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Autism – Combating Autism Reauthorization Act to be voted on this evening by the House of Representatives

20 Sep

The Combating Autism Reauthorization Act is schedule to be voted on in the U.S. House of Representatives today. Amongst other things, the Act sets out authorizations for research funding for autism. This is also the law which authorizes the Interagency Autism Coordinating Committee (IACC).

Below is the announcement from The Arc. The link helps you find your congressperson’s phone number to call and ask them to vote (my congressman is voting for it).

GOOD NEWS AND ACTION NEEDED TODAY
URGE YOUR REPRESENTATIVE TO PASS THE COMBATING AUTISM ACT REAUTHORIZATION
Call Now
Enter Your Zip Code

September 20, 2011

We have good news! It appears that our advocacy over the past few weeks is starting to pay off!

We have just been informed (directly by Majority Leader Eric Cantor’s office) that the House leadership has put HR 2005, the reauthorization of the Combating Autism Act, on the “suspension calendar” today, Tuesday, September 20 at 6:30 p.m. This means that the House bill could be passed on a fast-track procedure without committee consideration. They need 2/3 of the Representatives present and voting for the bill to be passed under this procedure.

What Does the Combating Autism Act Do?

It provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the CAA supports. Click here to learn more.

Why is This Important Now?

The Combating Autism Act will expire at the end of this month. If it is not reauthorized before then, people with autism and other developmental disabilities stand to lose appropriate diagnostic, early intervention, and support services.

Take Action

Call your Representative’s office TODAY before 6:30 p.m. EST. Click on the “Take Action” link and enter your zip code to locate your representative’s phone number.

What to Say:

“Please Vote for H.R. 2005, the reauthorization of the Combating Autism Act, when it comes up for a vote under “Suspension of the Rules” this evening.”

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

20 Sep

The National Council on Disability (NCD) advices the U.S. government on many areas, including civil rights, diversity, employment, housing and education. The NCD has sent a letter to the U.S. Secretary of Education, Arne Duncan, on the subject of “No Child Left Behind” and waivers which allow schools to “shield” some children from the standards of NCLB.

The full letter can be found here.

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

Following a meeting with U.S. Department of Education Secretary Arne Duncan on Monday, the National Council on Disability (NCD) sent the following letter to the Secretary, outlining policy recommendations for the NCLB waiver process:

September 19, 2011

The Honorable Arne Duncan, Secretary of Education
U.S. Department of Education
400 Maryland Avenue, SW
Washington, DC 20202

Dear Secretary Duncan:

It was a pleasure meeting with you and your senior staff to discuss priorities for students with disabilities within the forthcoming waiver applications for state flexibility under the No Child Left Behind (NCLB) amendments to the Elementary and Secondary Education Act. I’m writing as follow up providing you with a number of policy proposals we are putting forward to ensure that the significant progress that students with disabilities have made under No Child Left Behind is not lost as the Department pursues a waiver process. While the achievement gap between students with and without disabilities is still wide, No Child Left Behind’s disaggregation of data and requirement that schools make Adequate Yearly Progress for each subgroup of students has been a critical driver of reform.

We support the “flexibility for reform” model the Department has put forward in its vision for the waiver process. Having said that, it is imperative that the Department consider the needs of students with disabilities both with regards to what it should and should not provide in flexibility from NCLB’s accountability provisions and what it should require states and school districts to offer in return for the aforementioned flexibility.

