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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

Reading while black and autistic leads to arrest

10 Jun

Reginald Latson, an 18-year-old Virginia man with Asperger’s syndrome, faces one count of malicious wounding of a law enforcement officer, one count of assault and battery of a law enforcement officer, and one count of knowingly disarming a police officer in performance of his official duties, following an incident in a high school parking lot.

Stafford County deputies received a report of an armed person outside of a library, which prompted a lock down of six schools in Stafford County, including a high school.

From WJLA in Washington, DC:

Stafford County Sheriff’s Office spokesman Bill Kennedy says it all began at 8:38 a.m. with the report of an armed person in the parking lot of a library across from Park Ridge Elementary. The threat prompted a lockdown of six schools in Stafford County, including the high school, which is separated from the library and elementary school area by a wooded area.

Kennedy says deputies saturated the area after the call. About 20 minutes later, a Stafford High School resource officer spotted a man matching the description of the lookout. While the man was being questioned, he became irate and attacked the school resource officer, who is also a sheriff’s deputy, investigators said.

The man repeatedly struck the deputy, who pepper-sprayed the man, according to the Sheriff’s office. During the struggle, the assailant was able to wrest the pepper spray for the deputy and sprayed him, investigators said.

The man then fled. The deputy, Thomas Calverley, suffered head laceration, cuts, abrasions and a broken ankle. He was scheduled for surgery on the ankle this afternoon.

Latson was located in the woods about 45 minutes later by a canine officer and his dog, Vader. Investigators never found a gun, and now say the initial caller never actually saw a weapon.

Latson is currently being held at the Rappahannock Regional Jail under no bond.

You can read more about the case at this website started by Neli’s family.

“The actions that were taken by the police that day were excessive in the least and grossly mishandled,” writes Neli’s mother. “Someone says I see a suspicious black male and he “could” have a gun, while all my son was doing was sitting in the grass at the library. And you shut down six schools and go out on a manhunt for this dangerous black man who was sitting in the grass. Anyone reading this story can read between the lines and see that this just doesn’t add up.”

You can read the Stafford County Sheriff Dept. news release here.

Another autistic kid in the news

9 Jun

I have to ask–did that make you cringe? Are you thinking, “Now what?” Here’s the story: a kid was choking in a school cafeteria. A teacher tried to help but was failing. In rushed in Marken Suaza, a 9 year old diagnosed with Asperger syndrome, to perform the Heimlich maneuver.

Story is here, Boy With Autism Saves Choking Friend.

Somehow that story hit a good spot today for me.

Baby killer blames autism

8 Jun

This is the sort of story I find it nigh on impossible not to get angry and scared about. Stephanie Rochester allegedly killed her 6 month old child because she thought he might have autism.

According to an affidavit seeking her arrest, Rochester wanted to commit suicide but didn’t want to “burden her husband” with the potentially autistic boy.

There aren’t words for how sickening this is. I feel personally attacked by this woman that she should attempt to make autism responsible for the death of her child rather than shouldering the blame herself. My own autistic child and step child and all other autistic people deserve better than this cheap attempt at buck passing.

And really one has to examine the social atmosphere this kind of thing takes place in. Who gave this person and her attorney the idea that autism is such an awful awful thing that a jury might see past her culpability and accept that it was OK to place blame on autism itself? I know I have my own ideas about this.

I was moved by the love of a mother must have for her child to take his life rather than him fall upon a society that really didn’t give a damn.

Tom Insel faces scrutiny

8 Jun

Dr. Tom Insel is the director of the U.S. National Institute of Mental Health (NIMH) and also chairs the Interagency Autism Coordinating Committee (IACC). As such, he has been placed under a lot of scrutiny and criticism from some sectors of the autism community.

He now faces scrutiny from other quarters.

Science Insider has a story, NIH Conflicts Overhaul Bumps Up Against Psychiatry’s Old Boys Network. The story is also in the Chronicle of Higher Education as As He Worked to Strengthen Ethics Rules, NIMH Director Aided a Leading Transgressor.

