disorders. With the autism prevalence rate among children now at 1 in 150, the need to identify and provide services for adults with autism will grow even more important in thecommg years.
Would you support a large-scale federal study of the differences in health outcomes between vaccinated and unvaccinated groups?
Yes. We don't know what, if any, kind of link there is between vaccines and autism - but we should find out. The lack of research on treatments, interventions, and services for children and adults with autism is a major impediment to the development of delivery of quality care. We need evidence-based research on what works and what doesn't in order to provide the most effective services for people with autism. In addition to a large-scale federal study, I will create a task force that would include significant representation from the autism community and would be charged with identifying gaps in evidence-based biomedical research, behavioral treatments, and services for children and adults with autism. The task force would present these findings to Congress and the Executive Branch and would make recommendations on how to make evidence-based treatments, interventions, and services available at the state and local levels. Once the task force has completed its work, I will provide funding to establish state-based demonstration grants to provide these evidence-based autism treatments, interventions, and services.
Would you support a federal right for families and individuals to choose for themselves which vaccines they will use?
As President, I will support efforts to ensure that vaccines are safe and effective, including independent reviews and large-scale studies. All Americans should have access to accurate and comprehensive information about vaccinations.
Are you satisfied that the federal vaccine approval process is free of conflicts of interests, transparent and rigorous?
I believe that we need independent, thorough, and comprehensive testing of all drugs, including vaccines, to make sure that they are safe and effective. I will ensure that the process of approving vaccines is based on science and research - not ideology or other motives. I will do everything I can to protect the health and well-being of American families.
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• • •
PUBLIC HEALTH
Drug Makers Push Easing Off-Label Rules
Industry Fears Backlash In the Wake of Scandals; A Chilly Capital Climate
By Alicia Mundy in The Wall Street Journal
tinyurl.com/4gylca
Drug-industry representatives are descending on the capital to protect their freedom to advertise their wares directly to consumers and to push for looser government restrictions on their ability to promote off-label uses of their medicines.
The industry has become worried about a potential regulatory backlash following recent scandals over the marketing of Vioxx and Vytorin, as well as voter concern about increasing drug prices. All three presidential candidates have been criticizing drug makers about pricing. Meanwhile, three congressional committees are pursuing investigations of drug-industry marketing practices.
"We have to be concerned that Congress will act too quickly in this atmosphere, without considering the problems they can cause the public by limiting the information flow to consumers," said Bob Hogan, chief executive of Cognito Communications, a Connecticut health-care marketing-strategy firm.
Ten major drug companies, including Pfizer Inc.; Bayer Corp., the U.S. unit of Bayer AG; AstraZeneca PLC; and Johnson & Johnson have formed a coalition to push for looser restrictions on off-label marketing. They will submit their arguments Friday to the Food and Drug Administration, which has been soliciting comments on its proposed off-label promotion guidelines. They are represented by former FDA Chief Counsel Daniel Troy, who is working with public-relations giant APCO Worldwide Inc.
Mr. Troy's group includes patient-advocacy organizations the National Alliance on Mental Illness and the National Organization for Rare Disorders. The group supports the ability of companies to disseminate articles from peer-reviewed medical journals to physicians and hospitals to inform them of new conditions for which drugs already on the market could be used but which the FDA hasn't formally approved.
The FDA said it isn't loosening the rules for industry, but clarifying them. Randall Lutter, the agency's deputy commissioner for policy, said the guidelines mandate full disclosure of any conflict of interest by journal authors in articles used in off-label promotion.
The push for off-label changes came just as the Journal of the American Medical Association suggested in two reports that Merck & Co. played down the potential risk to Alzheimer's patients of heart attack from its now-withdrawn painkiller Vioxx, and said the company had ghostwritten many academic articles favorable to that drug.
Drug-industry worries about new rules and a chilly climate in Washington were reflected at a conference here Thursday. More than 60% of participants polled during the annual conference sponsored by drug-marketing magazine DTC Perspectives said they think Congress may move to place limits on television advertising by pharmaceutical companies. Drug makers spend about $5.4 billion annually on TV ads, according to Nielsen Monitor-Plus.
One idea the drug marketers don't like: A proposal that ads contain a phone number that consumers can call to make complaints to the Food and Drug Administration.
+ Read more: tinyurl.com/4gylca
• • •
EVENTS
Biological Indicators of Autism, Mitochondrial Autism, Research Predictions
Biomedical Research & Treatments Track Sampler Autism One 2008 Conference
May 21-25 Chicago
Robert Nataf, MD presents: Improvement in biological indicators in Autism: properly define clinical improvement
The Urinary Porphyrin Profile has been used to assess environmental toxicity in autistic children with significant issues through elevations of mercury responsive metabolites, pentacarboxy, precopro and coproporphyrin. Growing evidence supports usefulness of the urinary porphyrin profile in monitoring of chelation therapy effectiveness, by showing in ¾ of cases real reduction in porphyrinuria and not rarely drastic drop in mercury specific compounds, translated in speech and behavior improvement. At the same time, Neopterin, which is a macrophage issued inflammation marker, and oxidized guanine nucleosides, used as markers of cytoplasm and nucleus nucleic acids oxidant damage, fall in proportion with toxicity markers, suggesting a unifying mechanism.