With regards to flexibility, we urge the Department to ensure that the following provisions of NCLB are not eliminated or weakened through the waiver process:

Maintain NCLB’s requirement to disaggregate data and ensure a 95% participation rate in state assessments, disaggregated by subgroup population;
Maintain accountability for the Students with Disabilities subgroup and avoid the creation of additional rules allowing states and districts to shield certain populations of students from assessment; and
Maintain NCLB’s teacher quality provisions, particularly the requirement that special education teachers be highly qualified in any content area in which they provide direct instruction;

With regards to reform, we urge the Department to ensure that closing the achievement gap faced by students with disabilities is given sufficient emphasis through incorporating reform provisions which specifically relate to this population. As such, we encourage the Department to consider the following proposals for inclusion in the waiver process:

Eliminate the 2% rule allowing states and school districts to shield 2% of all students from their accountability systems through the use of modified assessments;
Reform the 1% rule to ensure that students who take the alternative assessment must first be assessed for and have access to Augmentative and Alternative Communication (AAC) technology;
Require states applying for waiver flexibility to instruct Local Education Agencies (LEA) to create an additional sub-group for the purposes of disaggregation of data when a sufficient numbers of students within an LEA fall into multiple sub-groups (i.e.: African-American students with disabilities, low-income students with disabilities, etc.);
Require states applying for waiver flexibility to set goals for increasing students with disabilities’ access to the general education classroom (as measured through IDEA State Performance Plan Indicator 5a); and
Require states to increase their use of research-validated educational methodologies, such as Universal Design for Learning and Response to Intervention;

NCLB has been a source of tremendous progress for students with disabilities, and we believe that if properly constructed, the waiver process can drive similar reform. We urge you to ensure that closing the achievement gap for students with disabilities is as great an area of emphasis for the Department as closing the achievement gaps faced by other minority groups. To quote from NCD’s 2008 report The No Child Left Behind Act and the Individuals with Disabilities Act: A Progress Report, “Teachers, administrators, and the community are becoming aware of what students with disabilities are capable of achieving if they are held to high standards and expectations .”

NCD’s Policy and Program Evaluation Committee Chair Ari Ne’eman stands ready to work with you and your staff on these matters. He can be reached at aneeman@ncd.gov or at our office phone number at 202-272-2004. Thank you for your consideration.

Sincerely,

Jonathan M. Young, J.D., Ph.D.
Chairman, National Council on Disability

Ethical, Legal and Social Implications of Autism Research.

20 Sep

The National Institutes of Health’s Office of Autism Research Coordination (OARC) and the Autism Coordinating Committee (ACC) are sponsoring the workshop: Ethical, Legal and Social Implications of Autism Research.

The announcement is below. This sounds like what could be a very useful workshop and a chance to be heard on an important topic.

Date:

Monday, September 26, 2011

Time:

8:30 a.m. to 5:00 p.m. Eastern time (ET)

Agenda:

The National Institutes of Health’s Office of Autism Research Coordination (OARC) and the Autism Coordinating Committee (ACC) are sponsoring the workshop: Ethical, Legal and Social Implications of Autism Research. Leading community stakeholders, bioethicists, and scientific researchers will address topics such as ethical implications of genetic and environmental risk factor research, ethical issues in genetic testing, risk communication, ethical issues in childhood and adult diagnosis, and effective partnering with families and the self advocacy community to advance treatment/intervention and services research.

The goal of the workshop will be to define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.

To view the agenda, click here.

Place:

Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, Maryland 20852
Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.

Webcast Live:

http://nih.granicus.com/MediaPlayer.php?event_id=67 This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.

Conference Call Access:

Dial: 888-390-3404
Access code: 6003464

Cost:

The meeting is free and open to the public.

Pre-Registration:

http://www.acclaroresearch.com/oarc/9-26-11/ This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.
Pre-registration is strongly recommended, but pre-registration does not guarantee you a seat. Seating is first come, first served, with expedited check-in for those pre-registered. Seating is limited to room capacity.

Access:

On-site parking available with validation
2 1/2 blocks from the White Flint Metro (Red Line)

Contact Person:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8185a
Rockville, Maryland 20852-9669
Phone: 301-443-6040
Email: IACCPublicInquiries@mail.nih.gov

Please Note:

This workshop will also be open to the public through a conference call. Members of the public who participate using the conference call phone number will be able to listen to the discussion but will not be heard. If you experience any technical problems with the conference call, please e-mail OARC’s technical support team at IACCTechSupport@acclaroresearch.com or call the OARC Technical Support Help Line at 443-680-0098.