The scrutiny involves Dr. Insel’s actions in possibly supporting a former colleague from Emory Universiy, Dr. Charles B. Nemeroff, in his effort to find a new position at the University of Miami. Dr. Nemeroff was sanctioned at the time for conflict of interest issues, including a two year ban by Emory on applying for NIH funding.

From the Chronicle:

A yearlong effort by the National Institutes of Health to toughen its policies against financial conflicts of interest was led by an administrator who quietly helped one of the most prominent transgressors get hired by the University of Miami after a decade of undisclosed corporate payments led to his departure from Emory University, a Chronicle investigation has found.

The administrator, Thomas R. Insel, director of the National Institute of Mental Health, also encouraged the researcher, Charles B. Nemeroff, to apply for new NIH grants, even though Emory had agreed on its own to restrict Dr. Nemeroff from NIH grant eligibility for two years. The NIH also allowed Dr. Nemeroff uninterrupted eligibility to serve on NIH advisory panels that help decide who receives NIH grant money.

From Science Insider:

Nemeroff then applied for a job at the University of Miami’s medical school. According to e-mails that The Chronicle obtained, the school’s dean, Pascal Goldschimidt, e-mailed Insel in July 2009 to ask for a “confidential opinion” regarding Nemeroff. Insel replied that he could not provide a written recommendation but could talk to Goldschmidt informally by phone, which he apparently did, according to the e-mails. (Goldschimdt told The Chronicle he wanted to be sure Nemeroff could receive NIH grants and that Insel assured him “that Charlie was absolutely in fine standing.”) At the time, Insel co-chaired a new NIH committee to revise federal COI regulations; NIH proposed changes in those rules last month.

Addendum:

Dr. Insel discusses issues involved in the above in his blog post NIMH – Reducing Conflict of Interest, Ensuring Public Trust. Given that his post in to a U.S. Government website, I don’t see a problem reproducing it in whole here:

Over the past five years, there have been several psychiatrists implicated in financial conflicts of interest (fCOI). Some of these psychiatrists were funded by NIMH. Two questions have been raised: is fCOI a greater problem for psychiatrists than other medical specialties? And is NIMH part of the problem or part of the solution? I addressed the first question in a recent JAMA commentary.

The second question – what is NIMH’s role? – is raised by allegations that NIMH has not taken this problem seriously and that as Director, I have failed to take action against those who have been accused. These allegations are particularly surprising to me because the Institute has done so much to ensure that the research we fund meets the highest standards of integrity—free of bias or hidden agendas. Beginning in August 2008, NIMH established a new internal process to review all grants prior to funding and all nominees for advisory panels prior to appointment to identify potential fCOI issues. When concerns arise, we require the institutions involved to provide additional information regarding compliance with the current fCOI Regulations to ensure the fCOI has been managed, reduced or eliminated.

The Institute is taking additional steps to preserve the integrity of NIMH-supported research. NIMH is developing a training course to help those in academic psychiatry understand the reasons for Regulations regarding fCOI.

In addition, as part of our mission, NIMH supports research to study problems in the use of evidence based practices, such as the continued under-utilization of psychosocial treatments and the ways by which certain medications may become overused.

Concurrently with the Institute’s aggressive stance to address fCOI, NIH (with NIMH in a leading role) has proposed a new approach towards strengthening Federal Regulations. A Notice of Proposed Rulemaking was published on May 21, 2010 outlining a more rigorous approach to investigator disclosure, management of conflict by universities, and federal oversight. Available for public comment until July 20, 2010, we urge our many partners to review and comment on these proposed revisions to the current fCOI Regulations. We are hopeful that with strengthened Regulations, the Institute will be more efficient and proactive in minimizing potential sources of bias in research.

There is an additional question being asked of those who have violated existing policies: Will they be permitted to apply for grants? Any scientist can apply for NIH funding unless he or she has been “debarred”, the result of an official process via the HHS Office of Research Integrity. Absent this, all applicants must be treated fairly and equally.

