E-Newsletter July 2008 #2
Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.
We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
In this edition:
1 | Find a TACA Meeting |
Come to a TACA Meeting!
TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge. Check out our group listings: each contains information on TACA meetings and special events as well as a contact form. Are you wondering what happens at a TACA meeting? Watch our video. |
|
2 | Autism Research Institute Launches Mobile Website |
Autism.mobi now available to provide mobile-friendly content and services on Autism-related issues to world's two billion mobile users
SAN DIEGO, Calif. and WASHINGTON, DC –July 8, 2008 – The Autism Research Institute, a leading non-profit organization, has launched a mobile Internet Web site, http://autism.mobi, designed specifically for users of mobile devices and mobile phones, including the Apple iPhone. According to Steve Edelson, director of the San Diego-based research and education group, this is the first .mobi Web site created and maintained by a national autism organization, and is in response to consumers’ desire for “practical" mobile content. “There are almost two billion mobile Internet users today, and we’re tailoring our organization’s services to better serve those needs,” said Edelson. Many of the major papers and published studies from the Autism Research Institute’s popular website, www.autism.com, have been reformatted for easy, on-the-go reading on http://autism.mobi. The site also includes advice for parents, treatment tips, and answers to frequently asked questions. One especially valuable feature is the Autism Treatment Evaluation Checklist (ATEC), which is designed to evaluate cognitive, communication, sensory, and social skills – as well as the physical health – of individuals on the autism spectrum. Parents and specialists can complete the ATEC on their mobile phones at any time, such as when waiting in the doctor’s office, and they can immediately forward the results to their child’s or patient’s physician for review. Amy Mischler, dotMobi's Vice President of Identity and Brand Services said, "dotMobi recently released the results of a study that showed consumers want useful, practical content available for their mobile phones. Autism.mobi is an excellent example of that, as well as being a site which is designed to serve the needs of a community. Globally, people are more likely to have a mobile phone with Internet access than a computer with Internet access, and having a .mobi site available allows an organization to reach a greater population who will be able to benefit from its services.” For more information about http://autism.mobi or about the Autism Research Institute, call 619-281-7165 or visit www.autism.com. |
|
6. | Amanda Peet vs. the Medical Establishment |
Huffington Post |
|
8. | Is Aluminum the New Thimerosal? |
By Robert W. Sears Vaccines have become the most controversial parenting topic of the decade. When parents are considering whether or not to vaccinate their children, one of the things that must be considered is aluminum toxicity. Aluminum is added to a number of vaccines to help them work better. Normally, one wouldn't consider aluminum to be a problem. It's a naturally occurring element that is present everywhere in our environment—in food, water, air, and soil. It's also a main ingredient in over-the-counter antacids. And because the body doesn't absorb aluminum, it's harmless when swallowed. I didn't think much about aluminum when, 13 years ago, I began researching vaccines. In fact, the early seminars on vaccine education that I offered to parents included a brief statement that aluminum was nothing to worry about. But as I read each product insert and saw the number of micrograms (mcg) of aluminum contained in several vaccines, I wondered, "Has anyone determined what a safe level of injected aluminum actually is?" I didn't have to wonder for long, because the answer is easy to find; go to www.fda.gov, search on "aluminum toxicity," and you'll find several documents about aluminum. The first document I came across discusses the labeling of aluminum content in injected dextrose solutions (the sugar solutions added to intravenous fluids in hospitals): "Aluminum may reach toxic levels with prolonged parenteral administration [i.e., injected into the body] if kidney function is impaired. Research indicates that patients with impaired kidney function, including premature neonates [i.e., babies], who received parenteral levels of aluminum at greater than 4 to 5 micrograms per kilogram of body weight per day, accumulate aluminum at levels associated with central nervous system and bone toxicity. Tissue loading [i.e., toxic buildup in certain body tissues] may occur at even lower rates of