Individuals who participate in person or by using these electronic services 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 on this notice at least 7 days prior to the meeting.

As a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. 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. Please note: Online pre-registration will close by 5:00 p.m. the day before the meeting. After that time, registration will have to be done onsite the day of the meeting.

Schedule for meeting is subject to change.

Scout with autism earns all 132 badges

20 Sep

I wish there were more details in this story. The story is: Scout with autism earns all 132 badges. With apologies for copying the whole story (it is so short!)

To become an Eagle Scout, the highest achievement in Scouting, a Boy Scout must earn 21 merit badges. Nathan Christensen, 17, a senior at Bingham High in South Jordan, Utah, earned all 132 badges. And what makes his accomplishment even more impressive is that Nathan has autism.

Nate’s mother Sandy said Scouting helped improve his social skills. Nate, who didn’t start speaking until he was 7, started working on earning his badges, from journalism to camping, when he was 11. Six years later he had all 132.

Nate took no shortcuts in getting his badges, even though that was an option for him. He has binders for all of his badges to remind him of his hard work, and to inspire him in the future.

Autism Science Foundation relaunches website

19 Sep

The Autism Science Foundation has relaunched their website with a new look and much more content. The press release is below, and includes links to some of the main pages.

The site keeps the basic style of the original, but at the same time has gone through a major rework.

(September 19, 2011—New York, NY)— The Autism Science Foundation (ASF), a nonprofit organization dedicated to supporting and funding autism research, announced today that it has re-launched its website as an enhanced, interactive resource for parents, individuals with autism, teachers, scientists and other autism stakeholders.

The website is the central distribution point for the latest in autism science and research. The site features:

•Leading autism research broken down by year
•In-depth interviews with noted scientists and promising autism researchers
•A daily round-up of news about autism from major press and high impact blogs
•Details about ASF funding opportunities for scientists and other stakeholders
•Explanation of evidence-based treatments for autism
•Information about the early warning signs of autism and autism diagnosis
•Links to studies looking at vaccination and autism

Over the next few weeks, ASF’s team will be adding more features to the site including autism research sorted by topic area and a section about autism research studies seeking participants.

“It’s crucial that families, educators and scientists have access to up-to-date information that they know has been peer-reviewed or vetted by ASF’s Scientific Advisory Board,” said ASF co-founder Karen London. “Since ASF’s inception in 2009, we have aimed to be a central and trusted source of rigorous science information for the autism community.”

“We are pleased to be able to offer the autism community a broad and deep source of evidence-based information that integrates more interactive features and that reorganizes information to make it more useful and easier to find, in response to community feedback,” said Jonathan Carter, ASF’s operations manager. “The site offers ways for everyone who has a connection to autism to get involved in this important issue.”

ASF began funding research grants in 2009, its first year of operations, and has increased its funding levels each year. Since 2009, it has funded nearly half a million dollars in research grants. The organization was recently named the number one startup nonprofit in the “Disabilities” category by Philanthropedia/Guidestar.

ASF is a 501(c) (3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting 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. To learn more about the Autism Science Foundation or to make a donation visit www.autismsciencefoundation.org.

Note that I occasionally write for the ASF blog.

Should metabolic diseases be systematically screened in nonsyndromic autism spectrum disorders?

16 Sep

Metabolic disorders became a major point of discussion within the autism community a few years back. The upside was that a potentially important area of research (and not just within autism) was highlighted. The downside was that a lot of misinformation was propagated.

A lot of answers are still unknown precisely. The prevalence of metabolic disorders in autism, specifically mitochondrial disorders, was likely exaggerated by many, but that doesn’t make it an unimportant question. The question of how metabolic disorders fit into the etiology of autism is another open and valuable question.