NIMH has a critical national mission: to transform our understanding and treatment of the nation’s most disabling disorders (WHO 2008). This will require the best minds from government, academia, and the private sector working for the public good and not for personal gain. As the steward of public funds at NIMH, I am committed to ensuring that we support science that is unequivocally in the public’s interest, unambiguously supported by the public trust.

The second-to-the-last paragraph addresses one issue raised in the Chronicle story–that of the status of Dr. Nemeroff’s ban from applying for NIH grants. He was banned by his University, Emory, not the NIH. Dr. Insel informed U. Miami that Dr. Nemeroff was not banned or “debarred” by NIH.

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.

The Thinking Person’s Guide to Autism

7 Jun

There’s a new blog/book project in town and its right here (or @thinkingautism on Twitter or here on Facebook).

The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed.

…

Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families.

There’s a great team of people behind this project and I for one am greatly looking forward to the content they put out.

Urine test for autism? Hmmm

4 Jun

Following on from Lisa Jo’s well placed concerns about this study,I also have a few. Namely the references. Not being scientifically qualified to tackle the meat of the paper I look straight at what the researcher uses to support his ideas. So far I’ve found these references the authors base their paper on:

1) Kidd, P. M. Autism, an extreme challenge to integrative medicine. Part: 1: The knowledge base. Altern. Med. Rev. 2002, 7 (4), 292–316.

2) Ashwood, P.; Anthony, A.; Pellicer, A. A.; Torrente, F.; Walker-Smith, J. A.; Wakefield, A. J. Intestinal lymphocyte populations in children with regressive autism: evidence for extensive mucosal immunopathology. J. Clin. Immunol. 2003, 23 (6), 504–17.

3) Bolte, E. R. Autism and Clostridium tetani. Med. Hypotheses 1998, 51 (2), 133–44

4) James, S. J.; Cutler, P.; Melnyk, S.; Jernigan, S.; Janak, L.; Gaylor, D. W.; Neubrander, J. A. Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. Am. J. Clin. Nutr. 2004, 80 (6), 1611–7

At the very least, relying on studies from Alternative Medical Review, studies co-authored by Andrew Wakefield, studies from Medical Hypothesis and studies co-authored by Jim Neubrander should give rise to questions over the credibility of this paper. Is it enough to scupper it? Of course not. But when we take Lisa Jo’s questions into the bargain – that autism does not always, if ever, have a distinct GI component, I have to wonder about this paper.

UKAF launches a Keep The Promise Autism Awareness Campaign

3 Jun

The UK Autism Foundation is issuing a call to all supporters to back the Foundation’s new ‘Keep The Promise‘ Autism Awareness Campaign that we are launching. We first started the Autism Awareness Campaign in 2000 but we feel that there is a great deal of unfinished business on autism in the United Kingdom and we are appealing to the new Prime Minister David Cameron to take firm and decisive action on autism. Prime Minister Cameron has promised to help and protect the vulnerable. We now ask the Prime Minister to KEEP THE PROMISE and support the 500,000 people with autism.

Please support UKAF’s Autism Awareness Campaign by writing letters to the following – for the cost of a few stamps you too can make a difference by ‘Standing Up for Autism.’ We have been campaigning non-stop since 2000. Her Majesty’s Government needs to do so much more for parents, carers, children and adults with autism and Asperger’s Syndrome in our country. Many are still suffering and struggle to access public services in education, health, specialist speech therapy and respite care.

Join UKAF’s ‘Keep The Promise’ Autism Awareness Campaign by writing to:

Prime Minister David Cameron
10 Downing Street
Whitehall
London SW1A 2AA

PLEASE tell the Prime Minister that you are backing the UK Autism Foundation’s ‘Keep The Promise’ Autism Awareness Campaign and ask him to protect the vulnerable by supporting UKAF’s call for –

* An autism strategy for children
* An autism strategy for the elderly
* A new Autism Stakeholders Group – so there could be genuine and real partnership working with small, medium, large charities and Ministers with HM Government where everyone will feel they are equal at the top table.
* Permanent increases in the disability living allowance, the carer’s allwance, child benefit and tax credits for the Autism Community. Many carers are working over 70 hours a week and get a pitiful 72 pence an hour – this is way below a minimum. Autism is a 24 hour job and carers need more than 72 pence an hour.
* UKAF is calling for state funded autism schools and Autism Academies so that all children and young people with autism will have equality of opportunity. UKAF is calling for all avenues to be open – mainstream, special schools and specialist autism schools.
*UKAF is urging Prime Minister David Cameron and Deputy Prime Minister Nick Clegg to reach out and help poor families with autism who are struggling to cope with life during this recession. UKAF has urged the Government to protect the vulnerable from the cuts to Public Services.

