Welcome to our first edition of the ACE newsletter.  We expect to publish four times a year in our effort to keep our members current on the latest information from the biomedical community.  We also hope to keep you apprised of new interventions and events that may be of interest both locally and nationally.  We are excited to begin what we hope will become an ongoing conversation with our readers.  Please email us your thoughts, questions and ideas.  ACE is interested in hearing from you!

The Autism Center for Enlightenment is a not-for-profit 501c3 entity that exists due to generous contributions from giving individuals and companies. If you or anyone you know would like to make a donation, please visit our website at www.autismcenterforenlightenment.com

Beth Hynes

In early December, Dr. Anju Usman was the featured speaker at the latest ACE meeting held at Claymore Securities in Lisle.  Dr. Usman discussed research presented during the DAN conference held in San Diego, CA in October of 2008 and highlighted developments of interest to families living with autism.

The first study discussed was the work of Dr. Andrew Wakefield, of Thoughtful House in Houston, TX and Dr. Laura Hewitson, a University of Pittsburgh Medical School professor and autism researcher with the Magee-Women's Research Institute.   The team looked at the effect of the current human vaccine schedule on monkeys. The team adjusted the dosages for age and weight of the primates and monitored the monkeys' health and development until they were two years old.

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Clients searching for a local compounding pharmacy had their prayers answered with the opening of Pure Compounding Pharmacy this past autumn.

Pure Compounding Pharmacy, located on Diehl Road in Naperville, adjacent to the offices of TrueHealthMedicalCenter, was created to meet the needs of individuals with sensitivities to medication, additives and other allergens. The pharmacy specializes in providing for children with symptoms of Autism, ADD, and ADHD. The compounded prescriptions are made without wheat, gluten, corn, dairy, casein, soy, yeast , sugar, eggs, shellfish, stearates, artificial sweeteners, excitotoxins, dyes or flavors. In essence Pure Compounding provides "the purest" form of the medication possible. The pharmacy was designed with safe sustainable or recycled products that create a "green" environment in which specialists compound prescriptions.

Pure Compounding can combine many individual nutrients and minerals into capsules to help alleviate fillers, the number of capsules given and time in administering medications.  The pharmacy also makes topical creams and gels, liquid suspensions and solutions, and suppositories. Pure Compounding pharmacy does accept prescription insurance cards and will work with insurance companies to provide prescription coverage.

ACE hails passage of Insure Autism Act in Illinois

On December 12, 2008 Governor Blagojevich signed SB 934, the Insure Autism Law and it went into effect as Public Act 95-1005 (215 ILCS 356z. 14).   ACE Board member Beth Hynes said, “Thanks to Elmhurst dad Pete DiCianni for looking at the discrimination our kids faced and saying ‘no this really shouldn’t be.’  We really needed that gas in the tank.  I also want to acknowledge Laura Cellini in Springfield who is a professional lobbyist and has worked tirelessly on passage of the bill.”

Under the new law, group, individual health insurance or managed care plans must provide individuals under 21 years of age coverage up to $36,000 per year with no cap on the number of visits to a provider, for the diagnosis and treatment of autism spectrum disorders to the extent that those disorders are not already covered by the policy of accident and health insurance or managed care plan.

At ACE’s December meeting, Hynes highlighted some features of the law that should benefit Illinois families. She noted, “The definition of autism spectrum disorders is pretty broad, including PDD, Aspergers, PDD-NOS and autism. You will need to have a diagnosis. But a physician, a family practitioner or pediatrician can provide one, as can a licensed clinical psychologist.” Hynes admitted, “In the past, it hasn’t been to our benefit to let the word out of our mouth, so this is going to be a giant gulp for all of us as we tell the insurance company our child has this diagnosis.”

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There is news to report on the national legislation front. In early 2009 Senator Richard Durbin, (D) Illinois is expected to introduce a bill of interest to families living with ASD. His “Autism Treatment Acceleration Act” addresses insurance coverage for ASD, treatment availability and medical privacy, among other issues.

Parents Oppose Durbin Autism Legislation

A group of Illinois parents reviewed the proposal and became concerned about the proposal’s potential effects on children’s medical care for several reasons. They have launched a website in an effort to educate other parents about the potential issues that might arise from a medical model proposed by the Durbin bill. The parents are proposing alternative language in the federal bill that would:

• include findings consistent with most up-to-date scientific investigations regarding ASD emphasizing essential areas of promising research.
• establish a National Autism Executive Committee that would provide stakeholder input into research and policy initiatives and future research allocations made through Combating Autism Act appropriations.
• promote research initiatives that help to identify sub cohorts, biomarkers, and etiological factors including environmental and genetic investigations through clinical investigations of persons with ASD.
• promote the establishment of continuing medical education requirements in treating ASD to further the quality of care.
• require the evaluation and treatment for other medical issues which may occur with ASD, such as gastrointestinal, immunological and metabolic conditions.
• require insurance coverage for diagnostic and therapeutic services such as speech, OT, PT and ABA in addition to other medically necessary services.

For more information about the "Autism Treatment Acceleration Act"  and the alternative language parents have proposed as the "Autism Comprehensive Treatment Acceleration Act" go to www.changeforautism.com

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If you would like to communicate with the new administration about autism coverage and treatment, please consider sending the following sample letter to your friends and family. Please also copy and paste the portion to be included in the citizens’ briefing book. Thanks so much for your involvement!

Dear fellow parents and advocates,

President-elect Obama's staff has elicited information from citizens just like yourself in developing future policy initiatives. We are parents of children with ASD who have worked to develop legislation that would help to bring about change for our children with autism spectrum disorders. This is a grassroots initiative designed to speak out for our children. Please see the following information and consider forwarding the message to;
http://citizensbriefingbook.change.gov

I am a parent of a child with Autism Spectrum Disorders and am advocating for legislation that can be found at the following link;
http://www.changeforautism.com/ACTAA.htm

The proposed language;

• Includes findings consistent with most up-to-date scientific investigations regarding ASD emphasizing essential areas of promising research.
• Establishes a National Autism Executive Committee that would provide stakeholder input into research and policy initiatives and future research allocations made through Combating Autism Act appropriations.
• Promotes research initiatives that help to identify sub cohorts, biomarkers, and etiological factors including environmental and genetic investigations through clinical investigations of persons with ASD.
• Promotes the establishment of continuing medical education requirements in treating ASD to further the quality of care.
• Requires the evaluation and treatment for other medical issues which may occur with ASD, such as gastrointestinal, immunological and metabolic conditions.
• Requires insurance coverage for diagnostic and therapeutic services such as speech, OT, PT and ABA in addition to other medically necessary services.

As a parent of a child affected with autism, I am hopeful that future policies will expedite the understanding of the etiology and treatments for ASD and will reflect a consumer-directed model where money follows the individual.

Self-determination and the right to choose medical and therapeutic providers are essential aspects of individualized comprehensive care.

Thank you for your consideration of our children and families.