Defending the Indefensible
Dr. Mike Waldman is responding as defensively as a child caught in a huge lie or stealing from his local drug store. He would rather defend his indefensible lunacy and junk science than admit to his huge error in judgment and reason. He is now caught up in a huge firestorm that even he probably had no idea he was getting into, by proposing his ignorant hypothesis. He now seems incapable of the wherewithal or common sense to simply extricate himself.
But Waldman may have made the most damaging statement to date when he said, "PARENTS SHOULDN'T BE DECIDING THE DIRECTION OF RESEARCH". Again Waldman demonstrates his ignorance of an issue that he came in on too late, too uninformed, too naive to even be a participant in the debate.
He is unaware that many of the most active parents in this debate ARE doctors and scientists. He also seems unaware as he jumps in at the 11th hour and decides to dictate what and how this epidemic isstudied, that if it wasn't for parents no research at all would have been done, besides the easily flawed epidemiological studies released and paid for by the CDC, clearing themselves as the poisoners of an entire generation of children. How dare Waldman come along after nearly two decades of our children being written off, neglected, denied they even existed, dropped by insurance companies or refused payments for autism treatments, miss-handled by ill-prepared school systems and early intervention and neglected by their own governments at every level. Parents are the only ones that have given a damn about these kids for more than 20 years. Parents have mortgaged their lives to try to afford the most promising treatments and therapies that might make a difference in their child's outcome because no one else is offering a thing. They have single-handedly raised the public awareness to a national crisis and epidemic. Parents alone have driven the train of research, political action, support groups, legislative action,insurance reform, biomedical treatment organizations nationwide that are recovering children from this devastating disease.
So all you parents that have dedicated your life to Autism, your own child as well as all others and those children yet to come, just back off now because Mr. TV Man is here, and all the answers will be forthcoming. Stop your fundraising efforts, stop your boards that are distributing research funds for real scientific studies, stop your political action committees, stop your parent support groups, stop your biomedical conventions, stop your dialogue with real doctors and scientists and sit back in your easy chair at home because, Mr. TV Man is here, Economics professor extraordinaire, newly professed expert on Autism is now going to dictate to parents,
doctors, scientists, the nation, on how the Autism research and debate should be conducted. He alone will tell us what is valid research and who has a right to participate? He will decide who should be taken seriously and who should not. "Never Fear, Mr. TV Man is Here".
Mr. Waldman, you are not going to dictate to parents. Parents are Autism. Parents are the only support these children have. Parents are the funders of research, they are the soldiers of Autism legislation and insurance reform, they are the educators of their own children, the legal experts on IDEA and FAPE, they are their children's nutritionists, doctors, nurses, educators, and most of all they are their children's advocates in a world that is more and more hostile to not only our children but to us too. You, Mr. TV Man have crossed a line that is unforgivable. You dare to dictate
to and exclude parents from a process that they have carried alone. We will dictate research because we are the only ones funding it and soliciting the research. You come along with your bizarre precipitation/cable TV/Autism theory and suddenly feel you have the right to exclude the only people who have given a damn about our kids from day one.
Parents are deciding the direction of research because few listen to the only people that know these children inside and out. We witnessed our children's decline and we had to take it into our own hands to have our concerns taken seriously. All the experts have told too many of us to institutionalize our children, that they would never talk, that they are severely mentally retarded, there are no treatments, there is no hope. Yet on our own, with the help of sympathetic and compassionate researchers, doctors, and professional that truly listen to parents, many of us across the nation have fixed our children's problems. Experts ignored our children's' serious medical problems as if because they had Autism it was ok that they suffer from severe intestinal, immune system, and gut disorders. We fixed those problems too. We have attacked Autism from multiple levels and approaches and our children are recovering. We can thank ourselves for that gift. What are you offering Mr. TV Man? I never owned a TV, it didn't cause my child's autism.
That is the problem. Mr. TV Man may be published in medical journals eager to highlight anything that takes the focus off of vaccines. But he will never ever gain the support of dedicated and educated parents who are the driving force behind all things Autism. And we have that right, because medicine, government, insurance, educational institutions, old-style non-profits, all told us long ago that we don't matter, our children don't matter, they are expendable, to be institutionalized and forgotten. Out of love for our children we have changed all that and continue to burst open-wide the doors that hold the mysteries to our children's problems.
