More on the Stark Threat to Our Community

9 Feb

Below is an action alert from The Arc and United Cerebral Palsy in California. There is another hearing to discuss budget cuts for services for the disabled in California. That meeting is tomorrow. Now is a good time to act. Call. If you can, attend the hearing.

If you don’t know who to call, the Arc and UCP make it easy to find out:

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

This is local to California, but there are likely similar decisions being made in your country, your state. Find out how to act.

More on the Stark Threat to Our Community
Action Alert from
The Arc and United Cerebral Palsy in California

Dear Friends,

The stark threat to the existence of the Lanterman Act system of supports and services for people with developmental disabilities is becoming clearer.

I hope you’re planning on coming to Sacramento tomorrow (Thursday) to tell the Legislature that Governor Brown’s proposed cut to our system is just too big. And I hope that you plan to call your local state senator and assembly member today with the same message, if you haven’t called them yet.

If those are your plans, here’s some information that might help you decide what to say to them. If not, I hope this information will convince you to at least make the calls today.

Our friends at Keeping the Lanterman Promise have posted some simple figures showing examples of what the governor’s proposed $750 million cut would have to mean to real services. They helped me wrap my mind around how crushing the cuts would have to be to reach that total. Here they are: http://keepingthelantermanpromise.net/inform/governor-browns-2011-budget-proposal-what-every-family-member-needs-to-know

And just in case anyone thinks we’re just being alarmist, look at the Brown administration’s own proposed bill spelling out how they want to make a lot of these cuts: http://www.dds.ca.gov/Budget/Docs/201112_620RCPOSStandards.pdf

The first time you read it, you can skip the soothing words in the paragraph that begins “(a).” After you read on and see what the bill would really do, you can reach your own conclusion about whether the Lanterman Act would still exist in anything other than name.

When you get down to “(b),” you’ll see that the Brown administration wants the Legislature to commit itself to “standards” that limit “the type, scope, amount, duration, location, and intensity of services and support purchased by regional centers for consumers and their families.” The “standards” could even “prohibit the purchase of specified services” — whether the consumer needs them or not.

These arbitrary “standards” would turn the Lanterman Act on its head, taking the decision-making away from the people with disabilities, their families, and the rest of their IPP/IFSP teams.

So, if you can, please come to Sacramento tomorrow to tell the Senate budget subcommittee what you think of these cuts. We need to fill not just the room but the Capitol building, like we did for the Assembly hearing last week. The hearing starts at 9:30 a.m. or later in Room 4203. The Assembly budget subcommittee, which held last week’s hearing, may be voting on the cuts later in the morning across the hall in Room 4202.

And whether or not you can come to Sacramento, please call your local state senator and assembly member today. Tell them your address, why you care, and what you think about these cuts. Call their Sacramento offices unless you already know someone in one of their local offices. And whoever you talk to, save their names so you know who to call next time. Please believe me, there will be a next time.

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

And finally, when you testify to the subcommittee or talk to your legislators’ staff, be sure to mention that you’re a registered voter — if you are. If you’re not, it’s time to register. Go to: http://www.sos.ca.gov/elections/elections_vr.htm

Thank you for your advocacy.

Greg

P.S. Your probably noticed a new banner at the top of this Action Alert. That’s because United Cerebral Palsy and The Arc have joined forces to strengthen our community’s voice in California public policy struggles. Just in time, don’t you think?

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California
1225 Eighth Street, Suite 350
Sacramento, CA 95814
(916) 552-6619 x16

Prof. Paul Shattuck discussing his paper on lack of services for young autistic adults

9 Feb

I recently posted the press release for Prof. Shattuck’s latest paper. At the time, the video was only on his university’s webpage. Now that the video has been posted to YouTube, I can embed it and you can hear Prof. Shattuck telling you about the important points himself:

I apologize that there do not appear to be an option for subtitles.

GI and autism studies ‘none of these trials appeared to be of high quality’

8 Feb

A new paper is due out soon looking at the available literature on GI and autism.

The significance of the association between many gastrointestinal (GI) pathologies and autism has yet to be discovered. The aim of the present study was to review available evidence documenting any link between autism and GI histopathology in children

I’ve only got the abstract to go by but even that is fairly damning.

Eight studies have reported the histopathological features of the GI tract in children with autism and fulfilled inclusion criteria. In general, none of these trials appeared to be of high quality. Apart from intestinal lymphonodular hyperplasia, the majority of these findings were not consistent….GI pathological findings in children with autism have been inconsistent. The present available evidence does not support or refute a link between GI histopathology and autism in children. The significance of intestinal lymphonodular hyperplasia in these children is unknown.

