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U.S. Government Committee recomends increased research into the needs of autistic adults

5 Feb

The Interagency Autism Coordinating Committee is a group representing government agencies that research autism and some segments of the autism community. It was reenacted as a result of the Combating Autism Act. The main product, if you will, of the IACC is the Strategic Plan, which lays out a suggested framework for the U.S. government’s autism research activities.

The main section of the Plan is divided into seven sections, framed around questions. I think it unfortunate that the questions are voiced as though they are posed by a parent. Be that as it may, here are the sections/questions:

1. When Should I Be Concerned?
2. How Can I Understand What Is Happening?
3. What Caused This To Happen And Can This Be Prevented?
4. Which Treatments And Interventions Will Help?
5. Where Can I Turn For Services?
6. What Does The Future Hold?
7. What other Infrastructure and Surveillance Needs Must be Met?

It is my belief, and that of many others, that the most important section is number 6: what does the future hold? This section covers research into understanding autistic adults. This is an area that has been woefully neglected in my opinion.

The goals below have a projected total budget of over US$50 million. I’d like to see a lot more. I’d like to see it now. But this is a good step forward.

Short-Term Objectives

1. New objective
Launch at least two studies to assess and characterize variation in the quality of life for adults on the ASD spectrum as it relates to characteristics of the service delivery system (e.g., safety, integrated employment, post-secondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) and determine best practices by 2012. IACC Recommended Budget: $5,000,000 over 3 years.
2. New objective
Evaluate at least one model, at the state and local level, in which existing programs to assist people with disabilities (e.g., Social Security Administration, Rehabilitation Services Administration) meet the needs of transitioning youth and adults with ASD by 2013. IACC Recommended Budget: $5,000,000 over 3 years.
3. New objective
Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, track outcomes, with consideration of ethical issues (insurance, employment, stigma) by 2015. IACC Recommended Budget: $8,400,000 over 5 years.
4. New objective
Conduct at least one study to measure and improve the quality of life-long supports being delivered in community settings to adults across the spectrum with ASD through provision of specialized training for direct care staff, parents, and legal guardians, including assessment and development of ASD-specific training, if necessary, by 2015. IACC Recommended Budget: $7,500,000 over 5 years.

Long-Term Objectives

1. New objective
Develop at least two individualized community-based interventions that improve quality of life or health outcomes for the spectrum of adults with ASD by 2015. IACC Recommended Budget: $12,900,000 over 5 years.
2. New objective
Conduct one study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015. IACC Recommended Budget: $5,000,000 over 5 years.
3. New objective
Conduct comparative effectiveness research that includes a cost-effectiveness component to examine community-based interventions, services and supports to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2018. IACC Recommended Budget: $6,000,000 over 5 years.
4. New objective
Conduct implementation research to test the results from comparative effectiveness research in real-world settings including a cost-effectiveness component to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2023. IACC Recommended Budget: $4,000,000 over 5 years.

IACC calls for $175 million in autism and the environment research

5 Feb

The Interagency Autism Coordinating Committee has posted the revised Strategic Plan. I blogged it recently here on LeftBrainRightBrain. I made a note of the large commitment to environmental causation research. I thought it worthwhile to highlight that section, since this is the cause of so much criticism of the IACC.

Strangely, the criticism doesn’t come from those who are supposedly “It’s all genetic” types. No, the “it’s all environmental” groups seem to be very loud in complaining that all the research funding is going into genetics.

The Plan is divided by a number of questions. Research into causation is listed in Question 3: “What Caused This To Happen And Can This Be Prevented?”

Under that category, there are seven projects on environmental or gene-environment research. Seven out of 10 projects. The estimated budget for all these projects? $175,900,000.

In other words, 70% of the projects and, if I did my math right, nearly 70% of the funding for causation is estimated to be going to environment and gene-environment projects.

