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Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations

10 Jun

A very broad coalition of disability groups has sent a letter to the secretary of the U.S. Department of Health and Human Sevices, Kathleen Sebelius. Amongst those groups is the Autistic Self Advocacy Network (ASAN). A statement from ASAN in an email announcing this letter is below:

In the United States, people with disabilities often face barriers to obtaining adequate health care, and one of the major difficulties is a lack of adequately trained primary care providers. The Autistic Self Advocacy Network has signed a joint letter from cross-disability organizations calling on the U.S. Health Resources and Services Administration to include representation of the cross-disability community in designating medically underserved populations. The letter has been published on the main ASAN website

The letter in full is reproduced here:

June 9, 2010

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women’s Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV – The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: http://www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

Generation Rescue’s Vaccinated/Unvaccinated Study

8 Jun

Generation Rescue and other groups have been calling for an independent study of health outcomes comparing vaccinated and unvaccinated populations. They recently announced at the AutismOne conference that they had announced that they had procured funding for the project. They had been trying to get funding for this project from a settlement from a lawsuit against Airborne. The funds from that lawsuit have not been distributed yet. So if Generation Rescue has funding, it is from some other source.

That said, documents filed in Generation Rescue’s bid for the Airborne settlement money gives us a chance to see their proposed study design. Let me pull some of the highlights out for discussion.

The “purpose” of the grant is listed as:

Funding for study on vaccinated verse (sic) unvaccinated children to ensure the safely and well being of children worldwide.

They request $809,721 for the project.

Here is a segment of the statement of the problem to be addressed:

The U.S. and many other countries appear to be experiencing a silent pandemic with 1 in 5 children now suffering from learning disabilities, sensory deficits, and developmental delays. Neuro-developmental disorders such as autism, attention deficit hyperactivity disorder (ADHD), mental retardation, and cerebral palsy, are increasingly common, very costly, and cause lifelong disability. In 2003, the National Survey of Children’s Health reported that 0.5% (I in 200) children ages 6-17 had autism, 11.5% had learning disabilities, 8.8% had ADHD, and 6.3% had behavior problems. By 2007, the prevalence of autism in the U.S. had risen to 1 in 150 children (Rice et aI., 2007). There are a number of physical ailments that children with Childhood Neuro-developmental Disorders (NDs) typically manifest including: food allergies and eczema, general gastrointestinal distress, constipation and diarrhea, yeast overgrowth, immune system deregulation, sleep disturbances, and high levels of environmental toxins.

Why study vaccines? According to the proposal:

What could be causing these increases in NDs and disability among children in the US.? Hypotheses proposed to explain these increases have included changes in diet coupled with reduced physical activity and/or increased sedentary behavior, low birth weight, stress, medication use in pregnancy, infections and environmental toxins. Although it remains widely debated, certain routine childhood vaccinations have been suggested as contributing to the increase in neuro-developmental disorders. A recent examination of the vaccinating practice of other countries showed that the United States vaccinates children on average double that of all other first world countries; the U.S. uses 36 compared to 18 at other countries. In fact, the United States utilizes more vaccines than any other country in the world yet it has the worst mortality rate among children 5-years-old and under of the top 30 developed countries. Coincidently, some of the countries with the lowest vaccination rates also report the lowest rates of autism. It has been theorized the child’s body is overwhelmed by the combination of heavy metals (mercury, lead aluminum), live viruses (particular from their vaccines), and bacteria. These serve to slow or shut down normal biochemical pathways leading to NDi physical and mental manifestations.

I believe the “recent examination of the vaccinating practice” mentioned in the above paragraph refers to the pseudo-study Generation Rescue generated “AUTISM AND VACCINES AROUND THE WORLD: Vaccine Schedules, Autism Rates, and Under 5 Mortality”, which I discussed at length here. Generation Rescue’s “examination” was amazingly manipulative. For example, they compared a recent study on the autism rate in the U.S. for children born in 1994 to a French study from 1997 on children born between 1976 and 1985. Of course the rate in the US was higher than the rate in France. That doesn’t have anything to do with their current vaccine schedules.

What are Generation Rescue’s research credentials?

Research Programs: With some of the top scientists in the world, research is dedicated to finding more of the causative factors and treatment approaches for children with NDs.

Sort of vague there. I note that Generation Rescue decided not to tout their phone survey as an example of their research efforts. Given that in many cases the survey showed exactly the opposite of what Generation Rescue claimed in their cherry-picked publicity, this is understandable. It is still interesting that Generation Rescue seems to realize that the survey was not an asset.

That said, who are “some of the top scientists in the world”? Although not named in the proposal, it is worth checking who these “top scientists” might be. From their website, here is s Generation Rescue’s “Science Advisory Board”?

