Real Guys Immunize: The Philadelphia Social Media Summit

By Alison Singer

Over the past two days, members of our team have been in Philadelphia, where a coalition of non profit organizations has come together for the 2^nd annual “Social Media Summit” to learn about social media and improve our communications with the families who rely on our organizations for accurate, timely information. As part of this summit, all of the organizations created a new suite of online resources focusing on the importance of immunization.

The new initiative is called “Real Guys Immunize”. It was created in 24 hours, as an instructional vehicle for those of us at the conference, as a salute to dads who work so hard to protect their families, and also as a way to share important information about the fact that vaccines save lives.  As an autism advocacy organization, we supported the choice of this topic since in many instances parents still cite concerns about vaccines causing autism (Pediatrics, April 2010). As a result, children are being left unprotected from diseases that can be deadly, and we are seeing a resurgence of vaccine preventable disease, such as pertussis, that have not been in the United States in decades.  “Real Guys Immunize” will provide facts and debunk rumors.

http://www.vaccinatenow.org/realguysimmunize
http://facebook.com/guysimmunize
http://twitter.com/guysimmunize
http://youtube.com/user/RealGuysImmunize

Take some time to check out all the great information posted within the last 24 hours and then watch for improvements to the Autism Science Foundation’s own social media activities. We have learned a lot in the last two days and can’t wait to put all the great ideas and social media tools into action to improve the way we disseminate autism research news to our ASF families.  

PS: I fear this blog post does not meet even the minimum standards as outlined in the seminar “to blog or not to blog”. Here are a few items on the checklist:

Have you included something funny?  I’ve been to Philadelphia about a dozen times this year and on this trip I finally got to see the Liberty Bell. Yes, it was all it is cracked up to be.  (ok, attempt at funny)

Have you included a personal anecdote? While in Philadelphia I had dinner at what just may be the best tapas restaurant ever.

Have you shown humility in your post?  My sense of direction being what it is, I cannot for the life of me tell you where the tapas restaurant is. Somewhere in Philadelphia is the best I can do.

Have you included links to high quality, highly relevant sites that add value to your post?  Yes, but don’t ask if I have optimized them for search engines or inserted title tags.  #SMSPhilly

NY Senate Passes Landmark Autism Insurance Legislation

From www.nysenate.gov

(June 9, 2010–Albany, NY) The Senate Democratic Majority passed groundbreaking legislation to protect children with autism, setting the bar for a new national standard for treatment and services. The legislation (S7000B/Breslin) requires early intervention screening, diagnosis and treatment for autism spectrum disorders, saving families facing autism thousands of dollars a year.

Despite research demonstrating that early intervention and intensive behavioral therapies can yield significant improvement in the quality of life for those with autism, diagnosis and treatment have been excluded from coverage by health insurance carriers in New York.

The prior insurance law did not provide clarity to consumers or insurers as to the scope of the required coverage.  This bill includes an updated definition of autism spectrum disorder, and tells insurers what must be covered.  The Commissioner of Health would be responsible for publicizing regulations identifying treatment and therapy options for autism coverage.

Twenty states previously spoke up for those affected by autism by passing legislation to provide them with insurance coverage. The passage of this much needed legislation would make New York the 21^st state to require such coverage.  This bill is one of the strongest in the nation, not only requiring policies to cover autism, but does so without a financial cap.  Furthermore, the coverage is extended for the entire life span of the individual.

The bill would only allow evidence-based and clinically proven treatments to be covered.

Senator Neil D. Breslin (D-Albany), Chair of the Insurance Committee and sponsor of the bill said, “This  law would restore the voice of those indirectly affected by autism.  Many families paying out-of-pocket for autism treatments risk their homes and the educations of their unaffected children, mortgaging their entire futures for something that should be covered by basic health insurance.”

The Centers for Disease Control have now estimated that the number of children with autism is 1 in 110 nationwide, up from previous estimates of 1 in 150.  The numbers are even more stark in New York, with the autism rate for children increasing by about 15-percent per year.  Recent studies have shown that close to 1 in 90 children are affected by autism.  Currently, there are 17,000 students ages 4 to 21 classified by New York schools as having autism.

Senator Craig M. Johnson (D-Nassau) said, “Every day I hear the horror stories from families who have re-mortgaged their homes and taken second and third jobs in order to pay for the autism-related treatments that their children need. Insurance companies are supposed to be there to help families during times of crisis. Today, we are ensuring that these companies live up to their responsibility.” 

