Archive | July, 2009

Jenny McCarthy: making autism advocates the butt of comics

18 Jul

There are many reasons I have for being vocal about my objections to Jenny McCarthy. Public health, that’s obviously a big one. Making the rest of the world look at the “autism community” as a bit of a joke, well that’s another.

With a hat-tip to Brian Steinberg of Examiner.com, cue the comic strip “Soup to Nutz”.

Soup To Nutz

It isn’t like they don’t know who is most responsible for giving Jenny her platform either:

Soup To Nutz

Mr. Steinberg closes his post so well I just have to quote it as my closing:

Look, it’s one thing to make fun of the president or a prominent politician, or even make reference to a big-name movie star or starlet. But it’s quite another to take on a celebrity with a pet cause or peeve. Mr. Stromoski is on firm ground taking on Ms. McCarthy’s credentials. I just wonder if her fans will treat him courteously.

Care Clinics and Doctors Data sued

17 Jul

An alternative medicine clinic specializing in autism, Care Clinics of Austin Texas was recently raided by the FBI and the IRS and appears to be shut down.

According to the Quackwatch website In another action, Care Clinics and Doctor’s Data are being sued:

CARE Clinics, of Austin Texas, its owner Kazuko Curtin, its subsidiaries, and Chicago-based Doctor’s Data have been sued for fraud, negligence, and conspiracy

The complaint is being brought by an adult, apparently not autistic, who claims to have been misdiagnosed for heavy metal poisoning. In a step that could have a big impact on the autism alternative-medicine community, the petitioner is charging that the method of testing for heavy metals, specifically that used by Doctors Data, is fraudulent.

It’s worth repeating: it is hard to underestimate the impact of a successful suit against challenge testing to “diagnose” mercury poisoning.

Congress says no to misleading autism information

16 Jul

Last year Mr. Mark Blaxill and Mr. David Kirby were given the privilege to misinform members of the U.S. government and their aids. Besides the fact that Mr. Blaxill has yet to retract his position (and pseudo-papers) claiming that autism is mercury poisoning, and the mish-mash that Mr. Kirby makes of science, there is the curious incident of the misquoted quote. Mr. Kirby made a serious error in his talk, misquoting a statement by the NIH, and was caught by a congressional staffer (an M.D. who was obviously well prepared).

It isn’t like this sort of inaccuracy was something new. Mr. Kirby was having a lot of difficulty with accuracy about this subject around that time. Epiwonk discussed in great detail how serious Mr. Kirby’s misinterpretations are here and here.

I don’t really understand Mr. Kirby sometimes. Epiwonk’s first blog post caused Mr. Kirby to admit he made a mistake and “pull” his blog post. Mr. Kirby posted a second, with this statement:

NOTE: My original post on this topic mischaracterized the 2003 CDC vaccine investigation as an “Ecological Study,” which it was not. I am reposting this piece to reflect that information accurately, but also to point out that many of the weaknesses identified in the CDC’s data and methods apply to the published 2003 “retrospective cohort” study, as much as they do to any future “ecological” ones. I regret and apologize for the error.

He apologizes for the error. He removed the direct link to the post from his main webpage. But, did he pull the blog post which even he declares was “in error”? Nope. It is still on the Huffington Post for all to see. Hence my quotes in the phrase “pull” his blog post.

What about the misquote in Mr. Kirby’s lecture? Well, last I checked it was still in the power point presentation he has on his website. No comment, no correction.

I’m sure Mr. Kirby is planning on being more careful this year. This year? Yes, he and Mr. Blaxill are being hosted to give another briefing to congress.

Last year, Mr. Kirby and Mr. Blaxill packed a small room. This year, they seem to be struggling to get people to fill even that small space. How do I know? Well, the good people at the Age of Autism blog have supplied us with a list of the people in the Congressional Coalition for Autism Research and Education (C.A.R.E) who will be attending, and who attended last year but not this year.

Want to run some stats? My unofficial and highly unscientific accounting based on the information on the Age of Autism blog:

C.A.R.E. has 11 offices attending who saw the briefing in 2008 returning in 2009.

However, C.A.R.E also has 26 offices declining the opportunity to observe Mr. Kirby and Mr. Blaxill for a second time. (including, oddly enough, Dan Burton)

Yep, you read that right. 70% of the C.A.R.E. offices who heard the briefing last year have decided to give it a pass this year. I actually doubt it is because Mr. Kirby was caught in a fabricated quote last year. My guess is that it’s just because Mr. Kirby and Mr. Blaxill basically had little accurate information of value to say last year, and little different to say this year.

Continuing with the stats:

C.A.R.E. has 8 offices attending for the first time in 2009.

C.A.R.E. also has 110 offices who did not attend in 2008 and are not attending now.

Summarizing these numbers, we see that, by far, most of C.A.R.E is not attending. ( I count 17 offices attending out of 153. Or, 89% are not attending).