Richard Deth, Ph.D.
Professor, Department of Pharmacology, Northeastern University, Pharmaceutical Sciences

Brian Hooker, Ph.D.
Principle Consultant
Brian Hooker Consulting

Jerry Kartzinel, M.D.
Pediatric Partners of Ponte Verde

Woody R. McGinnis, M.D.
Research Coordinator, Behavioral Nutrition

I’ll leave it to you to look these gentlemen up, but they are perhaps not what most people would call “top scientists in the world”. Their papers are not very highly cited autism. Also, Generation Rescue does not appear to be using their “top scientists” for this project. Which begs the question: what is the actual project?

I. Project’s Primary Purpose, and the Need it Addresses. The goal of this project is to test the association between vaccinations and both acute and chronic neuro-developmental disorders and the efficacy of preventive health strategies. This will be achieved by conducting a retrospective cross-sectional study comparing the incidence of chronic illnesses (i.e., asthma, obesity, and eczema), neuro-developmental disorders (i.e., autism, ADHD and learning disorders), and overall health and well-being among a random sample of vaccinated and unvaccinated children (5-18 years of age). The study will obtain information from a random sample of two populations: I) children being horne-schooled and belong to the National Horne Educational Research Institute (NHERI); and, 2) children among the 30,000 unvaccinated patients being provided health care at the Homefirst Health Services in Chicago. Data will be collected from medical charts and parental reports via website health surveys and the standardized measures including the Autism Diagnostic Questionnaire.

The project proposal is vague and very brief. But let’s consider some details presented.

Not surprisingly, they chose to work with the Homefirst clinic in Chicago. Homefirst comes up quite often in discussions of proposed vaccinated/unvaccinated studies. This results largely from the fact that the director of Homefirst, Dr. Mayer Eisenstein has stated with no equivocation that there are zero autistic children who were born in his clinic and didn’t receive vaccines.

There is some confusion about how many of Homefirst’s patients are actually unvaccinated. Generation Rescue states that 30,000 are unvaccinated, but this is actually the estimate for all the children at Homefirst, vaccinated and unvaccinated:

“We have a fairly large practice. We have about 30,000 or 35,000 children that we’ve taken care of over the years, and I don’t think we have a single case of autism in children delivered by us who never received vaccines,” said Dr. Mayer Eisenstein, Homefirst’s medical director who founded the practice in 1973.

For the moment, let’s take Dr. Eisenstein at his word. What possible biases are there that they should be working around? One example–we don’t know the status of patients who have left Homefirst. Consider the parents who joined Homefirst specifically to avoid autism. After their child is diagnosed, is it conceivable that they not return to Homefirst and would find a different clinic? How do they plan to control for this? Also, one can not minimize the fact that Dr. Eisenstein has a lot riding on the reputation that he has built on the “no vaccines, no autism” slogan.

Even without this, researchers I have been in contact with have questioned how useful clinical notes such as these could be in screening, much less diagnosing, autism. From what I can see, Dr. Eisenstein’s practice does not include psychologists or other staff to test for autism, so that would not be directly included in the notes.

As an aside, the lack of autistics in his practice hasn’t stopped Dr. Eisenstein from joining the alternative treatment of autism. The Chicago Tribune discussed Dr. Eisenstein, his somewhat troubled past and his foray into treatments like Lupron in Autism doctor: Troubling record trails doctor treating autism.

NHERI is a new name to me. I have not heard much about them or their founder in autism discussions before. As an aside, one quote from the NHERI website was quite interesting–“”Whoever has the data controls the policy.” Kay Coles James, Virginia State Cabinetmember”.

The “Autism Diagnostic Questionnaire” is not a standard diagnostic instrument by any means. In fact, it is difficult to find out what it is at all. A google search for “Auism Diagnostic Questionnaire” gives only two hits (or did before I published this piece). The questionnaire appears to be this worksheet from the Autism Research Institute (DAN). I can find no information on how it is scored or how accurate it is.

One thing missing in this proposed study is actual contact with the children. “Standard measures” could mean a lot of things, but if they were planning on screening children and then testing probable cases using an ADOS and ADI-R (which one might argue would be “standard”), wouldn’t they mention that? If so, wouldn’t they mention who would perform such tests. None of the staff assigned to this study appears to be a psychologist, for example. The Staff for the project are listed as:

Project Stafjing: The Project Director will have a Masters’ degree and will be responsible foroverseeing the implementation, quality assurance and reporting of this project. Dr. A. Mawson is Professor of Pediatrics and Medicine at University of Mississippi Medical Center (UMMC), and Principal Investigator of the Mississippi Study Center for the National Children’s Study. Dr. B. Ray is President of the National Home Education Research Institute and an experienced researcher in home education. Dr. S. Buttross is Professor and Chief of the Division of Child Developmental Disorders in the Department of Pediatrics; UMMC; and Dr. W. May is Professor of Biostatistics, Department of Medicine, UMMC. The combined experience of these investigators ensures the highest standards of quality and scientific rigor.