The current study addresses the question of whether autistics should be routinely screened for metabolic disorders. On some very real level, I’m sure many people think that people should be screened for everything. If screening were fast, accurate, cheap and non-invasive, this would be a good point. But, this isn’t really the case. So the authors pose the question: Should metabolic diseases be systematically screened in nonsyndromic autism spectrum disorders?

The paper comes from a group at APHP, Reference Center for Inherited Metabolic Disease, Hôpital Robert Debré, Paris, France.

Here is the abstract:

BACKGROUND:

In the investigation of autism spectrum disorders (ASD), a genetic cause is found in approximately 10-20%. Among these cases, the prevalence of the rare inherited metabolic disorders (IMD) is unknown and poorly evaluated. An IMD responsible for ASD is usually identified by the associated clinical phenotype such as dysmorphic features, ataxia, microcephaly, epilepsy, and severe intellectual disability (ID). In rare cases, however, ASD may be considered as nonsyndromic at the onset of a related IMD.
OBJECTIVES:

To evaluate the utility of routine metabolic investigations in nonsyndromic ASD.
PATIENTS AND METHODS:

We retrospectively analyzed the results of a metabolic workup (urinary mucopolysaccharides, urinary purines and pyrimidines, urinary creatine and guanidinoacetate, urinary organic acids, plasma and urinary amino acids) routinely performed in 274 nonsyndromic ASD children.
RESULTS:

The metabolic parameters were in the normal range for all but 2 patients: one with unspecific creatine urinary excretion and the other with persistent 3-methylglutaconic aciduria.

CONCLUSIONS:

These data provide the largest ever reported cohort of ASD patients for whom a systematic metabolic workup has been performed; they suggest that such a routine metabolic screening does not contribute to the causative diagnosis of nonsyndromic ASD. They also emphasize that the prevalence of screened IMD in nonsyndromic ASD is probably not higher than in the general population (<0.5%). A careful clinical evaluation is probably more reasonable and of better medical practice than a costly systematic workup.

They conclude that the prevalence of inherited metabolic disorders (IMD) in non-syndromic (i.e. those where an underlying condition is considered to be the cause of autism) autistics is about the same as for the general population (<0.5%) and that routine screening does not give insight into the cause of autism.

Here are a couple of paragraphs from the study:

Notably, a recent study pointed out that mitochondrial dysfunction may be involved in ASD [30]. In this report, plasma lactate determination was performed in a restricted sample of 69 patients with ASD. Twenty per cent of them displayed hyperlactatemia and 7% fulfilled the criteria for a disorder of oxidative phosphorylation (OXPHOS) [30]. This initial study has limitations as the autistic clinical phenotype was not well defined. More recently, a retrospective study of 25 patients with a primary diagnosis of nonsyndromic autism who were further determined to have enzyme- or mutation- defined OXPHOS deficiency showed that 96% of these patients actually exhibited clinical symptoms differentiating them from idiopathic autism [31]. These results suggest that careful clinical and biochemical reappraisal is warranted in patients with ASD initially considered as nonsyndromic, but also confirm that ASD patients with OXPHOS dysfunction often exhibit other symptoms such as microcephaly, marked motor delay, sensorineural deafness, oculomotor abnormalities, exercise intolerance, cardiomyopathy or renal tubular dysfunction. Accordingly, we decided not to screen for hyperlactatemia in our nonsyndromic ASD population. Furthermore, normal plasma lactic acid concentrations do not exclude the presence of a mitochondrial disorder [32], [33]. Recent reports emphasize a putative association between mitochondrial dysfunction and autism (for review see [34]) and highlight the role of brain energy metabolism dysfunction as an important target for future studies [35]. In ASD, as already emphasized for several neurodegenerative disorders [36], [37], [38], [39], mitochondrial dysfunction could be regarded as a secondary defect in brain energy metabolism.

