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NIH to Spend $60 Million in Stimulus Funds on Autism Research

By Emily P. Walker, Washington Correspondent, MedPage Today

WASHINGTON, March 25 -- The National Institutes of Health (NIH) announced it will devote $60 million of its $10 billion in economic stimulus money to fund research on autism.

It's the largest chunk of research dollars ever devoted to the disorder and will be split into four grants to support broad research into autism spectrum disorder, according to NIH. Topics of research might include developing and testing screening tools for various populations; assessing risk from prenatal or early life exposures; and treatments for older children, teens, and adults with autism.

Grant recipients will be expected to contribute their data to the National Database for Autism Research, NIH's data-sharing repository for autism studies. All money allocated from the stimulus bill must be spent within two years, but most clinical trials on autism will likely take longer than that. The NIH wants the funding to "jump-start" longer-term autism research efforts, and it will help the economy -- the original goal of the stimulus bill -- by maintaining and creating biomedical jobs, according to the release.

The money comes at an opportune time, said Thomas R. Insel, M.D., director of the National Institutes of Mental Health, which will lead the research effort. "We have a growing sense of urgency to help the increasing number of children being diagnosed with autism spectrum disorders," said Dr. Insel, who also chairs the NIH's Interagency Autism Coordinating Committee.

Autism research may see an even bigger dollar infusion soon. President Barack Obama proposed allocating $211 million to the NIH's parent organization, the Department of Health and Human Services, for autism research in his 10-year budget outline. (See: President's Budget Offers Hope for a Fix on Medicare Payment Mechanism)

Autism Insurance Reform Bill Passed in New Mexico

New Mexico Becomes the 9th State
to Pass Autism Insurance Reform

NEW YORK, NY (March 20, 2009) -- State legislators passed Senate Bill 39, which requires insurance companies to provide coverage of evidence-based, medically necessary autism therapies. The bill passed the House today (Monday, May 20, 2009) in a vote of 51-15, following unanimous passage in the State Senate, and now heads to Governor Bill Richardson’s desk for signature into law.

The New Mexico bill requires insurers to cover up to $36,000 a year for treatments and therapies, including Applied Behavior Analysis therapy for children until age nineteen, or age twenty-two if the individual is enrolled in high school. The bill also sets a maximum lifetime coverage limit of $200,000. Applied Behavior Analysis (ABA) is recognized as an effective, evidence-based treatment for children with autism. The law specifies that there cannot be any limit put on the number of visits to an autism service provider and that the maximum per year benefit will be adjusted annually for inflation.

"I am elated with the final passage of SB 39 today. It truly was a win for the autism community of New Mexico and the heavy lifting was done by our families living with autism 24/7. All I did was carry the bill," said State Senator Clinton D. Harden, "But this won't be my first entrance into this arena. I was thrilled to find out that the individuals who opposed the bill did so because it did not include insurance for the public sector. I am excited and encouraged to have their support to expand this coverage during the session next year."

In many states, insurers explicitly exclude coverage of these therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Eight states – Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina, and Texas – have passed similar autism insurance reform bills. Twenty-four states have introduced bills this year, and New Mexico is the first to pass.

“With the passage of this legislation, New Mexico joins the ranks of states that have recognized the unfair and unreasonable burden being imposed on families of children with autism,” said Elizabeth Emken, Autism Speaks Vice president for Government Relations. “Autism insurance reform has gained significant national momentum. Legislatures across the country are introducing and passing bills that put an end to the discriminatory practices by insurance companies against children with an autism diagnosis.”

The passage of this legislation was the result of a grassroots advocacy effort led by hundreds of committed families with the support of local and national advocacy organizations.

“For too long, New Mexico’s families have been financially devastated by the lack of insurance coverage for therapies their children needed,” said Gay Finlayson, autism advocate and mother of two adults with autism. “It’s not everyday that the autism community gets a win in the fight to improve our children’s lives. This is truly an historic moment for families in our state who worked so hard to get this bill passed.”

Senate Bill 39 was sponsored by State Senator Clinton D. Harden (R-7) in the New Mexico State Senate. A similar bill, House Bill 155, was introduced by SState Representative Joni Marie Gutierrez (D-33).

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Urge your Representative to Support 2010 Autism Appropriations

As the fiscal year 2010 budget works its way through Congress, it is vital that appropriations are included for autism spectrum disorders.