Generation Rescue and others have often called for an “independent” research. Left unvoiced is whether “independent” means “independent of the government and pharmaceutical companies” or whether “independent” includes being free from ties to the vaccines-cause-autism groups.

The “Project Director”, Dr. Mawson, is a vocal supporter of Andrew Wakefield. Below is a letter by him you can find in multiple places on the web. Note this was not included in the research proposal:

Dear Dr. Crippen,

I would like to point out that Trisha Greenhalgh’s assessment of Andrew Wakefield’s paper was itself seriously flawed!

You do a disservice to Wakefield and the scientific community by perpetuating this myth of the flawed study and the paper that should have been “rejected” by The Lancet.

The paper is actually excellent–a superb case study that will join the ranks of other famous case studies, such as the link between rubella infection and congenital rubella syndrome (Gregg 1941) and between exposure to thalidomide and embryopathy (McBride 1956).

Greenhalgh states that the paper set out to test a hypothesis that was unstated –of a causal relationship between exposure to MMR and autism — and the design of the study was all wrong. She starts out with an incorrect assumption about the nature of the study and then continues to build on her incorrect foundational argument. Her argument may look impressive to the layman and most medical practitioners perhaps, but not to anyone who knows anything about study design, i.e. epidemiologists, and the reviewers of the paper for The Lancet, who clearly understood that the paper was not an hypothesis-testing paper but a hypothesis-generating paper. It was, in short, a case series analysis.

The paper, once understood in this light, as case series analysis, is truly remarkable, well written and brilliantly documented. It concluded by stating the hypothesis, based on parents’ reports, that the children’s’ signs and symptoms were temporally connected to MMR vaccination. Subsequent studies may not have substantiated the hypothesis; but that does not detract from or invalidate the merits of the paper as a case series and as, essentially, a hypothesis paper.

Anthony Mawson.

I’d be interested in Prof. Mawson’s take on the quality of the Wakefield Lancet article now that it has been retracted. More to the point, the fact that the study is not a true “case series” in the fact that the subject selection was highly biased. There is an “Anthony Mawson” who is a signatory on the “We Support Andy Wakefield” website.

Dr. B. Ray is the President of NHERI, the homeschooling group involved in the research and is not a medical professional nor an epidemiologist.

Dr. Susan Buttross appears to be rather reasonable. The website for a clinic she is affiliated with has links to sites like the CDC and the AAP when discussing vaccines and autism. She worked on the Mississippi Autism Task Force, whose report can be found here. That report does not discuss vaccines one way or the other. It does discuss that toxins have been “implicated”:

To further complicate the findings, there is mounting suspicion that environmental factors play a role in many cases. A genetic predisposition may cause certain individuals to be more sensitive to environmental toxins. Specific environmental toxins have not yet been identified, however, lead, mercury, and other chemical toxins have been implicated. There has been concern that certain dietary components may be a causative factor in some cases. Viral infections including rubella, measles, and CMV (cytomegalic virus) have also been linked to ASD. Illicit drugs and alcohol used by the mother during pregnancy are also known to increase the risk of a child developing ASD.

Interviews with her can be heard here, here and here.
Mississippi Autism Task Force

Dr. W. May is, I believe, Warren May. I have no real details on what connection he may have to the autism communities and to the question of vaccines.

In the introduction I pointed out that Generation Rescue was attempting to get funding for this project from the Airborne settlement. The Ariborne suit was brought by the Center for Science in the Public Interest (CSPI). CSPI was not supportive of the Generation Rescue proposal, noting that the project was vague and the sample groups likely heavily biased and that Generation Rescue was not actually conducting the study, but was managing it, building in overhead costs that might not be warranted.

I tend to agree with CSPI that the proposed study is far from being strong enough to be very convincing, one way or the other, on the question of vaccines and autism. There are some potentially reasonable people associated with this proposal. But I would think that any active involvement by Dr. Mayer Eisenstein would seriously taint the study. Further, should Dr. Mawson still support Andrew Wakefield, given Wakefield’s multiple ethical lapses and clearly biased study design, I would think that too would cast somewhat of a pall on the study.

