Post on 08-Nov-2014
description
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
Information taken from IACC combined portfolio analysis, graphic generated by SafeMinds
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
Information taken from IACC combined portfolio analysis, graphic generated by SafeMinds
$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
Information taken from IACC combined portfolio analysis, graphic generated by SafeMinds
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
Eric.Uram@SafeMinds.org