Please also send letters – with the above points to –

Rt.Hon.Nick Clegg MP
Deputy Prime Minister
Cabinet Office
70 Whitehall
London SW1A 2AS

Rt. Hon. Andrew Lansley MP
Secretary of State
Departmentr of Health
Richmond House
79 Whitehall
London SW1A 2NS

Rt. Hon. Michael Gove MP
Secretary of State
Department of Education
Sanctuary Buildings
Great Smith Street
London SWIP 3BT

We appeal to you to spend on a few stamps and write to the above next week, backing the UKAF’s ‘Keep The Promise’ Autism Awareness Campaign – your support will make a difference – we need decisive action on autism.

PLEASE email your friends to join the campaign and start writing these letters. Please spread the word on Facebook, Twitter and My Space and ask them to write to David Cameron to support UKAF’s ‘Keep The Promise’ Autism Awareness Campaign calling for decisive action on autism.

PLEASE support the vulnerable.

PLEASE ask your friends to join the UK Autism Foundation causes page on Facebook please invite all your friends and contacts to join this page and help and support us – we are lobbying and campaigning for the poorest sections of society.

Addressing the ‘too many too soon’ hypothesis

3 Jun

Regular readers may be aware that I blogged about a study recently that demonstrated the early stages of tackling the ‘too many too soon’ hypothesis. It came in for some fierce criticism in the comment section so I wrote to the lead author to get his thoughts. What follows is his answer to me via email:

Reviewing your blog, there are two related criticisms of our study.

First, I must clarify the conflict of interest comment. Though less relevant in my mind, it addresses the other limitations noted by your readers. This study was completely unfunded – not by any pharmaceutical company, not by the CDC. We did this all in our free time because of a simple non-financial “conflict” – as infectious disease physicians we take care of children who suffer needlessly from vaccine preventable diseases. This clarification of funding leads to point 2 – because we
did not have millions of dollars at our disposal we chose to use pre-existing data to address a common parental concern for which we could not find any evidence-based talking points.

This strategy had significant benefits – once we had the idea for this study we got right to work and did not have to wait 7-10 years to see what the outcomes might be. However, as we acknowledge in the discussion (and your readers point out), the use of pre-existing data also introduces limitations. We did not have control over which outcomes were tested, nor which children were included or excluded from the original study.

Nevertheless, I believe this study was accepted for publication in an academic medical journal because it offers a unique methodology that may be used to study the effects of delayed vaccination on any outcome of choice, whether it be the incidence of vaccine-preventable diseases or the proposed vaccine side effect du jour. Unfortunately, I do not have the resources to perform these studies myself.

A separate question – which is really a critique of the original NEJM study (with which I was not involved) and not ours per se – is why the authors chose to exclude the children they did. In the time since you e-mailed be I believe “Luna_the_cat” has explained this fairly clearly. Basically, the original study excluded children with brain injuries that would not have been related to vaccination (except for a few – pneumococcal and haemophilus influenza meningitis which vaccines PREVENT) and this seemed reasonable in the initial study. Furthermore, the majority of these exclusion criteria are prenatal or congenital diagnoses that would have predated vaccination anyway.

Finally, regarding lack of “controls”. This was not a “vaccinated versus unvaccinated” study, nor was it intended to be. It was designed to address the “too many too soon” hypothesis. Our “controls” were those children in the cohort who received fewer vaccines later during the first year of life. In this case the “exposure” was timely vaccine receipt – which was never associated with any adverse neurodevelopmental outcomes.

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