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Monday, June 15, 2009 Reader Supported |
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ACTION ALERT: To Our California Readers: An Urgent Call to Action from the Lanterman Coalition -- Our Supports Are Being Dismantled! Please Act Today www.sarnet.org/doc/Lanterman.doc PUBLIC HEALTH MMR Causes "Autism" – Another Win In US Federal Court By childhealthsafety. is.gd/11Siv Julia a three year old US citizen has just won substantial compensation in the US Federal Court for autism-like conditions caused by MMR vaccine – says her mother. What is different about this case? They kept the “autism” word out of the case. Many parents in other US cases have been advised to do this by their US attorneys in order to succeed: [Vaccine Court: Autism Debate Continues - Robert F. Kennedy, Jr. and David Kirby 24 Feb 2009 is.gd/11SqK ] Julia’s Mom says:- ". . .after Julia’s last neuro appointment when her doctor said she had signs of autism. I didn’t want that 'word' in her records until Julia’s case was decided. "Julia’s diagnosis was 'Encephalitis (inflammation of her brain) most likely attributed to the MMR-V (measles, mumps, rubella, chicken pox) vaccine she had received nine days previously.'" If this is what compensation means for Julia’s Mom think of all the families and children who should never have got sick in the first place and will never get compensation just because they used the “autism” word. Julia’s Mom says she was: "Accepting the loss of the world as I knew it before she got sick, before my divorce, before I lost my house. "This is such a huge, huge, huge help for Julia and my family" + Read more: is.gd/11Siv NOTE: We will provide more details on this ruling as it becomes available. -editor. DO SOMETHING ABOUT
AUTISM NOW
 . . . Read, then Forward the Schafer Autism Report. $35 for 1 year - or free! www.sarnet.org • • • Lawmakers Reveal Health-Care Investments Key Players Have Stakes in Industry By Paul Kane, Washington Post is.gd/11Rrw Almost 30 key lawmakers helping draft landmark health-care legislation have financial holdings in the industry, totaling nearly $11 million worth of personal investments in a sector that could be dramatically reshaped by this summer's debate. The list of members who have personal investments in the corporations that will be affected by the legislation -- which President Obama has called this year's highest domestic priority -- includes Congress's most powerful leaders and a bipartisan collection of lawmakers in key committee posts. Their total health-care holdings could be worth $27 million, because congressional financial disclosure forms released yesterday require reporting of only broad ranges of holdings rather than precise values of assets. Senate Majority Leader Harry M. Reid (D-Nev.), for instance, has at least $50,000 invested in a health-care index, and Sen. Judd Gregg (R-N.H.), a senior member of the health committee, has between $254,000 and $560,000 worth of stock holdings in major health-care companies, including Bristol-Myers Squibb and Merck. The family of Rep. Jane Harman (D-Calif.), a senior member of the House Energy and Commerce Committee drafting that chamber's legislation, held at least $3.2 million in more than 20 health-care companies at the end of last year. The reports come on the eve of what is sure to be a dramatic health-care debate in Congress, beginning with a key Senate committee hearing Tuesday. With several proposals floating on Capitol Hill, the legislative battle could overhaul an industry that represents nearly 20 percent of the national economy. While no congressional rules bar members from holding financial stakes in industries they regulate, some ethics experts suggest that it often creates the appearance of a conflict of interest, particularly if there is a chance that the legislation could result in a personal financial boost. + Read more: is.gd/11Rrw • • • Many Herbal Products Made By Big Pharma Drug makers Bayer, GlaxoSmithKline and Wyeth also sell supplements By Marilyn Marchione, Associated Press. is.gd/122Io Some people who buy supplements to avoid Big Pharma drug companies may find themselves doing business with Big Herba, instead. Some of the same companies that mass-produce drugs in huge chemical labs also churn out vitamin and herbal pills sold in bottles with rainbows, sunrises and flowers on their labels. Dozens of other supplement makers reap more than $100 million in annual sales. One of the largest — NBTY Inc., on New York's Long Island — sold $2 billion last year in the United States alone. Its brands include Nature's Bounty, Vitamin World, Puritan's Pride and Sundown. "They used to be mom and pop operations but now they're major companies," said Bruce Silverglade, chief lawyer for the consumer group, Center for Science in the Public Interest. There are hundreds of small firms, including niche players with only a few products. But they account for a slim slice of total sales, industry experts say. Supplements often are sold