Mr. TV Man seems unaware of how savvy these parents are and educated on the complex and intricate issues of Autism, far more educated on this very issue than him. The whole issue seems too simple to him, he does not even realize the level of scientific sophistication that parents have had to reach to treat and cure their own children. It is Mr. TV Man who has no right to jump in and start dictating the Autism research agenda in a blathering attempt to defend the indefensible. The research and studies have gone so far beyond his simplistic thinking that he seems incapable of even comprehending the complexity of it. The most brazen part of this man's ego is how he came to the conclusion that as an Economist and professor, he is in a position to hold himself above parents. But we too are researchers, doctors, lawyers, statistical experts, psychologists, teachers, professor, politicians, etc.
Mr. Waldman still refuses to address the medical issues of Autistic children and how TV might bring about changes in the immune system and biochemistry of these kids. It's better to ignore what could not possibly fit into his simplistic and unproveable theory.
As he digs his grave of ignorance deeper and deeper I suspect his attacks on parents will only grow more vitriolic, more desperate, as he tries to hang on to his newfound fame and the attention that it is bringing him. In the mean time the real research will continue, funded by parents, and the organizations founded and run by
parents. And we will continue to be the only ones that are serious about getting to the root of this epidemic and the cause of our own precious children's decline into this devastating disease as well as their recovery from it. Mr. TV Man is not adding anything substantive or beneficial to the debate or to real science and he should step out gracefully now before causing further embarrassment to himself and the once prestigious institution of Cornell University, however neither of these seem to be of great concern to him.
Kendra Pettengill
October 29, 2006
Autism Mom Discusses TV Researcher
J.B. Handley: Hey CDC, You Forgot to Count Our Son
Hey CDC, You Forgot to Count Our Son
By J.B. Handley
www.generationrescue.org
I'll never forget the late fall of 2003. It felt like every day on the news I was reading another story about the flu outbreak that was killing children in Colorado and other places, I can't quite remember where.
We were panicked. With two young small boys, death from flu was horrifying, and the news also explained how limited the supply of flu vaccines was around the country. I still remember the day I came to work with the sole focus of finding flu vaccine somewhere, anywhere to help my babies. After dozens of calls, I felt lucky enough to
happen upon a doctor with some extra vaccines who was ready to see our boys immediately. Whew, bullet dodged, I figured.
Our youngest son, Jamison, was the highest priority. Fourteen months old, he was sick a lot more than his four year old older brother. Jamison was on antibiotics all the time, and he had a lot of eczema. Could he handle the flu? It seemed like it would really be tough on him – he was at risk, he needed this shot.
I couldn't make the shot appointment, I was busy. As usual, my wife soldiered on without me and endured the cries from her two warriors who got vaccinated. Jamison had been particularly brave about the whole thing. How great, we thought! He's safe now!
Our Christmas video from the fall of 2003, just a couple weeks after the first flu shot, shows a happy and engaged Jamison, very excited about all the presents in our living room, and responding and watching his older brother celebrating. A happy kid, in our world, engaged. A part of the family.
January came. Flu deaths were still in the news, although not quite as often. The flu shot was actually a two-part shot that year. Get the flu shot, come back in 4 weeks later for a booster. That's what they told us. We decided to skip the booster for our oldest son, but we knew Jamison really needed it. Dutifully again, we made sure Jamison got that second shot.
**
A study came out this week in the Journal of the American Medical Association. It's called: "Safety of Trivalent Inactivated Influenza Vaccine in Children 6 to 23 months old."
It basically says the flu shot is perfectly safe for kids. It also says a couple of interesting things.
One. "Financial support for this study was provided in full by the Centers for Disease Control and Prevention."
Two. "Our primary outcome measure was any medically attended event associated with trivalent inactivated influenza vaccine in a 14-day risk window after vaccination."
Oh, and there's a third thing it says, too. It's at the end of the study. It says of the nineteen authors, nine have financial ties to vaccine manufacturers. And, four more of the authors work at CDC. Here's one of nine examples of the financial disclosure:
"Dr. Marcy reports working as a consultant for Sanofi Pasteur, Merck, GlaxoSmithKline, MedImmune, and Abbott, and serving on the speakers' bureau for Sanofi Pasteur and GlaxoSmithKline." (Note: Sanofi Pasteur is the leading manufacturer of flu vaccine.)