administration."1 For a tiny newborn, this toxic dose would be 10 to 20 mcg; for an adult, it would be about 350 mcg. The second document discusses aluminum content in IV feeding solutions, or Total Parenteral Nutrition (TPN) solutions. The FDA requires these solutions to contain no more than 25 mcg of aluminum per liter of solution. A typical adult in the hospital would get around 1 liter of TPN each day, thus about 25 mcg of aluminum. The FDA document also states, "Aluminum content in parenteral drug products could result in a toxic accumulation of aluminum in individuals receiving TPN therapy. Research indicates that neonates and patient populations with impaired kidney function may be at high risk of exposure to unsafe amounts of aluminum. Studies show that aluminum may accumulate in the bone, urine, and plasma of infants receiving TPN. Many drug products used routinely in parenteral therapy may contain levels of aluminum sufficiently high to cause clinical manifestations [i.e., symptoms]. . . Aluminum toxicity is difficult to identify in infants because few reliable techniques are available to evaluate bone metabolism in premature infants. . . Although aluminum toxicity is not commonly detected clinically, it can be serious in selected patient populations, such as neonates, and may be more common than is recognized."2 Elsewhere, I found a relevant 2004 statement by the American Society for Parenteral and Enteral Nutrition (ASPEN), a group that monitors oral and injectable nutritional products for safety and side effects. It reiterated the cited FDA warnings to the letter, and recommended that doctors purchase IV products with the lowest aluminum content possible, "and should monitor changes in the pharmaceutical market that may affect aluminum concentrations."3 The source of the daily limit of 4 to 5 mcg of aluminum per kilogram of body weight quoted by the ASPEN statement seems to be a study that compared the neurologic development of about 100 premature babies who were fed a standard IV solution that contained aluminum, with the development of 100 premature babies who were fed the same solution with almost all aluminum filtered out. The study was prompted by a number of established facts: that injected aluminum can build up to toxic levels in the bloodstream, bones, and brain; that preemies have decreased kidney function and thus a higher risk of toxicity; that an autopsy performed on one preemie whose sudden death was otherwise unexplained revealed high aluminum concentrations in the brain; and that aluminum toxicity can cause progressive dementia. The infants who were given IV solutions containing aluminum showed impaired neurologic and mental development at 18 months, compared to the babies who were fed much lower amounts of aluminum. Those who got aluminum received an average of 500 mcg of the metal over a period of 10 days, or about 50 mcg per day. The other group received only about 10 mcg of aluminum daily—4 to 5 mcg per kilogram of body weight per day.4 This seems to be the source of this safety level. However, none of these documents or studies mentions vaccines; they look only at IV solutions and injectable medications. Nor does the FDA require labels on vaccines warning about the dangers of aluminum toxicity, although such labels are required for all other injectable medications. All of these studies and label warnings seem to apply mainly to premature babies and kidney patients. What about larger, full-term babies with healthy kidneys? Using the 5 mcg/kg/day criterion from the first document as a minimum amount we know a healthy baby could handle, a 12-pound, two-month-old baby could safely receive at least 30 mcg of aluminum per day. A 22-pound one-year-old could receive at least 50 mcg safely. Babies with healthy kidneys could probably handle much more than this, but we at least know that they can handle this much. However, these documents don't tell us what the maximum safe dose would be for a healthy baby or child, and I can't find such information anywhere. This is probably why the ASPEN group suggests, and the FDA requires, that all injectable solutions be limited to 25 mcg; we at least know that that level is safe. Calculating Aluminum in Vaccines DTaP (for Diphtheria, Tetanus, and Pertussis): 170-625 mcg, depending on manufacturer As a medical doctor, my first instinct was to worry that these aluminum levels far exceed what may be safe for babies. My second instinct was to assume that the issue had been properly researched, and that studies had been done on healthy infants to determine their ability to rapidly excrete aluminum. My third instinct was to search for these studies. So far, I have found none. It's likely the FDA thinks that the kidneys of healthy infants work well enough to excrete aluminum before it can circulate