They state that mitochondirial dysfunction is “secondary”, which I believe means they don’t see it as causative for autism. This is made more clear below:

The data reported here strongly support the view already stressed by others [20], [44] that systematic metabolic investigations are not contributive to the etiology of nonsyndromic ASD. On the other hand, early diagnosis and proper therapeutic intervention for some metabolic disorders causing nonsyndromic ASD may significantly improve the long-term cognitive and behavioral outcomes [20]. Therefore, a careful clinical evaluation, with cautious reappraisal of clinical signs, is crucial. Such a medical practice appears more reasonable than a costly systematic workup. Finally, a large population based prospective study assessing the benefits of routine metabolic screening in nonsyndromic ASD would be of great interest in the future to confirm our results.

They suggest that while discovering underlying metabolic disorders/dysfunctions can lead to beneficial treatments for those affected, they don’t shed light on the cause (etiology) of autism.

“Therefore, a careful clinical evaluation, with cautious reappraisal of clinical signs, is crucial. Such a medical practice appears more reasonable than a costly systematic workup. ”

I find the above very interesting. I’m sure that many in the alternative medical community would read that as approval of their less stringent diagnostic practices. To me it plays more into the idea that diagnosis of metabolic disorders can be as much an art as a science at times. To me, this means seeking out “one skilled in the art” (i.e. a metabolic specialist), rather than, say, a DAN doctor.

Here are a most of the references cited in the paragraphs above.

[30]Oliveira G, Diogo L, Grazina M, Garcia P, Ataide A, et al. (2005) Mitochondrial dysfunction in autism spectrum disorders: a population-based study. Dev Med Child Neurol 47: 185–189. Find this article online
[31]Weissman JR, Kelley RI, Bauman ML, Cohen BH, Murray KF, et al. (2008) Mitochondrial disease in autism spectrum disorder patients: a cohort analysis. PLoS One 3: e3815. Find this article online
[32]Debray FG, Lambert M, Chevalier I, Robitaille Y, Decarie JC, et al. (2007) Long-term outcome and clinical spectrum of 73 pediatric patients with mitochondrial diseases. Pediatrics 119: 722–733. Find this article online
[33]Touati G, Rigal O, Lombes A, Frachon P, Giraud M, et al. (1997) In vivo functional investigations of lactic acid in patients with respiratory chain disorders. Arch Dis Child 76: 16–21. Find this article online
[34]Rossignol DA, Frye RE (2011) Mitochondrial dysfunction in autism spectrum disorders: a systematic review and meta-analysis. Mol Psychiatry.
[35]Haas RH (2010) Autism and mitochondrial disease. Dev Disabil Res Rev 16: 144–153. Find this article online
[36]Moreira PI, Zhu X, Wang X, Lee HG, Nunomura A, et al. (2010) Mitochondria: a therapeutic target in neurodegeneration. Biochim Biophys Acta 1802: 212-220. pp. 212–220.
[37]Casari G, De Fusco M, Ciarmatori S, Zeviani M, Mora M, et al. (1998) Spastic paraplegia and OXPHOS impairment caused by mutations in paraplegin, a nuclear-encoded mitochondrial metalloprotease. Cell 93: 973–983. Find this article online
[38]Damiano M, Galvan L, Deglon N, Brouillet E (2010) Mitochondria in Huntington’s disease. Biochim Biophys Acta 1802: 52-61. pp. 52–61.
Mochel F, Haller RG (2011) Energy deficit in Huntington disease: why it matters. J Clin Invest 121: 493–499. Find this article online
[39] Mochel F, Haller RG (2011) Energy deficit in Huntington disease: why it matters. J Clin Invest 121: 493–499

United States politicians on the campaign trail take up vaccine injury…again

15 Sep

In the last US presidential campaign, prominent candidates made statements about vaccine injury. Specifically autism.