Again, I don’t think it is because of Mr. Kirby’s lapse. The lack of a clear, scientifically sound message is much more likely the reason. Congress heard what Mr. Kirby and Mr. Blaxill have to say and there is no point in hearing it again.

Last year’s congressional briefing was the subject of three blog posts here:

Vaccines on the Hill. Vaccines on the Hill II. Vaccines on the Hill III.

FBI and IRS shut quack clinics

16 Jul

Readers may remember the investigations by health insurers of CARE clinics. Now the FBI have become involved and CARE clinics have shut.

CARE Clinics, an autism clinic on Bee Cave Road that was being investigated by insurance companies over insurance claims, was raided by the FBI and IRS agents today.

The clinic has been closed, perhaps permanently.

Agents are removing dozens of boxes of documents, but they declined to say what they are looking for. They directed inquiries to Special IRS Agent Mike Lemoine, who did not immediately return a call.
[…]
CARE clinics mainly treated children with autism using alternative therapies typically frowned on by mainstream doctors. Though some parents who brought their children to CARE Clinics say they’ve seen improvements in their child’s autistic behaviors, critics say the clinic uses therapies that lack strong scientific evidence. The clinic commonly uses intravenous chelation on patients, a controversial treatment that introduces a chemical solution into the body to bind with a metal or other substance to be removed.

I stand corrected

16 Jul

I have stated in recent posts that I don’t think it is appropriate for the government to declare any specific therapy as “medically necessary” by law. So much so that I wondered if there was examples of it happening. Well it does.

Consider House Resolution, H.R. 2413, the Autism Treatment Acceleration Act of 2009. Not a law, but a potential law (a bill).

3) TREATMENT OF AUTISM SPECTRUM DISORDERS- The term `treatment of autism spectrum disorders’ means the following care prescribed, provided, or ordered for an individual diagnosed with an autism spectrum disorder by a physician, psychologist, or other qualified professional who determines the care to be medically necessary:

`(A) Medications prescribed by a physician and any
health-related services necessary to determine the
need or effectiveness of the medications.
`(B) Occupational therapy, physical therapy, and
speech-language pathology.
`(C) Direct or consultative services provided by a
psychiatrist or psychologist.
`(D) Professional, counseling, and guidance services
and treatment programs, including applied behavior
analysis and other structured behavioral programs. In
this subparagraph, the term `applied behavior
analysis’ means the design, implementation and
evaluation of environmental modifications, using
behavioral stimuli and consequences, to produce
socially significant improvement in human behavior,
including the use of direct observation, measurement,
and functional analysis of the relationship between
environment and behavior.
`(E) Augmentative communication devices and other
assistive technology devices.’.

There it is–people trying to make a law to define some of what must be considered medically necessary for “an individual diagnosed with an autism spectrum disorder”.

I don’t think people should codify into law what is included in “medically necessary” for any condition. I am open to hearing dissenting views, especially from medical doctors.

Luckily the bill presents one reason why I don’t like this:

(13) Effective health care, treatment , and services for individuals with autism spectrum disorders depends upon a continuous exchange among researchers and caregivers. Evidence-based and promising autism practices should move quickly into communities, allowing individuals with autism spectrum disorders and their families to benefit from the newest research and enabling researchers to learn from the life experiences of the people whom their work most directly affects.

This is exactly why I object to codifying “medically necessary” treatments. How are effective new treatments supposed to move quickly into communities if we have a small subset that is declared medically necessary by law? How does a new treatment get into communities? Passage of a new law? The exchange should be as noted above–between researchers and caregivers (with practitioners in there as well). The process should not include legislators, in my opinion.

Imagine if secretin had been legally defined as “medically necessary”. We would now be in the situation where secretin is not considered medically necessary by the medical community, but it could be still legally defined as such.

It gets worse. The bill is being sold using the cure-them-because-they-cost-so-much mentality. From the “findings” section of the bill:

(8) The Harvard School of Public Health reported that the cost of caring for and treating individuals with autism spectrum disorders in the United States is more than $35,000,000,000 annually (an estimated $3,200,000 over an individual’s lifetime).

Others have taken apart the “cost of autism” argument far better than I can.

There is a lot more that can be (and I am sure will be) picked apart in this bill. I will bring up just one more point, again from the Findings section:

(6) Individuals with autism spectrum disorders often need assistance in the areas of comprehensive early intervention, communication, health, recreation, job training, employment, housing, transportation, and early, primary, and secondary education. With access to, and assistance with, these types of services and supports, individuals with autism spectrum disorders can live rich, full, and productive lives. Greater coordination and streamlining within the service delivery system will enable individuals with autism spectrum disorders and their families to access assistance from all sectors throughout an individual’s lifespan.