This would seem like a great victory for those who have lobbied for more environmental research. I have yet to see anyone from that group even mention the new Strategic Plan, much less the large commitment to environmental research. Where are the statements from SafeMinds (who have a very vocal member who sits on the IACC proper and another who is on a working group)? How about Generation Rescue? The National Autism Association?

In my opinion, these groups really don’t care much about environmental causation unless it is either mercury or vaccines. Hey, I could be wrong. Let’s see if they surprise me with some acknowledgment of this effort by the US Government.

Here are the objectives if you would like to read for yourself.

Short-Term Objectives

1. Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. Studies should investigate factors contributing to phenotypic variation across individuals that share an identified genetic variant and stratify subjects according to behavioral, cognitive, and clinical features. IACC Recommended Budget: $43,700,000 over 4 years.
2. Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years.
3. Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene – environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years.
4. Enhance existing case-control studies to enroll racially and ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.
5. New objective
Support at least two studies to determine if there are subpopulations that are more susceptible to environmental exposures (e.g., immune challenges related to infections, vaccinations, or underlying autoimmune problems) by 2012. IACC Recommended Budget: $8,000,000 over 2 years.
6. New objective
Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012. Estimated cost $56,000,000 over 2 years.

Long-Term Objectives

1. Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years.
2. Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years.
3. 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.
4. Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years.

Read more: https://leftbrainrightbrain.co.uk/2010/02/iacc-strategic-plan-is-up/#ixzz0edI3Pe8h

The new IACC Strategic Plan is online

4 Feb

The Interagency Autism Coordinating Committee (IACC) has posted the revised “Strategic Plan“. This is the document which is supposed to guide US Government funded autism research.

The Strategic Plan is written from a parent’s perspective. It is divided into 7 questions to be answered. Below I list the parts I think are the “meat” of the Plan–the proposed projects with estimated budgets.

In a very quick skim through the budget, I get 7 projects on environmental causes or gene-environment causes, with budgets totaling nearly $200M. Keep that in mind when people say there is no “environmental” research in the Plan.

There are a lot of new projects. My quick sum gives about $64M in projects for question 6 “What Does the Future Hold, Particularly for Adults?” I This is, to me, the most important part of the Plan.

Question 1: When Should I Be Concerned?

Short-Term Objectives

1. Develop, with existing tools, at least one efficient diagnostic instrument (e.g., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011. IACC Recommended Budget: $5,300,000 over 2 years.
2. Validate and improve the sensitivity and specificity of new or existing screening and diagnostic tools, including comparison of general developmental screening versus autism-specific screening tools, in both high risk and population-based samples through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity, characteristics of ASD, and general level of functioning by 2012. IACC Recommended Budget: $5,400,000 over 3 years.
3. New objective
Conduct at least three studies to identify reasons for the health disparities in accessing early screening and diagnosis services by 2012. IACC Recommended Budget: $2,000,000 over 2 years.
4. New objective
Conduct at least two studies to understand the impact of early diagnosis on choice of intervention and outcomes by 2015. IACC Recommended Budget: $6,000,000 over 5 years.

Long-Term Objectives

1. Identify behavioral and biological markers that separately, or in combination, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. IACC Recommended Budget: $33,300,000 over 5 years.
2. Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015. IACC Recommended Budget: $71,100,000 over 5 years.
3. Identify and develop measures to assess at least three “continuous dimensions” (i.e., social reciprocity, communication disorders, and repetitive/restrictive behaviors) of ASD symptoms and severity that can be used by practitioners and/or families to assess response to intervention for people with ASD across the lifespan by 2016. IACC Recommended Budget: $18,500,000 over 5 years.

Question 2: How Can I Understand What Is Happening?

