FEAT DAILY NEWSLETTER Sacramento, California

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RESEARCH

* Report: Autism, MMR Link Not Found (But Not Ruled Out)

* New GAO Draft on Higher Environmental Health Risks of Dioxinss

EDUCATION

* Court Rejects Schools' Appeal

ADVOCACY

* Autism Society of America Advocacy Talking Points & Funding Request

* Readers' Posts

Report: Autism, MMR Link Not Found (But Not Ruled Out)

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Some scientists and groups opposing immunization have long claimed that the MMR vaccine • used to fight mumps, measles and rubella • may cause Autistic Spectrum Disorders, more commonly known as ASD or autism.

The vaccine is required by law in all 50 states for children to attend school and day care, so the Centers for Disease Control recently requested that the institute • a private agency based in Washington, D.C. • complete an independent study on the issue.

The institute's Immunization Safety Review Committee findings, which were released on Tuesday, were based on reviews of several previous studies. The institute said the committee could not establish any link, but acknowledged it couldn't rule out the possibility "that MMR vaccine could contribute to ASD in a small number of children • because existing epidemiological tools may not have enough precision to detect the occurrence of rare effects like ASD."

Parents and some scientists believed the two could be linked because symptoms of autism begin to show within the first 2.5 years of life, around the same time children take their first MMR shot. Another is required around age 4.

Though there has been a recent increase in the illness, no current studies can link it to the vaccine.

"The rumor was running around and people who were anti-vaccine just grabbed onto this," said Sandy Hine of the Lorain County General Health District. "They've done some real controlled studies and it's simply not true, but I never thought it was anyway."

The CDC points to the study's findings as proof of no link. That news came as no surprise to doctors Paula Farner of Avon and Tom Smith of Avon Lake, both local pediatricians.

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New GAO Draft on Higher Environmental Health Risks of Dioxinss

" Concluded that dioxins could adversely

affect human health at lower exposure levels

than previously thought and that some adverse

non-cancer effects, such as reproductive and

developmental impairments, could occur at or

near the levels to which the general population

is now being exposed. "

Some dioxins, which are chemical compounds that share certain structural and biological characteristics, have been linked to adverse human health effects, including cancer. Often the byproducts of combustion and industrial processes, complex mixtures of dioxins enter the food chain and human diet through emissions into the air that settle on soil, plants, and water.

The Environmental Protection Agency (EPA) and other entities, such as the World Health Organization, began assessing the potential human health risks of dioxins in the 1970s, when animal studies on one of them—2,3,7,8-tetrachloroclibenzo-p-dioxin, or TCDD—showed it to be the most potent cancer-causing chemical studied to date. EPA’s initial assessment of dioxins was published in 1985. Since that time, there have been major advances in the scientific understanding of dioxin toxicity and significant new studies on dioxins’ potential adverse health effects. As a result, in 1991 EPA decided to conduct a reassessment of the health risks of exposure to dioxins. A draft of this reassessment was reviewed by a scientific peer review panel in 1995, and three panels reviewed key segments of later drafts in 1997 and 2000.

EPA plans to release its comprehensive reassessment report on the health risks of dioxins this year. According to EPA officials, the report will conclude that dioxins may adversely affect human health at lower exposure levels than previously thought and that most exposure to dioxins occurs from eating such American dietary staples as meats, fish, and dairy products, which contain minute traces of dioxins. These foods contain dioxins because animals eat plants and commercial feed, and drink water, contaminated with dioxins, which then accumulate in animals’ fatty tissue.

EPA plans to use its reassessment of the risks posed by dioxins to develop a risk management strategy to address the health risks identified and to determine whether the nation’s current air, water, and hazardous waste cleanup programs need to be changed to protect the public health. EPA’ s reassessment will be considered by the National Academies in an ongoing study of the implications of dioxin in the food supply, which is examining, among other things, options to reduce dietary exposure to dioxins.

Of the several hundred known dioxins, 29 are considered toxic to varying degrees. TCDD is the most widely studied dioxin and one of the most toxic. EPA’s reassessment report on the human health risks posed by dietary exposure to dioxins evaluates the health effects of TCDD and the 28 other compounds with similar structural and biological characteristics and varying toxic effects. According to EPA, its evaluation of the effects of these compounds is sufficient to characterize the effects of environmental dioxins in general.

Concerned about the potentially significant impact that EPA’s dioxin risk assessment report could have on consumers and on the food and agriculture industries, you asked us to examine several aspects of EPA’s reassessment of dioxins. As agreed with your offices, this report describes

(1) the data EPA used to estimate human dietary exposure to dioxins in the United States; (2) how EPA’s reassessment objectives, processes, analytical methods, and conclusions on the health risks posed by dioxins compare with those of the World Health Organization; and (3) the extent to which the draft dioxin reassessment report reflects the views of independent peer review panels that reviewed key aspects of the reassessment.