through the body, accumulate in the brain, and cause toxic effects. However, I can find no references in FDA documents that show that using aluminum in vaccines has been tested and found to be safe. So I did what any pediatrician would do. I turned to the American Academy of Pediatrics (AAP), who in 1996 published a policy statement, "Aluminum Toxicity in Infants and Children," that made the following points: Aluminum can cause neurologic harm. But that is the main point of this article. No one has measured the levels of aluminum absorption by the bloodstream when it is injected into the skin and muscle of infants, or the levels of excretion from the body via urination. All of the FDA and AAP documents that I've read state that aluminum might be a problem, but that they haven't studied it yet, so we should limit the amount of aluminum included in injectable solutions. But, again, no one is talking about the levels of aluminum in vaccines. What I think may have happened is that because aluminum used to be found in only one vaccine—DTP, an older version of the current DTaP vaccine—no one thought much about it. Then, in the 1980s, the PedVaxHib brand of HIB meningitis vaccine was released, which also included aluminum; but other brands of HIB vaccine did not, so again, no one thought much about it. In the 1990s, the Hepatitis B vaccine began to be widely used; in the 2000s, the Pneumococcus vaccine; and, more recently, the Hepatitis A vaccine. Administering one aluminum-containing vaccine at a time involves only a small amount of the metal; administering four such vaccines simultaneously is a different story. It seems this issue has simply escaped everyone's attention. Or has it? Limited Studies limit thinking This is especially surprising because of the limitations of the Cochrane Collaboration's study. They looked at the effects of only one standard aluminum-containing vaccine, rather than the effects of all four being administered at once. They didn't study aluminum metabolism itself. They didn't test aluminum levels in children after vaccination, nor did they explore whether or not the amount of aluminum in vaccines builds up in the brain or bone tissues. They looked only for evidence of external symptoms of aluminum toxicity, not internal effects. Nor did they do their own research; instead, they reviewed all available studies conducted by other investigators. Despite all this, the Cochrane Collaboration study essentially closed the book on investigating aluminum toxicity from vaccines, without really having opened it in the first place. The most obvious way to study this matter would be to inject various amounts of aluminum into children and see what happens to them internally. We know from the FDA documents that aluminum toxicity does occur from other types of injectable treatments; that it accumulates in the brain and bones in toxic amounts; that this may occur more commonly than is recognized; and that aluminum toxicity is hard to detect by looking for external symptoms. The question remains: What happens when these amounts of aluminum are injected via vaccines? Vaccine manufacturers may have begun to wonder about the same thing; I found some interesting research in the product insert of the new HPV vaccine, Gardasil. In researching the safety of Gardasil, Merck & Co., Inc., the vaccine's developer and manufacturer, added a step to their testing procedure by injecting aluminum into a separate group of test subjects used as a safety control group. They then compared the side effects of the Gardasil vaccine with a saline placebo that contained neither Gardasil nor aluminum, as well as with the placebo containing no Gardasil but the same amount of aluminum as the vaccine. They found that the placebo containing aluminum was much more painful than the saline placebo, and about as painful as the full HPV shot. The aluminum placebo also caused much more redness, swelling, and itching than the saline placebo, though not quite as much as the full HPV shot. Unfortunately, Merck looked only at the effects of aluminum at the injection site. Nor did they state in the Gardasil product insert what role the aluminum placebo played in all the other standard side effects, such as fever and flu-like symptoms. Nor did they study the body's internal metabolism of aluminum. However, their research did show how irritating aluminum can be when injected into the muscles. It was a good first step. If aluminum can be toxic, why not just remove it from vaccines, as is being done with the preservative thimerosal, which contains the neurotoxin mercury? It's not that simple. Aluminum is an adjuvant; in other words, it helps vaccines work more effectively. When the metal is mixed with a vaccine, the body's immune system more easily recognizes the vaccine and creates