Date:	Saturday, January 8th (always the 2nd Saturday of each month)
	Time:	1:00pm-4:00pm
	Topic:	Two Topics: Who Pays for What? & Managing your Child's Records Presented by Lisa Ackerman “Who pays for what” will detail the funding resources for: traditional therapies (such as ABA , speech, occupational therapies), biomedical intervention and alternative interventions. “Managing your child's records” will provide a follow up overview on tracking the myriad of details year after year for your special needs child. Get tips and tricks on managing the mountain of paper for quick reference and review as important clues to your child's needs.
	Place:	VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa
		(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.) And remember, we are still a non-faith based group!
	IMPORTANT NOTE: TACA is also providing A SECOND MEETING in the evening for January!
		Thursday, January 27, 2005 Tomatis Sound Listening Therapy Presented by: Dr. Deb Swain – Swain Center / www.swaincenter.com Time: 6:30 pm – 8:30 pm Fee: Free – no RSVP required
	Directions:	405 FWY South, Exit Bristol Right on Bristol Left on Baker Go under FREEWAY. The Vineyard Church is on the corner just after the freeway - turn left onto the freeway access road, make FIRST right into the Vineyard's parking lot.

TACA Has 7 Southern California Meeting Locations:
1.	Costa Mesa:	2nd Saturday of each month (info in item #1 for meeting topics and details)
2.	West Hills:	(the Valley, man) 1st Sunday of every month, 7-9 p.m. Location: Jumping Genius – 22750 Roscoe Blvd., West Hills (the corner of Roscoe Blvd. & Fallbrook Ave.) Info: Contact us
3.	San Diego:	4th Tuesday evening – 6:30- 8:00 p.m. Info: Contact us
4.	Corona:	3rd Saturday – Time: 1:30–4:30 p.m. For more info: Contact us (New location starting February 2005)
5.	Torrance:	3rd Monday of each month at Whole Foods Market on PCH in Torrance Time: 6:30 - 9:00 p.m. For more info: Contact us
6.	Visalia:	3rd Wednesday of month Time: 6 p.m. "Happy Hour" with GFCF snacks and coffee 6:30-8:30 p.m. Speaker Location: Kaweah Delta Multi-Service Center Auditorium, 402 W. Acequia, Visalia. Information: Please contact Lynne Arnold
7.	Santa Rosa:	(typically) 2nd Tuesday of each month at Swain Center – 795 Farmers Lane, Suite 27, Santa Rosa – 7:00 - 8:30 p.m. For more info: Contact us

Article A: Congressman Burton needs your help and stories

The beloved and autism advocate Congressman Dan Burton of Indiana has asked us to spread the word that he is asking parents of children with autism spectrum disorders to send in their personal stories. Please answer these specific questions:

1) When was the onset of autism?
2) What were the surrounding circumstances?
3) What are the hurdles you face in attempting to secure appropriate educational placements and services?
4) What are the hurdles you face in attempting to secure or access insurance coverage/benefits? What are your child's prospects for the future?

Congressman Burton will be personally reading these stories, and selecting representative samples to be read by him on C-Span. Please send in your stories to Congressman Burton, as follows:

Congressman Dan Burton
8900 Keystone Crsng. #1050
Indianapolis. , IN46240

Please be sure to note at the bottom left of your letter "Autism Family." That will make it easier for the Congressman's staff to cull out these stories.

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Article B: To Treat Autism, Parents Take a Leap of Faith

By BENEDICT CAREY, The New York Times

Desperate parents of autistic children have tried almost everything - hormone injections, exotic diets, faith healing - in the hope of finding a cure.

But more than 60 years after it was first identified, autism remains mystifying and stubbornly difficult to treat. About the only thing parents, doctors and policy makers agree on is that the best chance for autistic children to develop social and language skills is to enroll them in some type of intensive behavioral therapy.

A government-appointed panel has endorsed such therapies, which can cost $40,000 to more than $60,000 per year. Parents fight to get their children placed in behavioral programs, encouraged by the claims of some therapists that they can produce astonishing improvement in up to 50 percent of cases. An estimated 141,000 children with autism receive special education services, in many cases including behavioral therapies, through public schools.

Yet the science behind behavioral treatments is modest at best. Researchers have published very few rigorously controlled studies of the therapies, and the results of those studies have been mixed. While some children thrive, even joining regular classrooms, the studies have found that most show moderate or little improvement. And researchers say most parents now experiment with so many alternative treatments - including vitamins, diets, sensory therapies and computer games - that they muddy the results of behavior treatment, making it very hard to say what is causing a child to gain skills or to decline.

The most recent analysis of treatment research, financed by the National Institutes of Health and scheduled to be published next year, concludes that although behavior treatments benefit many children, there is no evidence that any particular treatment leads to recovery. Doctors do not yet know how to predict which children will improve in the treatments, or even how treatable the condition is, the report concludes.

"If so many kids are being cured, then where are they? Who are they? Show me 10 percent," said Dr. Bryna Siegel, director of the autism clinic at the University of California , San Francisco . "The reason practitioners can't show you all these kids is because there simply aren't that many of them out there."

Questioning the Evidence

No one disputes that behavioral therapies can be transforming: parents are deeply committed to them, and most experts emphasize their successes, saying that they are the best option now available.

But others say the evidence is not as solid as it is sometimes made out to be - a view echoed by some health insurers, who have refused or limited coverage for treatment. And politics, the experts say, sometimes gets in the way of a frank evaluation of how well the programs work.

"We're at a point," said Dr. Susan Hyman, an associate professor of pediatrics at the University of Rochester Medical Center, "where questioning the evidence behind them is like criticizing your grandmother's matzo-ball soup."

Behavioral treatment programs come in several varieties. A therapy called applied behavior analysis is the most studied and most commonly used. In this approach, the therapist begins by working one on one with a child, often 20 to 40 hours a week, to build social and language abilities in very small steps - by rewarding the youngster with a treat for learning words, for example, or for sitting still or greeting someone.

A state-financed program in North Carolina, known by the acronym TEACCH (its full name is Treatment and Education of Autistic and Related Communication Handicapped Children), uses pictures and schedules, among other techniques, to keep children focused and interacting with others, and to take advantage of their visual skills. It is taught in classrooms, by trained teachers, or in special clinics, and is provided free throughout the state.

FloorTime, another popular option, has teachers and parents on the floor, following a child's lead in interactive play to develop emotional connections. Other approaches, including the Denver Model and Pivotal Response Training, blend rewards for specific behaviors with play techniques and schedules. These have also helped children improve.

In a 2001 report, a National Academy of Sciences panel convened by the federal government evaluated all the research and concluded that treating children as early as possible, and giving them at least 25 hours a week of therapy, was more important than the specific name-brand approach used. Parents' involvement in the treatment was especially helpful, the report said.

In some states, parents have fought legal battles with school districts to get such programs paid for. Many parents hire therapists to come to their homes; others move to other states to get better services.

"We redesigned our entire third floor to look just like the TEACCH classroom," said Inga Sawyer, whose 5-year-old son and 3-year-old daughter use TEACCH methods in Carrboro , N.C. , near Chapel Hill . "Both of them thrive on the structure, and it has been really helpful in organizing their day" and mainstreaming them in school, she said.

Belief Versus Proof

But believing in the programs is one thing; proving how well they work is another. Researchers say traditional studies are difficult to carry out. The therapies are extremely time-consuming, and some parents, unwilling to take a chance on less-than-optimal therapy, refuse to let their children be part of the control groups that are essential for scientific research. Even the most well-known and rigorously studied brand of behavioral therapy, the Lovaas method, appears to be less effective than was originally hoped, and its record in studies is mixed.