I don't know, Dr. Marcy, I just don't know, can I trust you to tell me the truth if the vaccine hurt our kid?
Oh, and they also wrote this, towards the end of the study:
"It is also important to note that there is scant data on the efficacy and effectiveness of influenza vaccine in young children."
**
Like many parents trying to understand what happened to their child, we re-traced Jamison's steps back to that fall and Christmas of 2003. The decline seems to have begun sometime in January, soon after the second flu shot. He began to play alone. His words stopped. He started running back and forth along walls and fences. For hours.
Like many parents, it took us a while to figure out what was happening to our son. By March, we thought something was wrong. By April, we began to panic a little as his behaviors got worse and he seemed to always be sick. By May, we happened upon this test called the M-CHAT, and we realized our son met the criteria for autism.
Jamison didn't make the JAMA study. He didn't go to the doctor or hospital in the 2 weeks after he got the flu shot. His medical condition today, autism, is not one of the outcomes the study authors looked for.
In 2003, when Jamison got his flu shot, I didn't know that the CDC had released a 1999 statement saying:
"Because any potential risk is of concern, the Public Health Service, the American Academy of Pediatrics, and vaccine manufacturers agree that thimerosal-containing vaccines should be removed as soon as possible. Similar conclusions were reached this year in a meeting attended by European regulatory agencies, the European vaccine
manufacturers, and the US FDA which examined the use of thimerosal-containing vaccines produced or sold in European countries."
I also didn't know the American Academy of Pediatrics released a statement in 2001 saying:
"Mercury in all of its forms is toxic to the fetus and children and efforts should be made to reduce exposure to the extent possible to pregnant women and children as well as the general population."
Jamison's 2 flu shots contained mercury. 25 micrograms each. I didn't know that. I do know that every time I hear the word "flu vaccine" I get sick to my stomach. How come CDC or AAP didn't make a point of telling me flu vaccine in 2003 still contained mercury? It would have impacted our decision.
I wish the thirteen study authors with clear conflicts could come to my house, watch my son's videotape, and review his medical tests. I wish all of them would have spent their time differently. Four years passed between the CDC's press release and Jamison's vaccine. Did the mercury really need to be there? And, why is it still there today, seven years later?
CDC, our son is not part of the data in your study. But he should be.
Oct 26, 2006
By J.B. Handley
www.generationrescue.org
I'll never forget the late fall of 2003. It felt like every day on the news I was reading another story about the flu outbreak that was killing children in Colorado and other places, I can't quite remember where.
We were panicked. With two young small boys, death from flu was horrifying, and the news also explained how limited the supply of flu vaccines was around the country. I still remember the day I came to work with the sole focus of finding flu vaccine somewhere, anywhere to help my babies. After dozens of calls, I felt lucky enough to
happen upon a doctor with some extra vaccines who was ready to see our boys immediately. Whew, bullet dodged, I figured.
Our youngest son, Jamison, was the highest priority. Fourteen months old, he was sick a lot more than his four year old older brother. Jamison was on antibiotics all the time, and he had a lot of eczema. Could he handle the flu? It seemed like it would really be tough on him – he was at risk, he needed this shot.
I couldn't make the shot appointment, I was busy. As usual, my wife soldiered on without me and endured the cries from her two warriors who got vaccinated. Jamison had been particularly brave about the whole thing. How great, we thought! He's safe now!
Our Christmas video from the fall of 2003, just a couple weeks after the first flu shot, shows a happy and engaged Jamison, very excited about all the presents in our living room, and responding and watching his older brother celebrating. A happy kid, in our world, engaged. A part of the family.
January came. Flu deaths were still in the news, although not quite as often. The flu shot was actually a two-part shot that year. Get the flu shot, come back in 4 weeks later for a booster. That's what they told us. We decided to skip the booster for our oldest son, but we knew Jamison really needed it. Dutifully again, we made sure Jamison got that second shot.
**
A study came out this week in the Journal of the American Medical Association. It's called: "Safety of Trivalent Inactivated Influenza Vaccine in Children 6 to 23 months old."