Please take a minute this afternoon to ask your member of the U.S. House of Representatives to sign on to the Coalition for Autism Research and Education (CARE) appropriations requests for $211 million for autism in the Labor, Health and Human Services, and Education budget and $15 million for autism in the Department of Defense budget.

We are asking that the Labor, Health and Human Services, and Education Subcommittee provide full funding for the 3rd year of the Combating Autism Act (CAA) in 2010. Implementation of the CAA is critical, because it directs the Department of Health and Human Services to begin coordinating all of the activities among its agencies that work on autism, including National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration.

For Fiscal Year 2010, the CAA authorizes a total of $211 million for a variety of critical autism activities, including:

1. $20.5 million for the CDC to conduct its Developmental Disabilities Surveillance and Research program;
2. $47 million in the HRSA account for HHS to carry out autism education, early detection, and intervention programs; and
3. $143.5 million for the HHS Secretary and the NIH to operate the Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on ASD, and fund and review autism centers of excellence.

We are also asking that the Department of Defense Appropriations Subcommittee provide $15 million for autism research in the Research and Development of Defense Health Programs account. Many military families are touched by autism - based on current prevalence rates, as many as 12,000 children in military families (active duty, reserve and guard) may have autism. These families are substantially affected by the financial and emotional costs of raising a child with autism. In fact, given the frequent duty station changes and social turmoil of military service, military children with an autism spectrum disorder often face additional challenges with which their civilian counterparts do not have to contend. Care for dependents with autism is also a significant direct cost to the Department of Defense.

To help improve the lives of all affected by autism, simply take a moment and click here to send an email to Congress today.

Thank you for your suppport of this important issue.

Sincerely,

Lee Grossman
President & CEO
Autism Society of America

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APRIL IS AUTISM AWARENESS MONTH

World Autism Awareness Day is April 2nd!
Here are some easy ways to promote autism in your community:

• Ask your city’s Mayor to sign a Proclamation declaring April 2nd as World Autism Awareness Day and April as Autism Awareness Month. Click here.
• Encourage a school to sponsor an event, highlight books about autism or hold a reading session. Try these activities. Then donate the books about autism that you've finished to your local library. Here is a list of books.
• Use World Autism Awareness Day to start a Student Club at your school. Click here for more tips.
• Are you a Team Captain for the Los Angeles Walk? Send an e-card to your fellow team members encouraging them to fundraise. Or send an e-card to your donors with an updated link to your fundraising page.
• Encourage your employer to engage in one of the attached corporate activities. Click here.
• Ask a local business that you frequent if they will do a "Puzzle Piece Campaign" for the month of April. We are happy to provide you with free posters and individual puzzle pieces. All the business owner has to do is collect $1 (or more) and display the pieces around the store, restaurant, etc. This gives them great community support visibility and is a super fundraiser for your personal or team efforts.

See all of the creative ways you can celebrate the day by visiting www.worldautismawarenessday.org.

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ACT Today! Golf Tournament Benefits Underprivileged Children with Autism

YOU'RE INVITED!

Autism Care and Treatment's
3RD ANNUAL
GOLF TOURNAMENT FUNDRAISER
Monday, May 18, 2009
Braemar Golf Course - Tarzana, CA

DOWNLOAD REGISTRATION FORM

The 18-hole tournament, on May 18th, begins at 9:30am with breakfast, followed by a Putting Contest (10:30am) and Shotgun Start (11:00am). Sponsorships for teams of four ($800) are available for the May 18th tournament. Golfers are also welcome to register as individual participants ($250).

FOURSOMES REGISTER TODAY!

INDIVIDUALS REGISTER TODAY!

A wide range of both team and skill-related prizes will be awarded, along with and 50/50 raffle and other prizes and gifts during the evening’s dinner gala.

ACT Today! wishes to thank Tournament Dinner Hosts Actor/Director Lou Diamond Phillips and Los Angeles Newswoman Gabriela Tessier. Corporate Sponsors include TWIW Insurance, Carole Young Brooke Foundation, Hope Wine, CodeMetro, Metromint, Anhueser-Busch; Kirsch, Kohn & Bridge, Center for Autism and Related Disorders, KitsonLA, and many, many more!

Please return this registration form by April 30, 2009.

Please visit : www.act-today.org/golftourney

Autism Patients in California Dealt Insurance Setback

The Department of Managed Health Care declines to require carriers to pay for applied behavior analysis, an expensive therapy that insurers contend is an educational service, not medicine.