Named after its inventor, Dr. O. Ivar Lovaas, a psychologist at the University of California , Los Angeles , the method is taught from manuals and is a version of applied behavior analysis that demands close tracking of children's day-to-day behavior. In the original program, therapists would at times slap children on the thigh when they did not behave as instructed, a punishment that was phased out in the late 1980's.

In 1987, Dr. Lovaas reported in a small study that 9 of 19 children who received up to 40 hours a week of his intensive therapy were classified as functioning normally after at least two years. Only 2 percent of children in a comparison group that received a less intensive version of the therapy did as well.

In a follow-up paper in 1993, Dr. Lovaas reported that those initial gains had held up through age 12 or 13 in the children, bringing a sense of hope and possibility to a field that had known mostly resignation.

Yet in 2000, a team of researchers who had trained with Dr. Lovaas tried to confirm the findings and could not. After receiving 20 to 30 hours a week of the Lovaas method for two years, only 2 of 15 children in the study reached the highest level, scoring at age level on all measures and entering regular classrooms without help, according to the study's lead author, Dr. Tristram Smith, an assistant professor of psychology at the University of Rochester. No children in the control group reached the same level, he said.

Children in the study who had full-blown autism, as opposed to a less severe disorder, did not show significant improvements as a group in most areas, compared with children who were given less intensive therapy, the study found.

Dr. Lovaas, now a professor emeritus at U.C.L.A., said in an interview that the most likely explanation for the modest findings was the quality of the therapy being delivered. "I don't know why the results were so different, but my best guess is that they did not deliver the treatment as skillfully as we do here," he said.

Yet in a review of the most recent research, accepted for publication in The Journal of Clinical Child and Adolescent Psychology, Dr. Sally Rogers, director of the MIND Institute at the University of California , Davis , wrote of that study: "This type of treatment is considered by many to be the treatment of choice for lower functioning children with autism. Yet the best designed study of this treatment, carried out by experts in the method, did not demonstrate improvement in the treated group of children with the full syndrome of autism relative to controls."

In an interview, Dr. Rogers said that the Smith study by itself was too small to be conclusive, and that less rigorous trials suggested many children in intensive therapies made moderate gains in language ability and other areas, even if they did not overcome the underlying disabilities.

In one such trial, Canadian researchers found that when they taught parents how to encourage play and communication, children showed a significant gain in language skill after just three months, compared with other autistic children treated in community day care. A 2002 Norwegian study of 25 children ages 4 to 7 found that the Lovaas treatment prompted I.Q. gains of 17 points, although no child was described as recovered, according to the review. In other work, researchers who have followed children through TEACCH, the Denver Model and other programs have also noted accelerated gains in I.Q. and language, among other things.

"You are talking about therapies that can raise I.Q.'s by 10 to 20 points, which is significant, and very hard to do," Dr. Rogers said.

The Fundamental Question

Still, scientists have not answered perhaps the most fundamental question about these therapies: Why does one child thrive in treatment while another, equally affected, does not?

Most researchers have hypotheses. Some believe the response could have to do with structural properties of the brain, which would show up on brain scans. Others suspect that children who do not do well in treatment have a subtle language processing problem in addition to autism.

In his long experience, Dr. Lovaas said, he has observed that children who do not learn to imitate others' speech within a few months of treatment rarely do well. And researchers in San Diego have proposed that having a basic ability to initiate social interaction is crucial to success in treatment: they found that children who tried to engage their peers frequently during a short play period did very well in therapy.

Each of these ideas is under investigation. "I expect with more research we may find that there are two groups of children - one group that does well in directed teaching, and another than needs a biomedical treatment," said Dr. Geraldine Dawson, director of the autism program at the University of Washington in Seattle . "And we would be able to tell them apart."

But teasing apart such subtle differences in language and brain structure requires careful control, and that is one thing autism researchers do not have. With doctors emphasizing the importance of early treatment, parents of autistic children hear the clock ticking and try anything they can find. Three new surveys, of a total of 2,500 parents in North Carolina , Massachusetts and Pennsylvania , found that about three-quarters of families dealing with autism try alternative treatments, usually as an accompaniment to structured counseling programs.

One of the most popular options, tried by 50 percent to 70 percent of parents, is sensory integration, a technique in which therapists often use swings or weighted vests to help "ground" a child, and even brush children's skin with a special brush.

About 25 to 40 percent of parents, the surveys find, try special diets for their children, most often a menu free of gluten, a protein found in flour, and casein, a protein in dairy products, which some people believe prompt an allergic reaction that causes or worsens autism.

Many parents (10 percent to 30 percent) give their children large doses of vitamins like magnesium and B6 or food supplements, based on reports that these regimes have normalized behavior in some cases. And up to 10 percent of parents have paid to have their children go horseback riding, swim in a pool with dolphins or receive healing touch therapy as part of a program for autism.

Scientists say they do not have rigorously controlled evidence that any of these alternative treatments improves the core symptoms of autism: social isolation, repetitive behaviors and difficulty in developing language skills. In the surveys, parents generally agreed: individual treatments often helped with some behaviors, like agitation, but seldom altered the fundamental disability.

"There's a grief response to a diagnosis of autism; parents go through mourning and denial, and promising them their child will be cured by these therapies gives them false hope and only prolongs the grief," said Dr. Siegel, of U.C.S.F.

In fact, the surveys themselves contain hints of just how frustrated many families are: up to half the parents report that they have put their children on psychiatric medications, including antidepressants, stimulants like Ritalin and antipsychotic drugs usually prescribed for schizophrenia. These drugs can settle some of the symptoms associated with autism, like aggression, but they do not alter the underlying condition and can play havoc with some children's moods, doctors say.

In the coming years, experts say, the science of treatment should become much clearer. The National Institutes of Health is financing some 70 studies related to treatment, including a careful study of the popular gluten- and casein-free diet, being conducted by Dr. Hyman in Rochester . And a group in Wisconsin has completed a trial of Dr. Lovaas method among 23 children, and there are 10 other sites working on similar studies, according to Dr. Lovaas and Dr. Smith, who is coordinating the research. The results from these trials, they say, look encouraging.

Still, many parents who have brought autistic children to adulthood are not holding their breath. Having tried some treatments and watched others flare out, they say change is certainly possible. But that change tends to be slow, they say, and occurs not just in their children but also in their own expectations and ways of coping.

With the help of the TEACCH program, Alice Wertheimer's son David has continued through high school in special classes, learning over time to communicate, to be comfortable with himself, to have some independence. At 18, he is a young man who enjoys repeating lines from favorite movies, mimicking other students and teachers, and spending time with his parents. As a child, Ms. Wertheimer said, David rated somewhere in the middle of the autism scale, but he has come a long way. He is also still clearly autistic, although that is not how those who know him think about it.

"He is who he is," Ms. Wertheimer said, "just a great, great kid."

Letters to the author can be sent to:
Daniel Okrent – Public Editor – public@nytimes.com
Laura Chang – Science Editor – chang@nytimes.com

Note: author's article do not represent the feelings of TACA

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Article C: Great Online Video courses for AUTISM

On behalf of everyone at Dan Marino Foundation, we thank you for logging-on and watching Childnett.tv.

Launched in 2004, www. Childnett.tv is a first-of-its-kind Internet TV channel dedicated to autism and other neuro-developmental disabilities. Childnett.tv is a free resource for parents and professionals, which broadcasts interactive programs 24/7. We invite you to TUNE IN NOW to see the latest therapies, research, treatments, and personal stories.

