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IACC Update: A Letter from our CSO

[Click HERE to read a full recap of the IACC meeting.]

 

 

IACC Update

A Letter
from Autism Speaks Chief Science Officer

 

 

13 July 2012

 

Dear friends,

This week the newly formed Interagency Autism Coordinating Committee (IACC) met for the first time. Congress mandated this committee with the Combating Autism Act, and its reauthorization, to advise the Secretary of Health and Human Services on autism research and services and to coordinate all federal and nonfederal activities related to autism. The committee is charged with developing and updating a strategic plan for addressing the diverse and great needs of people with autism spectrum disorder in the United States. This is my second term on the committee.

“Frustration” is the word that best captures the sentiment of the many members of the public who attended and spoke at the meeting. Whether one views the progress of the past several years as a “cup half empty” or a “cup half full,” one thing is clear. The cup isn’t full.

Secretary Sebelius, who spoke at the meeting, rightly applauded the passage of the Affordable Care Act. This legislation guarantees that no one can deny insurance coverage to individuals with autism. Additionally, insurers must pay for autism screening and end lifetime limits to coverage.

Secretary Sebelius also acknowledged that, while progress has been made, we have a long way to go, and we need answers from research. She stressed the need to make more progress in early detection and access to intervention for ethnic minority communities, who are sorely underserved in our country.

While the passage of the Affordable Care Act offers hope for better health insurance coverage for people with autism, it just isn’t enough. Often it isn’t the lack of insurance coverage that prevents individuals with autism from getting the health care they need and deserve. Rather, it is the fact that many insurance plans don’t cover needed behavioral health interventions such as ABA. Furthermore, although the new health care law means that autism screening must be covered, a bigger problem is that pediatricians often fail to screen for autism, despite the fact that the American Academy of Pediatrics recommends they do so twice by the time a child turns two.

As I pointed out in a comment I made directly to the Secretary, the autism community is frustrated and impatient. After all, since Congress established the IACC, autism’s prevalence has dramatically risen. The annual costs of autism care have increased from $35 billion a year to $137 billion. At least half of children with autism don’t receive early intensive behavioral intervention, despite the fact that an NIH-funded study showed that such interventions can produce life-changing outcomes.

We have only two FDA-approved medicines for the treatment of autism, and these medicines don’t address its core symptoms. A large proportion of adults with autism remain unemployed and socially isolated, most living unengaged in their parents’ home. We know almost nothing about the health needs of adults with autism, nor how their needs change with age. We do know that the mortality rate for individuals with autism is six times higher than the general population.

The list of unmet needs doesn’t stop there.

We need urgency. We need to recognize that autism is a public health crisis that must compel the IACC to develop an action-oriented strategic plan that sets goals and priorities that maximize benefit for those struggling with autism. The range of legitimate and real needs to be addressed is as large and diverse as autism itself.

During breaks and throughout the meeting, I received many texts and emails from the public. People told me that we need to understand why autism’s prevalence continues to increase at alarming rates and that we need to focus on preventing autism by identifying modifiable environmental factors. Others urged more research to understand the underlying biology of autism, in all its forms, including the role of immune dysfunction. Only then can we develop effective medical treatments to address autism’s core symptoms, as well as associated conditions such as epilepsy, sleep, GI and metabolic conditions. Others advocated for more research to help underserved ethnic minority communities. Many wanted research that focuses on developing and evaluating services that improve the quality of life for adults.

Michael Doyle and Christopher Smith, U.S. representatives who co-sponsored the Combating Autism Act and chair the Congressional Autism Caucus, spoke at the meeting. Doyle noted that the "CDC revealed shocking new numbers and much more needs to be done to understand the causes of the increase." He stressed that, in this fiscal climate, we are unlikely to get additional resources for autism. Smith similarly noted "scarce dollars and overwhelming need." He emphasized the need for environmental risk factor research and also talked about autism from a global perspective, noting that 67 million persons are affected worldwide.

Francis Collins, director of the National Institutes of Health (NIH), reviewed the progress in scientific research that has been made in the last five years, including the ability to diagnose earlier, a five-minute screening test that can be administered at the one-year checkup, early intervention for toddlers and identification of genetic and environmental risk factors. He talked about the NIH's commitment to translational research, stating that the NIH has stepped forward to address bottlenecks in the translation of biological discoveries into therapeutics in the clinic.

I and others raised the concern that it’s difficult to accurately monitor how much the federal government is spending on autism research and services. The IACC portfolio analysis is a step in the right direction. But questions remain about how funding is categorized. What funds are being directed to research? What funds actually go to services? How much of the research categorized as “autism research” truly focuses on autism rather than topics only indirectly related to autism? 

Immediately following the meeting, the Autism Self Advocacy Network (ASAN) released an alert asking people to write to Health and Human Services to express their concerns about how funding is tracked and allocated and to advocate for more research on services. (See their action alert, here.)  

In his wrap-up, Tom Insel, director of the National Institute of Mental Health and chair of the IACC, noted that, even among those on the committee, great differences remain in how autism is viewed. Some see autism as a disease that needs to be cured. Others think of it as a disability and, as such, believe the primary focus should be on services and supports. Others see autism as an injury deserving of compensation with prevention being the foremost goal. He urged the committee members to find common ground.

As a beginning, can we all agree that the cup is indeed half-empty and that the cup we need to fill is growing larger every day? Can we agree that, despite the fiscal climate, more resources must be directed toward autism research and better services and that this investment will be a cost-effective use of taxpayer dollars, saving millions if not billions of dollars in the long run? Can we agree that we don’t have a minute to waste? 

As always, we want to hear from you, our community. Please write us at contactus@autismspeaks.org.

Sincerely,

 

 

 

 

Geraldine Dawson, Ph.D.
Chief Science Officer, Autism Speaks

 

Note: Please also see “The Federal Response to Autism: A Report from the IACC,” on the Autism Speaks blog.