Can an study comparing outcomes of unvaccinated and vaccinated populations be performed? Like any study, a lot depends on how definitive the answer you want is. Prometheus at the Photon in the Darkness blog has discussed the limitations of these studies and, also how they could be done. One early example is in his post “Let’s put on a Study!” Dr. David Gorski goes into the details as well in The perils and pitfalls of doing a “vaccinated versus unvaccinated” study. I agree with his conclusions:

Still, if the government caves and decides to do such a study, it is up to us in the scientific community to make sure that it’s done by no one but the best epidemiologists, in other words, that it’s a proper study that correctly controls for confounders and can answer the question being asked, not the dubious study custom designed to have the maximal chance of a false positive result, which is of course what the anti-vaccine movement really wants.

The questions raised by a vaccinated/unvaccinated study are far to important to be handled by anything less than the best researchers with access to the best data. I fear that Generation Rescue’s plan doesn’t meet either count.

Blocking immunisation

2 Jun

The rise of a public anti-vaccine movement in the US is partly to blame for blocking effective immunisations according to the AAP today.

A story on WebMD says that the

…rise of a public anti-vaccination movement that uses the Internet as well as standard media outlets to promote its position, which is “wholly unsupported by any scientific evidence” linking vaccines with autism and other childhood conditions.

is at least partly to blame for ensuring that ‘pockets’ of unimmunised children exist throughout the US. Other reasons given include problems with cost.

Read the whole story at Web MD (@WebMd).

AutismOne Generation Rescue conference expells registered attendees

2 Jun

Autism News Beat has this story in full in Listening to parents at AutismOne. AutismOne is a parent convention with a major focus on alternative medicine. To put them in perspective, Jenny McCarthy is a frequent keynote speaker and Andrew Wakefield was honored by AutismOne last year after it was revealed that his study was possibly tainted by misreporting of results.

If you recall, AutismNewsBeat was expelled from a previous AutismOne conference. He had just asked, respectfully, an important question of Hannah Poling’s mother (Hannah Poling is the child whose case before the vaccine court was conceded on the basis of vaccines aggravating an underlying mitochondrial disorder). To my knowledge, AutismNewsBeat has no been given a clear reason for the expulsion.

A filmmaker/Journalist was present at this year’s AutismOne. Lars Ullberg had applied for press credentials and was denied. AutismOne responded to this request stating:

Autism One is not prepared to offer press passes to you or your crew. Although you and each of your crew members may pay the registration fee as regular attendees, subject to the usual terms of attendance, neither you nor your crew members are permitted to conduct any videography, photography, audio recording, or press interviews; furthermore neither you nor your crew members are permitted to quote attendees, presenters, exhibitors, volunteers, or staff in any manner that will be quoted, “on the record,” or used for public or private media or instructional purposes. Additionally, you and your crew members must identify yourselves accurately with your affiliations to those to whom you speak and also not mislead them to think that you are simply seeking information with which to help your child. Finally, you may not eavesdrop on private conversations between attendees. In summary, Autism One grants no permission to you or your crew to report on this conference or its attendees. Should we become aware that you are not following these guidelines, we will not hesitate to ask you to leave the conference.

AutismNewsBeat asked AutismOne for details on why Mr. Ullberg was removed from the conference, but he has yet to receive a response.

I find the wording and possible intent of this sentence rather odd: ” Autism One grants no permission to you or your crew to report on this conference or its attendees”. If an attendee chose to be interviewed, would that not be OK? The conference appears to be speaking for its attendees.

In addition, a public health official was in attendance for this year’s AutismOne conference. This person also was asked to leave. According to AutismNewsBeat:

A staff member of a western state department of public health was reportedly attending a session on vaccines and parental rights. According to one source, the speaker was advising parents how to apply for and receive vaccine exemptions. The session was interrupted by an AutismOne organizer who commandeered a microphone to announce that a state health department staff member was present, so parents should be careful about what was discussed.

A short time later four Westin O’Hare security guards entered the room, identified the staffer, and directed her to leave the conference facility.

Perhaps in the case of the journalist, AutismOne was afraid of bad press. But haven’t parent groups been asking for some time for people to listen to them? A public health official attends the conference in order to listen and is expelled.

Generation Rescue and Autism One appear to be working in a very defensive, entrenched mode. Internet chatter is mentioning closed sessions where Andrew Wakefield spoke. Closed sessions? Expelling journalists? Refusing permission for journalists to report on what attendees have to say–even if the journalist clearly identifies himself? Asking public health officials to leave for no apparent reason? Again, this comes across to me as an entrenched, defensive mindset.

Science based autism charities?

1 Jun

Science Based Medicine is a blog devoted to, well, discussing science based medicine. The subject of autism comes up fairly regularly, usually in the context of the vaccine/autism discussion. A recent SBM piece by Dr. David Gorski, Nine differences between “us and them,” nine straw men burning, caught my eye.