COMING SOON
› Potty Training
› Dan Marino: His son, his success
› Treating Problem Behavior
› Autism Research: Where we are and where we're going
› Home Video: A tool for success
› A Parent's Guide to the IEP Process
› Let's Talk: A Guide to Communication
› Play Skills: A Lesson for the entire family

PLUS

› Live Webcasts
› New Features

Contact Us
Email: Childnett.tv@danmarinofoundation.org

Or write to:
Dan Marino Foundation
P.O. Box 267640
Weston , FL 33326

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Article D: Battling Insurers over Autism Treatment

Battling Insurers Over Autism Treatment                                   
By MILT FREUDENHEIM                                                       
                                                                     
It took Beverly Chase 14 months of fighting with her health plan, Cigna Behavioral Health, to get payment for autism treatments for her 4-year-old son, Jake. This, despite considerable leverage on her side: a state law in Indiana , where she lives, requires insurers to pay for the behavioral therapies that parents say can produce
striking improvement in autistic children.
                                      
Cigna did not respond to her request for months, and later argued that her son's therapist was not properly accredited. Even after the plan agreed to contribute to the costs, Mrs. Chase, who lives in Avon , Ind. , said she still had to make $500 a month in co-payments.
 
"In Indiana the law is on your side," Mrs. Chase said, "if you have the tenacity, the mental health and the stability" to insist on the benefits, adding, "It is not an easy road."
     
With an estimated 425,000 autistic children in the United States , parents are increasingly demanding that insurers pay the bills for treatment. But most insurers say that such treatment has not been proved effective by scientific tests and that therapists often do not have sound credentials. 
    
Even in the 17 states where autism coverage is required by law, insurers often drag their feet on payment or avoid it in individual cases by questioning the qualifications of the therapist or even a doctor's affirmation that treatment is medically necessary.
   
Autism is a poorly understood brain disorder that impairs the ability to communicate, form relationships and tolerate change.
                     
The kind of intensive therapy that Mrs. Chase has arranged for her son was first developed in the 1970's. The approach, called applied behavioral analysis, breaks learning into tiny components and uses elaborately prescribed behavioral teaching techniques, initially with one teacher for each child. Toddlers begin by learning to imitate a simple action and eventually go on to more complex things like having a conversation or engaging in pretend-play activity.
                                                       
For the parents of these children, winning the insurance battle is crucial because therapy can easily run into tens of thousands of dollars a year over many years. And the window of opportunity for treatment may be small: most experts say that the younger the child, the greater the response to therapy.
  
Several states, among them California , Texas , New Jersey and Connecticut ,  require health plans to cover treatment. Many of these state mandates, typically enacted despite stiff opposition from insurers and employers' groups, are rooted in state laws passed since the late 90's that required  mental health coverage comparable to benefits for physical ailments. Employers and insurers have said that they plan to lobby legislatures in  Indiana and other states to repeal the requirements for autism coverage next year.
   
Yet state mandates do not necessarily translate into coverage.            
   
Insurers have long raised objections about the very nature of autism  treatment. Edward Jones, a senior official of PacifiCare Behavioral Health and chairman of the American Managed Behavioral Health Association, an insurance industry group, asked, "Is this really an educational service or a therapeutic service?"
 
A diagnosis for autism is included in the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric  Association. Treatment of some kind for most disorders in the manual is covered by health plans.
 
According to Mr. Jones, though, "most people feel it is a biological, neurological disorder, but that cannot be proven." He added that "we don't seem to have any biological treatment for autism."                        

Mr. Jones also said that some autistic children may have depression or attention deficit disorder, as well, and can be covered for the cost of drugs for those conditions.
  
Years ago, as many as 90 percent of children identified as autistic were institutionalized as adults. Beginning in the 1970's, researchers started reporting striking progress made by autistic children who had received intensive behavioral therapy.
    
A small study involving 19 children and 40 more in control groups published in 1987 found that half of a group of autistic children who received up to 40 hours a week of intensive behavioral therapy were  classified as functioning normally after three years of treatment. Only 2 percent of the children in the control group reached that level.                                                               
                   
Other studies of that treatment approach have also reported positive results for many children, but researchers have had difficulty setting up studies of statistically comparable groups, including some willing to forgo the intensive therapy.     
 
"We couldn't leave the house when Anthony was 2," said Beth T. Sigall, who lives in northern Virginia . "If it were not for the therapy, there was simply no way we could have had a respite from caring for him. Now he is 5, in kindergarten and can function like a 5-year-old."                   

The one-on-one applied behavioral therapy part of Anthony's treatment has been completed. Now he receives speech and occupational therapy and help at home with reading and handwriting. But Mrs. Sigall said her Blue Cross plan still owed her $12,767 for therapy from February 2003 to January 2004.
 
Cases like that of Anthony Sigall are not enough to convince most insurers that autism treatments - even if a doctor says they are necessary - should be covered. Also, officials at most health plans are unwilling to talk about their coverage for fear of attracting families with expensive needs. A spokeswoman for Cigna said that under federal privacy rules, the company could not discuss the specifics of Mrs. Chase's fight to obtain coverage. 
    
Parents say treatment costs often exceed $25,000 a year, forcing some families to drain college and retirement savings and take on second mortgages.                                                           
   
For insurers, the problem is that while "behavioral therapy may be helpful for kids in certain ways," Mr. Jones said, "there really isn't evidence at this point to support that it is effective for autistic kids in general." 
  
Still, he acknowledged that "we know there are ways that kids can benefit from early interventions, school-based intervention, combinations of speech therapies, occupational therapies."
   
To help resolve the debate, Mr. Jones said the industry association is now "looking for two well-controlled studies by two independent research teams to validate that it is effective." 
    
The first results from a randomized study - overseen by researchers from the University of Rochester Medical Center involving intensive therapy for 150 children, 3 1/2 or younger at the start, at 11 private and university-affiliated autism centers - have been accepted for publication in a professional journal.
     
A separate randomized clinical trial with 48 children, 18 months to 24 months old at the start, is under way at the University of Washington , with funds from the National Institute of Mental Health, said Geraldine Dawson, director of the university's autism center in Seattle . "We have reason to believe, based on the research, that early intensive behavioral intervention is quite effective for many kids with autism," she said.     
  
Not every child responds to the program, Ms. Dawson said, but some children who receive early intensive behavioral therapy make significant progress and are then able to go into a regular classroom.                
    
Insurers say that even if the treatments are effective, there are too few people trained in the field. Autism therapists, Mr. Jones said, "often are not licensed professionals."
   
"It may be somebody with a bachelor's degree," he added, though that may be changing as autism treatment becomes more common. The University of Washington's autism center, for example, is training people with graduate degrees to design programs for individual children and to train and supervise certified paraprofessionals who provide the therapy in a child's home, Ms. Dawson said.
    
There are similar training programs at other schools, including the   University of Rochester , U.C.L.A., Rutgers and universities in Kansas , Texas and Michigan .   
  
Across the country, a handful of self-insured employers including Microsoft, Eli Lilly, the Arnold & Porter law firm in Washington and Agere Systems, are paying for applied behavioral therapy.
   
Microsoft provides services with a somewhat flexible three-year cost limit of $70,000 for every family that has an autistic child, a company spokeswoman said. The three-year coverage includes 85 percent of costs up to 180 visits with a program manager and 1,350 visits with a therapy assistant, she said.
    
"I never see a bill, it all goes straight to our insurance plan," a Microsoft employee, Erin Brewer, said. Her daughter Morgan, 4 1/2, goes to a free preschool where half the children are autistic or have other special needs. Ms. Brewer said she felt lucky. "I feel like I'm working for the benefits," she said.
     