It strikes me very odd, and in fact, sad, that they would mention the value of recreation, job training, employment, housing, transportation and education, but not act to improve the way the US handles those issues.

But, I have drifted off topic. The main point is, yes, there is an effort in the US legislature to legally define ABA as “medically necessary”.

I did a search on thomas.gov for bills in the 111th congress that include the phrase “medically necessary’. I got 56 hits for bills in various stages of becoming law. Here are just a few examples (including one about autism).

House Resolution (H.R.) 995 states that annual mamography or MRI can not be denied as not medically necessary.

H.R. 870 is the “Medicare Medically Necessary Dental Care Act of 2009”

A bill that is directly related to autism: H.R. 1600, “To amend title 10, United States Code, to provide for the treatment of autism under TRICARE” states:

(g)(1) For purposes of subsection (a)(18), treatment of autism spectrum disorders shall be provided if a health care professional determines that the treatment is medically necessary . Such treatment shall include the following:

`(A) Habilitative or rehabilitative care.

`(B) Pharmaceutical agents.

`(C) Psychiatric care.

`(D) Psychological care.

`(E) Speech therapy.

`(F) Occupational therapy.

`(G) Physical therapy.

`(H) Group therapy, if a health care professional determines it necessary to develop, maintain, or restore the skills of the beneficiary.

`(I) Any other care or treatment that a health care professional determines medically necessary .

`(2) Beneficiaries under the age of five who have developmental delays and are considered at-risk for autism may not be denied access to treatment described by paragraph (1) if a health care professional determines that the treatment is medically necessary .

Talk about a wide open door. Any health care practitioner can declare any “care or treatment” to be medically necessary, and the insurance has to pay for it.

This whole post is about how I’ve been wrong before, but I can not see that bill passing without changing that giant loophole.

Again, I don’t think the government should be in the position of defining what is medically necessary. To me it is like legally defining pi to be 3.0000.

However, neither should insurance companies be the sole arbiters of what is and is not medically necessary. What do we do when an insurance company denies claims based on “lack of medical necessity”? One can appeal, although many do not know that. Usually insurance companies have internal appeals processes. I heard a lawyer once state that he had fewer appeals to bring a case to the supreme court than to get through an insurance company’s appeal process.

So, where does this leave us? First, yes, there is an effort to create laws which specifically call for ABA to be defined as medically necessary. Second, and more general, we have a system where medical necessity can and is defined in some cases by law.

In an ideal world, laws do not define medical necessity. We don’t live in an ideal world. What do we do?

End insurance discrimination?

13 Jul

There is one very important thing that is missing in the call to action on insurance reform put out by Autism Speaks. It is posed as a call to end insurance discrimination. To end insurance discrimination for autism.

Why only autism?

If there is insurance discrimination (there is), it is not limited to autism. We are part of a larger disability community. Therapies for people with autism (such as speech an occupational therapy) are often denied because insurance plans often include specific exclusions for developmental disabilities.

While much of the discussion on this site has focused on ABA, speech and occupational therapies are both commonly used with children with autism and are expensive. ST and OT can easily run $10,000 to $20,000 per year. Easily.

Is it right for insurance companies to deny benefits based on disability?

Is it right to call for an end to discrimination, but only for autistics?

I say no to both.

Federal mental health insurance parity

10 Jul

As noted recently, there is a push to keep mental health parity in US Federal laws for insurance.

Why do I say “keep”? Because there is already an act to include mental health parity (which includes autism) on the books, which if I recall correctly, is set to go into effect Jan 1, 2010.

I discussed this while the legislation was ongoing. It is now public law 110-343, and can be found here. Don’t be put off by the fact that the abstract states:

To provide authority for the Federal Government to purchase and insure certain types of troubled assets for the purposes of providing stability to and preventing disruption in the economy and financial system and protecting taxpayers, to amend the Internal Revenue Code of 1986 to provide incentives for energy production and conservation, to extend certain expiring provisions, to provide individual income tax relief, and for other purposes.

“Other purposes”…they don’t even mention the mental health parity act until page 98! Ironic considering that the bill started out as the “Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act”.

So, why the push to lobby Nancy Pelosi and others to “end discrimination”? First is that this “Equity Act” didn’t apply to everyone with insurance in the US. But, mostly, the reason is ecause the Federal government is discussing big changes in the way insurance is governed (per Obama’s campaign promises).

Call congress to support autism insurance

9 Jul

Autism Speaks has been working in many states to institute insurance parity for autism. “Parity” means that therapies to treat autism must be given on the same level as other medical conditions.

One big loophole in this is that many insurance programs do not fall under state law. In the US, most people who have medical insurance get it through their employer. Generally, we all think that our employer buys a policy for us from some carrier like Blue Cross or Kaiser. But, what if the employer acts as the insurer? I.e. what if your company pays your medical bills? Well, one thing is that your company is not bound to follow state laws.