antibodies against the disease. Thimerosal was easy to omit, because it has nothing to do with the efficacy of the vaccine itself. But the pharmaceutical companies would need good evidence that aluminum is harmful before they would invest in coming up with new, aluminum-free vaccines. (The Cochrane Collaboration report pointed out that removing aluminum from vaccines would then require extensive trials of the reformulated vaccines.7) What, exactly, does a toxic level of aluminum do to the brain? While no one has studied healthy babies to see how much, if any, aluminum builds up in the brain from the amounts of aluminum used in vaccines, the study on IV feeding solutions in premature babies mentioned above revealed that aluminum impaired their neurologic and mental development.8 But that was in premature babies, not healthy, full-term infants. I found several animal studies involving aluminum and/or aluminum-containing vaccines that did show neurologic harm. Not only did aluminum build up in the brain and cause damage, but some of the damage looked similar to what is seen in the brains of Alzheimer's patients.9-1314 However, it's hard to draw conclusions about aluminum's effects on humans from studies of animals. What we need are more studies of human infants. A Call for Better Research Vaccine policy makers and advocates may read this article, review my perspective, and initiate research studies to explore the risks of aluminum. I would hope that those researchers do not conduct a retrospective review of all the old vaccine safety studies and journal articles to look for the side effects of aluminum. As the FDA, AAP, and others have stated, aluminum toxicity can't be detected by external observation alone. It would be a waste of time, and a grave disservice to the health of America's children, to have several such reports show up in the medical literature. The only way the issue of aluminum safety can be put to rest is to conduct real-time studies on thousands of infants and measure aluminum levels after vaccination. In such a study, the researchers should look not only at blood levels. They should also find out whether or not aluminum accumulates in the body, where it accumulates, how the body eliminates it, and at what rate. Once I see such research, and have determined to my satisfaction that aluminum has been proven safe, I will post an update on www.thevaccinebook.com, and revise future editions of the book accordingly. If such research finds that aluminum may not be safe, then I would expect a new vaccine schedule to be adopted in which the administering of vaccines is spread out to minimize the amount of aluminum a child receives at any given time. I would also expect vaccine manufacturers to begin finding ways to reduce or remove aluminum from vaccines without compromising their effectiveness. We need to know the answers to many questions: Why does one brand of HIB vaccine require aluminum to make it work while another brand does not? Why does one brand of DTaP vaccine contain four times as much aluminum as another? Learning from the Past The issue of mercury toxicity from vaccines is moot for infants receiving vaccines today, as long as doctors and parents choose a flu shot without mercury, know which brands of vaccines still contain barely detectable traces of mercury, and are aware that some plain Tetanus and Diphtheria-Tetanus vaccines still contain mercury (though these last vaccines are not parts of the routine vaccine schedule). [For a current list of vaccines and their thimerosal contents, go to www.vaccine safety.edu/thi-table.htm.—Ed.] What isn't moot is the question of aluminum toxicity. As doctors, we can choose certain vaccine brands that contain less or no aluminum. We can be careful about giving only one aluminum-containing vaccine at a time. And we can talk about it instead of sweeping the issue under the rug. I pray that my fears about aluminum are unfounded, and that objective studies performed by completely independent groups with no ties to vaccine manufacturers or political organizations show that it is safe. If not, I would hope that manufacturers would start to reduce or eliminate the aluminum content of their vaccines as soon as possible. I know this won't be an easy task, but our children are worth it. Excerpted from The Vaccine Book, 2007 by Robert Sears, MD. Reprinted by permission of Little, Brown and Company. New York, NY. All rights reserved. For more information, see www.thevaccinebook.com. For the notes to this article, see www.mothering.com/ articles/growing_child/vaccines/aluminum-new-thimerosal-notes.html. |
|
10. | Top Radio Host: Autism Is “A Fraud, a Racket” |