Richard Fade, a senior vice president at Microsoft who has an autistic child, persuaded the company to cover such treatments. Mr. Fade and his wife, Susan, also gave $5 million, matched by the Bill and Melinda Gates Foundation, to the University of Washington to help finance Ms. Dawson's work.
  
Traditional health plans, by contrast, have very limited or no coverage, said Kenneth Sperling, a health care specialist at Hewitt Associates, the big benefits consulting firm based near Chicago . Visits may be limited to 60 a year.
     
Blue Cross officials in Maryland and Indiana , for example, said they covered autism therapy in those states, where the legislatures have  required it. But they said they did not pay for behavioral therapy in states where it is not required. Similarly, Cigna said it covers treatment for autism "in states where it is mandated" and for employers that request the coverage. In Minnesota , which requires the coverage under a mental health law, some insurers have paid in varying degrees for autism therapy.
    
While waiting for the outcome of clinical trials, some private insurers have pushed parents to seek care through special-education classes in schools and reimbursement from state Medicaid programs, both of which vary widely across the country.
   
The Maryland education department, for example, pays for as much as 30 hours a week, including time at school, of one-on-one therapy for 900 children with varying degrees of autism, as long as they meet annual eligibility criteria. But the Maryland program does not have enough money to cover 3,184 other students with autism. Louisiana , with less money, could not even find psychologists willing to accept the state's low payments, said Nell Hahn, a disabilities lawyer in Lafayette , La.          
    
The federal government has come down on both sides of the debate over payments. TriCare, the health system for the military, requires coverage for behavioral therapy for the children of parents on active duty. But the Federal Employees Health Benefits Program is resisting efforts by a group of families in northern Virginia to add autism therapy to the list of required benefits.
                                                                     
The group of families said the surgeon general's Web site indicated that 30 years of research had demonstrated the effectiveness of applied behavioral methods, and studies in the last 10 years showed positive outcomes with very young children with autism.
  
But the Office of Personnel Management, which runs the federal employees' benefits program, dismissed the treatment as inadequately proved. In a letter in October to Representative James P. Moran, Democrat of Virginia, John C. Gartland, an official at the personnel office, said an unnamed consultant had indicated that behavioral therapy "has not been proven in randomized experimental trials as beneficial."                            
  
The argument over coverage is so fierce because 90 percent of private insurance is still aimed at serving healthy people, said Jeffrey Crowley, a health policy researcher at Georgetown University . And autism, like certain other conditions, said Sara Rosenbaum, a professor of health law at George Washington University , "is on the outer limits of what the commercial insurance market will handle."

NOTE: This family is a TACA family that used to live in Southern California , now living in Indiana . Great job, Beverly ! AND REMEMBER – the State of California has a similar law to Indiana called AB 88. For more information on that law, please see: http://www.tacanow.com/36_AB88.htm

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Article E: AUTISM ONE starts a radio station just for Autism

Dear Autism One Community Member -

Autism One Radio
I am tremendously pleased to let you know about the upcoming launch of Autism One Radio, a worldwide, web-based, autism radio station for the care, treatment and recovery of children with autism.

We will begin broadcasting Tuesday, January 11, 2005 . It works much like a radio, but you listen on your computer. And because its on the web everyone in the world can tune in. There are no geographic boundaries; there are no FCC rules and regulations; there are no vested interest groups to hijack our message. Folks can listen from Michigan to Melbourne and every spot in between. Our voice will be heard worldwide.

The media has mangled the message Mainstream media has made a mess of autism. There is not one useful piece of information the public can take from these reports. Parents are more confused than ever after listening to most broadcasts.

News stories typically identify a child and a mother struggling to cope. The diagnosis was autism; the prognosis is known - lifelong and forever. A little boy or girl, shown toe-walking, is receiving an hour a week of speech therapy. Interviewed doctors discuss psychotropic drugs and the big promise of genetic research in ten to twenty years. A puzzled school official admits the county has experienced an explosion in autism over the last decade-why? who knows-proudly pointing to a new classroom for children with autism and Down syndrome. As an added bonus, the official declares, every child with autism will receive free snacks from the school cafeteria. Could this mainstream media hair shirt get any worse? You bet!

Officious-sounding professionals talk about the increased circumference of our children's heads and brain inflammation airily dismissing any new research, science, or interventions which do not directly benefit them. County health personnel explain how greater public awareness and better diagnosis, unlike the bad-old days, is identifying children before they "fall through the cracks." In hushed tones, mostly reserved for the deceased, a round of thank yous from the anchor to the reporter for filing this important story. Six months later the same story airs with a different cast of characters, identical, however, in its destructive message to parents, "We have it under control and there is nothing more you can do to help your child."

Mainstream communication channels burdened by agencies and agendas which are at best inept and at worst antithetical to autism continue to force feed our community retro-1960s messages of hopelessness. Empathetic "we feel your pain" stories are not a suitable substitute for reporting on effective treatments which help our children and real issues.

Unfortunately, our community has always lacked an ability to respond, educate, and advocate in real time. Flat-footed, we are reduced to a defensive posture. Left unchallenged many ideas gain currency and become accepted as fact.

Web Radio
Text is fine for many things. Documents, however, are not well suited to reach and teach parents, professionals, and a public struggling to understand the many uncertainties of autism.

Voices reach deeper than text. Voices teach, nourish, calm, and nurture making complex ideas understandable. Talk is our common denominator. Voices are rich in ways text cannot begin to capture. While the web does a tremendous job in getting information to parents, asking a mom, overcome with exhaustion, to read a 20-page medical report to understand the benefits of omega-3 is not the best
answer.

By their nature documents can discourage response. Documents are static and formal. Voices are active. Talk encourages the free flow of ideas, education, and greater understanding.

The flexibility of web-based radio will allow us to broadcast live from events as they happen, like IOM meetings and congressional hearings. As wireless becomes increasingly popular folks will be able to listen on their laptops and palm tops. Cars will soon be manufactured with web-radio receivers.

A New Normal Is Needed
Our children get better. Our enemies are time and ignorance; our allies are treatments and therapies. Hope is real. Recovery is real. Education is necessary.

The rate of discovery for treatments which help our children is quickening. We need to get this information to our community and the public. Each day issues which impact our community are decided, often without our involvement and to our detriment. We need to amplify the thousand separate conversations into a message our entire community can hear.

Bigger truths are necessary to help our children and families; truths not found on TV, radio, newspapers, almost all magazines, most school districts, in the medical establishment and among the various government agencies. Institutions have largely failed our community.

Yet we continue to make progress. We plan to be a powerful voice of change, bringing you the most up to date information. We will launch with over 45 programs, hosted by many of the best and the brightest in our community. We plan to expand and include hosts from the UK ,  Ireland , Australia , New Zealand , all over. The rate of autism in Turkey is now 1 in 200 (which is probably conservative).

Over the coming weeks we will be in a position to provide you with more details and specifics as to schedules and additional program hosts.

As always, please let me know if you have any questions, comments, suggestions, or ideas. I look forward to your feedback. Thank you.

My Best,
Edmund Arranga 714.680.0792 http://AutismOne.org earranga@autismone.org

Article A: New Study Links Risk of Autism to Mercury in Vaccines (Environment News Service)

WASHINGTON, DC, December 20, 2004 (ENS) - In a paper published this week in the "American Journal of Clinical Nutrition," researchers at the University of Arkansas identified a signature metabolic profile in autistic children that suggests these children are more susceptible to the harmful effects of mercury and other toxic chemicals than or than other children or adults.