Senator McCain made comments about autism and mercury:

“At a town hall meeting Friday in Texas, Sen. John McCain, R-Ariz., declared that “there’s strong evidence” that thimerosal, a mercury-based preservative that was once in many childhood vaccines, is responsible for the increased diagnoses of autism in the U.S. — a position in stark contrast with the view of the medical establishment.”

Barak Obama made a comment which, without the video to put it in context, seemed to lend support:

“We’ve seen just a skyrocketing autism rate. Some people are suspicious that it’s connected to the vaccines. This person included. The science right now is inconclusive, but we have to research it.” –Barack Obama, Pennsylvania Rally, April 21, 2008.

(“this person” was a person in the audience)

This time it is Michele Bachman. She has made the claim that gardasil (the vaccine against HPV, given to teenage and older women), resulted in “mental retardation”.

Candidate Rick Perry responded to the baseless accusation by Ms. Bachman:

You heard the same arguments about giving our children protections from some of the childhood diseases, and they were, autism was part of that. Now we’ve subsequently found out that was generated and not true.”

As a side note: the Pharyngula blog is reporting that Prof. Steven Miles has put up a $1,000 challenge for proof of Ms. Bachman’s statement.

I am offering $1000 for the name and medical records release of the person who Michele Bachmann says became mentally retarded as a consequence of the HPV. Please share this message.

Ms. Bachman’s comments were just plain wrong. She’d do well to apologize and move on. My own biased suggestion would be for her to move on into discussing some subjects involving the betterment of life for the disabled. This isn’t exactly a big plank in the republican platform but, hey, isn’t this about showing leadership?

Save the Date! ASAN 5-Year Anniversary Celebration

14 Sep

The Autistic Self Advocacy Network is turning five. Unlike most five-year-olds, they are throwing their own party. At the National Press Club, no less:

Save the Date!

The Autistic Self Advocacy Network’s
5 Year Anniversary Celebration

Wednesday, November 16, 2011
6:30 – 9:00 pm

Join us for a special celebration and fundraising event at
The National Press Club in Washington, D.C.

Cocktails, hors d’oeuvres and dessert will be served.

Keynote Speaker:

Dr. Alexa Posny,
Assistant Secretary for
Special Education and Rehabilitative Services

Honoree:

Ms. Nancy Thaler,
Executive Director,
National Association of State Directors
of Developmental Disability Services

Proceeds will support our advocacy work and programs for the coming year and allow us to continue working to empower disabled people across the country.

www.autisticadvocacy.org

Autism spectrum disorders (ASD) in Africa: a perspective

14 Sep

A recent article takes a look at autism in Africa. The author is from Nigeria, the journal from South Africa. Autism spectrum disorders (ASD) in Africa: a perspective looks as though it doesn’t go into great depth “the situation in Africa on aspects of ASD remain unclear”. An that is a major point: there isn’t much data to work from. Autism is just not studied globally yet.

Here is the abstract:

Abstract

BACKGROUND:

The universal occurrence of autism spectrum disorders (ASD) was queried about twenty-six years ago. It was thought to occur only in western industrialized countries with high technological development. Over the last decade, knowledge about ASD and its prevalence has been documented as being on the rise in different regions of the world, with most literature coming from the western world – the situation in Africa on aspects of ASD remain unclear.

METHODS:

Literature cited in Pubmed over the last decade on aspects of epidemiology, diagnosis, aetiology and knowledge of ASD in the African context were assessed. Keywords: autism, diagnosis, aetiology, knowledge and Africa were variously combined in the literature search.

RESULTS:

No study specifically addressed the epidemiology of ASD in Africa. One of the two studies that were relevant addressed epidemiology of ASD in Arab countries, though included two Northern African countries. A higher proportion of non-verbal cases of ASD compared to verbal cases was documented in literature coming from Africa. Associated co-morbid disorders included intellectual disability, epilepsy and oculo-cutaneous albinism. Aetiological factors postulated included post-encephalitic infection, genetic and auto-immune factors, and vitamin D deficiency. Knowledge about ASD in Africa was noted to be low.

