Lyn Redwood PowerPoint

Out of Balance: The Disparity Between Environmental and Genetic Research

Lyn Redwood RN, MSN - Public MemberInteragency Autism Coordinating Committee (IACC)

Co-Founder and Vice-President, SafeMindsCo-Founder National Autism Association

Opinions expressed are those of the presenter and not that of the IACC

Genetics

Environment

Federal Spending 2000 to 2010

Year Spending on Autism

2000 $ 51,474,000*

2001 $ 55,485,000*

2002 $ 73,798,000*

2003 $ 93,326,000*

2004 $ 94,222,000*

2005 $ 101,632,000*

2006 $ 126,285,582**

2007 $ 144,585,282**

2008 $ 143,724,845***

2009 $ 237,426,725***

2010 $ 334,441,512***

TOTAL $ 1,121,959,434

Information taken from IACC combined portfolio analysis & government report - graphic generated by SafeMinds

* CDC budget

** CBO Records

*** IACC Portfolio Reports

Research Spending by Category on Q3 2008-2010

Environment7% Epigenetic

2%

Gen/Env27%

Genetic64%

Risk Factor Spending

Environment $17,631,494.00

Epigenetic $5,072,389.28

Gene/Environment $64,914,308.00

Genetic $156,147,496.41

Information taken from IACC combined portfolio analysis, graphic generated by SafeMinds

What Have we Learned From Genetics Research?

Specific Examples of IACC Research Objectives

• Project 3 L B - Identify genetic risk factors in at least 50% of people with ASD by 2014. Recommended budget $33,900,000 over 6 years ($5,650,000 per year)

• 3.L.C Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years. ($3,585,700 per year)

Specific Examples of IACC Research Objectives

$0

$20,000,000

$40,000,000

$60,000,000

$80,000,000

$100,000,000

$120,000,000

$140,000,000

3.S.A 3.S.B. 3.S.C. 3.S.D. 3.S.E. 3.S.F. 3.S.G. 3.S.H. 3.S.I. 3.S.J. 3.S.K. 3.L.A. 3.L.B. 3.L.C. 3.L.D. Other

Question 3What happened and can this be prevented?

2008 2009 2010


Genetic Expended v Recommendation

$0

$10,000,000

$20,000,000

$30,000,000

$40,000,000

$50,000,000

$60,000,000

2008 2009 2010

3.L.B. Recommended vs Actual Expenditures

Recommended budget 6 yrs $33,900,000

Recommended budget 1 year $5,650,000


$0

$10,000,000

$20,000,000

$30,000,000

$40,000,000

$50,000,000

$60,000,000

2008 2009 2010

3.L.C. Recommended versus Actual Spending

Recommended budget 7 years - $27.100,000

Recommended budget 1 year - $3.871,430

Environment Expended v Recommendation


What Can Congress & the President Do?

Move From Awareness to Action & Accountability

1. Action- Get Serious About Environmental Factors Research

(a) Appropriations Language for specific research initiatives.

(b) Request NIH create targeted RFAs with funding set aside for environmental research

(c) Utilize other Federal agencies such as EPA and DOD

(d) Get involved by conducting hearings (Oversight, Energy & Commerce, Appropriations, & Science, etc.)

(e) Engage with Parent Advocates & Families on Development of Legislation. (No One Group Speaks for Entire Community)

What Can Congress & the President Do?

Move From Awareness to Action & Accountability

1. Accountability - Get Serious About Oversight

(a) Combating Autism Act up for re-authorization in 2014. Mandate annual accountability of SMART research objectives and progress toward research goals.

(b) White House level coordination of all ASD activities. IACC has no authority to set policy and is part-time committee

(c) Create an Office of ASD Research modeled the Office for AIDS Research (Autism is not a mental health disorder)

(d) Hold hearing on vaccine safety. Why are some children injured and what is being done to prevent these injuries?

TO LEARN MORE: WWW.SAFEMINDS.ORG

Thank you

Working Together We Can Make a Difference!

Eric Uram, Executive Director

[email protected]

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