So, say you live in a state that has a parity law requiring that autism be covered, what then? Since the federal government doesn’t have insurance parity, you and your family don’t benefit from your state’s law.

You have to imagine this is one reason why companies self-insure.

That aside, Autism Speaks is heading a campaign to get the federal government to pass legislation to end “discrimination” in insurance coverage. They are asking people to call legislative leaders: house speaker Nancy Pelosi (contact info) and Senate Majority Leader Reid (contact info).

Up to this point I think this is very good. I would encourage people to contact these leaders, as well as your own congressperson and senators.

However, the TV ad really bugs me. Take a look and form your own opinion:

To people in the autism community, I think the message is clear. Insurance means funding ABA to make a kid normal. The kid with insurance gets to play with other kids, the kid without insurance is left sitting on his own.

I am not anti-ABA, but I really don’t like that message.

I also am not wrong in my interpretation. From Autism Speaks’ site “autism votes”

“Neighbors” depicts two young boys who are next door neighbors – one, whose insurance has given him access to autism therapies is shown playing with other kids; the other, who has been deprived of access to therapies, sits alone on his lawn, socially isolated. The TV spot ends with a call to action, urging the American public to call United States Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to tell them that any national health care reform plan that does not include autism insurance reform is unacceptable.

Fourteen states have already acted to amend insurance laws and require insurers to cover medically-necessary, evidence-based autism therapies. In the other 36 states, insurers explicitly exclude coverage of these behavioral therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Applied behavior analysis therapy (ABA), recognized as an effective, evidence-based treatment for children with autism, costs upward of $50,000 a year – a cost well beyond the means of most American families. A federal law would supersede state laws and require all insurers to cover ABA.

Again, I am not anti-ABA. I am against using ABA in an effort to make an autistic person (child or not) “normal”. Since this subject seems to come up in discussions of ABA, I will also make it clear that I don’t think any therapy should be mandated for autism. Mandating ABA is not the intent of this initiative, from what I can see.

Don’t let Autism Speaks or the commercial stop you if you support insurance parity for autism. It is a good cause.

Guilty plea in Texas “fight club”

7 Jul

One of the worst stories in the last year was the “fight club” environment in a Texas school for children with disabilities. I was disgusted then, it is disgusting now. But, at least there is some justice on the horizon.

From Disability Scoop:

D’Angelo Riley pleaded guilty Monday to three counts of causing injury to a disabled person. A former employee of the Corpus Christi State School in Corpus Christi, Texas, Riley was one of six charged after cell phone videos were discovered in March showing employees forcing residents to fight. Police said fights went on at the facility nearly every night for over a year. Riley is expected to be sentenced Thursday.

Meanwhile a judge said Tuesday that the cell phone videos would not be admissible as evidence at the trial of another former employee, Timothy Dixon. Prosecutors in the case said they would appeal the ruling and Dixon’s case is now postponed.

According to one news story, the reason the phone videos are out is because the evidence was obtained illegally. The person who found the phone didn’t intend to return it.

I await information on sentencing.

Brian Deer talks back to Andrew Wakefield

7 Jul

I was copied in to the following:

Date: Mon, 06 Jul 2009 18:12:00 +0100
To: “Joanna Bower”
From: Brian Deer
Cc: Thoughtful House

Ms Joanne Bower,
RadcliffesLeBrasseur LLP

Dear Ms Bower,

Your client, Dr Andrew Wakefield, has published, and caused to be published, on his website, thoughtfulhouse.org, and on other sites, false claims that the Press Complaints Commission has issued an “interim order” concerning my investigation into his conduct. Dr Wakefield claims that The Sunday Times has been ordered by the PCC to remove my stories about him from its website.

I understand that the PCC has written to your client to point out that these claims are untrue. In fact, all of my stories concerning him are available at the Times Online website.

thoughtfulhouse.org is unquestionably controlled by Dr Wakefield, and his publication there has caused similar untruths to be published on websites either directly controlled for his interests, such as cryshame.org, which, as you may know was set up by Mrs Isabella Thomas, the parent of two of the children anonymised in the now-infamous Lancet MMR paper, or indirectly controlled for his interests, such as ageofautism.com, operated to promote and profit from concern over children’s vaccines.

It is, of course, nothing new for Dr Wakefield to mislead the public, and especially the parents of autistic children. He has faced the longest ever proceedings before a General Medical Council fitness to practise panel, following the GMC’s reinvestigation of my journalism. In due course, I’d expect he will face a hearing of the PCC, covering much of the same ground on a significantly different evidential base.

However, you may feel it advisable to explain to your client that either he accepts the untruth of his latest claims and takes them down, or he maintains them in publication, in which case his conduct would not merely be wrong, but would be dishonest.

With best wishes,

Brian Deer

http://briandeer.com

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