Texas Governor Has Until June 17 To Decide Fate of Autism Insurance Bill

Texas Gov. Rick Perry's staff today told NBC 5 TV News in Dallas that he had not yet made up his mind about signing or vetoing House Bill 1919, which would require health insurance plans in Texas to cover autism services for young children. The station carried a news report visiting with several parents of autistic children, who explained that signing the bill would enable them to provide more services for their kids without having to pay for it all out-of-pocket (or not getting the service at all). See a video of the report by clicking here. Perry must decide what to do by June 17, the TV station said.

You can read past coverage on the Texas proposal here. Click here to read the text of the bill via the Texas Legislature's website.

While the TV report highlights parents who support the bill, the proposal has opponents, too. The Houston Chronicle reported June 5 that The Texas Association of Business has come out against the bill because it would increase health care costs for employers. "We want to leave the discretion up to the employers and let them decide what health plans (to provide) and not the state," a business group spokesman told the newspaper. Read that article here.

Vaccine Court Starts Hearing Autism Case, and Other News Briefs

The United States Court of Federal Claims opened its first test case into the allegation that childhood vaccines such as measles-mumps-rubella shots, or the mercury-containing preservative thimerosal, led to children developing autism. This report from the Associated Press, carried on The New York Times website, explains that the court will hear nine test cases that represent almost 5,000 other vaccine damages claims across the country.

The report foreshadows what is to come in court over the coming months: families whose children have suffered greatly will present evidence that there could be a causal link between the vaccines and their children's condition. Lawyers for the government will argue that the causation theories lack scientific research or factual evidence to support them.

For more background on the vaccine court case, and information about accessing available court records and proceedings, see this article. For The Washington Post's take on the case, see this article. And for a critique of The Post's article and some links to past research studies on the vaccine-autism issue, see this article at STATS.org, the statistical fact-checkers at George Mason University.

More on the 'Epidemic' Debate

Just in time for the court case, The Times also today published an Op-Ed that seeks to debunk the idea that there's an autism epidemic. But while the authors outline a clear thesis, their argument is not new and it's not clear what the piece adds to any public policy debate.

In "A Spectrum of Disputes," by Paul T. Shattuck, an assistant professor at Washington University's School of Social Work, and Maureen Durkin, an epidemiologist at the University of Wisconsin, report that they have analyzed mountains of data, including school records in all 50 states. They have determined that because of relatively recent rules changes (schools started counting autism cases in 1991), and because school and medical records don't necessarily match, it's possible that the nation has become better at counting autism spectrum disorder cases -- and therefore one cannot say there's an epidemic.

Read the article online, for a limited time, by going to the Times site here.

After a long discourse on their research methods and findings, the author's conclude:

We want to be very clear: our results do not mean we have nothing to worry about. Scientific and clinical advances have improved our ability to identify autistic children and to differentiate their unique needs from those of children with other types of developmental disabilities. But schools and other social service systems are unable to keep pace with these changes or give the children the help they need.

Research to discover what causes autism, including possible environmental triggers, must be a top priority. However, autism is not purely a medical puzzle — as we invest in new ways of understanding autism, we have a corresponding responsibility to invest in the capacity of our schools, medical centers and social workers to provide up-to-date treatment for those with the condition and support services for their families. In the end, we should not have to deliver a verdict on whether there is an epidemic to fulfill these obligations.

If we don't have to deliver a verdict on whether there's an epidemic, why bother with this essay, why now? Because the public's attention is focused on the vaccine court case? (The op-ed writers say they fear that the court case will drag out a debate about whether we face an epidemic.)

Do parents and advocates need the label of an epidemic to win support for better treatment options? Does the country need to see that "e-word" to sense the urgency? The article doesn't suggest a thought about this, at least not explicitly.

For more on this subject, see:

Media Picks Up "Unstrange Minds" as Hook to Debunk Cries of "Autism Epidemic"


Good Showing for Autism Documentary

"Autism: The Musical" a documentary that showcases the lives of five autistic children and their families in Los Angeles, took home an audience award at last weekend's Newport Film Festival. That's according to the director, Tricia Regan.

Regan also said in an e-mail message that HBO had agreed to televise the documentary in April 2008.

Read more about the film here.

South Carolina Legislature Overrides Veto to Pass Autism Insurance Law

By unanimous votes in both the House and Senate today, South Carolina lawmakers overrode Governor Mark Sanford's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. The bill takes effect July 1, 2008.

You can read the text of the new law here, via the Legislature's website, and more background about the new law here. The text is known as S. 20 and also as Ryan's Law, in honor of the son of one of the legislation's strongest advocates, Lorri Unumb. Lorri sent a dispatch to a list of supporters, describing the scene in the State Capitol today, when families and other supporters of the autism bill lobbied for an override vote today, less than 12 hours after the governor's late-night veto. She recounts watching the lawmakers in the House chamber, deciding to hold a roll call vote. She writes:

A roll call can be a little dangerous – the governor can see which of his friends cast affirmative votes against his veto – so I got nervous again. As each legislator cast his or her vote, his or her name on the display board changed colors. “Green” meant a vote in favor of the override, and I can’t tell you what color signified a vote to uphold the veto, because there were none! 114 members voted, and, one by one, 114 names turned green on the big board.

