Archive by Author

Epilepsy Foundation Touching Lives fundraiser

15 Dec

Below is a letter from the Epilepsy Foundation discussing their Fundraiser.

I know you are extra special. You have compassion for people with epilepsy. You’ve shown it through your support of the Epilepy Foundation. Thank you so much.

I want to tell you about another way you can touch even more lives this holiday season. You can make a donation in honor or memory of a loved one.

It’s a gift you’ll feel good about giving. It’s a gift that will help us find a cure…And until that day, make living with epilepsy a little bit easier.

We have several beautiful cards for you to choose from that we can send to your honoree or the person you choose. You can see some of the cards below.

20111214-221326.jpg

Click here to make a gift in honor of a loved one.

It will make the perfect gift for someone special. It will touch so many lives and hearts.

Thank you and best wishes throughout this season of joy and giving.

Warm Regards,

Ellen L. Woods
Vice President, Development

Advocates Push Federal Law Allowing Same-Sex Parents to Adopt

15 Dec

In a recent article, Advocates Push Federal Law Allowing Same-Sex Parents to Adopt

I found this section particularly interesting:

About 2 million children in the United States are being raised by LGBT families, according to the recent report. The study said 3 percent of foster children nationwide live with LGBT parents.

Gay and lesbian parents are raising 32 percent of foster-care children with special needs, Hecht-McGowan said.

32% of special needs kids in foster care are being raised by gay and lesbian parents.

Autism Frequently Missed in Children With Epilepsy

14 Dec

A recent study presented at the American Epilepsy Society annual meeting suggests that developmental delay in general and autism in specific might be undetected in a large fraction of children with epilepsy.

In Autism Frequently Missed in Children With Epilepsy, Allison Shelley of Medscape writes:

In a study presented here, the investigators tracked children younger than 5 years seen at an epilepsy monitoring unit and a ketogenic diet clinic for about half a year. They asked parents of the 44 children to complete the Ages and Stages Questionnaire, as well as an autism screening tool.

Most of the children (77%) screened positive for developmental delay; of these participants, a strong proportion (36%) had autism.

More than a third of patients had not been previously diagnosed as having developmental delay or autism and were referred for confirmatory evaluation.

Here is a video from the American Epilepsy Society discussing this:

The study is relatively small and is, to my knowledge, as yet unpublished. But it does present a potentially important idea that people with epilepsy should be screened for autism.

Ignorance adds to stigma, again.

12 Dec

The Los Angeles Times has started a new series on autism. The opening piece is Autism boom: an epidemic of disease or of discovery? It’s a tough piece to write: how to discuss the fact that a big factor behind the rise in autism diagnoses is sociological (which is accurate and good to get out there) without fueling the “parents just want to milk the system” mindset (which is inaccurate and stigmatizing).

I wanted to write about the piece but, instead, a comment has caught my attention. Sue Basko who, by her comments, is rather ignorant about autism and the services/supports available, left the comment below:

Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare.

The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this “epidemic.” Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.

When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.

I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.

Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism.

In a recent comment on her Facebook page, she writes:

THIS MAy not be a big deal for others, but my blog got 800+ hits in the past 16 hours. It means so much to me that people read what I write.

Given this, I am bringing what she writes to a larger audience: the readership of Left Brain/Right Brain. In doing so I am breaking a good rule: don’t blog (or tweet) while angry.

I find it ironic, to say the least, that someone who is actively contributing to the stigma of autism is using this as part of her argument.

Somehow I have missed out on the cash cow that my kid presents to me. I am not able to “live off the payments” that are offered. Heck, I’ve never even been offered SSI (Social Security’s “supplemental Security Income”).

Ms. Basko would be well advised to re-read the article she commented upon. Here’s one segment I would highlight:

Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.

Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.

The rise in autism diagnoses in California has occurred in wealthy areas (for example, West Hollywood), urban areas, and less so in racial/ethnic minorities and people in rural areas. Hispanic immigrants, legal or not, have actually avoided seeking out services due to Proposition 187.