Some vaccines given to infants and children are preserved with thimerosal, which is half mercury by weight, and parents worry that these vaccines, including flu shots, may trigger autism in their children.

Now new evidence that strengthens that theory has been found.

Lead author on the new study is Dr. Jill James of the University of Arkansas for Medical Sciences. James served for 14 years as a senior research scientist with the Food and Drug Administration and is currently professor of pediatrics at the University of Arkansas for Medical Sciences.

Published in the December issue of the "The American Journal of Clinical Nutrition," the purpose of the study was to evaluate the concentrations of eight metabolites in the plasma of children with autism.

Twenty children with autism and 33 control children participated in the study. Researchers measured methionine, S-adenosylmethionine (SAM), S-adenosylhomocysteine (SAH), adenosine, homocysteine, cystathionine, cysteine, and oxidized and reduced glutathione.

Relative to the control children, the children with autism had statistically significantly lower baseline plasma concentrations of methionine, SAM, homocysteine, cystathionine, cysteine, and total glutathione.

They had significantly higher concentrations of SAH, adenosine, and oxidized glutathione.

James and her team concluded that this metabolic profile indicates an increased vulnerability to oxidative stress - destruction caused by free radical molecules - and this pattern "may contribute to the development and clinical manifestation of autism."

In addition, the James team found that the plasma profile of the 20 autistic children studied shows a decreased capacity for methylation - a process essential for the normal development and functioning of organisms.

The Environmental Working Group of Washington , DC , which has been researching this issue as well, says James' findings show that autistic children have a common weakened ability to protect themselves from the effects of small amounts of toxic metals in their bodies.

"The autism epidemic is alerting us to the importance of individual susceptibility to environmental pollutants," said Richard Wiles, senior vice president of the Environmental Working Group.

"Environmental safeguards that protect a theoretical average person still leave thousands at risk," said Wiles. "Increased understanding of susceptibility will provide the basis for stronger health policies that truly protect the most vulnerable."

A review published earlier this year by the National Academy of Sciences Institute of Medicine concluded that the available science showed no mercury-autism link. But the review left the possibility open that vaccines preserved with mercury might trigger autism in a small subset of susceptible children. James and her team examine the issue of susceptibility in a small subpopulation, with the conclusion that the blood balance of this small population made it more susceptible to mercury in vaccines than other children are.

"The findings raise serious concerns about autistic children's overall exposure to environmental contaminants," said the EWG. "Mercury is of particular significance because of its proven toxicity to the developing brain and nervous system, and its documented high exposures from a variety of sources such as canned tuna, dental fillings and vaccines preserved with mercury based thimerosal."

In October 1998, the U.S. Food and Drug Administration (FDA) banned the use of thimerosal in over the counter medications. Since July, 1999, the FDA has encouraged manufacturers to remove thimerosal from vaccines. Not all manufacturers have complied.

Today, most vaccines that are being manufactured do not contain thimerosal, or they only contain a trace. But old thimerosal products are still on the shelf and may be used until stocks are gone.

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Article B: The National Institutes of Health: Public Servant or Private Marketer?

Doctors have long relied on the NIH to set medical standards. But with its researchers accepting fees and stock from drug companies, will that change? A continuing examination by The Times shows an unabashed mingling of science and commerce.

By David Willman LA Times Staff Writer December 22, 2004
http://www.latimes.com/news/printedition/front/la-na-nih22dec22,1,2079044.story
< http://www.latimes.com/news/printedition/front/la-na-nih22dec22,1,2079044.story?coll=la-headlines-frontpage >

For 15 million Americans, it is a daily ritual: gulping down a pill to reduce cholesterol.

They do it because their doctors tell them to. Their doctors, in turn, rely on recommendations from the National Institutes of Health and its scientists, such as Dr. H. Bryan Brewer Jr.
Brewer, as a leader at the NIH, was part of a team that gave the nation new cholesterol guidelines that were expected to prompt millions more people to take the daily pill. He also has written favorably of a specific brand of cholesterol medication, Crestor, which recently proved controversial.
What doctors were not told for years is this: While making recommendations in the name of the NIH, Brewer was working for the companies that sell the drugs. Government and company records show that from 2001 to 2003, he accepted about $114,000 in consulting fees from four companies making or developing cholesterol medications, including $31,000 from the maker of Crestor.
Brewer was far from alone in taking industry's money: At least 530 government scientists at the NIH, the nation's preeminent agency for medical research, have taken fees, stock or stock options from biomedical companies in the last five years, records show.
NIH Director Dr. Elias A. Zerhouni has told Congress that outside work should be allowed if "the scientist is giving advice in an area ... that is not part of his official duties."
Information gathered by a congressional committee, in addition to company records and 15,000 pages of government documents obtained by the Los Angeles Times under the Freedom of Information Act, shows that NIH researchers have repeatedly crossed Zerhouni's line.
For example:.  Dr. P. Trey Sunderland III, a senior psychiatric researcher, took $508,050 in fees and related income from Pfizer Inc. at the same time that he collaborated with Pfizer -- in his government capacity -- in studying patients with Alzheimer's disease. Without declaring his a ffiliation with the company, Sunderland endorsed the use of an Alzheimer's drug marketed by Pfizer during a nationally televised presentation at the NIH in 2003.
Dr. Lance A. Liotta, a laboratory director at the National Cancer Institute, was working in his official capacity with a company trying to develop an ovarian cancer test. He then took $70,000 as a consultant to the company's rival. Development of the cancer test stalled, prompting a complaint from the company. The NIH backed Liotta..  Dr. Harvey G. Klein, the NIH's top blood transfusion expert, accepted $240,200 in fees and 76,000 stock options over the last five years from companies developing blood-related products. During the same period, he wrote or spoke out about the usefulness of such products without publicly declaring his company ties.
Announcing such ties is not required by the NIH. The agency has encouraged outside consulting, and has allowed most of its scientists to file confidential income disclosure forms.
Supported by the taxpayers at a cost this year of $28 billion, the NIH oversees research with a mission to extend healthy life and to reduce "the burdens of illness and disability." The laboratories and offices of most NIH scientists are at the agency's woodsy, 300-acre headquarters in Bethesda , Md. , nine miles north of the White House.
The scientists at the NIH -- seen by many outsiders as neutral government experts -- advise federal regulators and write hundreds of articles for influential medical journals. Some travel the world encouraging doctors to prescribe a particular medication.