And then the tears began to flow. But it wasn’t just Marcella [another mother and advocate] and me crying this time. ... My husband beside me started tearing up. Derrick and Sandrine Howle in the front row were crying. Everywhere I looked around in the balcony, a parent, a grandparent, an aunt, a cousin, a friend of a child with autism was weeping. Just then, all members of the House rose to their feet, turned toward us in the balcony, and erupted into applause. They gave us an emotional standing ovation for the tireless efforts of this grassroots gang, and they clearly felt proud of helping us override what some called a “cruel” veto.

Tears, hugs, and celebrations continued in the lobby of the State House, with senators and legislators coming out to greet and congratulate us. So many expressed the sentiment that they were honored to be part of this effort, which to them represented the political system at its purest – citizens petitioning their government for help and succeeding (though not without great difficulty and heartache).

What's interesting about this victory by autism advocates is the perseverance involved. One can imagine that, over the course of two years spent lobbying lawmakers, there were other things that they might have had to accomplish. While they were explaining to countless people why autism services are important, there could have been doctors' appointments for their children. When they were spending time building awareness about the benefits of such services, and arguing why people across the state should help pay for them, they might have had to work on their kids' individualized education programs. Or home behavior management strategies. Or, perhaps, making a living.

And when the governor vetoed the bill, late at night, Lorri Unumb and her fellow advocates could have folded. But they didn't. They were at the State Capitol less than 12 hours later, urging support one more time. And they won.

So, why did Gov. Sanford veto this bill? Well, as he explains in this veto message (a PDF file), he thought it cost too much, an estimated $10 million in its first year, that would add a projected $48 to the average citizen's health insurance premiums. He also objected to the idea of a government mandate for health care when, in his opinion, the free market is best at keeping costs down and deciding what should be covered. Lastly, Sanford said that the state was spending more on special education services and that these should benefit autistic children and their families.

The governor is a Republican, but so are a majority of members in both the House and Senate. And they, members of both parties, today voted unanimously to override Sanford's veto.

Advocates to Visit South Carolina Capitol after Governor Vetoes Autism Insurance Bill

South Carolina Governor Mark Sanford has vetoed legislation that would amend the state's insurance rules to provide for autism services coverage. This news comes tonight from Lorri Unumb, a leading advocate for the bill called "Ryan's law" and named for her son who has autism. The bill had large margins of support in both the state House and Senate, so advocates may lobby for a veto override.

More information when it becomes available.


For background, see:

South Carolina Lawmakers Poised to Pass Autism Insurance Bill

Special Federal Court to Hear Autism Case on June 11

The online archive of documents in the "Autism Docket" at the United States Court of Federal Claims shows a list going back five years, though the claims that vaccines cause autism are older than that. This special court in Washington, D.C., set up by a 1986 act of Congress, exists to hear claims that vaccines cause injuries. On Monday, June 11 at 9 a.m., in a 450-seat courtroom, lawyers will begin presenting evidence to support their argument that the measles-mumps-rubella (MMR) vaccine, when administered with other vaccines containing the mercury-containing preservative thimerosal, cause children to develop autism. (Find information about following the court proceedings at the end of this article.)

As this piece in the June 5 edition of the legal news site Law.com explains, the so-called Omnibus Autism Proceeding is a historic legal case, a test of the 1986 law designed to reward damages to people injured by vaccines while holding drug companies who make the vaccines harmless (the government collects money for a vaccine damages fund). One reason this case is such a big deal is the scale: approximately 4,800 autism cases pending at the vaccine court, far more than any other type of injury.

A scan of some recent documents in the Autism Docket shows how difficult it can be to collect thousands of people's cases into one legal process, as the judges, or special masters as they are called, have been trying to do in this case. On Monday, the lawyers in the court will be arguing just one child's test case (that of Theresa Cedillo, in a case called Cedillo v. Secretary of Health and Human Services), and just one theory of vaccine injury (the theory that MMR vaccine+thimerosal in vaccines=autism). Other theories include MMR vaccine by itself causes autism and that thimerosal-laced vaccines cause autism, and the court expects to hear those later, according to this update published May 25 (it's a 9-page PDF file).

And as many readers will know, there have been a number of studies by government and academic researchers which have failed to find a vaccine-autism link. At the same time, strong voices like those of David Kirby, the author of Evidence of Harm, and advocacy groups such as SafeMinds.org, have emerged to cast doubts on those research efforts and the motives of the researchers and organizations involved. (See this press release, "University of Missouri Study on Link Between Autism and Mercury a Discredit to Sound Science," for a recent example. The university's own press release about its research, "Study Finds No Link Between Autism and Thimerosal," is here.)

The dueling press releases are but a symbol of the media battle that's been playing out for some time, and which we should expect to pick up in the coming days as the court session begins.

It's begun already. This piece in The Boston Sunday Globe warns Americans that the autism vaccine case, if it goes the wrong way, threatens the whole vaccine industry; the author argues that negative judgments and big plaintiff awards discourage drug makers from investing in new vaccines -- even though they don't have to pay the vaccine damages themselves. And Arthur Allen, the author of a recent book celebrating the history of vaccines, warns in this piece in Slate.com that because the special vaccine court's legal standards lack the rigor of the scientific community, it's not hard to imagine the autism plaintiffs winning big. (He also takes some proponents of the autism-vaccine link to the verbal woodshed.)

You can listen to the court proceedings for yourself, or read court session transcripts, starting June 11. Go to the court's website and register for access to a live, via-telephone, audio feed. Or access transcripts promised to be posted in a timely manner. Find information on audio feeds, and to register, click here. For other information, see this court website.

Also see:

Scientists Raise Voices Against Autism Parents' Vaccinophobia