Autism Speaks EVP of Programs and Services Peter Bell, spoke at NY State Sen. Gillibrand’s press conference on Wednesday, July 7, to support NY State insurance legislation. Below is an excerpt from his speech.
When the CDC released the new rates of autism in the U.S. last December, I remember staring at my computer in disbelief for what seemed like an eternity. My “autism life,” which dates back to 1996 when my now 17 year-old son was diagnosed, flashed before my eyes. All I could see were numbers
1990 1 in 2,000
2000 1 in 500
2004 1 in 166
2007 1 in 150
2010 1 in 110
After gathering my composure, I opened a spreadsheet on my computer and did a few more calculations:
- Using the new autism prevalence of 1 in 110 children, I calculated that among the estimated 4 million births in the U.S. each year, approximately 36,500 children will eventually develop an autism spectrum disorder.
- Since there are 525,600 minutes per year (365 x 24 x60), that means that a child is diagnosed less than every 15 minutes (14.45 minutes to be exact).
- Today alone, roughly 110 families will hear the words “your child has autism.” 70 of those children will be boys.
As devastating as this sounds, the news gets even worse. When a child is first diagnosed, doctors often struggle to tell the parents what they should do. Years ago, many parents were told there wasn’t anything they could do. Autism was not treatable. Fortunately, we know this is NO LONGER true. Autism IS treatable, especially when diagnosed early.
Another reason why doctors are reticent to suggest or prescribe a treatment regimen for autism is because they know these treatments aren’t always available due to limited access. That’s because historically insurance providers have rarely covered the cost of autism treatment. For years, families have endured marketplace discrimination when it comes to getting the cost of medical treatment for their children’s autism covered even though most of them have health insurance.
This is one of the biggest reasons why autism ends up being such a financial hardship on most families. Families are mortgaging everything including their futures to help their children get better. Autism Speaks recently learned about a family in Florida that is considering giving up custody of their child with autism simply because they can no longer afford to provide the treatment their son with autism needs.
But the tide is changing. Prior to 2007, only Indiana had an autism insurance law that required health plans to provide coverage for evidence-based medically necessary treatments. Since then, 20 more states have enacted laws. New Hampshire and New York are on the verge of joining this elite group of states who have decided to take a stand in support of enhancing the futures of their families living with autism. We urge Governor Paterson to swiftly sign the New York bill so insurance coverage of autism treatments can become a reality for the families of New York and allow the children with autism of this great state to reach their potential.
But states insurance laws are not enough. Many health plans are exempted from state regulations. These self-funded plans, or ERISA policies, are subject to federal laws and thus far we do not have federal health care reform that requires these plans to provide such coverage for autism treatments.
A key provision in the recently enacted “Patient Protection and Affordable Care Act”, or what most of us call health care reform, does require autism behavioral health treatments to be included as an essential health benefit, but this rule applies only to plans offered in the new health insurance exchanges and certain plans offered in the individual and small group markets outside the exchanges. Autism insurance reform is still desperately needed for other plans, including self-funded plans.
On behalf of the million plus families in America who are doing their best to help their children live with autism, we thank you Senator Gillibrand for your strong commitment to bring autism insurance reform to the autism community.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org
USA TODAY is running a contest through Friday, April 16, 2010. Whichever charity gets the most #AmericaWants tweets and retweets will receive a full-page, full-color ad in USA TODAY, valued at $189,400.
With autism affecting 1 in 110 people, we certainly should be able to mobilize our community and win autism the awareness it deserves.
Each tweet must include “#AmericaWants (insert full name of charity) to get a full-page ad in USA TODAY.” Please note that you must include ALL WORDING in the quotation marks in order for your (re)tweet to be considered. Their Twitter filter will not be able to pick up tweets that aren’t formatted in that way.
Not on Twitter? Now is the time to sign up: www.twitter.com/autismspeaks. Start following Autism Speaks and make this your very first tweet!
Thursday April 1
For autism awareness
We light it up blue
1 in 110 kids
Will be diagnosed
It’s time to listen.
Help us shine a light
For people with autism
And light it up blue
Find the missing piece
Autism is a puzzle
Raise awareness now
All of our health care
Must cover autism now
Take action to help
Passed insurance bills this week
Let’s add more states
For all those with autism
Now that is our goal
Light it up blue now
For autism insurance
Reform it today
(Post your Light It Up Blue haiku in the comment section below and we’ll pick our favorites to feature on the blog.)
Louisiana Governor Bobby Jindal has made a proclamation designating April as Autism Awareness Month in Louisiana. They’ll kick it off with the Old Governor’s Mansion participating in “Light It Up Blue” and have April for awareness raising efforts and activities.
How will you be Lighting It Up Blue to promote autism awareness, beginning this Thursday and Friday? Visit www.lightitupblue.org to host an event or find one in your area.
Want to Light It Up Blue online? Check out our web downloads, including one you can use as your Facebook profile picture.
Here are suggested status updates you can use on Facebook and Twitter:
Light it up blue today for the 1 in 110 children with autism. Visit lightitupblue.org to help us shine a bright light on #autism
I am donating my status today for World Autism Awareness Day. Visit autismspeaks.org to learn more and get involved #autism
Stay tuned for more great ideas and be sure to share with us how you plan to Light It Up Blue by commenting below.