ASAN Seeks Autistic People as Federal Grant Reviewers

12 Dec

The Autistic Self Advocacy Network (ASAN) is looking for Autistics to assist in reviewing grant applications for federally funded research. This follows their Symposium on Ethical, Legal, and Social Implications of Autism Research

The announcement is below:

The Autistic Self Advocacy Network’s Symposium on Ethical, Legal, and Social Implications of Autism Research, funded by the Administration on Developmental Disabilities, was a huge success. The symposium video will be made available in the coming weeks with captioning. We’d like to thank our co-sponsors, the Harvard Law Project on Disability, the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics and the UNESCO Bioethics Chair, American Unit for helping to make this event possible.

Our conversation was broad and wide ranging. Perhaps the most interesting characteristic of the Symposium was the people that came to the table. Our participants – split evenly between self-advocates and researchers – identified a wide number of ways to help advance the inclusion of Autistic people ourselves in the research process. From Community Based Participatory Research processes to greater inclusion of Autistic adults on IRBs and Grant Review panels, a number of actionable next steps emerged from our discussion. ASAN will be following up on this through a series of targeted policy briefs and collaboration with our federal partners to make those ideas reality.

One of the key issues to emerge out of our conversation in Cambridge was the inclusion of Autistic people and other people with disabilities as grant reviewers on federally funded grants. In response to our symposium, several key federal funders have offered to work with ASAN to identify Autistic adults and other people with disabilities interested in serving on forthcoming federal grant review panels.

As a result, we’re issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume. Resumes can be sent to info@autisticadvocacy.org with the Subject line GRANT REVIEW.

Is Mark Geier finished as an expert witness in the vaccine court?

10 Dec

Dr. Mark Geier is a name which has come up frequently in the autism/vaccine discussion, and in alternative medical therapies (such as Lupron) of autism. Dr. Geier has been an expert witness for petitioners in the vaccine court for about two decades. He has been criticized by the court for almost as long. Dr. Geier has recently had his medical license suspended.

Mark Geier and his son David have worked for the Petitioners Steering Committee (the lawyers handling the plaintiffs’ cases in the Autism Omnibus). But their relationship seems a bit strained. They filed suit asking for $600,000 in payment. The Geiers have had previous requests for fees drastically reduced or denied, including one where they expected the Court to cover $20,000 as their costs (and hourly rate, including while sitting on planes) to attend conferences in Italy and France. The court called this “a complete abdication of billing judgment.”

In a recent court decision, Dr. Geier has been criticized again. Thoroughly. But this very strong statement from the special master makes it clear that Dr. Geier’s future as an expert witness or consultant will be very restricted:

I will not likely be inclined to compensate attorneys in any future opinions for consultant work performed by Mark Geier after the publication date of this opinion.

The decision focused on expenses the Petitioner’s Steering Committee (PSC) charged in the Omnibus Autism Proceeding for Mark Geier, his son David Geier and their colleagues. Much of these charges resulted from a study they published, Thimerosal exposure in infants and neurodevelopmental disorders: An assessment of computerized medical records in the Vaccine Safety Datalink. Epiwonk (a former professional epidemiologist for the CDC) discussed the paper in New Study on Thimerosal and Neurodevelopmental Disorders: I. Scientific Fraud or Just Playing with Data?

The study noted in the acknowledgements that the study was funded by the PSC:

This study received funding from the Autism Petitioners’ Steering Committee of the no-fault National Vaccine Injury Compensation Program (NVICP).

The Geier/Young team billed the PSC, and the PSC billed the vaccine injury trust fund vaccine court. As you can read, they just weren’t successful.

The Geiers tried some fancy footwork to get the Young-Geier study paid for by our tax dollars.  Including an apparent attempt to get the non-doctor David Geier compensated by charging work at their company, “medcon”, rather than naming David Geier as the recipient.

Bottom line–the PSC asked for $440k to compensate the people who worked on the Young-Geier study.  They got $33k, and a strong statement that Geier will be unlikely to be compensated by the program in the future.