The flow of drug industry fees and stock options to NIH scientists was disclosed in December 2003 in an article in The Times. The article also explained the bureaucratic means by which most of the payments had been kept secret from Congress, the public and the nation's doctors.
Subsequent inquiries this year by Congress have shown that even Zerhouni, the NIH's director, did not know the extent to which agency scientists were being paid by industry.
When leaders of the House Energy and Commerce Committee felt the NIH was not complying with a request to identify every drug industry payment, the panel went directly to 20 companies. Those responses revealed more than 130 consulting deals with industry that did not appear to have the required NIH approval. One of them was the $508,050 relationship between Sunderland , the Alzheimer's researcher, and Pfizer.
Other documents obtained this year by The Times, including programs of industry meetings for physicians that featured NIH scientists as speakers, reveal dozens more relationships not reported as approved by the agency.
The companies, in marketing their products, have frequently cited the NIH's reputation for high scientific standards. The cholesterol guidelines, for example, have been widely circulated by makers of anticholesterol drugs.
Dr. Curt D. Furberg, a former head of clinical trials at the National Heart, Lung, and Blood Institute and now a professor at Wake Forest University in North Carolina , explained how such information reached physicians: "The [company] reps tell the doctors, 'You should follow these guidelines,' implying that you're not a good doctor if you don't follow these guidelines."
Often NIH involvement is featured, while the government researchers' links to the companies go unmentioned.
When Brewer, the cholesterol researcher, praised Crestor in a medical journal in 2003, the article identified him as an NIH scientist, not as a paid consultant to the manufacturer. In marketing Crestor to doctors, the company cited Brewer's findings without mentioning that he was on its payroll.
As leader of the NIH, Zerhouni has acknowledged that some past deals have been improper. But he has also argued for allowing most agency scientists to consult privately for industry. Close government-industry cooperation, he says, can help bring important products to market. He has also said that the supplemental income from industry fees can help the NIH retain talented scientists.
Others disagree. Dr. Marcia Angell, the former editor of the New England Journal of Medicine, said in an interview that doctors and patients counted on NIH scientists for "their critical, scientific, dispassionate judgment."
"When they have financial ties to the companies that make the products that they're supposed to be impartial about, we can't assume that," Angell said.
Dr. Philip R. Lee, who served Presidents Lyndon B. Johnson and Bill Clinton as an assistant secretary of Health, said that every NIH scientist should be prohibited from taking industry money.
"Damn it, if you work for NIH, you're not working for a drug company, you're working for the public," Lee said. "When you have people who have a split allegiance, undisclosed to the public, to me it is just unthinkable."
'Should Have Mentioned It'
As chief of the National Heart, Lung, and Blood Institute's molecular disease branch since 1976, Brewer is one of the nation's leading experts on cholesterol.
With his rimmed glasses and shock of sandy hair, he has the bearing of an accomplished scientist and the credentials to match. Born in Casper , Wyo. , he gained his medical degree from Stanford University and received further training at Massachusetts General Hospital . Now 66, Brewer has a manner that is both authoritative and plain-spoken.
But when Brewer wrote a medical journal article in 2003 helping to introduce Crestor, he did not inform doctors about a potentially lethal safety risk.
The product was about to be launched in the United States by AstraZeneca, a British company that had put Brewer on a scientific advisory board and paid him $31,000 from 2001 through 2003, according to NIH records. In the Aug. 21, 2003 , American Journal of Cardiology, Brewer wrote that Crestor "produced markedly greater reductions" in cholesterol levels than three established competitor drugs tested in clinical trials. That was true. But Brewer also concluded that Crestor's "benefit-risk profile ... appears to be very favorable," and that proved to be questionable.
Brewer assured doctors there was no basis for worry about a muscle-wasting side effect called rhabdomyolysis, which can cause kidney failure and death. (Another anticholesterol drug, Baycol, was removed from the market in 2001 after at least 31 deaths related to rhabdomyolysis were reported.)
Brewer wrote: "No cases of rhabdomyolysis occurred in patients receiving [Crestor] at 10 to 40" milligrams. But eight cases of rhabdomyolysis were reported during clinical trials of Crestor. One of the case reports cited a patient who took the drug in 10-milligram doses, according to records filed with the Food and Drug Administration and reviewed by The Times under the Freedom of Information Act. Sales representatives for AstraZeneca have routinely provided copies of Brewer's journal article about Crestor to doctors nationwide, a company spokeswoman confirmed last week.
The FDA received 78 reports of rhabdomyolysis among patients taking Crestor during its first year on the market, FDA records show. Two of those patients died.
In contrast to Brewer's opinion in August 2003, an editorial two months later in the Lancet, the prominent British medical journal, said: "Physicians must tell their patients the truth about [Crestor] -- that, compared with its competitors, [Crestor] has an inferior evidence base supporting its safe use."
In March of this year, a U.S. consumer group, Public Citizen, called for banning Crestor based upon several cases of kidney failure or muscle damage. AstraZeneca defended its drug as safe and effective in print and television ads this fall, adding that FDA management agreed. But on Nov. 18, senior FDA epidemiologist Dr. David J. Graham told a Senate committee that the safety of Crestor needed reassessment. After Dr. Sidney Wolfe of Public Citizen questioned Brewer's ties to AstraZeneca and his depiction of Crestor's safety, Brewer sought to explain himself in a July 9 memo to NIH Director Zerhouni.