Short-Term Objectives

1. Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. IACC Recommended Budget: $9,800,000 over 4 years.
2. Launch three studies that specifically focus on the neurodevelopment of females with ASD, spanning basic to clinical research on sex differences by 2011. IACC Recommended Budget: $8,900,000 over 5 years.
3. Identify ways to increase awareness among the autism spectrum community of the potential value of brain and tissue donation to further basic research by 2011. IACC Recommended Budget: $1,400,000 over 2 years.
4. New objective
Launch three studies that target improved understanding of the underlying biological pathways of genetic conditions related to autism (e.g. Fragile X, Rett syndrome, tuberous sclerosis complex) and how these conditions inform risk assessment and individualized intervention by 2012. IACC Recommended Budget: $9,000,000 over 5 years.
5. New objective
Launch three studies that target the underlying biological mechanisms of co-occurring conditions with autism including seizures/epilepsy, sleep disorders and familial autoimmune disorders by 2012. IACC Recommended Budget: $9,000,000 over 5 years.
6. New objective
Launch two studies that focus on prospective characterization of children with reported regression, to investigate potential risk factors by 2012. IACC Recommended Budget: $4,500,000 over 5 years.
7. New objective
Support five studies that associate specific genotypes with functional or structural phenotypes, including behavioral and medical phenotypes (e.g., nonverbal individuals with ASD and those with cognitive impairments) by 2015. IACC Recommended Budget: $22,600,000 over 5 years.

Long-Term Objectives

1. Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of individuals, with a special emphasis on females, youths, and adults with ASD, change over time as compared to typically developing people by 2020. IACC Recommended Budget: $126,200,000 over 12 years.
2. New objective
Launch at least three studies which evaluate the applicability of ASD phenotype and/or biological signature findings for performing diagnosis, risk assessment, or clinical intervention by 2015. IACC Recommended Budget: $7,200,000 over 5 years.

Question 3: What Caused This To Happen And Can This Be Prevented?

Short-Term Objectives

1. Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. Studies should investigate factors contributing to phenotypic variation across individuals that share an identified genetic variant and stratify subjects according to behavioral, cognitive, and clinical features. IACC Recommended Budget: $43,700,000 over 4 years.
2. Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years.
3. Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene – environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years.
4. Enhance existing case-control studies to enroll racially and ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.
5. New objective
Support at least two studies to determine if there are subpopulations that are more susceptible to environmental exposures (e.g., immune challenges related to infections, vaccinations, or underlying autoimmune problems) by 2012. IACC Recommended Budget: $8,000,000 over 2 years.
6. New objective
Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012. Estimated cost $56,000,000 over 2 years.

Long-Term Objectives

1. Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years.
2. Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years.
3. 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.
4. Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years.

Question 4: Which Treatments and Interventions will Help?

Short-Term Objectives

1. Support at least three randomized controlled trials that address co-occurring medical conditions associated with ASD by 2010. IACC Recommended Budget: $13,400,000 over 3 years.
2. Standardize and validate at least 20 model systems (e.g. cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions by 2012. IACC Recommended Budget: $75,000,000 over 5 years.
3. Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, assisted technologies, sensory integration, medical procedures) that have not been rigorously studied for use in ASD by 2012. IACC Recommended Budget: $27,800,000 over 5 years.
4. Complete two multi-site randomized controlled trials of comprehensive early intervention that address core symptoms, family functioning and community involvement by 2013. IACC Recommended Budget: $16,700,000 over 5 years.
5. New objective
Convene a workshop to advance the understanding of clinical subtypes and treatment personalization (i.e. what are the core symptoms to target for treatment studies) by 2011. IACC Recommended Budget: $50,000.
6. New objective
Launch five randomized controlled trials of interventions including biological signatures and other measures to predict response, and monitor quality of life and functional outcomes, in each of the following groups:

* Five trials in infants and toddlers by 2013. IACC Recommended Budget: $30,000,000 over 5 years.
* Three randomized controlled trials of interventions for school-aged children and/or adolescents by 2013. IACC Recommended Budget: $18,000,000 over 5 years.
* Three trials for adults by 2014.IACC Recommended Budget: $18,000,000 over 5 years.