By Lisa Girion, LA Times

California regulators said Monday that insurers must provide speech, occupational and physical therapies to their autistic members but rejected pleas to require insurers to cover the cost of behavior therapy that aims to help patients live in society.

At issue is so-called applied behavior analysis, a therapy that teaches patients skills such as self-feeding and stopping injurious behaviors such as head banging. The therapy can cost as much as $70,000 a year per patient.

Parents of children with autism have argued in lawsuits and in complaints to regulators that insurers, by refusing to pay for an array of autism care, are ignoring the Mental Health Parity Act. The 2000 state law requires insurers to treat mental conditions the same as medical conditions.

Autism is the fastest-growing serious developmental disability in the U.S., more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined. There are an estimated 185,000 Californians with autism.

The state now treats about 37,000 significantly impaired autistic children, delivering a variety of services, including applied behavior analysis -- at a cost of more than $320 million a year.

The disorder impairs communication and socialization and is often marked by repetitive behaviors such as rocking and head banging. Its cause is unknown, and there is no cure.

The state's major insurers and HMOs routinely refuse to pay for applied behavior analysis, arguing, most recently, that it is an educational service, not medicine. The insurers also say that covering applied behavioral analysis will drive up premiums for everyone, although studies from other states have found such increases to be minimal.

Parents disputing the denials have been winning appeals to regulators in recent months as research on the effectiveness of the therapy has become more widely recognized.

In 15 of 16 recent disputes over insurance denials of applied behavior analysis for individual children, state-impaneled physician-reviewers have declared the therapy to be medically necessary. Those decisions required the insurers to pay for the treatment. The 16th case is pending.

The Department of Managed Health Care stepped into the controversy Monday, sending insurers a letter seeking to clarify their coverage obligations to cover autism and related disorders.

Parents lauded the department for making it clear that insurers must cover speech, physical and occupational therapies for their autistic members. But they were disappointed by its failure to address applied behavioral analysis.

Some said the letter set up the likelihood that parents would have to fight case by case to convince the department that the therapy should be covered. Only if they won that round would parents be able to take their case to an independent medical review panel, where they have been winning.

If not, it could be game over for parents.

"I have a problem with their staying silent on the most effective therapy," said Bay Area parent advocate Kristin Jacobson.

"Does every child who needs insulin -- or cancer treatment -- have to take it all the way to the Department of Managed Health Care?" she said. "This is the only thing where every family has to fight it every time. And that didn't stop today."

Applied behavior analysis teaches skills by breaking them down into numerous steps and drilling them with positive reinforcement.

Some studies have shown that as much as 47% of children who receive the therapy are able to enter school with no further intervention and few, if any, symptoms of the condition, said Gina Green, executive director of the National Assn. of Professional Behavior Analysts.

Eight states have laws that explicitly require insurers to cover certain autism treatments. In California there is no specific autism law. But autism is one of the conditions that was supposed to be addressed by the Mental Health Parity Act.

State officials defended the plan. "We're doing all we can within the limits of the law to make sure what should be covered is covered," said Tim LeBas, assistant director of the Department of Managed Health Care's Office of Health Plan Oversight.

Department spokeswoman Lynne Randolph acknowledged that the department would review coverage denials for applied behavior analysis case by case, trying to distinguish medical applications of the therapy from educational ones.

"We would say yes in certain instances," she said.

Kaiser Permanente and other insurers have vigorously opposed an interpretation of the law requiring them to cover the therapy.

The department's letter said it would develop regulations to formalize the requirements on insurers and to "provide additional clarity through an open and public process."

Kaiser said Monday's letter was "a step forward" but left some issues unresolved.

Charles Bacchi, interim president of the California Assn. of Health Plans, said the trade group looked forward to gaining further guidance through ongoing regulatory audits with individual insurers, as well as through the development of new regulations.

The courts may influence the course of autism coverage as well. Kaiser is the target of two proposed class-action lawsuits that accuse the company of violating the Mental Health Parity Act and other laws by routinely denying medical care, including applied behavior analysis, to its members.

Scott Glovsky, a Pasadena lawyer representing Kaiser members in one of the suits, said it was a shame that the department failed to address applied behavior analysis therapy.

"ABA is what children with autism spectrum disorders need the most," he said.