Host Michael Savage Mocks Those Living with Autism and Smears Minorities with Asthma Washington, DC – Media Matters for America today condemned nationally syndicated conservative radio host Michael Savage for incendiary comments directed at those who live with autism and their families. During the same broadcast, Savage, the No. 3 talk radio host in America, also attacked those in “the minority community” who suffer from asthma. “What Michael Savage said was foolish, mean-spirited, and hurtful,” said J. Jioni Palmer, spokesman for Media Matters. “It’s unfortunate he would use his radio program to make fun of and belittle these kids. Instead of ridicule and cheap shots, the children suffering from autism and asthma and their families need support and compassion.” During the July 16 edition of his show, Savage claimed that autism is “[a] fraud, a racket. ...I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they're silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.’ ” Savage also stated: “[W]hy was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], “I don’t know, the dust got me.” “See, everyone had asthma from the minority community.” Talk Radio Network, which syndicates The Savage Nation, claims that Savage is heard on more than 350 radio stations. The Savage Nation reaches at least 8.25 million listeners each week, according to Talkers Magazine, making it one of the most listened-to talk radio shows in the nation, behind only The Rush Limbaugh Show and The Sean Hannity Show. |
|
11. | Presidential Candidates Give Their Views on Autism and Health Care |
From the Autism Society of America: Both leading presidential candidates have responded to ASA's request for statements on autism and health care issued in conjunction with the NHC town hall rally "Putting Patients First" at our National Conference last week. Read the statements from John McCain and Barack Obama on ASA's Vote for Autism page. Statements on autism from presidential candidates: |
|
12. | Who pays for autism treatment? |
An explosion in the number of children diagnosed has parents, insurers and state and private institutions battling over coverage. The case of Andrew Arce is a window into the conflict. By Lisa Girion, Los Angeles Times Staff Writer By the time Andrew Arce was 15 months old, his parents suspected he was autistic. He refused to cuddle, flapped his arms and stared into space a lot. On occasion, he picked at his nose until it drew blood and, with it, smeared the walls of the family's Pasadena town house. Three documentaries put faces on autism It was nearly a year, Guillermo Arce said, before Kaiser Permanente, the family's healthcare provider, confirmed their fears. The diagnosis wasn't much help, though. Kaiser refused to provide most of the treatment that specialists said Andrew needed -- until the state ordered it to in April. Last month, Andrew, now 2 1/2 years old, began getting the disputed treatment -- including individual training in how to eat and play. "He is still young," his father said. "He will always be autistic, but maybe he could be fully functioning." Guillermo Arce's battle is a window on a political and legal struggle playing out across the country amid a surge in diagnoses of autism. Parents, insurers and the government are tussling over who is going to pay for treatment. "It's health plans versus schools versus regional centers," said Diane Anand, executive director of the Lanterman Regional Center in Los Angeles, one of 21 state-funded centers that serve the developmentally disabled. "It's going to take years to sort this out." Autism is a disorder that impairs communication and socialization and is often marked by repetitive behaviors such as rocking and head banging. Although there are many theories, its cause remains unknown. There is no cure. Treatment is mainly behavioral training, teaching such skills as dressing. There is wide agreement that the sooner treatment begins, the more effective it is, and that early intervention pays off in the long run by developing self-reliance. But it costs money -- as much as $70,000 a year per child. The state spent $320 million last year, up from $50 million a decade earlier. Nationwide, the tab is $90 billion annually, a figure expected to double in a decade. Parents, in growing numbers, say insurers aren't doing their part. Proposed class-action lawsuits -- including one filed in April by Arce against Kaiser and another filed late last month against Anthem Blue Cross -- allege that California's largest health plans are shirking their duties to autistic members. Health plans say they cover medically necessary care. The problem, they say, is that parents ask for treatment that insurers deem experimental, or for basic skills training that has long been provided by state-funded regional centers and schools. "What we're concerned about is we're seeing a shift of the state's responsibilities over to the health plans," said Chris