I’m hoping to get the full paper soon. It would be interesting to know what these eight studies were.

Update

Here’s the eight papers of low quality:

Furlano RI, Anthony A, Day R, et al. Colonic CD8 and gamma delta Tcell
infiltration with epithelial damage in children with autism. J Pediatr
2001;138:366–72.

Wakefield AJ, Anthony A, Murch SH, et al. Enterocolitis in children
with developmental disorders. Am J Gastroenterol 2000;95:2285–95.

Torrente F, Ashwood P, Day R, et al. Small intestinal enteropathy with
epithelial IgG and complement deposition in children with regressive
autism. Mol Psychiatry 2002;7:375–82. 34.

Ashwood P, Anthony A, Pellicer AA, et al. Intestinal lymphocyte
populations in children with regressive autism: evidence for extensive
mucosal immunopathology. J Clin Immunol 2003;23:504–17.

Ashwood P, Anthony A, Torrente F, et al. Spontaneous mucosal
lymphocyte cytokine profiles in children with autism and gastrointestinal
symptoms: mucosal immune activation and reduced counter regulatory
interleukin-10. J Clin Immunol 2004;24:664–73.

Wakefield AJ, Ashwood P, Limb K, et al. The significance of ileocolonic
lymphoid nodular hyperplasia in children with autistic spectrum
disorder. Eur J Gastroenterol Hepatol 2005;17:827–36.

Torrente F, Anthony A, Heuschkel RB, et al. Focal-enhanced gastritis in
regressive autism with features distinct from Crohn’s and Helicobacter
pylori gastritis. Am J Gastroenterol 2004;99:598–605.

14. DeFelice ML, Ruchelli ED, Markowitz JE, et al. Intestinal cytokines in
children with pervasive developmental disorders. Am J Gastroenterol
2003;98:1777–82.

No surprises there.

Recent autism prevalence studies point to variability in methodology and bias

8 Feb

In Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity , the authors look at ASD prevalence by country and ethnicity. They hypothesize that “methodological factors, socioeconomic variables, and bias” play a role in the variability in autism prevalence.

The disparities by geography and by ethnicity within the data reported within the U.S. has been a big concern of mine for some time. Clearly there is not an obvious difference between, say, New Jersey (with an estimated prevalence of 10.6/1,000) and Alabama (with an estimated prevalence of 6/1,000) to account for the large difference in estimated prevalence.

Background
The prevalence of autism spectrum disorders (ASD) is generally somewhat lower in countries outside of North America and Europe. While there are culture-specific patterns of social cognitive processing, the influence of such patterns upon ASD prevalence has yet to be fully explored.
Methods
A comprehensive literature search for original articles reporting ASD prevalence was undertaken. Data across studies were compared with a particular focus on variables of geographic residence and ethnicity.
Results
ASD prevalence varies across countries in a manner that appears to suggest that the greatest influence is due to methodological variables. The nature of a potential influence of culture-specific patterns of cognitive processing upon prevalence remains unknown. The available little data concerning the association between ethnicity and prevalence are limited to studies within the United States (US) showing differences in children of Hispanic descent relative to Whites, a finding for which a definitive explanation is lacking.
Conclusions
Available evidence suggests that methodological factors are largely responsible for differences in ASD prevalence across studies. The much discussed increase in prevalence in ASD has been observed worldwide, suggesting that the refinement of diagnostic methodology and/or broadening diagnostic concept is not limited to Western countries. Within individual countries, only in the US has the influence of ethnicity upon ASD prevalence been examined in depth. In the US, children of Hispanic descent have the lowest prevalence of ASD, while Whites tend to have the highest prevalence of ASD. Hypothesized etiological factors for such prevalence differences include methodological factors, socioeconomic variables, and bias.

In Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006. African American (non Hispanic Black) students are less likely than Non Hispanic White students to be identified with “less severe” ASD’s. This even after controlling for socioeconomic status.

Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006.

Jarquin VG, Wiggins LD, Schieve LA, Van Naarden-Braun K.

From the Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
Abstract

OBJECTIVE: Past research indicates that non-Hispanic black (NHB) children are less likely than non-Hispanic white (NHW) children to have an autism spectrum disorder (ASD) diagnosis, even if they seem to meet criteria for the disorder. This study examined differences in community identification of ASDs between NHB and NHW children identified by a population-based surveillance system.

METHODS: Participants were identified as an ASD surveillance case by the Metropolitan Atlanta Developmental Disabilities Surveillance Program in surveillance years 2000, 2002, 2004, and 2006. Health and education records were abstracted and reviewed to determine ASD surveillance case status; community identification was defined by a documented ASD diagnosis, special education eligibility, and behaviors noted in records. Children were placed in 1 of 5 mutually exclusive categories on the basis of ASD specificity.