Also as agreed with your offices, our report provides information on the relevant scientific issues but does not render an opinion on the scientific merits of the reassessment. This report is based primarily on EPA ’s draft reassessment report dated October 2001, which EPA circulated for internal agency review, and on the two most recent peer reviews of key segments of the draft reassessment in 2000.

Results in Brief

EPA derived its estimates of human dietary exposure to dioxins m the United States from (1) various studies that chemically analyzed samples of 10 food types, (2) toxicity estimates of the various levels of the individual dioxins in these foods, and (3) estimates of the quantities of these foods consumed by Americans. To develop more reliable national estimates of dietary exposure, EPA incorporated into its analysis some food studies that were designed to be nationally representative.

However, as EPA notes in its draft reassessment report, the food data were limited in several ways. In some cases, the food sampling methods, or the number of samples collected, were not sufficient to reliably estimate average, nationally representative exposures. In other cases, the studies did not analyze the food samples for the presence of all the dioxins that EPA was assessing. Further, most of the samples were collected 5 or more years ago; therefore, they may not reflect current exposures if, as EPA believes, emissions of dioxins have continued to decline in the United States since 1995 because of air quality regulations.

Nonetheless, EPA believes that its estimate of average dietary exposure to dioxins is a reasonable characterization of current exposure because, for example, the emission reductions that have occurred since most of the food samples were collected are not believed to be as significant as earlier emission reductions. Regarding toxicity estimates, because sufficient data are not available on many of the individual dioxins, EPA used an approach that relies on data developed by the World Health Organization to estimate the toxicity of the various mixtures of dioxins identified in the 10 types of foods. Although this approach may overstate or understate the concentrations of dioxins in the foods, it is the internationally accepted scientific method for risk assessments of dioxins.

While both EPA and the World Health Organization have taken steps during the past decade directed at the general objective of assessing the human health risks of dioxins, some of theft specific objectives and processes have differed. Nonetheless, the analytical methods the organizations used and the conclusions they reached have much in common. EPA established a long-range objective of characterizing the potential human health risks posed by exposure to dioxins using a comprehensive, multiyear review process resulting in a reassessment report. In contrast, the World Health Organization conducted a series of individual reviews with more narrowly focused primary objectives, such as updating the estimated amount of dioxins to which a person could be exposed daily for a lifetime without appreciable health consequences. Regarding analytical methods and conclusions, both EPA and the World Health Organization:

• Examined similar sets of human and animal study data, considered a similar range of health effects, and applied some analytical concepts that both entities determined were more appropriate to the assessment of dioxins than those often used in assessments of other chemicals.

• Concluded that dioxins could adversely affect human health at lower exposure levels than previously thought and that some adverse non-cancer effects, such as reproductive and developmental impairments, could occur at or near the levels to which the general population is now being exposed.

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Court Rejects Schools' Appeal

Ruling backs state in denying funds for mandated programs

[Once again we see the positioning of the "burden" of "specialized services for children with autism", as a cause for the "dilution of quality

Lansing - The Michigan State Court of Appeals ruled Wednesday that 467 public school districts are not entitled to millions of dollars in compensation for providing programs they're required to offer.

The districts will appeal the 2-1 decision to the state Supreme Court, said lead plaintiff Daniel Adair, president of the Warren Fitzgerald school board.

Adair said the state is burdening schools by forcing them to add programs without paying for them, resulting in a dilution of quality education.

"The money's got to come from somewhere," Adair said. "What we're seeking is for the state to own up and come through with additional funding for the 70 items it mandates or to tell us these things are no longer mandated."

Dennis Pollard, attorney for the schools, charged that the appeals court ruling allows the state to violate the Constitution. State officials could not be reached Wednesday night for comment.

Appeals court Judges Donald Holbrook and Michael Talbot represented the majority opinion. The dissenting judge was Henry Saad.

The appeals court said the argument that the state was violating the Headlee Amendment should have been made in an earlier lawsuit. That suit, the so-called Durant I lawsuit claimed special education in Michigan's public schools wasn't properly funded by the state. The courts awarded 200 Michigan school districts $1 billion in that case.

Records gathered by the school districts show Michigan requires dozens of programs it does not fund, including:

• Specialized services for children with autism, including specially trained teachers.

• The gathering of information for computer databases, including student academic information, library book inventories and an analysis of the physical characteristics of students and teachers.

• School breakfast programs.

• AIDS training for teachers.

• Financial audits.

In Metro Detroit, only the Dearborn and Detroit districts did not join the suit. The lawsuit, filed in November 2000, went to the appeals court because under the Headlee Amendment of 1978, any taxpayer can bypass circuit court to achieve a speedier resolution.