Jon Poling MD, PhD presents: Mitochondrial Autism—A Unique Subpopulation and Piece of the Puzzle?
Autism in the United States has reached epidemic proportions affecting 1:150 individuals. Such an increase in incidence cannot be explained solely based upon a genetic model. Autism likely results from the interaction between common genetic susceptibilities and environmental triggers. The complex multi-systemic disorder called Autism is defined by common behavioral symptoms, and is a syndromic rather than precise medical diagnosis. Autism certainly has multiple etiologies and should be considered autism(s). Until researchers have a firm grasp on biological markers in autistic subpopulations and correlate these findings with distinct risk factor genes, it will be impossible to unravel the mysteries of Autism, as a whole.
Mark Noble, PhD presents: Data, data, data: The three rules for creating change in autism research
All of those involved in the field of autism research share the goals of learning how to treat autism more effectively and to understand its pathogenesis sufficiently so as to learn how to reduce both severity and prevalence of those syndromes that rob children of the opportunity to lead independent lives. We also share the goals of developing therapies to a point where they are sufficiently accepted by health care providers as to reduce the considerable financial burden now falling to parents and other family members. But there is not yet a shared vision of how to achieve these goals, and it is on this issue that I will focus.
For a list of 100+ speakers and presentation abstracts (in progress) visit: www.autismone.org
• • •
MEDIA
Autism Heroes: Portraits of Families Meeting the Challenge, California Legislative Blue Ribbon Commission on Autism
The Real World of Autism on Autism One Radio
Tuesday, April 22. 1:30 EST www.autismone.org/radio
Shows archived for 6 months for your listening pleasure.
Guest: Dr. Barbara Firestone
Join Chantal Sicile-Kira and Dr. Barbara Firestone as they discuss the important work of the California Legislative Blue Ribbon Commission on Autism for which Dr Firestone serves as the Vice Chair. Dr. Firestone also talks about the Help Group, a non-profit serving children with special needs which she founded in Los Angeles. Also discussed is her new book Autism Heroes, where thirty-eight families share their stories, and are photographed lovingly by Joe Buissink. For more information visit www.thehelpgroup.org/index.php
• • •
COMMENTARY
Scott Brown Rallies America's Nerds to Embrace Their Rise to Power
By Scott Brown in Wired Magazine.
tinyurl.com/4zrof8
As an indifferently dressed white guy who counts Joss Whedon, musical theater, and March Madness among his interests, I don't think I can call myself a true, diamond-cut nerd — shapeless dork is closer to home. If anything, I'm a naturalized half-nerd, or what Benjamin Nugent, author of the fascinating mock ethnography American Nerd: The Story of My People, calls a fake nerd, a parasitic species that tends to nest in the media business. Which brings us to the big questions at the heart of Nugent's book: What is a nerd? And who gets to be one?
Just about everybody these days, and maybe that's a problem. Nerdiness, as has been noted repeatedly and self-referentially in these pages, is a hot commodity: You can see it in bands like Gnarls Barkley and Arcade Fire, in films like Napoleon Dynamite and Superbad, in television programs like Chuck and The Big Bang Theory, and in books like Nugent's. But while nerd chic may be all the rage, Nugent argues that it's just a fad, and the "real" nerds are still out there: furtive, defensive, some of them caped, and all of them stubbornly unassimilated, even in a society where ownership of electronics, skill in videogames, and knowledge of B-list comic book characters like Iron Man are considered hip essentials. In other words, a cool hip hop act may call itself N.E.R.D., but nerds will still be nerds: a despised minority most at home in rule-driven power fantasies involving busty, half-dressed half-elves — and the revenge of the jocks is right around the corner.
The thing is, I'm not sure what a "jock" looks like, outside of an old John Hughes movie. Turn on ESPN. Those burly guys in the NFL? Off the field, they're gamer geeks and have the Madden Bowl trophies from EA to prove it. Certainly there exists a Nerd Continuum, with Asperger's-afflicted adding machines at one end, iPhone-tapping hipsters at the other, and an agglomeration of misfits and fanboys crowding the middle. But that middle is growing. Not all of us call ourselves nerds, but everyone's nerdy about something. Nerdiness is a necessity in our niche-riddled age. The nerd, with his specialized argot, obsessive rankings, and targeted passions, is modernity's Bizarro World take on the Renaissance man (or woman).
In fact, the nerd contingent has become so large that even Barack frakkin' Obama is, as of this printing, rumored to be planning a trek to the ultimate nerd summit: Comic-Con in San Diego. If Obama's a nerd — or even pandering to nerds — then all bets are off. Bye-bye, Urkel! So long, Booger! Our ghettoization is over. The question now isn't Are you a nerd, but What kind of nerd are you?
+ Read more: tinyurl.com/4zrof8
Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.
• • •
CLARIFICATION
Last Thursday's Schafer Autism Report included some research that was titled, "65% Autistic Children Found To Have Mitochondrial Disorder". This can be misleading as some of the subjects were already suspected of having such problems in their selection. - Editor.
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Copyright Notice: The above items are copyright protected. They are for our readers' personal education or research purposes only and provided at their request. Articles may not be further reprinted or used commercially without consent from the copyright holders. To find the copyright holders, follow the referenced website link provided at the beginning of each item.
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