Long-Term Objectives

1. Complete at least three randomized controlled trials on medications targeting core symptoms in people with ASD of all ages by 2014. IACC Recommended Budget: $22,200,000 over 5 years.
2. Develop interventions for siblings of people with ASD with the goal of reducing risk recurrence by at least 30% by 2014. IACC Recommended Budget: $6,700,000 over 5 years.
3. New objective
Conduct at least one study to evaluate the safety and effectiveness of medications commonly used in the treatment of co-occurring conditions or specific behavioral issues in people with ASD by 2015. IACC Recommended Budget: $10,000,000 over 5 years.

Question 5: Where Can I Turn for Services?

Short-Term Objectives

1. Support two studies that assess how variations and access to services affect family functioning in diverse populations, including underserved populations, by 2012. IACC Recommended Budget: $1,000,000 over 3 years.
2. New objective
Conduct one study to examine how self-directed community-based services and supports impact children, youth, and adults with ASD across the spectrum by 2014. IACC Recommended Budget: $6,000,000 over 3 years.
3. New objective
Implement and evaluate two models of policy and practice-level coordination among state and local agencies to provide integrated and comprehensive community-based supports and services that enhance access to services and supports, self-determination, economic self-sufficiency, and quality of life for people with ASD across the spectrum and their families, with at least one project aimed at the needs of transitioning youth by 2015. IACC Recommended Budget: $10,000,000 over 5 years.

Long-Term Objectives

1. Test four methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings by 2013. IACC Recommended Budget: $7,000,000 over 5 years.
2. Test the efficacy and cost-effectiveness of at least four evidence-based services and supports for people with ASD across the spectrum and of all ages living in community settings by 2015. IACC Recommended Budget: $16,700,000 over 5 years.
3. New objective
Evaluate new and existing pre-service and in-service training to increaseskill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers to benefit the spectrum of people with ASD and promote interdisciplinary practice by 2015. IACC Recommended Budget: $8,000,000 over 5 years.

Question 6: What Does the Future Hold, Particularly for Adults?

Short-Term Objectives

1. New objective
Launch at least two studies to assess and characterize variation in the quality of life for adults on the ASD spectrum as it relates to characteristics of the service delivery system (e.g., safety, integrated employment, post-secondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) and determine best practices by 2012. IACC Recommended Budget: $5,000,000 over 3 years.
2. New objective
Evaluate at least one model, at the state and local level, in which existing programs to assist people with disabilities (e.g., Social Security Administration, Rehabilitation Services Administration) meet the needs of transitioning youth and adults with ASD by 2013. IACC Recommended Budget: $5,000,000 over 3 years.
3. New objective
Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, track outcomes, with consideration of ethical issues (insurance, employment, stigma) by 2015. IACC Recommended Budget: $8,400,000 over 5 years.
4. New objective
Conduct at least one study to measure and improve the quality of life-long supports being delivered in community settings to adults across the spectrum with ASD through provision of specialized training for direct care staff, parents, and legal guardians, including assessment and development of ASD-specific training, if necessary, by 2015. IACC Recommended Budget: $7,500,000 over 5 years.

Long-Term Objectives

1. New objective
Develop at least two individualized community-based interventions that improve quality of life or health outcomes for the spectrum of adults with ASD by 2015. IACC Recommended Budget: $12,900,000 over 5 years.
2. New objective
Conduct one study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015. IACC Recommended Budget: $5,000,000 over 5 years.
3. New objective
Conduct comparative effectiveness research that includes a cost-effectiveness component to examine community-based interventions, services and supports to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2018. IACC Recommended Budget: $6,000,000 over 5 years.
4. New objective
Conduct implementation research to test the results from comparative effectiveness research in real-world settings including a cost-effectiveness component to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2023. IACC Recommended Budget: $4,000,000 over 5 years.

Question 7: What other Infrastructure and Surveillance Needs Must be Met?