The decision applies to insurance policies held by more than 21 million Californians and supervised by the Department of Managed Health Care. That includes health maintenance organizations and some preferred-provider organizations offered by several companies, including Kaiser, Anthem Blue Cross, Blue Shield, Health Net and PacifiCare.

Harvey Rosenfield, founder of Consumer Watchdog, a Santa Monica advocacy organization, said the department might have crossed the line on "underground rule-making" by trying to change the rules by letter rather than through the formal adoption of regulations, which is a public process.

"This is a state agency winking at the HMOs and inviting them to deny claims to autistic children," Rosenfield said. "This is going to be a license to steal for the HMOs, and they are giving it away without even holding a hearing, which is just an outrage, and also, I think, illegal."

What do you think about this latest development?
Share your comments below.

Help Get the ABLE Accounts Act Passed

Dear Autism Advocate,

The ABLE Accounts Act of 2009 – or Achieving a Better Life Experience Act – has been introduced in Congress. S.493 and H.R. 1205 will encourage individuals with autism and other disabilities and their families to save, tax-free, for disability-related expenses. Similar in many respects to existing 529 college savings plans, these accounts will be exempt from federal taxation, provided certain rules are met.

Robert Casey (D-PA), Orrin Hatch (R-Utah), and Christopher Dodd (D-CT) introduced S. 493, with Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS) signing on as the bill’s original co-sponsors. Senator Ander Crenshaw (R-FL) introduced the companion bill in the House, H.R. 1205, with Congressmen Patrick Kennedy (D-RI), Cathy McMorris Rodgers (R-WA), and Kendrick Meek (D-FL) joining Crenshaw as original cosponsors.

How to Get ABLE
Accounts Act Passed

1. CALL YOUR FEDERAL SENATOR AND HOUSE REPRESENTATIVE

Let them know that you are a constituent and that these bills will help your family.

CLICK HERE TO FIND THE NAME OF YOUR FEDERAL LAWMAKERS

2. SEND EMAILS TO YOUR FEDERAL LAWMAKERS

Urge them to co-sponsor the ABLE Accounts Act.

3. STAY INFORMED

CLICK HERE TO STAY INFORMED - AT AUTISMVOTES.ORG

Receive updates and alerts about the ABLE Accounts Act and other autism legislation.

4. PASS IT ON

FORWARD THIS EMAIL TO FRIENDS AND FAMILY!

Let everyone you know hear about the introduction of the ABLE Accounts Act.

Make sure to visit

www.AutismVotes.org/able

Elizabeth Emken
Vice President, Government Relations
Autism Speaks

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Gene Could Link Autism to Digestive Problems

By Liz Szabo, USA TODAY

Researchers are studying a gene that may cause both autism and gastrointestinal disorders, a study in Monday's Pediatrics reports.

More than 30% of people with autism also have some kind of stomach or intestinal problem, compared with fewer than 10% of people who aren't autistic, says study author Daniel Campbell, research assistant professor at Vanderbilt University.

Campbell is focusing on a gene called MET, which is involved in brain development before birth and in connections between brain cells after birth, as well as in the process through which the gastrointestinal system repairs itself. In his study, a variation in this gene was associated with both autism and gastrointestinal problems in 118 of 214 families. But researchers found no link to the genetic variation in autistic patients who didn't have gastrointestinal problems.

That suggests the genetic variation may be responsible for causing autism in this specific group of people, although it may not be related to other cases of autism, Campbell says.

As scientists learn more about the disease, Campbell says, it appears that autism is not a single disease but a spectrum of disorders with common symptoms but different causes.

Campbell's research was financed by the National Institutes of Health, a private group called Cure Autism Now and other sources.

Some researchers say Campbell's findings, although intriguing, are preliminary.

Hakon Hakonarson, an autism researcher and director of Children's Hospital of Philadelphia's Center for Applied Genomics, says it would be surprising for one gene to be responsible for the wide variety of problems included in the study: chronic constipation, chronic diarrhea, reflux, irritable bowel syndrome and ulcers.

Researchers need to try to replicate their findings in a different group of people to prove that the results were not just the result of chance, says Hakonarson, who was not involved in the study.

Campbell says he's working on a more definitive study. In his current paper, he relied on parents to describe their children's gastrointestinal difficulties. In his new project, children will be seen by a gastroenterologist, who will be able to confirm the gastrointestinal problems.