It basically says the flu shot is perfectly safe for kids. It also says a couple of interesting things.
One. "Financial support for this study was provided in full by the Centers for Disease Control and Prevention."
Two. "Our primary outcome measure was any medically attended event associated with trivalent inactivated influenza vaccine in a 14-day risk window after vaccination."
Oh, and there's a third thing it says, too. It's at the end of the study. It says of the nineteen authors, nine have financial ties to vaccine manufacturers. And, four more of the authors work at CDC. Here's one of nine examples of the financial disclosure:
"Dr. Marcy reports working as a consultant for Sanofi Pasteur, Merck, GlaxoSmithKline, MedImmune, and Abbott, and serving on the speakers' bureau for Sanofi Pasteur and GlaxoSmithKline." (Note: Sanofi Pasteur is the leading manufacturer of flu vaccine.)
I don't know, Dr. Marcy, I just don't know, can I trust you to tell me the truth if the vaccine hurt our kid?
Oh, and they also wrote this, towards the end of the study:
"It is also important to note that there is scant data on the efficacy and effectiveness of influenza vaccine in young children."
**
Like many parents trying to understand what happened to their child, we re-traced Jamison's steps back to that fall and Christmas of 2003. The decline seems to have begun sometime in January, soon after the second flu shot. He began to play alone. His words stopped. He started running back and forth along walls and fences. For hours.
Like many parents, it took us a while to figure out what was happening to our son. By March, we thought something was wrong. By April, we began to panic a little as his behaviors got worse and he seemed to always be sick. By May, we happened upon this test called the M-CHAT, and we realized our son met the criteria for autism.
Jamison didn't make the JAMA study. He didn't go to the doctor or hospital in the 2 weeks after he got the flu shot. His medical condition today, autism, is not one of the outcomes the study authors looked for.
In 2003, when Jamison got his flu shot, I didn't know that the CDC had released a 1999 statement saying:
"Because any potential risk is of concern, the Public Health Service, the American Academy of Pediatrics, and vaccine manufacturers agree that thimerosal-containing vaccines should be removed as soon as possible. Similar conclusions were reached this year in a meeting attended by European regulatory agencies, the European vaccine
manufacturers, and the US FDA which examined the use of thimerosal-containing vaccines produced or sold in European countries."
I also didn't know the American Academy of Pediatrics released a statement in 2001 saying:
"Mercury in all of its forms is toxic to the fetus and children and efforts should be made to reduce exposure to the extent possible to pregnant women and children as well as the general population."
Jamison's 2 flu shots contained mercury. 25 micrograms each. I didn't know that. I do know that every time I hear the word "flu vaccine" I get sick to my stomach. How come CDC or AAP didn't make a point of telling me flu vaccine in 2003 still contained mercury? It would have impacted our decision.
I wish the thirteen study authors with clear conflicts could come to my house, watch my son's videotape, and review his medical tests. I wish all of them would have spent their time differently. Four years passed between the CDC's press release and Jamison's vaccine. Did the mercury really need to be there? And, why is it still there today, seven years later?
CDC, our son is not part of the data in your study. But he should be.
Oct 26, 2006
Awareness for A Documentary by One Of Our Own - Don King
Laird crosses channel for Autism awareness documentary
Oct 26, 2006 / Community
All Islands, Kauai, Oahu
by Katherine Fisher- Hawaii Health Guide.com
What could inspire two of the world's best watermen, Laird Hamilton and David Kalama to take a week and go on a 500 mile marathon across Hawaii, traveling by bike and surf board from South Point on the Big Island to the Kauai’s Kilauea lighthouse, the northernmost point in the main Hawaiian Island chain?
The purpose of the marathon odyssey is to raise funds to promote a documentary film about autism made by Don King and his wife, Julianne Yamamoto King. The film “Beautiful Son” is about the Kings’ son Beau, 6, who has autism.
It was Hamilton's idea to undertake the seven-day feat to publicize a documentary, "Beautiful Son," produced by friend and underwater cinematographer Don King about his autistic 6-year-old son, Beau.
Don King said he is hoping to raise $40,000 to distribute the nonprofit film to a wider audience. King's wife, Julianne Yamamoto King, is director and producer of the film about their quest to "recover Beau from autism."