Brewer told Zerhouni that he had not mentioned seven of the rhabdomyolysis cases because those patients had received doses of Crestor higher than the approved level. As for the patient who took the drug at 10 milligrams, "it was not possible to definitively conclude" that Crestor had caused her rhabdomyolysis, Brewer wrote. Other medical experts said reviewers should report such a serious event regardless of possible cause.
"Baycol had already been pulled for exactly that same side effect and it was a matter of great concern," said Angell, the former editor of the New England Journal of Medicine. "If he knew about it, he should have mentioned it."
Zerhouni sought to distance his agency from the controversy in a written response to Wolfe, suggesting that the NIH had no responsibility for omissions in Brewer's article about Crestor. Brewer had produced it in his "private capacity" as a consultant to AstraZeneca, Zerhouni wrote.
That the article identified Brewer as an NIH employee and directed reprint requests to the NIH was "most unfortunate," Zerhouni added, acknowledging that it "gives the reader the impression that it was done in his Government capacity."
Zerhouni's letter added: "Dr. Brewer has been counseled about these requirements." A spokeswoman for AstraZeneca, Emily Denney, said that Brewer had remained a consultant to the company until April of this year.
AstraZeneca was not the only client of Brewer's who made use of his NIH title. Agency rules have long instructed employees not to use their NIH affiliations for outside consulting work. Nonetheless, Lipid Sciences Inc. of Pleasanton , Calif. , listed Brewer by his title on the company website -- and displayed video clips of Brewer that showed the entrance to his federal workplace, the NIH Clinical Center .
In the clips, Brewer appeared in his white lab coat, telling viewers, "Currently, there are a number of excellent new drugs that have come out." In late November, after The Times submitted questions to Brewer about his role with the company, Lipid Sciences removed the video clips and all references to Brewer from the website.
The company, which is developing a product that would remove cholesterol from human cells, paid Brewer $83,000 from 2002 through 2003. As of September 2003, his consulting contract with Lipid Sciences was to pay him $125,000 annually plus stock options, according to a filing with the Securities and Exchange Commission. The company reported in March that Brewer, who until recently served on its board of directors and scientific advisory board, held 411,927 stock options.
Brewer also has taken consulting fees from Pfizer, the maker of Lipitor, the nation's biggest-selling cholesterol pill. From 2001 to 2003, Pfizer paid Brewer fees totaling $55,500, according to NIH records. Brewer has been among the many agency employees whose annual financial reports were kept confidential by the NIH.
Brewer's other duties have included serving with the agency-sponsored National Cholesterol Education Program, which issued aggressive guidelines for reducing cholesterol in 2001, and revised them in July of this year to call for even wider use of cholesterol drugs.
Eight of the nine authors of the guidelines, including Brewer, had financial ties with companies that marketed cholesterol drugs -- but their connections were not mentioned in their report, published in July by the medical journal Circulation. Following criticism from consumer advocates, the NIH posted on its website a listing of the authors' financial ties.
Dr. David L. Brown, chief of cardiology at the State University of New York at Stony Brook, said the interpretations of data in the cholesterol recommendations should not be trusted because the NIH panel was "in the pocket of the drug companies."
Brown was among 22 physicians who wrote to Zerhouni in September, questioning the 2001 guidelines and the revisions this year. NIH officials said they stood behind the recommendations.
Brewer, whose annual government salary is $187,305, referred questions submitted by The Times to an NIH spokeswoman, Diane Striar, who said Brewer's paid consulting arrangements for four drug companies had been approved in advance.
As of this month, Brewer "no longer serves on any advisory boards of pharmaceutical companies," Striar said, adding that the agency would not comment further. Brewer, after accepting consulting payments from companies for several months this year, had stopped doing so by this fall, records show.
Meanwhile, anticholesterol pills are the biggest-selling category of prescription drugs in America , with sales last year of $14.7 billion. Under the current guidelines, the number of Americans taking the medications may more than double, to 35 million, according to NIH estimates.
Winning Over Its Critics -The pharmaceutical bonanza that has swept the country in the last decade has created one of the most influential lobbies in Washington . A total of 3.5 billion prescriptions -- medicating about 129 million Americans -- were filled last year. Drug industry revenue in the U.S. tops $231 billion annually. The drug companies donated $41 million to candidates for federal offices in the last four years, according to the Center for Responsive Politics.
"The pharmaceutical industry has never been more powerful than now," said Rep. Henry A. Waxman (D- Los Angeles ). "The companies have made investments in the people who have power in Washington . And they've gotten a very good return on those investments."
In the last 12 years, the companies have secured passage of legislation that fast-tracked FDA approvals of new drugs and transformed the agency into a more compliant partner of industry.
And when congressional critics surface, the industry has a way of winning them over: This year's top two recruits had recently launched a congressional investigation of conflicts of interest at the NIH.
Rep. W.J. "Billy" Tauzin (R-La.), as chairman of the House Energy and Commerce Committee, had cited "secret consulting fees and stock options from drug companies" to NIH scientists as a reason for requesting that the agency produce documentation of all the payments. Tauzin, who did not seek reelection, was hired this month to be the president of the Pharmaceutical Research and Manufacturers of America, the group that represents the nation's largest drug companies.
Rep. James C. Greenwood (R-Pa.), who led three hearings this year on NIH conflicts of interest, had criticized the agency for allowing its scientists to use "a swivel chair" to make government decisions while taking drug company fees. In July, Greenwood announced that he would give up his position as chairman of the Energy and Commerce subcommittee on oversight and investigations and retire from Congress to become president of the Biotechnology Industry Organization -- a group that urged policymakers this year not to prohibit NIH scientists from paid consulting deals.
In the face of such industry influence, leading the NIH has become more complicated. Zerhouni, the agency's director, is an expert in magnetic resonance imaging. He also knows the value of moonlighting: While serving as executive vice dean of the Medical School at Johns Hopkins University , he co-founded a Maryland company that developed and marketed devices to enhance the usefulness of MRI scans.
He was trained as a physician in his native Algeria . With a gently accented English and a propensity to say that he agrees with members of Congress even when they pose pointed questions, Zerhouni, 53, has projected affability while addressing the NIH's conflicts of interest.
When he was appointed by President Bush in March 2002, Zerhouni inherited an agency whose scientists were avidly pursuing private consulting.
Although historically separate from industry, the NIH by the late 1980s was allowing some limited outside arrangements. In November 1995, the consulting gate was swung wide open by then-Director Harold E. Varmus in an internal memo, which was first made public in December 2003 by The Times.
The Varmus memo "immediately" lifted all limits on outside income, reversed the prohibition against taking stock or stock options, and freed the top leaders -- the directors of the research institutes and centers -- to start making personal deals with companies.
At the same time, arcane rules wielded by NIH administrators were allowing more and more of the deals to remain confidential.
Following The Times' report, Zerhouni was summoned to Capitol Hill on Jan. 22 by the Senate appropriations subcommittee for health issues.
Zerhouni initially told the panel that the NIH had "not identified any situations where outside activities resulted in undue influence" on official decisions. The subcommittee's chairman, Sen. Arlen Specter (R-Pa.), warned Zerhouni that far-reaching, internal investigations would be needed to ensure that conflicts of interest did not exist.
Zerhouni said he would impose tighter controls. Henceforth, he said, the consulting deals of all NIH employees would be subjected to "independent peer review" by a newly created ethics committee.
He also said he was appointing a blue-ribbon committee to "completely review" the NIH's policies on conflicts of interest. But Zerhouni added that "instead of having a complete one-size-fits-all rule, I think the rules should be different" depending on the employee's rank or authority to oversee research grants.
Zerhouni's position sought to keep the agency's many influential laboratory or branch chiefs, such as Brewer, Sunderland , Liotta and Klein, eligible for outside consulting.
Two months later, Zerhouni's blue-ribbon panel recommended what he wanted. It called for barring the institute directors and their top administrators from outside consulting -- while allowing 5,000 or more staff scientists, including all the laboratory and branch chiefs -- to take payments from industry. The panel also recommended, and Zerhouni said he supported, an agency wide ban on taking stock or stock options from biomedical companies.
Most NIH scientists should be allowed to consult, Zerhouni said, because such arrangements helped "translate" discoveries from NIH labs into products that could help patients.
"You can have a policy that says, 'All right, all prohibited.' But how does that help the public, in terms of translating the discoveries in our laboratories into real things?" Zerhouni told reporters.
For years, the agency has had procedures for formal collaborations with industry -- but they prohibit NIH scientists from taking the companies' money. The formal agreements have resulted in at least 1,300 collaborations with biomedical companies over the last 20 years, agency records show.
On the other hand, the public record is bereft of products "translated" from NIH labs to patients through private consulting contracts. No such evidence was presented during days of testimony this year before the NIH blue-ribbon panel or congressional subcommittees.
By midyear, the failure of the NIH to produce a full accounting of its ties to industry had spurred bipartisan criticism in the House. On May 12, the new chairman of the House Energy and Commerce Committee, Rep. Joe Barton (R-Texas), warned Zerhouni to lift the agency's secrecy and to relinquish all records documenting drug industry payments to NIH scientists.
The panel's senior Democrat, Rep. Peter Deutsch of Florida , told Zerhouni at the same hearing: "I would urge you in the strongest possible terms to end the practice today of NIH researchers taking anything of value from a drug or a biotech company."
Zerhouni endorsed some additional restrictions, including ceilings on compensation that employees could accept from industry and the amount of time they could devote to outside activities. While NIH employees could still accept fees to sit on companies' scientific advisory boards, they would be barred from serving on boards of directors.
But a July report by the U.S. Office of Government Ethics concluded that the NIH was beset by a "permissive culture." The office found that 40% of the 155 outside payments to NIH employees it sampled randomly had not been approved in advance or accounted for within the agency.
Zerhouni proposed another compromise: a one-year "moratorium" on industry consulting. Details of the moratorium have not been completed.
Last month, nearly 200 NIH researchers said in a letter to Zerhouni that a permanent ban would make the scientific staff -- who are paid between $130,000 and $200,000 a year by the government -- "second-class citizens in the biomedical community."
Dr. Raynard S. Kington, a deputy NIH director, said Tuesday that the agency had "moved actually quite fast" to carry out tougher restrictions. Yet he acknowledged that unless new rules were put into effect, perhaps in the new year, the scientists were free to continue collecting stock options and consulting fees from drug companies.
"Fundamentally," Kington said, "we are operating under the same rules."

Times researcher Janet Lundblad in Los Angeles contributed to this report.

6. TACA Survey Update

Only 75 surveys have been collected since August 2004 at the TACA meetings. We would like to hear from you regarding WHAT YOU WANT TO HEAR, what is important to you and your family.