Dr. Gorski comments:

Alison Singer (@alisonsinger), President of the Autism Science Foundation, arguably the only truly science-based autism charity in existence at the moment,

I was about to write a comment when I decided that a blog post was more in order.

The Autism Science Foundation is a science-based autism charity. But, is it really arguable that there are no other truly science-based autism charities?

The answer (as you can likely guess) is “no”. Two names come to mind readily, but I don’t suggest this is an exhaustive list.

[Correction–it has been pointed out to me that both the foundations below do not accept public donations. Thus, they are not “charities”. That would leave the Autism Science Foundation as the one major science based charity]

Who is the largest autism charity? A lot depends on how you define size, but let’s just consider money. Who has the most and who spends the most? If you are thinking Autism Speaks, you are incorrect. The answer is the Simons Foundation.

The Simons Foundation has two main focuses, Math&Science and Autism. They run one of the better blogs on autism science. One of the recent members added to the Interagency Autism Coordinating Committee is from Simons. Most of the autism charities you might know of are working on the basis of taking money in and turning around and spending that money. That is part of the reason why you know about them, they have to keep their name in the public’s eye to get donations. Simons works from an endowment, a foundation. A big one. As of 2008, Simons had assets worth over US$1 billion ($1.108B if you want details). From this endowment, they fund research. After the U.S. Government, they are likely the largest source of autism research funding in the world.

If you check the Simons Foundation website and blog, you will see a decidedly science oriented organization.

The Nancy Laurie Marks Foundation also supports a number of science projects, as well as some advocacy efforts. The Nancy Laurie Marks Foundation was working from an endowment of nearly $US90 million in 2008.

I will highlight two paragraphs from the Marks Foundation “about” page:

The principal goal of the scientific program is to achieve a deeper understanding of the biological basis of autism, focusing on genetics, synaptic chemistry, the neurobiology of communication, systems biology and the physiology of movement. The Foundation funds peer-reviewed research, the development of collaborative investigator projects, and research fellowship programs. Through sponsorship of scientific conferences, symposia and workshops, the Foundation seeks to encourage innovation and provide a springboard to generate new avenues of shared inquiry.

and

The NLM Family Foundation actively seeks partnerships with other grantmakers sharing its goals and fosters collaborations between investigators and organizations that have a direct interest in developmental disabilities. Of particular interest are projects which challenge stereotypes that stand in the way of people with autism realizing their potential, such as the misconception that people with autism are invariably mentally retarded and have minimal interest in social interaction. Challenging such stereotypes will lead to a greater public understanding of autism and widen the scope of scientific inquiry.

The Nancy Laurie Marks Foundation recently donated US$29 million to Massachusetts General Hospital to start a program focusing on the needs of autistic adults.

I am regularly taken to task on this blog for focusing too much attention on issues which are ever increasingly less relevant to the autism communities. I think Dr. Gorski’s comment is not a failure on his part, but, rather, on mine. While I have discussed both the Simons and Marks foundations, it is well worth the time to discuss them again. Any real change privately funded research may bring to the lives of autistics will come from groups such as these.

The American Rally for Personal Rights – bit of a damp squib

27 May

Yesterday was the American Rally for Personal Rights (an anti-vaccine rally) held between 3pm and 5pm in a park in Chicago, US. In attendance was ex-doctor Andrew Wakefield in whose honour the rally was held.

Hoping for thousands, the organisers got what looks like a hundred or so (click for full size).

including one young man (A certain J. Crosby, Age of Autism Editor) who carried the sign ‘Autistics for Wakefield’

I’m not entirely certain who the autistics were. I mean I see Jake but no one else. Also in attendance were Wade Rankin, Erik Nanstiel, Boyd Haley, Bob Krakow and Jim Moody and for ‘name’ anti-vaxxers that was it. No Jenny McCarthy, No Jim Carrey, No Generation Rescue, No Age of Autism bigwigs (aside from young master Crosby of course).

Of course for bloggers such as I, this is a tad disappointing. There’s not really a lot to talk about when nothing much happens, nobody of any consequence shows up and the whole thing resembles a rain-soaked firecracker.

On the bright side, there were The Refusers who I’m pretty sure would’ve been good for a very hearty laugh. Aside from that – nothing really to tell. The sun was out, some anti-vaxxers waved a few signs around and the world collectively yawned.

See ANB’s take on it, he actually attended the rally himself.

Anne Dachel, Age of Autism Editor, makes remarkable claim

27 May

I was browsing the comments section of a seemingly innocuous story about autism – that early intervention might not be the universal panacea once thought – when I came across a comment from Anne Dachel, one of the leading ‘thinkers’ and editors behind the online anti-vaccine blog Age of Autism.