Aquatic legends, Hamilton, 42, and Kalama, 41, have been tow-in surfing partners for the past several years.
Hamilton constantly tests his physical endurance. His latest adventure in May entailed a 426-kilometer crossing between London and Paris in two days, biking and paddling.
King said the hardest part of the journey is paddling from Oahu to Kauai Sunday and Monday, as "only a few people have done this. ... It's a really rough channel." The Alenuihaha Channel crossing between the Big Island and Maui is also grueling, he said. Along the way the pair encountered winds, nigh
"I was really touched by Laird's generosity for offering to do this crossing as a fund raiser for the film. While he and David Kalama did it together, I followed as a film maker and saw firsthand the amount of effort it took to undertake the challenge, I went to thank Laird, and Laird just told me: "This amount of effort is what autistic families are dealing with all the time."
King has filmed Hamilton, for commercials and a film that won for best documentary short at the 2005 Maui Film Festival. King, best known for his underwater cinematography, currently shoots for the popular TV series "Lost."
The Kings are hoping to raise public awareness through their film as well as funds for research to help find a cure for the disease.
Father and film maker Don King said the Big Issues around autism include the facts that has become so common. The incidence of autism has increased from 1 in 10,000 in the 1970s to 1 in 150 today, an increase of over 6,000% a huge increase in the last twenty years King said Beau was normal, happy and bright his first two years of life, but by the time he turned 3, his son was not even making eye contact -- "the light went out."
Autism is a neurological disorder that severely affects development according to the Centers for Disease Control and the American Academy of Pediatrics.
Considering how common Autism has become (more then childhood leukemia, diabetes and cancers combined) yet receives less attention then other childhood diseases. "It is imperative as a society that we figure this out right away disorder that affects family and society the cost of educating and taking care of autistic children. It costs about 3.2 million dollars over course of lifetime for care of autistic children according to Harvard. Autism occurs by the age of three. There is some kind of window of vulnerability in development.
"For Beau we have tried biomedical intervention after seeing the success with some kids are having with special diets, heavy metals detox. Beau did receive mercury-containing vaccines. He appeared to be developing normally but he also swallowed mercury amalgam filings when he was about 2.5 years. He has tested high for body burden mercury.
Beau speaks and understands but cannot hold a conversation. It is the distance between Beau and the rest of the world that burdens their heart most heavily, King said. Thankfully, he is not prone to violent outbursts -- "he's a very sweet kid with very few behavioral problems," King said.
With my own son, there have been a lot of little things that have helped, like seeing how well he responds to behavior therapy. It is critical the autistic children receive Applied Behavior Analysis but families are struggling to get these services.
A lot of parents have had success with special diet and so have we, by eliminating foods containing casein (dairy) Some kids respond well but this is not part of a standard treatment protocol. We need more study in this area, and have this (dietary and environmental causes) be part of doctors training. In addition to genetics, research and focus should be on possible external triggers and treatment.
One theory is that autistic children are less able to detoxify themselves making them more vulnerable to effects of accomulated toxins.
But the couple does not want to just "tolerate it (autism)," he said. For a parent to be told there is no established treatment for something "way too common" is unacceptable to him -- "there's got to be something. I wish we knew more," King said.
"It is discouraging the at doctors would not take a precautionary approach to mercury. Especially when your child regresses, and you want to bring them back, there has to be a way to bring them back, so when you run into the old theory of autism being untreatable and you want the best for your child and you want the success story. The government has been dragging its feet because of the controversy over Mercury. Mercury is a Nero toxin and should not be used in childhood vaccines. Most flu vaccines contain mercury, but it is also available in a mercury free version. Whenever there is a mercury free vaccine option that is the one we should use.
"My wife and I tried last year to put into legislation to ban mercury in vaccines in Hawaii, it passed but was vetoed by the governor"
DONATIONS SOUGHT
Tax-deductible donations to promote the documentary film "Beautiful Son" can be made at www.beautifulson.com or mailed to Swell Cinema, 182 Grand View Ave., San Francisco, CA 94114.
Hamilton says through this fundraiser he expects to "see, feel, and experience different things this week. Hopefully we get people to realize how lucky they are to be healthy."