RESULTS: Total ASD prevalence was higher for NHW than NHB children, but NHB children were more likely than NHW children to have autistic disorder and autism eligibility at a public school documented in records. NHB children were less likely than NHW children to have pervasive developmental disorder-not otherwise specified and Asperger’s disorder documented in records, even after controlling for socioeconomic status. NHB children were more likely than NHW children to have co-occurring intellectual disability.

CONCLUSION: NHB children were less likely than NHW children to have been identified with less severe ASDs, which might have prevented or delayed intervention services that would have catered to their needs. This study illustrates the need for continued professional education, particularly concerning milder ASDs in minority groups.

As a society, we have decided that autistic students often need educational supports distinct from those of children with other disabilities. Clearly if we are to serve our students appropriately, we should be accurately identifying each student’s disability (where they exist). The fact that we are not uniform in identifying autistic students indicates that we have far to go in this regard.

Arc major events this week: cuts in spending levels target disability programs

8 Feb

From this week’s “Capital Insider” email from The Arc and United Cerebral Palsy. The US Federal government is preparing the next year’s budget and cuts are on the way. The fewer people who contact their representatives, the deeper the cuts will be for their communities.

FY 2011 Appropriations – House Budget Committee announces spending levels; Targets for disability programs are more than 15% below current levels.

House Budget Committee Chairman Paul Ryan (R-WI) announced the overall budget allocations for the Appropriations Committee to use to set spending levels for the remainder of the FY 2011. Currently the federal government is operating under a Continuing Resolution (CR) which largely extended FY 2010 spending until March 4, 2011. Under the plan, non-security programs would be reduced by an average of 15.4% below the current funding levels. Using this amount, the House Appropriations Committee Chairman Harold Rogers (R-KY) announced the specific levels for each of the 12 Appropriations Subcommittees. The Labor, Health Human Services and Education Appropriations Subcommittee will need to produce a bill that is 12.7% below funding for the remainder of the year. The Transportation, Housing and Urban Development Subcommittee will have to cut funding by 26.1% to meet the target. This does not mean that the subcommittees will need to cut all programs by this amount, but that the total funding for all programs within their jurisdiction cannot be above this level. The Subcommittees will decide how much funding to cut from each program in the coming weeks.

Budget – New bill introduced to radically cut federal spending across all programs, including entitlements

Senators Bob Corker (R-TN) and Claire McCaskill (D-MO) introduced S. 245, The Commitment to American Prosperity (CAP) Act, which would cap all federal spending at a set level. This would include all entitlement spending (Social Security, Medicare, Medicaid and others) and all discretionary spending (education, housing, employment and others). The cap would be tied to a percentage of the Gross Domestic Product (GDP). GDP is the total market value of all goods and services produced by our economy. If the spending cap is exceeded, the Office of Management and Budget (OMB) would be authorized to make automatic spending cuts across all federal programs. A two-thirds vote in Congress would be needed to overturn any cuts. The amount of the cuts would be in proportion to how fast each program is growing. Unlike previous laws to control spending (Gramm Rudman Hollings, Pay As You Go) there are no protections for low income entitlement programs such as Supplemental Security Income and Medicaid. As a result, the impact of exceeding the cap would mean that the biggest cuts would come from Social Security, Medicare and Medicaid. These programs make up a significant proportion of federal spending and are growing faster than many other programs due to the aging of the population and rising per-person health care costs.

Bill Gates on the anti-vaccine movement and its connection to autism

4 Feb

Gates: Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important.

Bill Gates, telling it exactly like it is.

Podcasting to the future

4 Feb

There’s so much I wish I knew about my parents. Now that I am old enough to understand them as people rather than as “mom” and “dad”, it would be so nice to hear what they thought about as I grew up.

Through a strange series of events, I happen to have one of those small digital video recorders that I don’t really need. I gave it to my wife, who didn’t use it. At one point it hit on me. Podcasting. Not just any podcasting, podcasting to my family.

The camera is now at work. As I drive to work I sometimes hit on things I wish I could tell the future. Sometimes I find a quiet place, close the door, turn on the camera and talk. I say the things now that I may not remember later. Like how you can take as many pictures as you want, but it will never remind you of the feeling of a little hand in yours as you walk to school.

Sure, maybe the files will get lost, just like the negatives from the pictures my parents and grandparents took. Maybe. But, perhaps someday my family can see what I thought (and how I looked!) way back in 2011.

Did Andrew Wakefield keep patient medical records in his personal possession?