Below is a summary grouped by topic and highest priority of the surveys collected to date. Please be sure to let us know what you want to hear about in 2005. To request your free survey form, please email us

7. TACA MOM IN NEED - Please Read

A TACA family is in great need. If you can help – please help!
Our very own Ruthie Daniels is a 36 yr old TACA single mom just diagnosed with Hodgkin's Lymphoma 2 weeks ago. She just started chemotherapy one week ago. Ruthie will have to complete 6 months of chemo and will need help during the this time. She is a single mom with 2 boys one with autism (Noah) and one with ADHD.

Ruthie's needs are as follows:

•  BABYSITTING / PLAY DATES: Anyone who lives in South Orange County and could take Noah to the park or watch him for a couple of hours between 2:30-4:30 Monday - Friday.
•  THERAPY HELP: If anyone knows a therapist trained in RDI methodology, she will be losing her therapist in a couple of weeks. $20 an hour is the most she can pay, 4 to 6 hours per week at her home.
•  COOKING: Anyone willing to cook gluten free / casein free / specific allergy free meals can contact Julie Landon for complete list of allergies and needs at 949-837-9641. Delivering the meals to the home in Laguna Niguel is appreciated. It would be helpful to cook meals that are easy to freeze, store, and reheat.
•  RUNNING ERRANDS: As she gets weaker, she may need help with grocery shopping and errands and to the pharmacy.
•  CONTACT INFO: Ruthie lives Laguna Niguel. Her number is 949-347-8532. Please do not call late -- she is very tired.

THANK YOU FOR ANYTHING YOU CAN DO TO HELP!

9. Upcoming Fee-based Conferences & Seminars
in Southern California

Parents of Special Needs Children Support Group
We welcome you to attend our group, which wi ll provide education, support, and counseling. This wi ll be a sma ll group setting with opportunity to share your experiences with other parents.

Contact group leaders:
Susan Gonzales, LCSW (310) 770-5009
Karen Cladis, MFT (714) 490-3780
New Group Beginning SOON! – Call for details
Fee: $50.00 per meeting
Time: Mondays 7:30 pm to 9:00 pm
Place: 19732 MacArthur Blvd, Suite 130 Irvine, Ca. 92612

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TASK (Team of Advocates for Special Kids) has some great workshops on a variety
of different topics in different locations.
Check them out at all South County TASK Workshops are held at:
South O.C. Family Resource Center
28191 Marguerite Parkway, Suite 19, Mission Viejo.
Workshops are free!
Reservations are required - Call (714) 533-8275 to reserve your spot!

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“The Development of a "Best Practices" Model of Treatment for Autism." By Dr Doreen Granpeesheh – CARD (Center for Autism and Related Disorders)

This presentation will review some of the significant milestones in research and clinical practice that have brought us closer to developing a "Best Practices" model of treatment.

Meeting time and location:
Monday, January 10 7:00-9:00 p.m.
First Lutheran Church Fellowship Hall 1100 N. Poinsettia Ave
Manhattan Beach, CA 90266

We welcome parents, professionals and anyone else who would like to
attend. Meeting will begin promptly at 7:00 pm . If you have a suggestion for a meeting topic, or would like more information, please email lafeat@excite.com or call toll free 1-866-4LAFEAT.

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February 19, 2005 : The Four Points Sheraton Los Angeles International Airport Hotel
Workshop "Start-Ups for TD-DMPS and RNA/DNA Protocol" with Dr. Buttar   -325 Seats Only!

At The California Ballroom. Registration starts at 7AM , Workshop 9AM to 5PM , and Dinner with speakers at 7PM $80 before January 18th, 2005 ; $100 after January 19th, 2005 ; NO REFUNDS after January 18th, 2005 . Ribbon-Cut for CASD/CCID BioMed Research Lab and Clinic at City of Angeles Hospital in Los Angeles , CA

Private Sessions are available by Workshop Speakers (please see below speakers) from $300 to $400 per hour - contact 512-694-4077 for appointment.

Speakers:

• Rashid Buttar, D.O.    -TD-DMPS Protocol (22 children recovered out of 31 with Dr. Buttar's protocol)
• W. John Martin, M.D., Ph.D.    -Viruses Authority, Director and Founder of Center for Complex Inflectional Diseases (CCID)
• John L Kucera, M.D.    -RNA Therapy and Anti-Fungal Treatments
• Alexander Orlov, D.O.    -RNA/DNA, Oxygen Therapies and Allergies
• David Steenblock, D.O.    –Stem Cell Therapy
• Paddy Jim Baggot, M.D.    -Medical Director at CASD/CCID City of Angeles Medical Clinic in Los Angeles, CA (For appointment with Dr. Baggot, M.D., call 512-694-4077, Dr. Baggot will follow 100% Dr. Buttar and Dr. Amy Yasko's protocols).

Fund-Raising Dinner with Speakers at 7PM : two reasons for the fundraising; #1-CASD is opening the clinic for people with autism (starting January 6th, 2005 ) at the City of Angeles Medical Center Hospital; #2 -TD-DMPS Protocol Research Funds for Dr. Buttar.

Fundraising Dinner Tickets; $60 (regular ticket), $150 (supporter ticket), $500 (clinic sponsor ticket), $1000 (TD-DMPS study sponsor ticket), and $2000 (Dr. Buttar's table).

**If you like to receive this workshop flyer by postal mail, e-mail kazuko@austin.rr.com  

***Sponsors and Exhibitors, contact Kazuko Curtin at 512-694-4077 or 512-306-1920.

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FOURTH ANNUAL CASA COLINA TRENDS IN AUTISM CONFERENCE
SAT. & SUN., MARCH 5 & 6, 2005
This conference will bring together researchers, clinicians and parent leaders who are breaking new ground in the diagnosis, treatment and understanding of autism spectrum disorders.  They will make presentations geared to cover three essential areas: the medical issues and the physiology of the brain relative to autism, effective treatment being practiced today, and prospects for the future for young people with autism.  Physicians, educators, therapists and parents will find valuable information and insights to assist them in working with individuals with an autism spectrum disorder.

TOPICS WILL INCLUDE:
Neurology of autism, information processing, early identification, MRI & imaging, video modeling, direct therapy approaches, behavior management, parents as advocates and making a life for a person with a diagnosis on the autism spectrum.

SPEAKERS WILL INCLUDE:
Margaret Bauman, MD; Blythe Corbett, Ph.D.; Eric Courchesne, Ph.D.; Margaret Dunkle; Temple Grandin , Ph.D.; Nancy Minshew, MD; Suzanne Reyes, Ph.D.; Michael Weiss, Ph.D.; and Rosemary White, OT.

Conference site: Claremont McKenna College Claremont, California
Sponsorship opportunities available Call (909) 596 7733 Ext. 2209 for more information or go to www.casacolina.org
Casa Colina Centers for Rehabilitation 255 East Bonita Avenue Pomona, CA 91769-6001
rehab@casacolina.org Speakers and program subject to change

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Great Plains Labs – Latest in Autism Treatments
Anaheim , CA on June 18-19, 2005 . For more info: www.greatplainslaboratory.com

Welcome to 2005! I hope everyone had a wonderful, safe holiday season! Now it is back to work and our typical schedules for our kids!

TACA is growing more than ever before. As we grow, we are trying to accommodate the needs of the membership by offering more meeting dates and times on a variety of beginning to advanced topics. Be sure to check out the new schedule and join us at the upcoming events!

As a reminder, please be sure to fill out your TACA 2005 speaker series surveys! We want to hear from you! You can email me for your emailable, faxable or mailable copy!

I will be writing up a Jeff update in the next TACA enews. Stay tuned!

Hugs, thanks, and be SAFE,
Lisa A Jeff's mom

And Editor: Kim Palmer (thanks Kim!)