…I think a disorder that was unheard of 25 years ago…

I had to read it a couple of times to make sure I was seeing it right – I was – Anne Dachel believes autism was unheard of prior to 1985.

To say this is a remarkable claim is being overly fair to Dachel. Its one of those claims that is regularly made by the Age of Autism team that leaves one’s jaw on one’s chest with the sheer audacity of either its boldness or stupidity. It reminds one of John Best’s claim that autism was unheard of in China prior to 1999. Another rampant piece of stupidity.

As previously noted, Dachel writes for Age of Autism. I’ll leave you to form your own conclusions as to the accuracy of their blogging based on their Editors own bizarre beliefs about autism.

New study: many vaccines at once OK for kids

24 May

A new study from Pediatrics has come to the conclusion that:

Timely vaccination during infancy has no adverse effect on neuropsychological outcomes 7 to 10 years later. These data may reassure parents who are concerned that children receive too many vaccines too soon

Lead researcher Michael J. Smith said:

Our study shows that there is only a downside to delaying vaccines, and that is an increased susceptibility to potentially deadly infectious diseases,

…

We hope these findings will encourage more parents to vaccinate according to the American Academy of Pediatrics schedule, and reassure them that they’re making a safe choice when they do so.

Lets hope so. Today is a great day in the forward momentum of the confidence in vaccines now that Andrew Wakefield has been struck off and this latest study can only add yet more weight that no vaccine, no vaccine ingredient and no vaccine schedule has _ever_ been shown to cause autism either directly or indirectly.

This is the first time that a study such as this has been carried out:

…nobody had studied whether getting several vaccinations in a short time could have negative consequences, for instance by overloading the immune system, as many parents believe, according to Smith. He found that receiving as many as 10 different shots — including flu and whooping cough — had no impact.

And a CDC spokesman said:

Parents that are considering delaying vaccination should realize that there aren’t any specific benefits, and that they are putting their child at risk, and not only their child but also the community,

An excellent point. The benefits of vaccination are not just personal but societal. Those who refuse to vaccinate not only risk the personal well being of their children but the society they choose to live in.

Blogging IMFAR: Wrap-Up Notes

23 May

One of the things I wanted to do in blogging about IMFAR, was try to provide a bit of a wrap-up of my experience there in Philadelphia this year. Since it was my first time attending an IMFAR, and I really had no idea what to expect ahead of time, I figured it might be useful to jot down some overall notes retrospectively.

First and foremost, IMAR is a scientific meeting. There is no shortage of introduction to what is out there in current autism research. This began with Wednesday’s pre-meeting press conference. It was there, that the press would learn about several selected abstracts (apparently thought to be worthy of media attention): the University of Rochester’s (Dr. Susan Hyman) negative GFCF study results, the Kennedy Krieger Institute’s (Dr. Brian Freedman) debunking of the 80% divorce rate claim, and others such as, landmark genetic studies, infant sleep fMRI as potential early diagnostic tool in the future, and social/educational intervention strategies that demonstrate the importance of peer involvement. Each of the study authors presenting their work to the press, spent about 5-10 minutes giving the highlights and taking a few questions, but in reality, each presentation was barely a thumbnail sketch of what the research was about and perhaps a minute of discussion about potential real world significance of the findings. You can read more about the items that caught my attention in the press conference at Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results and Blogging IMFAR: Autism And Divorce Debunked, Among Others.

Following the day of the press conference, IMFAR was off and running, with full daily schedules of presentation sessions, and poster sessions running the majority of the day (one floor below where the presentation sessions were taking place). On one hand, I suppose the science presentations could seem fairly frustrating to many. Like the press conference, the oral sessions presentations are given on a fairly tight schedule, and often contain little more than an introduction, a few minutes of methodology discussion, a quick look at statistical results, and time for one or two questions – then it’s on to the next, which might even be something only very loosely related at times.

For a typical parent, I think it’s quite possible they’d find the whole format approaching “tedious-to-learning” much of the time, with only an occasionally very interesting or very well-presented piece of research. Don’t get me wrong, I wouldn’t want detract from the likely importance of researchers having an open venue to share ideas with each other, but for me, there are only so many shotgun presentations you can listen to, or posters you can look at in one day.