Oct 26, 2006 / Community
All Islands, Kauai, Oahu
by Katherine Fisher- Hawaii Health Guide.com
What could inspire two of the world's best watermen, Laird Hamilton and David Kalama to take a week and go on a 500 mile marathon across Hawaii, traveling by bike and surf board from South Point on the Big Island to the Kauai’s Kilauea lighthouse, the northernmost point in the main Hawaiian Island chain?
The purpose of the marathon odyssey is to raise funds to promote a documentary film about autism made by Don King and his wife, Julianne Yamamoto King. The film “Beautiful Son” is about the Kings’ son Beau, 6, who has autism.
It was Hamilton's idea to undertake the seven-day feat to publicize a documentary, "Beautiful Son," produced by friend and underwater cinematographer Don King about his autistic 6-year-old son, Beau.
Don King said he is hoping to raise $40,000 to distribute the nonprofit film to a wider audience. King's wife, Julianne Yamamoto King, is director and producer of the film about their quest to "recover Beau from autism."
Aquatic legends, Hamilton, 42, and Kalama, 41, have been tow-in surfing partners for the past several years.
Hamilton constantly tests his physical endurance. His latest adventure in May entailed a 426-kilometer crossing between London and Paris in two days, biking and paddling.
King said the hardest part of the journey is paddling from Oahu to Kauai Sunday and Monday, as "only a few people have done this. ... It's a really rough channel." The Alenuihaha Channel crossing between the Big Island and Maui is also grueling, he said. Along the way the pair encountered winds, nigh
"I was really touched by Laird's generosity for offering to do this crossing as a fund raiser for the film. While he and David Kalama did it together, I followed as a film maker and saw firsthand the amount of effort it took to undertake the challenge, I went to thank Laird, and Laird just told me: "This amount of effort is what autistic families are dealing with all the time."
King has filmed Hamilton, for commercials and a film that won for best documentary short at the 2005 Maui Film Festival. King, best known for his underwater cinematography, currently shoots for the popular TV series "Lost."
The Kings are hoping to raise public awareness through their film as well as funds for research to help find a cure for the disease.
Father and film maker Don King said the Big Issues around autism include the facts that has become so common. The incidence of autism has increased from 1 in 10,000 in the 1970s to 1 in 150 today, an increase of over 6,000% a huge increase in the last twenty years King said Beau was normal, happy and bright his first two years of life, but by the time he turned 3, his son was not even making eye contact -- "the light went out."
Autism is a neurological disorder that severely affects development according to the Centers for Disease Control and the American Academy of Pediatrics.
Considering how common Autism has become (more then childhood leukemia, diabetes and cancers combined) yet receives less attention then other childhood diseases. "It is imperative as a society that we figure this out right away disorder that affects family and society the cost of educating and taking care of autistic children. It costs about 3.2 million dollars over course of lifetime for care of autistic children according to Harvard. Autism occurs by the age of three. There is some kind of window of vulnerability in development.
"For Beau we have tried biomedical intervention after seeing the success with some kids are having with special diets, heavy metals detox. Beau did receive mercury-containing vaccines. He appeared to be developing normally but he also swallowed mercury amalgam filings when he was about 2.5 years. He has tested high for body burden mercury.
Beau speaks and understands but cannot hold a conversation. It is the distance between Beau and the rest of the world that burdens their heart most heavily, King said. Thankfully, he is not prone to violent outbursts -- "he's a very sweet kid with very few behavioral problems," King said.
With my own son, there have been a lot of little things that have helped, like seeing how well he responds to behavior therapy. It is critical the autistic children receive Applied Behavior Analysis but families are struggling to get these services.
A lot of parents have had success with special diet and so have we, by eliminating foods containing casein (dairy) Some kids respond well but this is not part of a standard treatment protocol. We need more study in this area, and have this (dietary and environmental causes) be part of doctors training. In addition to genetics, research and focus should be on possible external triggers and treatment.
One theory is that autistic children are less able to detoxify themselves making them more vulnerable to effects of accomulated toxins.
But the couple does not want to just "tolerate it (autism)," he said. For a parent to be told there is no established treatment for something "way too common" is unacceptable to him -- "there's got to be something. I wish we knew more," King said.