Ohman, president of the California Assn. of Health Plans. "To just say 'We need to have health plans cover all treatments' could have unintended consequences." But Kristin Jacobson of Autism Speaks California contends that the healthcare industry has "washed its hands of autism entirely." Parents of children who don't qualify for public programs "bear the full burden of the treatment costs and pay their premiums," she said. "They aren't asking for a free ride. They are paying premiums." The significantly impaired -- about 1 in 5 autistic patients -- qualify for help from the regional centers, which currently serve about 37,000 people with the disorder. As the fastest-growing diagnosis at the centers, accounting for 60% of new intakes, autism adds 11 clients a day. California's mental health parity law, enacted in 2000, was supposed to settle the issue, requiring insurers to cover autism and other behavioral disorders the same way they cover any medical condition. But critics say insurers are failing to follow the law. Dr. Benjamin Chu, head of Kaiser in Southern California, said the law requires health plans to cover autism but not particular treatments. So, he said, Kaiser covers what it deems medically necessary. Kaiser and other insurers say conflicts arise when parents expect them to cover services that schools and regional centers should provide, such as training to change self-destructive behaviors. "Whether a health plan is responsible or not is a gray zone," Chu said. But critics contend that health plans are looking for any excuse to avoid paying for expensive treatment. "Kaiser is really just illegally dumping patients again," said Scott Glovsky, a Pasadena lawyer representing Andrew Arce in the Kaiser suit. "But instead of dumping poor, homeless people on skid row, they are dumping autistic children on the taxpayers." A state commission report issued in September gives health plans low marks for autism care. It concludes that coverage for medical, behavioral and psychotherapeutic services "is limited, inconsistent or excluded altogether." State-sanctioned independent medical reviews have concluded that insurers wrongly denied care to autistic patients in dozens of individual cases, but regulators have not issued a single citation. With complaints on the rise, however, California's Department of Managed Health Care is now looking into the matter, Director Cindy Ehnes said. Help can't come soon enough for many parents. Already exhausted by the daily struggle to care for their children, they must fight insurers to get the therapy that their own physicians, experts and government authorities say their kids need. In the end, many spend their own money and taking on debt. Shelley Bell said that she and her husband have spent about $350,000 on treatments for their autistic son, Jason, 11. The family has had four insurance carriers over the years. Bell said she had to battle every one and usually lost. "A lot of parents just don't have the fight in them," Bell said. "It's almost like a full-time job corresponding with these insurance companies: the follow-up letters, the denial, the appeal. The word among autistic families is the insurance companies turn down everything and wait to see if you are going to appeal." The Bells refinanced their Westminster home, using the money to pay for treatments. But, Bell said, they still owe about $80,000. "As much as I hate this debt, it's been great to see the progress," she said. "My son is not fully integrated. But he talks. He's social. He's funny. It's been worth every penny." Pending lawsuits could change the way insurers deal with their autistic members. A spokeswoman for WellPoint Inc., parent of Anthem Blue Cross, declined to comment on the suit against the insurer. In general, Shannon Troughton said, Blue Cross covers care it deems medically necessary, including screenings, medications and some therapies for autism. In Andrew Arce's case, specialists concluded that he needed an array of therapies, including 20 hours a week of applied behavior analysis. The intensive, one-on-one therapy breaks down tasks such as eating into small steps and drills each until mastered. Several insurers -- Anthem Blue Cross, Blue Shield, Health Net and PacifiCare -- decline to cover the treatment, saying it is unproven. But advocates say this is a misreading of the medical literature. The U.S. surgeon general concluded in 1999 that it was good medicine, saying 30 years "of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior." Kaiser also declines to cover the therapy, but on the grounds that it is educational and not medical. Kaiser is reviewing its policy in light of the state's order that it provide the therapy for Andrew Arce. lisa.girion@latimes.com |
|
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.
|