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Funding Science in a Time of Austerity

12 Mar

Funding Science in a Time of Austerity is a blog post by Tom Insel, director of the National Institute of Mental Health (NIMH) in the US.

I’ve discussed many news stories of late which discuss special education in these tight fiscal times. Naturally research will be impacted as well. While the article by Tom Insel does not discuss autism specifically, it is worth a read. NIMH has not had a final appropriation from the government for this fiscal year (which started in Oct. 2010). And they are expecting cuts for fiscal year 2012.

Following is a post by Tom Insel, director of the NIMH:

C. S. Lewis once said that the “task of a modern educator is not to cut down jungles but to irrigate deserts.” The same might be said of an NIH institute today. But our ability to irrigate deserts may be compromised as we appear to be facing an austere funding future. As the Nation struggles to regain its economic footing, the final budgets for NIH in 2011 and 2012 remain uncertain. But there is little doubt that these will be tough years for NIMH funding.

Here is a quick synopsis. Following the doubling of the NIH budget from 1998-2003, NIMH has received budgets with sub-inflationary increases each year. By 2009, we had lost about 18 percent of our purchasing power relative to 2003, but through strategic cuts in awards, reductions in the out-years of multi-year grants, and elimination of programs, NIMH was able to maintain relatively stable funding throughout this period. By stable funding, I mean that we continued to support roughly 550 new research grants (R01 and R21-type grants) each year, representing at least 15 percent of proposals.

In 2009 and 2010, the American Recovery and Reinvestment Act (ARRA) brought a surge in funding to create jobs. With over $370M, NIMH was able to support several innovative projects, create or retain jobs, and fund some additional R01-type grants (for 2 years) on top of our regular appropriated budget. But this one-time surge from ARRA obscured the longer-term pattern of flat budgets that continued in 2009 and 2010 beneath the ARRA bubble. In 2010, the NIMH budget was 2.6 percent higher than 2009, still losing ground to inflation.

What about 2011? Although our budget year began October 1, 2010, we are still awaiting a final appropriation. Last week, Congress passed a continuing resolution until March 18, which means we will continue to operate under our 2010 budget rather than the President’s 2011 budget proposed last February. Prior to March 18th, Congress must vote either to extend the continuing resolution or to appropriate a budget for the remainder of the year. Both houses of Congress are concerned about the growing deficit and are committed to reining in spending, especially within the 12 percent of the budget labeled as “discretionary.” This will almost certainly mean a reduction in the NIH and NIMH budgets, but we do not know the extent of this reduction. The House voted for a $1.6B reduction below the 2010 NIH budget for 2011, including a 4.1 percent reduction (-$60M from 2010) for NIMH, but this budget still needs to be considered by the Senate.

In the absence of a final budget for this year and with expectations that we will likely see reductions in 2012, NIMH has been cautious about funding grants. We have a few principles that have guided us: prioritize research relevant to our strategic plan, support innovation, maximize the number of R01 grants, and protect early stage scientists. In support of these principles, we have reduced our intramural program, funded fewer centers, and reduced support of some large programs.

But even with these changes, the 2010 budget leaves us short in 2011. Partly because of the number of continuing grants and partly because of the increasing average cost of new awards, if we receive the full 2010 budget for 2011, we are projecting 481 new grants, representing roughly 10 percent of proposals. This would be the first time since 1999 that we would fund fewer than 500 new grants and would mark the lowest success rate in over 15 years. If the 2011 appropriation is 4.1 percent less than the 2010 budget, the actual number of new grants funded will likely be below 400.

Not surprisingly, this situation is creating anxiety in the scientific community. Basic scientists believe that the money has been shifted to translation. Clinical researchers say that funds are only going to basic science. But in fact, the Division of Neuroscience and Basic Behavioral Science, which was 27 percent of the total NIMH budget in 2005, was 29 percent in 2010 and will likely be close to this portion again in 2011.

Some have suggested that the funds are going to Centers or the intramural program instead of investigator-initiated R01 grants. But the percentage of R01s has only increased over the past decade.

A few scientists have suggested that the problem is a recent change in the review policy, allowing only a single re-submission. While this policy must seem catastrophic for someone who just missed the payline with a re-submitted grant, re-instating the “A2” would only delay funding for those within the payline. It may not increase the number of grants funded or the success rate.

For scientists, this may feel like a funding desert. During this relative drought, there may be many reasons for complaints. But the bottom line is that funds for new grants are the lowest we have seen in several years and the average costs of new grants is higher than ever ($419K in 2010 vs $313K in 2005). NIMH is committed to funding the highest impact science with the available funds. But as much as we would like to “irrigate the desert,” some outstanding science will, unfortunately, not get funded. And those projects selected for funding may receive less than optimal support.

What makes this desert especially difficult is that the scientific opportunities have never been better. We have unprecedented traction in the science necessary to make progress for helping people with mental illness. However, in this period of austerity, we will not at this time be able to fund some of the science that will make a difference for those in greatest need.

Autism Science Foundation announces IMFAR stakeholder travel grant recipients

10 Mar

The Autism Science Foundation has announced the recipients of this year’s stakeholder travel grants for IMFAR.