Short-Term and Long-Term Objectives

1. Conduct a needs assessment to determine how to merge or link administrative and/or surveillance databases that allow for tracking the involvement of people living with ASD in healthcare, education and social services by 2009 . IACC Recommended Budget: $520,000 over 1 year.
2. Conduct an annual “State of the States” assessment of existing state programs and supports for people and families living with ASD by 2009. IACC Recommended Budget: $300,000 each year.
3. Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010. IACC Recommended Budget: $1,300,000 over 2 years.
4. Establish and maintain an international network of biobanks for the collection of brain, fibroblasts for pluripotent stem cells, and other tissue or biological material, by acquisition sites that use standardized protocols for phenotyping, collection, and regulated distribution of limited samples by 2011. This includes developing fibroblast repositories to produce pluripotent stem cells. Protocols should be put into place to expand the capacities of ongoing large-scale children’s studies to collect and store additional biomaterials, promoting detection of biological signatures. IACC Recommended Budget for establishing biobanks by 2011: $10,500,000 over 2 years. IACC Recommended Budget for maintaining biobanks: $22,200,000 over 5 years.
5. New objective
Begin development of a web-based toolbox to assist researchers in effectively and responsibly disseminating their finding to the community, including people with ASD, their families, and health practitioners by 2011. IACC Recommended Budget: $400,000 over 2 years.
6. New objective
Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011.
7. New objective
Develop a web-based tool which provides population estimates of ASD prevalence for states based on the most recent prevalence range and average identified by the ADDM Network by 2012. IACC Budget Recommendations: $200,000 over 2 years.
8. New objective
Create mechanisms to specifically support the contribution of data from 90 percent of newly initiated projects to the National Database for Autism Research (NDAR) and link NDAR with other existing data resources by 2012. IACC Recommended Budget: $6,800,000 over 2 years.
9. New objective
Supplement existing ADDM Network sites to use population-based surveillance data to conduct at least 5 hypothesis-driven analyses evaluating factors that may contribute to changes in ASD prevalence by 2012. IACC Recommended Budget: $660,000 over 2 years.
10. New objective
Develop the personnel and technical infrastructure to assist states, territories, and other countries who request assistance describing and investigating potential changes in the prevalence of ASD and other developmental disabilities by 2013. IACC Recommended Budget: $1,650,000 over 3 years.
11. New objective
Encourage programs and funding mechanisms that expand the research workforce, enhance interdisciplinary research training, and recruit early career scientists into the ASD field by 2013. IACC Recommended Budget: $5,000,000 over 3 years.
12. New objective
Expand the number of ADDM sites in order to conduct ASD surveillance in younger and older age groups; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015. IACC Recommended Budget: $16,200,000 over 5 years.
13. New objective
Support 10 “Promising Practices” papers that describe innovative and successful services and supports being implemented in communities that benefit the full spectrum of people with ASD, which can be replicated in other communities by 2015. IACC Recommended Budget: $75,000 over 5 years.

OK, we might as well get this over with–here are the times the Plan mentions the “V” word:

Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the epidemiological research literature. However, the IOM report acknowledged that the existing population-based studies were limited in their ability to detect small susceptible subpopulations that could be more genetically vulnerable to environmental exposures.

and

Of note, the Committee receives many public comments that reflect concerns about vaccines as a potential environmental factor in autism. Some members of the public are convinced that the current data are sufficient to demonstrate that vaccines do not play a causal role in autism and argue against using limited autism research funds to do additional vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

and

To address public concerns regarding a possible vaccine/ASD link, it will be important for the IACC to continue to coordinate with the National Vaccine Advisory Committee (NVAC), a Federal advisory committee chartered to advise and make recommendations regarding the National Vaccine Program.

under research opportunities:

Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies.

There closest thing to an actual proposed project (i.e. something with an estimated budget) is this one:

# New objective
Support at least two studies to determine if there are subpopulations that are more susceptible to environmental exposures (e.g., immune challenges related to infections, vaccinations, or underlying autoimmune problems) by 2012. IACC Recommended Budget: $8,000,000 over 2 years.)