If you are curious about the value of the study itself, there is a whole section of the decision titled “The Young-Geier article itself did not add any value to the petitioners’ causation case.”

In their application, the PSC sought a total of $7,202,653 for interim fees and costs. with $1.35M for costs, primarily expert witness costs (note that the Geiers did not actually serve as witnesses, so they are part of the “costs”)

Out of $1,350,000 in costs one might ask how much of this was for the Young-Geier study?

As noted above, this Decision on Remand concerns the PSC’s claim for compensation for amounts paid, or to be paid, to four experts/consultants: Dr. Mark Geier, David Geier, Dr. Heather Young and Dr. Robert Hirsch. Conceptually, this claim can be broken into two parts. First, petitioners seek $447,004.02 to compensate all four of those individuals for work on an original medical article that was published in 2008. Second, petitioners seek $197,823.94 more for miscellaneous additional services provided by Mark Geier and David Geier between 2003 and 2008.

$447K. One third of the total. A large number of expert witnesses actually produced reports and testified, but the Geier team was to receive 1/3 of the total. If you take a high rate of $500/hour, this works out to 22 full time man weeks. For a study where they didn’t have to collect data, just analyze it. I find it difficult to believe this study took 22 weeks (or more, as the $500/hour is a very high estimate).

The Geiers were not slated to get the majority of the money. Heather Young, an associate professor at George Washington University, was to get the lion’s share. About a quarter of a million dollars:

Petitioners would receive $248,636.91 to compensate Dr. Young, $157,407.11 for the two Geiers, and $41,000 for Dr. Hirsch

Unless GWU pays their associate professors much more than is common, this represents well over one year’s pay for Prof. Young.

Thankfully HHS (respondent) argued against this request:

Respondent argues strenuously, in response, that it would be wholly unreasonable for the Program to provide compensation to these individuals for their efforts concerning the article.

Is it reasonable to charge for studies created for litigation? Are they of high value to the case?

I note that the Supreme Court has expressed the view that medical studies produced expressly for litigation purposes should be viewed with skepticism.

and

The views of these courts, then, reinforce the concern that if a lawyer involved in a Vaccine Act case chooses specific experts and pays them to carry out a study, the potential is great for bias in the study, toward the outcome that would assist the clients of the lawyer paying for the study. Thus, it is arguable that, as the respondent contends, it would be poor public policy, in general, for special masters to award public funds for such original studies.

and

Rather, I conclude that under all the specific circumstances of this case, it would not be reasonable for me to compensate the named individuals for the production of this particular article.

The PSC argued that the paper was not “litigation driven”.  The SM didn’t accept the argument:

As to the former point, I am simply not persuaded by the suggestion that the article was not litigation-driven….The mere fact that the PSC lawyers contributed or promised monetary support for another article co-authored by the Geiers, concerning the topic of whether thimerosal-containing vaccines can cause autism, is itself strong evidence that the article was litigation-driven.

Further, the very fact that the petitioners are now seeking Vaccine Act funds for the cost of producing the article is a very strong indication that the article was litigation-driven.

If that wasn’t enough, the PSC argument backfired in another way:

If the article was produced “completely apart from [Dr. Geier’s] involvement in this [Vaccine Act] litigation,” and would have been produced even absent that litigation, that would seem to contradict the petitioners’ claim that paying the cost of producing the article was a necessary and reasonable cost of the Vaccine Act litigation.

How was the Young-Geier study used in the Omnibus? Was it persuasive? Answer: it wasn’t really used and it wasn’t persuasive.

The HHS/DOJ’s experts were critical of the Young-Geier study:

Perhaps the strongest factor leading to my result here is my conclusion that the Young-Geier article itself did not add any value to the petitioners’ causation presentation in this case. Two epidemiologic experts, both of them testifying for respondent, testified at the trial in this case concerning the merits of the Young-Geier article, and both testified that the article was deeply flawed.