The press release is below:

AUTISM SCIENCE FOUNDATION ANNOUNCES
IMFAR STAKEHOLDER TRAVEL GRANT RECIPIENTS

IMFAR Stakeholder Travel Awards will Support Parents, Individuals with Autism, Teachers & Students

(March 10, 2011—New York, NY)–The Autism Science Foundation, a not for profit organization dedicated to supporting and funding autism research, today announced the recipients of its IMFAR Stakeholder Travel grants. ASF will make 11 awards of up to $1000 to be used to cover expenses related to attending the International Meeting for Autism Research in San Diego in May 2011. After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

This year’s recipients are:

Geraldine Bliss–Parent
Matthew Carey–Parent
Shannon Des Roches Rosa–Parent
Mark Fornefeld–Self Identified Individual with Autism
Abby Hare–Graduate Student
Erin Lopes–Parent
Molly McGrath–Self Identified Individual with Autism/MIT Media Lab
Brianna Miller–Special Ed Teacher, Newark Public Schools
Sharman Ober-Reynolds–Parent/Senior Research Coordinator, SARRC
Megan O’Boyle –Parent
Max Rolison–Undergraduate Student

IMFAR is an annual scientific meeting, convened each spring, to promote exchange and dissemination of the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way”, said Alison Singer, President of the Autism Science Foundation. “We are confident that the award recipients will all do a great job of bringing critical new research information to their communities, improving the speed with which the latest data are shared with the broader autism community.”

The Autism Science Foundation is a 501(c)(3) public charity launched in 2009 whose mission is to support autism research by providing funding to those who conduct, facilitate, publicize and disseminate autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The International Society for Autism Research (INSAR) is a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders. INSAR was created in 2001. The society runs the annual scientific meeting – the International Meeting for Autism Research (IMFAR) and publishes the research journal “Autism Research”.

Contact Info:

Julie Martin
Events and Media Manager
Autism Science Foundation
jmartin@autismsciencefoundation.org
419 Lafayette Street, 2nd floor
New York, NY 10003

March Is Developmental Disabilities Awareness Month

3 Mar

For the past few years, each April gets a lot of attention for Autism Awareness Month. All well and good but are you aware that Developmental Disabilities Awareness Month has already started?

A message from The Arc:

March Is Our Month

Thanks to the advocacy efforts of The Arc in the 1980s, President Ronald Reagan officially declared March to be Developmental Disabilities Awareness Month in 1987. For nearly a quarter of a century, The Arc and its network of 700+ chapters across the country have fostered respect and access for individuals with intellectual and developmental disabilities (i/DD). We have made tremendous progress in promoting and protecting the rights of people with I/DD and creating opportunities for them to live, learn and work as valued members of their communities.

However, it’s time more people became aware of the challenges faced by more than 7 million Americans and their families as they strive to be fully included in society. Join us during March to help raise awareness. Volunteer at a local chapter of The Arc. Donate. Or simply speak up and help enlighten those around you. Find out more about I/DD and what you can do at www.thearc.org today. Watch our blog, Facebook page and Twitter profile for messages all month about things you can do as an individual to help raise awareness then spread the word…share and retweet and let’s get everyone talking about I/DD during March.

David Cameron intends to cripple those with disabilities

3 Mar

Today I received an email from NAS stating:

The Government has announced a one billion pound cut to Disability Living Allowance (DLA). Next week in parliament, MPs will debate plans for a new system which could make it much harder for adults with autism to claim DLA…

For those not in the know DLA is a state benefit given to children (or their parents depending on age) and adults who have an established need based on circumstances arising from their disability. For example, my child receives DLA because xe cannot care for xyrself and needs extra help that must be accounted for. It is not a huge amount of money but for people with a disability, every single penny counts.

NAS’ email continued:

We need you to ask your MP to help protect this crucial benefit for people with autism.

Please also visit the NAS Who Benefits page to actively support the initiative and make David Cameron’s coalition led gvmt wake up to the reality that for autistic adults, DLA is a lifeline to not just personal independence but also simple everyday living.

Release of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research

28 Feb

The IACC has released the 2011 Strategic Plan. I have quoted the announcement below, which includes the links:

The Interagency Autism Coordinating Committee (IACC) and the Office of Autism Research Coordination (OARC) are pleased to announce the release of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. The updated Strategic Plan contains 16 new research objectives covering a variety of issues, including use and accessibility of interventions for non-verbal people with ASD, health promotion for people with ASD, and issues related to safety for people on the spectrum. The HTML version of this year’s Strategic Plan is fully hyperlinked throughout to websites with information about funders, programs and over 180 ASD-related publications, which should make the Plan an especially useful resource for people with ASD, families, providers, research funders, researchers, policymakers, and the public. A formatted, downloadable PDF version of the Plan is also available. Links to the new Strategic Plan and related information, including a news update about the Plan, can be accessed from the IACC Home Page.

The Arc Action Alert – Do You Want “Congregate Care”?