IACC meeting next Tuesday

14 Jan

As always, you can submit comments for the meeting. You don’t have to wait for them to request comments. They will be voting on the Strategic Plan. This is a good time to submit comments.

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20892-9669
Phone: 301-443-6040
E-mail: IACCPublicInquiries@mail.nih.gov

Here’s the announcement:

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, January 19, 2010 from 9:00 AM – 5:00 PM ET at the William H. Natcher Conference Center, NIH Campus, in Bethesda, MD.

The purpose of the IACC meeting is to discuss and vote on recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research. The meeting will also include a presentation on epigenetics and autism by Dr. Andrew Feinberg of Johns Hopkins University School of Medicine.

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. The meeting will be remotely accessible by videocast and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

To access the conference call:

USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.

The latest information about the meeting can be found at: http://iacc.hhs.gov/events/2010/full-committee-mtg-announcement-January19.shtml

IACC full meeting this Friday

7 Dec

The announcement is below:

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Friday, December 11, 2009 from 9:00 AM – 1:00 PM ET. The meeting will be conducted via telephone conference call and webinar only.

The purpose of the IACC meeting is to continue discussing recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research.

The meeting will be conducted and available to the public via a telephone conference call phone number and a webinar conducted using a web presentation tool on the Internet. Registration is not required. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

To access the conference call:

USA/Canada Phone Number: 888-455-2920
Access code: 9984461

To view the webinar:

https://www2.gotomeeting.com/register/906979171

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the web presentation tool or conference call, please-mail IACCTechSupport@acclaroresearch.com.

The latest information about the meeting can be found at: http://www.iacc.hhs.gov/events/2009/full-committee-mtg-announcement-December11.shtml

Another example of irresponsible blogging by David Kirby

14 Nov

Autism Speaks recently put out what I consider to be a rather irresponsible press release. The Interagency Autism Coordinating Committee (IACC) added a new objective, and Autism Speaks chose to frame it as “IACC includes vaccine research objective in strategic plan for autism research“. I’ve discussed that already, so I won’t go into more details here.

Instead, I want to take a look at how David Kirby treated this story. He blogged this as Top Federal Panel Endorses Autism Research That Includes Vaccines – Dueling Press Releases Ensue. Mr. Kirby takes on the role of (misinformed) cheerleader for the vaccine-epidemic groups that sponsor the Age of Autism blog, where the piece was posted. As you will see, he probably should have checked with his community before posting.

On Tuesday, the Interagency Autism Coordinating Committee (IACC), Washington’s leading arbiter for directing federal funds to autism research, unanimously voted to recommend studies that include investigations into possible links between autism and environmental triggers – including vaccines – in certain subsets of children.

Mr. Kirby is invited to check the actual process of federal funding of autism research and the role of the IACC. He could watch the latest video of an IACC meeting, where Dr. Insel (director of NIMH and chair of the IACC) makes it clear that the IACC is an advisory and planning committee only. They are far from the “final arbiter for directing federal funds”. That is a minor point compared to the fact that the IACC did not recommend studies into the possible links between autism and vaccines.

This fact that the IACC was not committing to vaccine-autism research was not missed by some of his readers, who are quoted in the conclusion of his recent blog post. A conclusion which is rather confused in tone:

So, just to recap: The Federal Government’s top autism panel has voted unanimously to support studies into autism and its possible environmental triggers – including vaccination. In turn, Autism Speaks has cheered “including vaccine research objectives in the IACC plan” while its supposed rival, ASF, has equally cheered that “vaccine research (is) out of the IACC autism plan.”

Some parents I spoke with grudglingly accepted ASF’s view of events, however. “IACC took out ALL proposed vaccine research studies; They specifically elimated A) a vax unvax study, B) an unvaxed or partially vaxed sibs study and C) an adjuvant study – all gone,” one mother wrote. “They only left the word “vaccine” in a along laundry list of POTENTIAL future possible (translation never) study topics.”