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Little Abbie Needs Your Help

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An Appleton family are appealing for help after discovering that their daughter had become autistic - just three weeks after receiving the controversial MMR jab.

Abbie Mae Howell, aged two-and-a-half, was diagnosed with autism in January and the family are flying a consultant and supervisor from South Africa, at a cost of £25,000, to begin a two-year teaching programme with her.

And the Howells are asking for a team of three tutors, who will receive specialist guidance from the consultant, to work with Abbie for eight to 12 hours a week.

The consultant, who arrives in mid-May, will monitor Abbie's early progress, while a supervisor will move into the Howells' home on a full-time basis. A classroom will be installed in the family home, allowing tutors to work on Abbie's communication skills.

Abbie's father, Mark, said: "We need people willing to make a big commitment, not just someone who can help for just a few months.

"It's arguably the worst news a parent can get, particularly as there's not a great deal out there in terms of treatment.

"But after carrying out research on the Internet, we've decided to embark on the applied behavioural analysis treatment, which is a 40-hours-a-week, intensive one-to-one teaching programme.

"Statistics show that 47 per cent manage to fit back into mainstream society, while a further 48 per cent receive a significant social boost.

"We began to think something was wrong eight months ago, when Abbie's speech wasn't developing. She was experiencing trouble walking and having bad temper tantrums.

"I suspect there could be a link with the MMR jab, but it's difficult to say for certain."

Anybody who would like to help Abbie can e-mail the family at mark@howell.fsnet.co.uk

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Autism Society of America Advocacy Talking Points & Funding Request

These are the ASA's political talking points, or goals for this year. The ASA Government Relations Committee (GRC), headed by ASA director Jeff Sell, has assembled them to guide advocates when contacting their congress people.

The two issues the ASA stresses are 1) protecting IDEA, and 2) expanding CDC's autism program.

Individuals with Disabilities Education Act

* ASA fully supports the Consortium for Citizens with Disabilities Principles regarding IDEA. ASA urges Members of Congress to reauthorize IDEA and adhere to the following principles:

* All Children should be provided a quality public education that promotes academic success. All children, including children with disabilities, must be provided a free, appropriate public education in the least restrictive environment.

* Congress should meet its commitment to fully fund IDEA

* All education personnel, including administrators, principals, teachers, paraprofessionals, and related services personnel, must be qualified to educate students with disabilities.

Centers for Disease Control and Prevention (CDC)

* The ASA is asking Congress to provide an additional $8 million through the annual appropriations bill for the Center for Birth Defects and Developmental Disabilities at the CDC. Proposed funds would expand the autism monitoring project and would be in addition to the President's request for FY 2003, bringing the total for autism to $17.23 million.

* CDC, through state monitoring projects is currently collecting data in nine states (NJ, WV, AZ, SC, MD/DE, CA, CO, PA, and Atlanta, GA) and our goal is to reach 20 states by September 2003. At that point, CDC will conduct a comprehensive analysis of the data collected, looking for trends and environmental factors in the onset of autism.

* Members of Congress are encouraged to join with Representatives Smith and Doyle in sending a letter to the House Appropriations Subcommittee requesting the additional $8 million in funding. Members of the Senate should send a letter to Senator Harkin requesting funding from the Senate Appropriations Committee.

National Institutes of Health (NIH)

* Current funding levels in biomedical research at NIH are terribly low in relation to the disorder's population and economic impact. We are recommending that the federal government increase the funding available for research over the next three years to a level of $500 million per year devoted to basic science, environmental science, tissue and genetic collection, and all aspects of biomedical research related to autism.

* When compared to the annual growing rate of autism in our nation, this is substantially below funding to keep pace with the projected growth of autism.

* In the area of applied research, we must find new and innovate ways to develop and implement therapeutic and clinical interventions and effective treatments. There have been to date virtually no activity and support from federal agencies in these vital areas. We recommend applied research funding be increased over the next five years to a level of $100 million per year. This increase is needed in the case of autism because we are building from a zero base.

* Members of Congress are encouraged to join with Representatives Smith and Doyle in sending a letter to the House Appropriations Subcommittee requesting the additional $200 million in funding. Members of the Senate should send a letter to Senator Harkin requesting funding from the Senate Appropriations Committee.

WHAT WE WANT

The ASA-GRC is asking Congress to do two things in its annual funding bills this year:

1) Provide an additional $8 million to expand the existing autism program at the Centers for Disease Control and Prevention (CDC). That would bring the funding up to $17 million for next year and provide data collection projects in 20 states.

2) Provide an additional $200 million to the National Institutes for Health so NIH can expand autism research as called for in the autism title of the Children's Health Act.