4 Feb

Brian Deer recently gave an interview on EconTalk. The transcript and recording are up on the site as “Deer on Autism, Vaccination, and Scientific Fraud.” I wrote about this recently for LeftBrainRightBrain and ever since I’ve had a nagging feeling that I missed something important. Something was wrong.

The sentence that was bugging me was this:

The next stage which was very unfortunate for him was that we got a court order against him requiring him to hand over to our lawyers the hospital medical records of the children.

Now I know why this bugs me. Mr. Wakefield should not have had access to the records. Take a look at the time line Brian Deer produced. The lawsuit was in 2005:

January 2005: Wakefield initiates libel lawsuits, funded by the Medical Protection Society, against the Sunday Times, Channel 4, and Brian Deer over Deer’s website, claiming that all allegations are false and defamatory

By this time, Andrew Wakefield had left the Royal Free Hospital. In fact, he had been gone for over 3 years:

October 2001: Wakefield is asked to leave the Royal Free after failing to mount a large scale controlled study to confirm or refute his claims about MMR

Which leaves me with the nagging question: How did Andrew Wakefield produce the patient records for Brian Deer?

Edited to add: Note, commenter sheldon101 in the discussion below puts forth the very plausible explanation that these records would have been available to Andrew Wakefield due to the GMC proceedings which had been initiated against him by this time.

One of the big talking points of late amongst the supporters of Andrew Wakefield is the charge that Brian Deer somehow illegally obtained copies of medical records for the children involved in the Wakefield research program. In a strange twist of fate, it appears that it is Mr. Wakefield who had them in his possession.

If true, we must ask whether this was appropriate for him to keep the records. Was it even legal? Andrew Wakefield was, at this time, not at the Royal Free Hospital. He was not the treating physician for the children at any time. Had he obtained permission from the Royal Free to take those records with him? Could the Royal Free have even granted such permission? Did he have written permission from the parents, all the parents, before taking the records?

It is a very interesting question. One which I hope Mr. Wakefield will address.

As an aside, Mr. Wakefield recently disclosed a “new” document which clears him of wrongdoing (“New document confirms that there was no fraud”. This new document was a handout from Prof. John Walker-Smith for a Wellcome Trust meeting, entitled “Enterocolitis and disintegrative disorder following MMR: a report of the first seven cases”.

Just a note. This “new” document was entered into the GMC record on Day 74 when Prof. Walker-Smith was on the stand. It didn’t clear them then.

Is this perhaps new to Mr. Wakefield? Did he miss that day at the GMC? Well, no. Andrew Wakefield refers to this document in his complaint to the Press Complaints Commission (although he gets the year wrong as ’06 instead of ’96), and he refers to it in his book, “Callous Disregard” (page 202. It’s citation 73 for that chapter).

I guess Mr. Wakefield’s definition of “new” and mine differ. As do our definitions of “ethical” and many other definitions.

How well do institutional review boards work at protecting patient’s rights?

3 Feb

One factor that struck me in the interview that Brian Deer gave recently was the fact that until rather recently, he would have had no method to obtain the ethics committee (in the US institutional review board or IRB) information on Andrew Wakefield’s research. The IRB was internal to the hospital. Without the Freedom of Information Act, he may never have gotten access to these records.

He [Andrew Wakefield] could never have expected when he was doing this research that all of a sudden his funding would be exposed to scrutiny, and also the Ethics Committee. In America called Institutional Review Boards. Bodies of doctors, scientists, others associated with medical centers which give permission for research to take place. The paperwork of that body of the Royal Free Hospital also moved into the public domain by the Freedom of Information Act. I think I was the first person ever to get hold of these kinds of papers.

Andrew Wakefield clearly didn’t take ethics approval seriously. He started his program before the ethics approvals were in place. When asked to explain why he took blood at a birthday party without ethics approval, his explanation was that he didn’t think that ethics approval was needed for people who were not NHS patients.

Q Did not that difficulty, which, as I say, appears to have been encountered by researchers other than yourself, indicate to you that there were ethical considerations about undertaking this procedure on normal children?
A Yes. The ethical considerations that I considered were clearly that there was full informed parental and child consent. As I have said, my understanding at that time was that ethics committees existed for the protection of NHS patients.

In another infamous example, David and Mark Geier received approval for research from an IRB. The IRB was had David and Mark Geier, Mrs. Geier and other interested parties as members. This would not have come to light without another Freedom of Information Act (US) request. If I recall correctly, the IRB was instituted after the research began as well.

I know that these are pretty egregious examples but I am left wondering–how many researchers consider ethical approval to be just an annoyance? Just some rubber stamp they need in order to do their research? I hope the number is small. I hope that in the day of FOIA requests, institutions and researchers take this seriously.

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?

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