Whether the IACC has recommended specific vaccine-autism research, or environment-autism research, vaccines remain on the list of possible contributors to autistic regression as far as the US Government is concerned.

And that is just how Congressional leaders intended it to be.

If parents are telling Mr. Kirby that the IACC is not really committing to fund vaccine research, how can this “just how Congressional leaders intended it to be”, since Mr. Kirby is asserting that the congressional intent is to include vaccine-autism research? It reads a bit confusing to me.

Well, it’s confusing because David Kirby has once again edited his post after the fact. Take a look at this screenshot of the original post:

kirby_backpedal

Yep, it’s different. Sometime after he posted his piece, he added the entire paragraph :

Some parents I spoke with grudglingly accepted ASF’s view of events, however. “IACC took out ALL proposed vaccine research studies; They specifically elimated A) a vax unvax study, B) an unvaxed or partially vaxed sibs study and C) an adjuvant study – all gone,” one mother wrote. “They only left the word “vaccine” in a along laundry list of POTENTIAL future possible (translation never) study topics.”

Yes, David Kirby wrote a post praising the IACC’s actions as funding vaccine research and then backpedaled when autism parents emailed him with the reality of the situation: the IACC did not commit to funding vaccine research.

He also edited out a comment where he refers to a statment by Alison Singer of the Autism Science Foundation as “And there was this, almost Orwellian statement: ”

I guess it was Orwellian until his own readers agreed with it?

Can you find where Mr. Kirby notes his change in that piece? Neither can I. A major change like this should be noted in the piece.

I’ll take a side-trip here into discussing Mr. Kirby’s mistakes and the way he handles them. Unfortunately, Mr. Kirby has a history of changing blog posts after the fact, even to the point of leaving clearly erroneous posts online without a comment.

A few examples:

He wrote a post, “CDC: Vaccine Study Design “Uninformative and Potentially Misleading“”. After Blogger (and epidemiologist) epiwonk showed the mistakes in that post, Mr Kirby rewrote the post, complete with a note about the error. In an odd move, he left first the erroneous post online. As epiwonk showed, even the second post was seriously flawed, but Mr. Kirby chose to leave it online.

Mr. Kirby made a serious misquote in his presentation to congressional staffers. No mention of the error was made in the power point slides he posted online.

He made a factor of 10 error in reading a graph for a blog post. He copied the blog post from the Age of Autism blog to the Huffington Post, and corrected the error in his Huffington Post piece without correcting the Age of Autism piece.

He made the rather simple error of mistaking the Obama transition teams Change.gov website for the change.gov website. Again, he posted to both the Age of Autism blog and to the Huffington Post. Mr. Kirby added a comment to the Huffington Post piece, but just deleted the erroneous post on the Age of Autism blog.

I make mistakes. Sometimes pretty spectacular mistakes. But I think it shows a certain level of disrespect from Mr. Kirby in how he handles his mistakes.

But, I’ve digressed from the main topic here: how Mr. Kirby handled the press releases from Autism Speaks and the Autism Science Foundation about the IACC’s new objective. Even without the confusing conclusion and the changes made after the fact, Mr. Kirby’s post is irresponsible.

It is one thing to take on the role of cheerleader/journalist as Mr. Kirby has done. But he gets to walk away from this community. He’s tried to walk away once, and he is now about to embark on a new career path taking on factory farming. In a few years when parents are complaining that the government hasn’t funded vaccine-autism research like David Kirby told us the government would…in a few years when the bitterness comes to the surface…where will David Kirby be? Will he be here to take responsibility for the mess he has created?

I admit, this is minor compared to the mess he made with convincing parents that autism was caused by thimerosal. How many children have been “treated” with chelation who wouldn’t have if Mr. Kirby hadn’t taken on this cause? How many of them regressed or were otherwise harmed? We will never know.

And he will never accept his role in this and his responsibility.

Autism Speaks misleads the public on the IACC’s stance on vaccine research

12 Nov

Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.