“People often lament the political gridlock in Albany, but this legislation is an important reminder of what our elected officials can and will do to help New York’s families,” said Bob Wright, co-founder of Autism Speaks.  “Families here and around the country are literally going broke trying to give children the therapies they need and deserve to meet their full potential. It’s time that we eliminate this unfair burden and end insurers’ blatant discrimination against children with autism in every state in America.”

 “The passage of S7000B is an important step toward coverage of evidence-based autism treatment for New York families who have historically been discriminated against by the very health plans to which they pay premiums,” said Judith Ursitti, Autism Speaks regional director of state advocacy relations.  “We thank Senator Breslin, in particular, for his commitment and leadership on this issue.”

“The Autism Science Foundation is proud to support S7000B, which will enable thousands of New York families to receive the benefit of evidence based, clinically proven interventions and treatments for autism spectrum disorders, like Applied Behavior Analysis therapy (ABA),  as well as screening and diagnostic services” said Alison Singer, Westchester County resident and President of the Autism Science Foundation. “Research has shown that evidence-based intensive behavioral therapies like ABA can result in significant improvement in the cognition, communication and well-being of people with autism spectrum disorder.” 

“We enthusiastically support Senator Breslin and his colleagues in their efforts to bring equity in insurance coverage to children and adults who are challenged by autism and autism spectrum disorder.” said Dr. Henry Schaeffer, Chair of the American Academy of Pediatrics, District II, New York State.  “The more than 5,000 pediatricians across the state who provide health care to more than 4 million children stand with you in your work to assure that all children and families, no matter what their physical, psychological or intellectual challenges, can get the health care they need to live productive and healthy lives.”

“The Asperger Syndrome and High Functioning Autism Association celebrates the New York State Senate’s actions in passing S7000B and affording autistic individuals access to quality health care,” said Patricia R. Schissel, LMSW, President, AHA Asperger Syndrome and High Functioning Autism Association (AHA) Inc. “We welcome the Senate’s willingness to stand with us in our undying support of those whose lives have been touched by autism.”

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New Autism Susceptibility Genes Identified

By Joseph Buxbaum, PhD

Researchers of the Autism Genome Project Consortium (AGP) announced today that they have identified new autism susceptibility genes that may lead to the development of new treatment approaches.

The study results are based on analysis of copy number variants (CNVs) — rare submicroscopic insertions and deletions — identified in high-density genotyping data collected from 1,000 individuals with autism spectrum disorder (ASD) and 1,300 without ASD. The findings were published today in Nature by the international consortium of researchers who make up AGP.

There are several important results from this study. First, the findings provide further support for an emerging consensus within the scientific community that autism is caused in part by many “rare variants,” or genetic changes found in one percent or less of the population. While each of these variants may only account for a small fraction of the cases, collectively they are starting to account for a greater percentage of individuals with autism.  More importantly, they are also providing insights into possible common pathological mechanisms.

Second, the findings show that CNVs disrupting genes are more common in ASD than in controls. Some of the more compelling findings include CNVs in SHANK2, SYNGAP1, DLGAP2 and the X-linked DDX53–PTCHD1 locus.

Third, the AGP explicitly tested whether genes previously implicated in intellectual disabilities but not in autism represented autism genes. The evidence was quite clear that such genes are also autism genes. The overlap between autism susceptibility genes and genes previously implicated in intellectual disabilities further supports the hypothesis that at least some genetic risk factors are shared by different psychiatric developmental disabilities.

Finally, the AGP carried out pathway analyses and noted that many of the autism genes that were identified belong primarily to synapse-related pathways, while others are involved in cellular proliferation, projection and motility, and intracellular signaling. Identification of these biological pathways points to new avenues of scientific investigation, as well as potential targets for the development of novel treatments.

Therapies specifically targeted to identified genetic causes (“personalized medicine”) are now being tested in several neurodevelopmental syndromes associated with autism, including Fragile X syndrome, tuberous sclerosis, and Rett syndrome. The identification of additional autism genes will expand such approaches and lead to new therapies.

 Joseph D Buxbaum, PhD is Director of the Seaver Autism Center for Research and Treatment at Mount Sinai and serves as Editor-in-chief of the journal Molecular Autism.  Dr. Buxbaum is one of the leading contributors to the design, analysis, and writing of this study and is a lead AGP investigator.