On the other hand, IMFAR is a place where it seems ridiculously easy to get the big picture quickly, and even talk with expert researchers in the field of autism science if you are so inclined. It’s hard not to catch the what of what’s currently taking place in autism research world, as it’s everywhere – in the program, in the posters, and in the discussions. As an example, if one wanted to learn what’s taking place in autism research that’s using brain imaging, whether looking at language response and differences in infant siblings of autistic children, or looking at the potential impact of some specific intervention on brain funtion, researchers studying just those kinds of things are at IMFAR presenting and discussing their research. From what I saw, one can attend the relevant presentations, and then visit with researchers later on – I saw this occur on several occasions, with researchers like Eric Courchesne (University of California, San Diego). “Accessibile” is word that is probably a pretty good way to sum up my general thoughts on the science at IMFAR. while the format can seem very dry, especially to someone like myself (who didn’t arrive with a specific scientific field of interest that I was dying to scout out), the science and the researchers do seem really accessible.

Which brings me to what I thought was an important impression of IMFAR. The scientists really do seem accessible – willing to spend time for those with quesitons, and willing to provide explanation and lay translation where appropriate. On the first full day at IMFAR, I have to admit that I really didn’t know where to start. How was I ever going to explore all the science, and then distill that down to something digestible in size, yet explanatory of the trends in autism science? I was so fortunate to have the opportunity to meet with Dr. David Mandell. Besides being a local Philadelphia researcher, he was the Scientific Program Chair for IMFAR this year. And I could not be more appreciative of the time he gave to me (and LBRB readers), in sitting down to explain the trends in autism research at IMFAR – and he’s probably one of the best possible people to see and understand those trends, as he read every one of nearly a thousand abstracts accepted at IMFAR this year. If you want the inside scoop on the science at IMFAR, as well as an opportunity to simply get to know the thoughtful Dr. Mandell a little better, it can be found at Blogging IMFAR: Excerpts Of An Interview With David Mandell, ScD.

Speaking of thoughtful autism researchers, while at IMFAR, I literally ran into (interrupting his cell phone conversation while on an escalator) Dr. Roy Richard Grinker, professor of anthropology and human sciences, autism epdemiologist, author of the book “Unstrange Minds”, and wouldn’t you know it, a jazz pianist and marathoner too! Dr. Grinker was gracious enough to sit down with me for coffee, and share a little more about why he was at IMFAR with LBRB readers. You can read the interview at Blogging IMFAR: Meet Roy Richard Grinker.

At this point in my notes, we’ve arrived at midday Friday. And it as midday Friday when I see what I consider the most interesting science. As a recipient of a travel/attendance grant (that partially funded my trip to IMFAR) from the Autism Science Foundation, I was also invited to attend their “Science and Sandwiches” luncheon. It might be tempting to think I was attracted simply for the free food, but the sad truth was, that I had eaten a very late breakfast and wasn’t even hungry at the time of the luncheon. During the “Science and Sandwiches” lunch, each of 6 pre-doctoral students presented an overview of their research plans. These are pre-doctoral students who applied, and in turn, the Autism Science Foundation selected, to fund their research directly. They all seemed fairly interesting and unique, ranging from researching social conversation rules among ASD kids and infant emotions measurement, to very specific mouse model genetics/pharmacological experiments, to epidemiology. Yes, epidemiology. It might seem surprising that a young autism science advocacy org like ASF, or anyone for that matter, would fund epidemiology. I can’t help but think that field is already maturing to some degree in the U.S. I thought to myself, other than potential minority underrepresenation, what kind of breakthroughs in scientific understanding could we really get from epidemiology in the U.S.? I mean, we already know that we’re probably finally very close to what is a pretty stable 1 in 100. What else is there?

That’s when we were introduced to Matthew Maenner. Maenner is a pre-doctoral student of the University of Wisconsin, Madison (working under the mentorship of Dr. Maureen Durkin), who proposed, what to me, looks like a very interesting take on autism epidemiology with his research titled, “Phenotypic Heterogeneity and Early Identification of ASD in the United States”. He asked the luncheon group (of what looked like about 60 attendees), about how many possible combinations of the individual DSM diagnostic criterion can result in an ASD diagnosis. You know, if one looks at all the possible permutations of: “(I) A total of six (or more) items from (A), (B), and (C ), with at least two from (A), and one each from (B) and (C )” and the criteria for Asperger’s and PDD-NOS from the DSM IV-R, how many many combinations are there? It turns out there are 616 (I think I wrote that down correctly). He had a fascinating cloud-graph-type illustration of this (there’s probably a good technical term for this), that looked like a spiral galaxy – the point being that diagnostic criteria steer categorization to a shared core, but at the same time, there are numerous arms extending in several directions. He explained how he intended to look at the CDC’s ADDM data to begin to answer questions about the basis for the landscape of real world diagnoses compared to the actual possibilities described within the diagnostic criteria. Like a fool, I assumed that the ADDM data, like much of published autism epidemiology, tended to be focused on fairly simple prevalence, even dichotomous in nature (Autistic – yes/no, Asperger’s – yes/no, PDD-NOS – yes/no, X percent of all ASD’s = Autistic Disorder, etc.). Also, like a fool, I asked about him about this with something to the effect of, “In assuming the CDC’s ADDM data doesn’t have the resolution to go beyond diagnosis results, and into the individual combinations of criteria that result in those diagnoses, how are you going to even look at answering that question your research is about?”. He politely responds, explaining that, in fact, the CDC’s ADDM data does have this resolution. My assumption is way wrong, and this is an “Aha!” moment for me. We have tons of what is probably pretty good data available from the CDC, and it seems, to me, that no one has looked at it in quite this way before now.