CONCLUSION:

There is a need for epidemiological studies in Africa to define the magnitude of the problem of ASD and the characteristics of children affected by ASD in this region. This would help in planning and might be helpful in answering the question of aetiology of ASD. Policy making needs to be directed at issues of childhood developmental disorders in Africa.

One thing I would point out: autism isn’t really well understood in the developed/western world yet either. It’s just better reserched and understood. Someday we will look back and be amazed at questions we misunderstood or didn’t even know to ask. That is, someday if we put the effort in now to keep a high level of research focus on autism.

Which leads me to point out (and go off topic): In the U.S. the Combating Autism Reauthorization Act is being considered by congress. Senate Bill 1094 is 163rd in line for consideration. That doesn’t sound so good with the possibility that the legislature will recess without considering the bill. At the very least, the Combating Autism Act is set to sunset in 2 weeks. It seems highly unlikely that the reauthorization will be approved (if at all) in time.

Lessons from the MMR scare

13 Sep

Fiona Godlee, editor of the British Medical Journal (BMJ), recently presented to the National Institutes of Health on the “Lessons from the MMR scare”.

The talk is now online at the NIH site (no embed link is obvious to me at present).

The talk gives a nice hour long discussion of the issues surrounding Andrew Wakefield’s research efforts in autism and the MMR vaccine.

One of the points Ms. Godlee goes into is a good example of the sort of falsification that is prevalent in the Lancet paper. She discusses the fact that 11 of the 12 families thought that the MMR vaccine was linked to developmental regression. The paper reported that only 8 families felt there was a link. Earlier drafts of that more families thought there was a link, but those families reporting long times to onset after MMR were removed.

Another discrepancy to emerge during the GMC hearing concerned the number of families who blamed MMR. The paper said that eight (1, 2, 3, 4, 6, 7, 8, and 11) linked developmental issues with the vaccine. But the total in the records was actually 11. The parents of child 5, 9, and 12 were also noted at the hospital as blaming the vaccine, but their stated beliefs were omitted from the journal.

It is one of those very simple arguments that shows misrepresentation of the facts.

How did the misconduct become exposed? She discusses how 4 factors played into why this case of fraud was exposed:

1) A skilled investigative reporter was put on the case (Brian Deer)
2) the freedom of information act was enacted in 2000 (allowed access to information)
3) Mr. Wakefield’s decision to sue Brian Deer. (This forced Brian Deer to do further digging to defend himself.)
4) The GMC’s decision to take up the case. (This placed much data in the public domain)

It has been discussed a number of times previously that Mr. Deer gained access to the medical records after the lawsuit was started, and that the lawsuit was withdrawn literally as he was reviewing the documents.

She discusses the backlash that the BMJ has received with negative comments. Also some very strange misrepresentations. For example, an article in “Natural News” is incorrect (not surprising to those familiar with the site) in stating “BMJ admits that fraud claim against Dr. Andrew Wakefield has no basis in fact”.

She discusses the claim that Andrew Wakefield’s work has been replicated. It is a common argument that comes up. And, it isn’t true. There are attempts to replicate which his work which failed to do so.

No legal challenge from Mr. Wakefield and no complaints to the press complaints commission. Interestingly (to me at least) is that he declined an offer from the BMJ to write a reply.

I find it intersting that she couldn’t even recall Jim Carrey’s name (and had even less recall of Jenny McCarthy’s name).

She points out that the GMC was not really the proper forum to investigate the research fraud. But, at present the UK has no office of research integrity.

She poses the question of what could have been done to prevent this. She suggests that greater oversight needs to be in place. She also points out that co-authors need to take a more active role in oversight of data reporting. Better peer review is needed. But when an author lies, it is difficult for an editor to discover it. There should be some level of penalty for research fraud–as in, why isn’t this a criminal act?

She calls for better research on vaccine safety research. Also for better autism research.

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