Even the PSC’s own experts were not impressed by the Geiers in general:

And, very significantly, none of the petitioners’ five medical experts who testified at the trial offered any testimony in support of the validity of the Young-Geier article. It is especially striking that among petitioners’ experts was an expert who has excellent credentials in epidemiology, Dr. Sander Greenland. Dr. Greenland in fact testified negatively about the Geiers’ prior epidemiologic articles concerning the vaccine-autism controversy, describing those studies as“deficient in methodology.”

Prof. Greenland didn’t speak to the Young-Geier article directly, just their methods in other studies.  But the special master points out that this appears to be a trick on the part of the PSC to avoid having to defend the Young-Geier study on cross examination:

Yet they [the PSC] put Dr. Greenland on the witness stand in this King case on May 12, 2008 (Tr. 69-135), did not ask him about the article, and did not reveal the existence of the article to the special masters and respondent until May 16 (see fn. 6 above), thus ensuring that no one could ask Dr. Greenland about the Young-Geier article. From these circumstances, the most reasonable inference is that petitioners’ counsel deliberately intended to avoid any questioning of Dr. Greenland, their epidemiologic expert, about the Young-Geier article.

The special master concludes that the study did not add any value to the PSC’s case and “no rational hypothetical paying client” would have agreed to pay for the production of such a “flawed study”:

In short, the Young-Geier study itself was severely criticized by respondent’s experts, who articulated persuasive reasons for that criticism. In my own analysis, the Young-Geier study also appears flawed. And the other special masters who reviewed that article reached the same conclusion. Clearly, no rational “hypothetical paying client” of the PSC would have agreed to pay for the production of such a flawed study. Thus, the fact that the Young-Geier article did not add any value to the petitioners’ causation presentation in this case is a very strong reason why I should decline to compensate the PSC for the cost of producing the article.

The Special Master notes that given the long history of the Geiers in the vaccine program, it would be unreasonable to expect the program to pay for the cost of the study:

A review of prior legal opinions discussing the Geiers casts strong doubt on the reasonableness of compensating the cost of an article co-authored by them.

The Special Master then goes into detail of those decisions , with an entire section  of the decision dedicated to “Vaccine Act opinions concerning the general credibility of Dr. Geier as an expert witness” including subsections “Criticisms of Dr. Geier for offering testimony outside his area of medical specialty” and “Opinions questioning Dr. Geier’s honesty, candor, or veracity” and “Opinions declining compensation or substantially reducing compensation for Dr. Geier’s services”

If you get the time, read through those. They are highly critical. A condensed version of 20 years of highly critical comments about the actions of the Geiers in the vaccine program (mostly Mark Geier):

Criticism of the Geiers is not limited to their activities in the Vaccine Court. In “Judicial opinions outside of the Vaccine Act” they quote decisions stating “federal appellate court concluded that Dr. Geier gave erroneous testimony” and “state court found Dr. Geier’s testimony to be “unsubstantiated” and unpersuasive” and “federal court was “unimpressed with the qualifications, veracity, and bonafides” and, lastly, “federal judge stated that he was “unconvinced” that Dr. Geier was qualified to offer testimony concerning certain vaccine safety issues.”

The Special Master went into detail about previous flawed studies by the Geiers on vaccines and autism.  He also notes that the assertion that Dr. Geier is qualified as an epidemiologist is not supported:

Thus, Dr. Geier does not appear to have had any formal academic training or degrees or medical faculty experience in epidemiology, and his medical experience has been chiefly in genetics rather than epidemiology. Thus, it is unclear why he was named a “Fellow” of the American College of Epidemiology, and it is doubtful whether he should be considered an expert in epidemiology. I conclude that the petitioners have failed to shoulder their burden of demonstrating that Dr. Geier should be considered an expert in epidemiology.

and

Further, a number of judges and special masters have also examined Dr. Geier’s credentials, and have specifically concluded that Dr. Geier should not be considered an expert in epidemiology.