through multilevel marketing — distributors and franchise holders earn commissions by selling and recruiting others to sell for a large company at the top of the pyramid. Even many ingredient suppliers are multimillion-dollar firms that do business all over the world. Little herbal stores are only "what the consumer sees when they're shopping," while the large companies that supply them are mostly invisible, Silverglade said. The industry's little-guy, granola image has been a great marketing asset, allowing it to tap into Americans' frustration with big medicine, big prices and big risks. Supplement makers are dwarfed by leading pharmaceutical firms, whose drugs command sales in the tens of billions of dollars. Yet the reality is that natural remedy makers constitute a sizable business that doesn't have to play by the same rules as companies that make prescription or over-the-counter medicines. The Dietary Supplement and Health Education Act of 1994 exempted supplements from needing federal Food and Drug Administration approval, or proof of safety and effectiveness, before they go on sale. + Read more: is.gd/122Io • • • NEWS California Budget Crisis: Sweeping Cuts And Changes Proposed For Thousands With Developmental Disabilities Budget Trailer Bills Released by Schwarzenegger Administration – Budget Conference Committee Will Take Action As Early As Today (June 15) – Advocates Sharply Critical of Timing and Use of Stakeholder Process by Department to Push Reductions Sacramento, Calif - The Schwarzenegger Administration, through the Department of Developmental Services, released six draft proposed budget related bills – called “trailer bills” that would – if approved by the Legislature – make sweeping changes and cuts for potentially tens of thousands of infants, children and adults with developmental disabilities receiving regional center funded community-based services and supports. Copies of those proposed draft trailer bills are available for downloading or viewing on the CDCAN website at www.cdcan.us The major cuts include proposals impacting eligibility and services for Early Start, the state’s early intervention program for thousands of infants and toddlers at risk including those with developmental disabilities and elimination of regional center funding until a new “Individual Choice Model” program is implemented impacting educational services for children ages 3 to 17, non-medical therapies including but not limited to specialized recreation, art, dance and music. Those changes – if approved by the Legislature could result in spending cuts of over $334 million in state general fund money for regional centers – a figure that could rise to over $500 million if federal funds are also factored in, and previously approved cuts are added into the total. [CDCAN will issue an Action Alert – and also a commentary not only on the proposed reductions – but also on the use of the stakeholder process by the Department of Developmental Services. ]. A seventh proposed draft trailer bill deals with sending a proposal to the federal government seeking approval for a change in the State’s Medicaid State Plan, that would allow possible expansion in what Medicaid – called Medi-Cal in California – will cover in terms of regional center funded services. + Read more: www.sarnet.org/doc/CDCAN1722009.htm • • • Illinois Autism Service in Danger By Christen Craig. is.gd/12Fz3 A state program under the gun is Illinois' Autism service. It supports education of Autistic children including a center at SIU where officials say drastic cuts could be on the way. They require special training but managers at a local center say if their funding is left out the budget numerous families will have nowhere to turn. Four year old Joshua is now playing, interacting with others and talking-- huge accomplishments for an Autistic child. "When we first started dealing with all this he couldn't tell you what was wrong, he couldn't tell you what he wanted, he was non-verbal" says Josh's dad, Rick Reimer. Josh's condition has continued to improve. He's doing things his dad never thought possible. "...Spelling words, he's reading, he'll sit and he reads me stories." Rick attributes his son's success to the help he received at SIU's center for Autism Spectrum Disorders, a place that helps more than 100 patients a year, but it's in danger of drastic cuts. "What would you have to say to Josh's family?" I asked. "We just don't have the ability to serve the number of families we used to" says Jenny Martin with the center. If money for the state Autism program is cut, the center will lose its primary funding source. Managers say they would only be able to help a few patients, and other families dealing with Autism would suffer. "To get the services that we provide they would probably have to travel outside of the state" says Martin. Josh's dad says it's crucial that those like his son get the treatment they need. "You can either fund the programs now that help them, or you can pay for them the rest of their