25 Feb

The Arc sends out periodic Action Alerts. I just got this one in my email inbox. Do you think the government should go back to segregated living and institutions for people with intellectual and developmental disabilities? Now is your chance to add your comments and be heard.

Do You Want “Congregate Care”?
Then now is the time to counter calls for institutions and other segregated settings

institution for people with intellectual and developmental disabilities. The Administration on Developmental Disabilities (ADD) has just extended the deadline for submitting testimony for its national listening sessions. And people who support institutions are wasting no time in letting ADD know what they want. In fact, VOR is calling on its membership to “Tell ADD to support Choice” in residential settings for people with intellectual and developmental disabilities.

Please take a minute to provide your comments to ADD and let them know that segregated, congregate living for people with disabilities should NOT be a choice. We know all too well that abuse, neglect and other forms of denigration are far more likely to occur in large congregate settings. Integrated, community based housing is the only policy the federal government should be supporting.

It’s critical that ADD hear from many people with intellectual and developmental disabilities or their family members. Please submit your comments before March 4 at:
http://www.envision2010.net/comment_submit.php

Thank you in advance for your advocacy.

Age of Autism have a good old cry on Twitter

22 Feb

Back story: as Sully blogged the other day an American political cartoon strip had a bit of a dig at the anti-vaccine brigade. This provoked the following response from Age of Autism:

Yeah, thats right, Age of Autism truly see themselves as a victimised minority group. No really. They do. They’re putting themselves on the same footing as every Suffragette, every victim of Apartheid, every disabled activist and every poverty stricken member of a developing country thats ever lived.

Age of Autism have a slogan ‘the bull stops here’

and they’re absolutely right – thats exactly where the bull stops. In fact, it not only stops, it takes its slippers off, puts its feet up and stays for ever.

Age of Autism, you really need to get a grip. Maybe a name change might help (click for bigger).

A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

15 Feb

I bring this up because there is a common argument that the autism “rates” in places like Denmark and Sweden are much lower than those in the US and elsewhere. This is used to try to negate studies using those country’s populations in, for example, showing that there is no increased risk from thimerosal or the MMR vaccine. This error often stems from comparing “incidence” to “prevalence”.

Is the autism prevalence low in Denmark? Not really. This paper just out (and other reports previously, including this one cited by Steven Novella) show a prevalence pretty comparable to the US.

J Autism Dev Disord. 2011 Feb 11. [Epub ahead of print]
A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

Parner ET, Thorsen P, Dixon G, de Klerk N, Leonard H, Nassar N, Bourke J, Bower C, Glasson EJ.

Institute of Public Health, Department of Biostatistics, University of Aarhus, Aarhus, Denmark.
Abstract

Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist.

Prevalence of 68.5 per 10,000 children. A previous estimate was 80 per 10,000. Generation Rescue claimed a rate of 1 in 2200 (4.5 per 10,000) when they tried to make the case that…oh I bet you can guess…that vaccines cause autism. The 1 in 80 figure was already published, so I doubt they will change their story given yet another study.

Jenny McCarthy backs away from vaccines

3 Feb

As I blogged recently, Paul Offit was a guest on a US show called The Colbert report. Whilst emailing him about his appearance he mentioned the following:

Of interest, one of the show’s staff said that xe had been called by Jenny McCarthy (which I assumed meant Jenny McCarthy’s handlers), who told xyr not to mention Jenny’s name because *Jenny no longer speaks out against vaccines* . [Jenny’s handler was told] that Colbert wouldn’t mention her name but I was welcome to. The opening came when Colbert said he hadn’t heard about the science. But I didn’t mention McCarthy.

My, my. I wonder if anyone has told the founder members of Generation Rescue this little factoid? And what use to them is a Jenny McCarthy that won;t spout off about vaccines at the drop of an opinion?

Vaccines and Autism: A Story of Medicine, Science and Fear

2 Feb

Tomorrow on National Public Radio (US) The Diane Rehm Show will host a discussion of autism and vaccines: Vaccines and Autism: A Story of Medicine, Science and Fear

In 1998 a research paper was published that linked the childhood measles, mumps and rubella vaccine to the onset of autism, a life long developmental disorder. Follow up studies could not replicate the findings casting doubt on its conclusions, and earlier this year it was proven that this original study was, in fact, fraudulent. But the damage was done. Childhood vaccination rates dropped resulting in outbreaks of measles and whooping cough. Funds that would have gone to new research into the causes of autism were diverted, and surveys indicate that about one in five Americans continues to believe that a childhood vaccine can trigger autism. A story of fraudulent medical research and its consequences.

Guests will be:

Seth Mnookin: Author of “Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top” and “Hard News: The Scandals at the New York Times and Their Meaning for American Media.” He is a contributing editor at “Vanity Fair” and a former senior writer for “Newsweek.”

Dr. Roberta DeBiasi: pediatric infectious diseases physician at Children’s National Medical Center

Alison Tepper Singer: Founder and President of the Autism Science Foundation, formerly Executive Vice President of Autism Speaks, served on the federal Interagency Autism Coordinating Committee (IACC.)