He awards fees, as a consultant not expert, for Mark Geier’s other efforts on the Omnibus:

Accordingly, I awarded $33,130.35 (147.246 hours times $225 per hour) for the services of Dr. Geier.

No mention of payment for David Geier or Heather Young.

The Special Master makes it clear that even this amount was grudgingly awarded. Given that *in the past* it was reasonable to hire Mark Geier as a consultant:

I note that it is not an easy judgment whether to award any funds for the services of Dr. Mark Geier in this case. On balance, I conclude that, in light of the cases awarding funds to Dr. Geier as a consultant (see p. 33 above), it was not unreasonable in this instance (several years ago) for the PSC to employ Dr. Geier for consultant services.

But, after 20 years, the vaccine program may have had enough of Mark Geier:

I will not likely be inclined to compensate attorneys in any future opinions for consultant work performed by Mark Geier after the publication date of this opinion.

(emphasis added)

If the court won’t pay his fees, the career of Mark Geier as an expert for vaccine injury cases is over. His son David is not likely to be taking his place, as he has not been considered even viable as a consultant by the special masters. As noted above, Mark Geier’s license to practice medicine has been suspended (in multiple states). David Geier was charged with practicing medicine without a license. One has to wonder if or how the Geiers will re-emerge on the autism/vaccine scene.

Michele Bachmann Loves Vaccines After All

8 Dec

Remember Michele Bachmann? Republican presidential candidate in the US? The one who raised a stir with her comments that the gardasil vaccine causes mental retardation?

Well, according to Benjy Sarlin at Talking Points Memo, she actually loves vaccines.

He writes:

Michele Bachman, who was condemned as an anti-vaccination conspiracy theorist after suggesting that Gardasil causes “mental retardation,” said Wednesday that she was in fact a big supporter of vaccines. Not only that, she thinks there are too many regulations on them.

She sees vaccines as “cures” which are a miracle and have changed the course of victory:

Bachmann told a gathering of the Republican Jewish Coalition in Washington that cures for polio and other diseases “literally changed the course of history and this was good.” Until the government got in the way, that is: “[T]he problem is that bureaucracy has risen up to such an extent that today because of the FDA and other measures we’re no longer seeing the miracle of cures that were coming forward,” she said.

Thank you, Ms. Bachmann. I don’t know if this will undo the damage you caused, but it is a good step forward.

Mother who ‘smothered baby because she feared he was autistic was insane and had postpartum depression’

7 Dec

The story is on the Daily Mail’s website: Mother who ‘smothered baby because she feared he was autistic was insane and had postpartum depression’

A mother killed a six month old out of fear that the child was autistic. She says that she feared the child “would emotionally and financially ‘ruin’ her life”. She has been declared insane and will not be prosecuted.

A mother who allegedly smothered her six month old son because she feared he had autism will not face a murder charge.

Prosecutors said they doubt if they could prove Stephanie Rochester was sane at the time of the killing.

and

An arrest warrant for the 2010 killing revealed that Rochester feared her son had autism and tried to suffocate him with a plastic bag at their home in Superior, Colorado.

When that failed she used blankets to end his life.

The arrest warrant revealed Rochester had wanted to kill herself but did not want to ‘burden’ her husband with an autistic child.

Rochester told detectives that she thought having an autistic child would emotionally and financially ‘ruin’ her life.

Lower birth weight indicates higher risk of autistic traits in discordant twin pairs

7 Dec

Twin studies have shown that there is a strong genetic component to autism. When one “identical” twin has autism, the odds are high that the other twin does as well. But, what about those cases where only one twin has autism? The pair is “discordant”.

One of the major twin studies ongoing is the “Child and Adolescent Twin Study of Sweden” (CATSS). The study is not just an autism study, as their website notes:

The aim of this study is to investigate how both genetic and environmental effects influence health and behavior in children and adolescents. In this study parents to all Swedish twins turning 9 or 12 years are asked to complete a telephone interview concerning the health and behavior of their twins. The interview screens for several different health (e.g., asthma, allergies, diabetes) and behavior (e.g., attention, social interaction) problems. Some of the families will be followed up with additional questionnaires, as well as with genotyping and clinical interviews.