So here’s my take on this ASF-funded doctoral student’s proposed research – he may be digging into something much more descriptive and potentially useful to the biological and educational sciences with respect to autism spectrum disorders, than has been done so previously (that I am aware of). If there’s epidemiology that can quantitatively describe the distribution of characteristics that result in ASD diagnoses, biological, and even educational research may have a leg up on being meaningful. As an example, suppose that this epidemiology determines that a certain percentage of ASD diagnoses include selection of the C – 4. “persistent preoccupation with parts of objects”. With real numbers, biological research may have a starting point to evaluate associations of differences in brain structure or function with respect to this characteristic. With real numbers, perhaps the success of specific educational strategies (that take advantage of this specific knowledge) can be meaningfully evaluated with more individualized approaches. Here’s the bottom line as I see it: Matthew Maenner is taking a solid step towards building understanding of the variation that occurs in autism spectrum disorders. It’s possible, if not likely, that his work could contribute to entirely new and much more individualized directions in other autism research. The days of any notion of singularity in etiologic origin of autism are long gone (in favor of complex combinations of numerous factors). Here’s a researcher who, in my opinion, understands that and will take steps towards building real understanding by looking at that distribution of variation. It wouldn’t surprise me in the least if “Matthew Maenner” is a name associated with the more interesting and useful autism epidemiology in the future.

So there you have it. That was my couple of days at IMFAR: an early look at some of the “newsworthy” science, an opportunity to learn much more about current trends in autism research from a hard-working scientist (the IMFAR Scientific Program Chair, Dr. David Mandell), a chance to sit down and chat with a very thoughtful researcher and author (Dr. Roy Richard Grinker), as well as first-hand look at some new research direction in graduate programs. All in all, it was a pretty interesting couple of days.

I’d also like to take just a minute and thank the Autism Science Foundation for partially, yet generously funding my travel (as a parent who blogs) to IMFAR. I had complete freedom to check out and write about whatever I wanted to, and it wouldn’t have been possible without their financial assistance.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Dr. Andrew Wakefield to join Dr. Arthur Krigsman in clinic independent of Thoughtful House?

20 May

Dr. Andrew Wakefield gives an interview in a recent story in the Austin Statesman, Censured doctor says he’ll resume autism research in Austin.

Dr. Wakefield is the primary doctor behind the idea that the MMR vaccine causes autism. His initial paper suggesting this link has been retracted by The Lancet, and the General Medical Council ruled that he was dishonest in his research efforts and showed a callous disregard for his subjects. He expects to lose his license when the GMC finishes the second phase of their action against him next Monday.

According to Dr. Wakefield, this will be the “final effort by the mainstream medical establishment to silence him and stop his research.”

I am at a loss for how this could silence him or stop his research. Dr. Wakefield resides in the United States and has for some time. Even when he was doing research in the United Kingdom, he was not working in a capacity to use his medical license (at least to my understanding).

The interview continues–

“Now that they have come to their determination, I will make absolutely sure the truth comes out,” Wakefield said. “I think I am in a position to encourage people to take a more serious look at the kinds of projects I am considering,” such as researching the long-term health of children who have been vaccinated and those who have not been vaccinated.

Again, I am at a loss. Why has Dr. Wakefield waited until he lost his license, something which he does not use, to make sure that the truth comes out? I would also question whether he is in a position to be taken seriously.

Dr. Wakefield is further quoted:

“Vaccine safety is built upon the confidence of the public u2026 and I’m not prepared to (compromise) that,” he said Wednesday, adding that he hopes people will read the book and “make up their own minds about what is real and what isn’t real.”

Dr. Wakefield is not prepared to compromize the public’s confidence in vaccines?

I am, yet again, at a loss for words.

On the subject of Dr. Wakefield’s future efforts:

Wakefield said he resigned from Thoughtful House so he wouldn’t be a distraction from its work. He said Thoughtful House was getting away from a focus on gastrointestinal issues and autism. Krigsman posted a message to former Thoughtful House patients saying their records would be forwarded to him, and they could see him at a “new, independent” office in Austin where Wakefield said he would do research similar to what he did at Thoughtful House.

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