HOW WE WILL GET IT

Two Members of the House of Representatives - Chris Smith (R-NJ) and Mike Doyle (D-PA) --have initiated a letter to the Appropriations Committee, asking for additional funding for autism programs at CDC and NIH. Representatives Smith and Doyle are circulating that letter to every Member of the House this week and are asking them to add their signatures to the letter.

Our goal is for every Member of the House of Representatives to get a call from their district asking them to co-sign the Smith-Doyle letter on behalf of autism research. The more people they hear from in their district, the more likely Members of Congress are to add their support to the letter. And the more Members of Congress who sign this letter, the more persuasive it will be to the Appropriations Committee to provide the additional $8 million at CDC and the additional $200 million at NIH.

Background on CDC and NIH Research and ASA's Congressional requests

We all know that the incidence of autism is on the rise. In response

to ASA, Congress began a few years ago providing money for CDC to develop better data on autism. Once the agency has enough good data, it will provide analysis of the data that we hope will inform policy decisions on early diagnosis, effective treatment, and even prevention.

Right now, CDC is collecting data in nine states. The budget line item for autism activities at CDC next year is approximately $9 million. We are asking Congress to add another $8 million for autism activities, so that CDC can expand its work to 20 states in 2003. That should provide enough information to allow CDC to begin its analysis of the autism data.

Thanks to you and the autism community, Congress has directed NIH through the Children's Health Act to dramatically expand autism research. ASA is asking Congress to provide an additional $200 million for NIH next year, so that NIH can fully implement the spirit and letter of the autism title in the Children's Health Act.

If you need more information on these issues, contact one of the following ASA legislative staff:

Jennifer Dyjak jkdyjak@sagamoreassociates.com 202-589-2801

Dave Nichols dnichols@sagamoreassociates.com 202-312-7469

Dena Morris dsmorris@sagamoreassociates.com 202-312-7413

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Readers' Posts

Westchester County NY family with 5 yo autistic daughter looking to request Home ABA services in addition to full day school. School district is saying these services are not provided for school age children. Anyone successful in attaining these services or any ideas please e-mail: MA31924@aol.com

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Looking to move to New Jersey. Need information on schools using ABA. My son is 7 yo, Autistic and needs to be in a school that can help him reach his full potential. Kelly sparky8199@earthlink.net

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Looking into summer services for my seven yo autistic son. We live in Cartersville, Ga, which is about 50 miles north of Atlanta. I need something in the Kennesaw, Rome, Calhoun or Adairsville area. I am really interested in someone coming to my home and working with him two or three

days a week. Kim Henson Kim031569@AOL.COM

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Hi, I wrote the post about severe mineral toxins in my 3.5 yo son. I forgot to give my email for responses. Does anyone know how he could have gotten Antimony in his system? July198@aol.com Carla

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My son is 22 and didn't formally receive the diagnosis of ASD until last year. Regional Center qualified him for services, however the only service so far has been meeting with the service coordinator and his report. It would be a great encouragement to hear from others who were diagnosed late and know there is help out there. ginette_schroeder@wycliffe.org

I am interested in the following book: A Work in Progress: Behavior Management Strategies & A Curriculum for Intensive Behavioral Treatment of Autism by Ron Leaf, John McEachin, Jaisom D. Harsh ISBN: 0966526600. If anyone has one to sell please email me at: BLYDENBL@technobrands.com Lynn

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Looking for feedback from parents of young (age 4-5) autistic children who've tried Ritalin. Did you find out very quickly whether or not it helped? Email to: NormaVR@aol.com.

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My paediatrician has suggested prescribing Melatonin for both my ASD kids age 3 and 5 to settle them at night. This is unlicensed in the UK but I believe freely available in US. Would be grateful for feedback from anyone who has used this. Angela. smithsna@tinyworld.co.uk

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Seeking hard data on workplace accommodations and employment outcomes for people with Aspergers and/or HFA. No Silicon Valley stories, please. Any assistance greatly appreciated. All the usual groups have already been contacted (OASIS, ASH, etc.). Please contact nulani@flex.com

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Relocating to Pittsburgh with my 6 yo newly diagnosed Aspergers son. Need names of area pediatricians and mental health providers, support groups, and information on the Pittsburgh public schools approach to Aspergers, and how to get my son the services he needs. Elana Patchin whitebird9@msn.com

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We just found out that our 6 yo son is allergic to several different foods, Wheat, yeast, gluten, casein, corn, and wheat. Is there anyone else out there that is dealing with this? We are having a hard time finding any foods he can eat were we live. Joplin, MO. If anyone has any information it would be very helpful. Also does anyone know if there is any kind of assistance to help buy these types of foods? James Willett jwillett@gbronline.com

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