According to the press release and the Autism Speaks website:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I’ve already noted that the statement Autism Speaks gave before the IACC was incorrect. Vaccine research was not a “clear directive” of the Combating Autism Act. You can check for yourself.

Alison Singer of the Autism Science Foundation, and member of the IACC, has a statement on the ASF blog, Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan.

The ASF blog notes:

Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.

Also:

Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.

The entire statement can be read on the Autism Science Foundation’s blog.

It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:

The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).

Compare that to the Autism Speaks announcement:

IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research

Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”

As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.

But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.

What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.

This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.

Autism Speaks pushes the “legislative history” myth about the Combating Autism Act

11 Nov

Autism Speaks has announced (possibly incorrectly) that the IACC (Interagency Autism Coordinating Committee) has included vaccine language in the Strategic Plan.

Autism Speaks has posted their statement on their website.

Here is the statement (from their press release):

In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772 (Aug. 3, 2006). In the House, Joe Barton, Chairman of the House Energy and Commerce Committee, was equally clear: “[T]he legislation rightfully calls for renewed efforts to study all possible causes of autism – including vaccines and other environmental causes… The important thing to understand is that there are no preconceived notions contained in this bill; the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.” 152 Cong. Rec. H8787 (Dec. 6, 2006)

Beyond this clear directive of the CAA, Autism Speaks supports rigorous, evidence-based scientific research onto all aspects of autism from potential causes, including both genetic and environmental factors, to diagnosis and treatments. As such, we strongly urge that further vaccine safety research be included in the Strategic Plan for Autism Spectrum Disorder Research. Comprehensive “good” science should be the standard in all areas studied and there are aspects of vaccine safety research that have not yet been, and should be, considered.

It is also essential that all scientific research recommended by IACC and funded by the NIH be rigorous and evidence-based to engender the trust of the scientific, medical and entire autism community. Without a solid foundation that supports confidence in scientific conclusion, the entire portfolio of scientific research is at risk of losing community trust. Further, vaccine safety research will increase both the level of confidence in the safety of our nation’s vaccine program and the rate of participation, which is absolutely crucial for the prevention of serious infectious diseases.

Autism Speaks calls on the IACC to consider the importance of evidence-based science, trust, and to remain true to the critical legislative purpose of the Combating Autism Act and asks the IACC to include vaccine safety research in the strategic plan.

The statement that vaccine research is a “clear directive of the CAA” is, simply, false.

The CAA (Combating Autism Act) does not include the statements by congressman Barton and Senator Enzi are part of the congressional record. They are statements made by the individual legislators.

They are not a part of the Combating Autism Act, much less a clear directive of the Act.

IACC includes vaccine language in strategic plan?

11 Nov

I was unable to listen to yesterday’s meeting. But according to a press release from Autism Speaks:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

IACC full committee meeting tomorrow

10 Nov

The Interagency Autism Coordinating Committee will be meeting tomorrow (November 10th) “to discuss recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.”

You can listen in with
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Here’s the agenda:

Time Event
8:30 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:10 Public Comments
9:30 Approval of October 23, 2009 IACC Full Committee Minutes
9:40 Consideration of Strategies for Updating the Strategic Plan
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC

How much change to make to the current Strategic Plan?

Examples of Questions for Discussion:

* Will adding or significantly re-writing chapters be helpful or confusing to the research community? Does this vary by chapter?
* Will adding/deleting objectives each year be helpful or confusing to the research community? Does this vary by chapter?
* Should the update include progress from the portfolio analysis for each objective as an indicator of accountability? What will this mean if objectives are re-written or deleted?

9:50 IACC Discussion of Strategies for Updating the Strategic Plan
10:30 Break
10:45 Recommendations for Updating the Strategic Plan: Discussion and Votes

* Questions 1, 2, 3, 4, 5, 6 and Infrastructure Items

12:00 Lunch
1:00 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
3:00 Break
3:15 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
5:00 Closing Comments and Adjournment

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