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 25th item, Autism Prevalence Reaches 1:110, is from Autism Speaks’ Top 10 Autism Research Events of 2009.
In 2009, two major studies using different research methodologies yielded strikingly similar and eye-opening results showing that ASD affects approximately 1% of children in the United States. Based on data collected just four years earlier, it was found that ASD affected 1 out of every 150 children in the U.S. This represents a 57% increase in ASD prevalence in a relatively short period of time. Both studies also found that ASD continues to be four times more common in boys than girls.
In the first study, published in Pediatrics, authors from the U.S. Department of Health and Human Services (HHS) and the Centers for Disease Control and Prevention (CDC) collected data through the National Survey of Children’s Health (NSCH) on parent-reported diagnosis of ASD. Among a nationally representative sample of 78,000 children aged 3 to 17 years, the investigators found that 1 in 91, or an estimated 673,000 children in the U.S. had an ASD. While concerns lingered over the parent-reported nature of the data, this large-scale study set the stage for another major publication on ASD prevalence with similar results.
In December researchers at the CDC released new prevalence data collected by the Autism and Developmental Disabilities Monitoring Network (ADDM), a series of surveillance sites throughout the U.S. that maintain medical and service records on children with autism. By abstracting data and subjecting those records to stringent clinical evaluation, the authors found that approximately 1 in 110 children, 1 in 70 boys, met the criteria for ASD. This 1 in 110 statistic, based on data collected in 2006, represents a 57% increase from the 1 in 150 statistic which was based on data collected by the ADDM network in 2002 using identical research methods to the current study.
In a year that was jam-packed with publications on autism epidemiology, a number of other studies sought to investigate the reasons for the dramatic increase witnessed in autism prevalence. Researchers from Columbia University reported that approximately 25% of the rise in autism caseload in California between 1992 and 2005 could be directly attributed to changes in diagnostic criteria that resulted in a shift from mental retardation diagnosis to autism diagnosis. Therefore, converging evidence from this study and others around the world suggests that while changes in diagnostic practice may account for a portion of the increase, they cannot alone explain the rise in autism prevalence, and other factors, including environmental factors, likely play a role. One environmental factor that continues to be implicated in the increase in autism prevalence is parental age. Researchers from the California Department of Public Health reported in 2009 that parental age and particularly maternal age is a significant risk factor for autism, with a 10-year increase in maternal age increasing the odds of having a child with autism by 38% and mothers over the age of 40 at highest risk.
The prevalence studies of 2009 helped shed additional light on the immense nature of the autism public health crisis. With 1% of the U.S. population affected by ASD, and emerging data suggesting that 1% of the global population may be affected by ASD, never has the need for funding to support research into the causes and treatments of ASD been greater. In addition, these findings call attention to the necessity for more accessible diagnostic and intervention services for the growing population of those affected. In the CDC’s ADDM report and a separate study published in the Journal of the American Academy of Child and Adolescent Psychiatry, it was reported that while we can now reliably diagnosis autism spectrum disorders at two years of age, children on average are still being diagnosed at close to 6 years of age. This means that there is a large gap between the time that children can effectively be diagnosed at age 2, and the time they are actually receiving a diagnosis – valuable time lost where early intervention services can dramatically improve outcomes.
Did you know?: Autism Speaks, in partnership with the CDC, developed the International Autism Epidemiology Network, a forum to facilitate collaboration and information sharing between autism experts around the globe. Launched at the International Meeting for Autism Research (IMFAR) in May of 2005, today the network supports over 100 participants from 30 countries and its activities have resulted in over $2.5 million in targeted international epidemiology research funding from Autism Speaks. This includes the launch of two RFAs in 2008 designed specifically to better understand global autism prevalence and risk factors – click here for more information on the funded grants.
This part 2 of a 2 part series is from Michael Rosanoff and Andy Shih, Ph.D. who both work in the Autism Speaks science department. This second post is from Andy Shih. Both guest bloggers bios are below the post.
The release of the latest prevalence data by the CDC last week was important in two ways. One, of course, is its implication for the role of environmental risk factors in autism. The other is how the finding enhances awareness and supports our call for more money for research.
The same can be said for our international epidemiology efforts. As part of our Global Autism Public Health initiative (GAPH), we have been funding and planning prevalence studies with our international partners and colleagues for the past several years. In South Korea, for instance, we are expecting the publication of the first ever prevalence estimate in early 2010. We also have prevalence studies in various stages of development in Albania, India, Ireland and Mexico. All these efforts involve members of our International Autism Epidemiology Network.
In addition to the contributions these studies can make to our understanding of autism, they will also help raise awareness and inform policy development in parts of the world where affected individuals and families struggle with severe stigma, and in many instances, little or no support and care. Another way to look at it is that when you conduct a prevalence study, you are basically asking members of the autism community to stand up and be counted. When that happens, especially if the number is anywhere close to the 1 percent figure we have here in the States, their plight and needs can no longer be ignored.
Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where he oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.
Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.
Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.
Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants. Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.
Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience and neuroimmunology, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (MPH) in epidemiology from Columbia University’s Mailman School of Public Health and resides in N.J.