lives in these group homes or institutions" says Rick. He has big dreams for Josh, starting with normal kindergarten next year-- but all that could be in jeopardy. "I want them to get the funding, I want them to be able to allow Josh to come back because even though he's come a long way, he has a long way to go" says Rick. The center says not only will families have to travel out of state for Autism services they will also have to pay thousands of dollars for the treatment. • • • TREATMENT Melatonin May Counter Sleep Disorders in Autistic Children By Jim Kling. www.medscape.com/viewarticle/704191 A pilot study in children with autism spectrum disorders (ASD) suggests that low-dose melatonin may be an effective treatment for insomnia in these patients. In this study, positive effects of treatment were seen on both sleep and daytime behavior. Melatonin "does appear to be effective," Beth Malow, MD, professor of neurology at Vanderbilt University, in Nashville, Tennessee, said during her presentation. She emphasized that the study was small and that more work needs to be done. "Kids with autism who have some sleep problems are candidates for melatonin, and I believe that large, randomized clinical trials of melatonin are well warranted," she concluded. Dr. Malow presented the findings here at SLEEP 2009: 23rd Annual Meeting of the Associated Professional Sleep Societies. Increasing Melatonin Use Children with ASD may experience insomnia, the researchers note, and parents are increasingly turning to melatonin as a sleep aid. However, not much is known about its potential adverse effects. Melatonin also comes in a wide variety of formulations, some with additives such as antihistamines or vitamins. Parents perceive melatonin as a natural treatment, but the wide variety of formulations makes it difficult for practicing physicians to assess its utility. "I don't know what they're taking," said 1 attendee, referring to his autistic patients. To better assess melatonin's safety and efficacy in autistic children, the researchers conducted a 17-week study of children with ASD who had trouble falling asleep. The study enrolled children aged 4 to 10 years diagnosed with ASD who required at least 30 minutes to fall asleep on 3 out of 7 nights of the week. Parents received behavioral sleep education before melatonin treatments began, and this was continued through the study. Parents filled out sleep and behavioral survey forms at the beginning and end of all study procedures. Patients wore actigraphy watches (Respironics) for 17 weeks. After 3 weeks, patients were given 1-mg melatonin (Natrol). Every 3 weeks thereafter, the dose was escalated to 3 mg, 6 mg, and 9 mg, until the patient fell asleep within 30 minutes at least 5 out of 7 nights per week. Pre- and posttreatment actigraphy measures were analyzed using a Wilcoxon signed-ranks test. Ten patients completed the study with no adverse effects. Three required a dose of 1 mg, 5 required 3 mg, and 2 required 6 mg to achieve the desired end point. No patients required a 9-mg dose. Patients started with a mean sleep latency of 38.7 minutes that was reduced to a mean of 21.8 minutes with treatment (P = 0.039). The Children's Sleep Habits Questionnaire showed improvement in sleep-onset delay (P = 0.008) and sleep duration (P = 0.004), repetitive-behavior scale domains of compulsive (P = 0.002) and ritualistic behavior (P = 0.004), and Parent Interview for Autism domain of affective responses (P = 0.02). Definite Promise Asked for perspective on these findings, Judith Owens, MD, professor of pediatrics at Brown Medical School, in Providence, Rhode Island, who moderated the session, said the data support the safety, tolerability, and efficacy of melatonin in this patient population. "This was open label, so you can't get solid conclusions of efficacy, but it definitely has promise," Dr. Owens told Medscape Neurology. The project was supported by grants from the Autism Speaks/Dana Foundation, the National Institutes of Health, and Vanderbilt University. Melatonin was provided by Natrol. Dr. Malow and Dr. Owens have disclosed no relevant financial relationships. SLEEP 2009: 23rd Annual Meeting of the Associated Professional Sleep Societies: Abstract 0189. Presented June 8, 2009. • • • RESOURCES Generation Rescue Announces Rescue Family Grant Program From an organization announcement. We are proud to announce our Rescue Family Grant program! Generation Rescue is offering a grant program for first time biomedical autism treatments that may not otherwise be covered privately or by other third-party funding sources such as school districts, county programs, insurance, and/or other grant making entities. We are now accepting our first round of 250 applications for our Rescue Family program; applications must be received by July 15, 2009. Applicants who meet the grant program criteria and complete the grant application will be considered for a Rescue Family grant. Rescue Family grants are based on economic need within the applicants specific