By studying discordant pairs, they are able to look for other risk factors. In this case, low birth weight. They found that low birth weight confers a significant risk for autism. Three times higher risk for a discordant autism pair for low birth weights.

They conclude ” a non-genetic influence associated with birth weight may contribute to the development of ASD”

Here is the abstract:

Lower birth weight indicates higher risk of autistic traits in discordant twin pairs.
Losh M, Esserman D, Anckarsäter H, Sullivan PF, Lichtenstein P.
Source

Roxelyn and Richard Pepper Department of Communication Sciences and Disorders, Northwestern University, Evanston, IL, USA.
Abstract
BACKGROUND:

Autism spectrum disorder (ASD) is a neurodevelopmental disorder of complex etiology. Although strong evidence supports the causal role of genetic factors, environmental risk factors have also been implicated. This study used a co-twin-control design to investigate low birth weight as a risk factor for ASD.

Method
We studied a population-based sample of 3715 same-sex twin pairs participating in the Child and Adolescent Twin Study of Sweden (CATSS). ASD was assessed using a structured parent interview for screening of ASD and related developmental disorders, based on DSM-IV criteria. Birth weight was obtained from medical birth records maintained by the Swedish Medical Birth Registry.

RESULTS:

Twins lower in birth weight in ASD-discordant twin pairs (n=34) were more than three times more likely to meet criteria for ASD than heavier twins [odds ratio (OR) 3.25]. Analyses of birth weight as a continuous risk factor showed a 13% reduction in risk of ASD for every 100 g increase in birth weight (n=78). Analysis of the effect of birth weight on ASD symptoms in the entire population (most of whom did not have ASD) showed a modest association. That is, for every 100 g increase in birth weight, a 2% decrease in severity of ASD indexed by scores on the Autism – Tics, attention-deficit hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) inventory would be expected in the sample as a whole.

CONCLUSIONS:

The data were consistent with the hypothesis that low birth weight confers risk to ASD. Thus, although genetic effects are of major importance, a non-genetic influence associated with birth weight may contribute to the development of ASD.

ASAN Symposium on Ethical, Legal and Social Implications of Autism Research

2 Dec

If I were local, I’d take the day off and go to this: ASAN Symposium on Ethical, Legal and Social Implications of Autism Research. The event is December 10th, and there is more seating available now. But you have to register (it is free):

The Autistic Self Advocacy Network, in conjunction with the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, the Harvard Law Project on Disability and the UNESCO Bioethics Chair American Unit, is proud to invite you, to join us on December 10th for a Symposium on Ethical, Legal and Social Implications of Autism Research at Harvard Law School. The free event will run from 9 AM to 3 PM at the Harvard Law School campus, Hauser Hall, Room 105.

Additional seating has become available. Please keep in mind that seating is still limited. Once these seats are taken, there will be no more available. If you are unable to get a seat or cannot make it to Massachusetts, the symposium will also be webcast live. Details to follow next week.

Topics covered will include prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals and much more.

This symposium will serve a unique role in shedding light on ethics and values issues within the autism research community. By bringing together self-advocate and researcher participants, we hope this will serve as a starting point for meaningful dialogue between those conducting research on autism and the community of Autistic adults and youth. Confirmed participants include Administration on Developmental Disabilities Commissioner Sharon Lewis, ASAN President and IACC Public Member Ari Ne’eman, National Institute on Child Health and Human Developmental Director Alan Guttmacher, Harvard Law Professor Michael Stein, Paula Durbin-Westby, Emily Titon, Liz Pellicano, David Rose and many more.

This event is open to the general public without charge and is made possible by a grant from the Administration on Developmental Disabilities.
Get more information
Register Now!
I can’t make it
Please join us as we begin this exciting conversation. Space is limited, so please RSVP soon.

Sincerely,

The Autistic Self Advocacy Network

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