geographic area. Generation Rescue's Rescue Family grants are designed to provide support to individuals and families affected by Autism Spectrum Disorders. Each grant recipient will receive two doctor visits with a specially trained physician who treats individualized medical conditions associated with autism. Grants also include a 90 day supply of vitamins, minerals and supplements, a Generation Rescue-Rescue Mentor and information on dietary interventions. We are currently in the process of negotiating some laboratory testing as well and hope to have some additional announcements in the next few weeks. Applicants must complete and mail the grant application by July 15th in order to be considered for the Rescue Family program. The application and complete application guidelines are on our website is.gd/12Fbn. • • • PEOPLE Autism View: Fear Is The Enemy Noted speaker who has disorder shares her insight at conference By Jon Walker in argusleader.com. is.gd/12FkI Autism traps a child inside a maze of thoughts and fears, one who's been inside the trap told educators Friday in Sioux Falls. "Fear is the main emotion in autism," Temple Grandin told a conference audience at Augustana College. Grandin, 61, an author and associate professor at Colorado State University, explained her own difficulties with autism since childhood as she spoke to 370 people. Autism is a disorder that displays itself in difficulties in seeing, hearing, repetitive behavior or relating to others. An autistic person can be brilliant in science, art, music and other disciplines, and that's an opening to help. "The autistic mind is into detail. Build an area of strength," she said. But mundane matters can be overwhelming. She told her listeners that if someone released several cobras inside the auditorium, they'd all be constantly looking around for snakes as she spoke. Running water, loud noises and scratchy clothing all can set off similar alarm bells for the autistic. Movie upcoming Grandin will be the subject of an HBO movie next year. Jeff Iverson, director of alternative education for Andes Central School District, said he wanted to hear her because "autism is more prevalent and is being diagnosed more" in children. "It's not often we get to listen to someone with the disability who is as articulate as she is," said Melanie Paulson, a teacher from Rapid City. Paulson appreciated Grandin comparing the brain to a map of U.S. airline routes. The autistic mind lacks many lines of communication in the network, a deficiency that plays out in daily interaction. "People with autism don't get drawn into relationships," Paulson said. Grandin thinks the autistic can compensate, in part. "Social skills can be taught, but social-emotion relatedness may remain absent or weak," she said. Thinking visually Grandin described herself as a visual thinker and a "goofball student" in school until a science teacher helped her learn to study. She regrets that algebra was required before higher math and continues to argue with educators who are fixed on that curriculum sequence. + Read more: is.gd/12FkI • • • Cops Seeking Caregiver Of Boy Believed To Be Autistic By Kelly Pedro, London Free Press is.gd/12FVj London, Ontario, Canada police are asking for the public’s help finding the caregiver of a boy believed to be autistic after he was found near Commissioners and Adelaide roads about 6:30 a.m. The boy is about 13. He is white, five-foot-seven, about 100 lbs., with a skinny build, brown eyes and dark short hair. He was wearing blue pajama bottoms, a blue T-shirt with green trim and grey “Sugi” running shoes. The boy was found walking around and seemed lost, police said. • • • COMMENTARY Autism and Toxins By Jay Gordon, MD, Nationally renowned pediatrician on the faculty of UCLA School of Medicine on huffingtonpost.com. is.gd/12GF5 Dr Harvey Karp has just written an excellent blog beginning to discuss the role environmental toxins play in causing autism. I agree that the huge rise in autism is real, and not just related to better diagnosis or reclassification of mental illness. Autism is most likely caused by a genetic predisposition and an environmental "trigger." Studies showing that vaccines and their many constituents do not contribute to this problem are flawed, filled with specious reasoning and, for the most part funded by the pharmaceutical industry. Even articles in reputable medical journals are often written by doctors with an economic interest in continuing the vaccination program's status quo. This does not invalidate all of these studies but it certainly makes them suspect and a poor foundation for an argument excluding vaccines from the list of environmental influences on the increase in autism in America and elsewhere. The facile dismissal of those of us calling for safer vaccinations and scrutiny of the current vaccine schedule is not scientifically based and polarizes the discussion. Perhaps most importantly, this dismissal is insulting to the thousands of parents and families who aver that their children have been harmed by vaccines. There are extremists choosing to ignore the facts in all vaccine/autism camps. I am not one of them. Asking that cars be manufactured with more attention to safety and that driving is best when done safely does not make one "anti-car" or anti-driving. Asking for safer vaccinations and more judicious use of those we have does not make me or anyone else "anti-vaccine." The studies Dr. Karp cites show pretty much the opposite of what he's claiming they do. The opposite. The Danish Study's data are misused by all and interpreted to suit one's needs. The Japanese study also shows a connection between the MMR split into three components and autism. Mainstream medical journals rarely will publish editorial comment impugning the quality or integrity of vaccines because they are dependent upon the good graces of the pharmaceutical industry for their publishing dollars. Seeking out reputable commentators is difficult because the extremists on both sides of this debate exaggerate their claims and speak louder and more unpleasantly as if this helps to make their points. + Read more: is.gd/12GF5 • • • Dr. Baron Cohen Responds On the Age of Autism blog. is.gd/12Gh3 AOA Managing Editor's Note: Thank you to Dr. Baron Cohen for responding to Anne Dachel's open letter to him. We need to be able to discuss the future of our kids with the experts and professionals who wield tremendous influence. We might not always like it. We might strongly disagree. But we'd darn well better keep talking - for the sake of our kids who are hurtling toward adulthood. Thank you, Dr. Baron Cohen. And thank you, Anne. Here's the response from Dr. Baron Cohen: Dear Ann Dachel, Thank you for your letter. The new research that you referred to showing that autism spectrum conditions are now much more common than they used to be, and which was published in the British Journal of Psychiatry this month, was conducted by our group at the Autism Research Centre in Cambridge. Using 3 different methods we found that the rate is now about 1% of primary school age children. This was a large study based on about 20,000 children. As you rightly pointed out, this study also found that for every 3 children who already have a diagnosis, there are two more who would meet "research diagnostic criteria". So, if one includes those who are undiagnosed, the rate goes up to 1 in 64 children. These are very high rates, especially compared to 30 years ago, when the rates were thought to be 4 in 10,000 (using Rutter's estimates). Interestingly, other estimates from the same period (from Wing) suggested autism was much more common even back then (15-20 per 10,000). I think many children in the old days were overlooked and that we are getting much closer to the true rate in the population these days. In that sense, the fact that more cases are being diagnosed could be seen as an achievement, that we are getting much better at identifying such children. If some note of alarm was needed, perhaps it should be over all those individuals who were missed in the old days, and who are now being better recognized. + Read more: is.gd/12Gh3
Note: The opinions expressed in COMMENTARY are those of the author and
do not necessarily represent the views of the Schafer Autism Report. LETTERS Dental Mercury Exposure I was looking at your "five studies to watch" and it seemed that the first study could possibly look at the following idea. In the UK we have a policy that women during pregnancy get free dental care. Dentists used to have a propensity to use this time to replace fillings that were supposedly going to need removal some time in the future. The removal of filings obviously has a potential risk for mother absorbing mercury when the old filing is removed. No one seems to have looked at this. I tired to interest the LSHTM epidemiological study team but they did not look at dental health. - Professor James Roger. Horse Riding Webinar I am Executive Director of “The Pocono Equestrian Center". I believe that your readers would definitely benefit from this program on e–learning Zoom. Please let me know what you think and if you want to join a webinar that will be coming up soon. elearningzoom.com/takeatour.php - Beverly Peffer, The Pocono Equestrian Center, Scranton, PA Today's SAR newslist is human compiled and provided through the support of paid subscription readers. - THANK YOU - |
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Copyright Notice: The above items are copyright protected. They are for our readers' personal education or research purposes only and provided at their request. Articles may not be further reprinted or used commercially without consent from the copyright holders. To find the copyright holders, follow the referenced website link provided at the beginning of each item. |
| Lenny Schafer editor@sarnet.org The Schafer Autism Report is a non-profit corporation |
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Vol. 13 No. 61
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