"It is discouraging the at doctors would not take a precautionary approach to mercury. Especially when your child regresses, and you want to bring them back, there has to be a way to bring them back, so when you run into the old theory of autism being untreatable and you want the best for your child and you want the success story. The government has been dragging its feet because of the controversy over Mercury. Mercury is a Nero toxin and should not be used in childhood vaccines. Most flu vaccines contain mercury, but it is also available in a mercury free version. Whenever there is a mercury free vaccine option that is the one we should use.
"My wife and I tried last year to put into legislation to ban mercury in vaccines in Hawaii, it passed but was vetoed by the governor"
DONATIONS SOUGHT
Tax-deductible donations to promote the documentary film "Beautiful Son" can be made at www.beautifulson.com or mailed to Swell Cinema, 182 Grand View Ave., San Francisco, CA 94114.
Hamilton says through this fundraiser he expects to "see, feel, and experience different things this week. Hopefully we get people to realize how lucky they are to be healthy."
Med Page: Alternative Treatments Endemic Among Autistic Kids
AACAP: Alternative Treatments Endemic Among Autistic Kids
By Crystal Phend, Staff Writer, MedPage Today
October 27, 2006
SAN DIEGO, Calif., Oct. 27 -- Among autistic children and adolescents, special diets, vitamin supplements and a variety of complimentary and alternative medicine strategies are nearly universal approaches, reported researchers here.
Almost every autistic patient (93.8%) surveyed received some form of nutritional or dietary intervention, said W. Ben Gibbard, M.D., M.C.S., of the University of Calgary in Alberta, in a presentation at the American Academy of Child and Adolescent Psychiatry meeting.
Most had tried many different treatments-the average number used was 9.6-across a wide range of products and strategies encompassing 173 separate types.
The most helpful appeared to be an additive- and preservative-free diet (more than 80% of those who tried it called it helpful), a chocolate-free diet (70%), and herbal remedies (71.4%).
Among the most commonly used treatments were multivitamins and gluten- or casein-free diets.
"Clinicians should inquire about use of complimentary and alternative therapies in their patients," Dr. Gibbard said in an oral session. He suggested referencing specific groups of treatments ("Do you use any special supplements or diet?") while questioning families in a nonjudgmental and sensitive manner.
The investigators surveyed 176 families of children with an autism spectrum disorder who were living in southern Alberta. The 22-page survey was mailed to the families and the parents checked off therapies they had ever tried, past or present, and rated how helpful each had been.
The mean age of the autistic children was 8.9 years and 83.5% were male. Classic autism was the most common diagnosis for the patients (52.8%) while 6.3% also had epilepsy and 2.8% had a genetic condition.
Diet or nutritional supplementation was tried by 45.5% of the families with an average of 5.2 different types of these used by each family (range 1 to 28).
The researchers reported:
* 17.1% tried some kind of omega fatty acid, with 64.3% rating it helpful,
* 10.2% tried an omega-6 fatty acid, with 61.1% rating it helpful,
* 10.2% used an omega-9 fatty acid, with 66.7% rating it helpful,
* 12.5% tried dimethylglycine, with 54.5% rating it helpful, and
* 6.3% tried Eflax oil, with 36.4% rating it helpful.
Dietary therapies were tried by 37.6% of the families. The findings were (percentage tried, percentage rated helpful):
* Gluten-free diet (23.3%, 61.0%),
* Casein-free diet (21.6%, 60.5%), and
* Lactose-free diet (17.6%, 45.2%).
Vitamins and minerals were tried by 63.1% of respondents, making it the most popular category. Nearly 40% had tried a vitamin or mineral supplement besides a multivitamin. The mean number tried was 3.2 (range 1 to 20). The researchers reported:
* 49.4% had tried a multivitamin with 35.6% reporting it helpful,
* 16.5% used an oral calcium supplement with 51.7% reporting it helpful,
* 14.8% tried oral vitamin C with 53.8% reporting it helpful,
* 16.5% had tried any magnesium supplement, and
* 14.2% used any vitamin B6 supplement.
Natural therapies had been used for 40.3% of the children (mean 2.0 different therapies). The most common were:
* Herbal remedies (11.9%, 71.4% rated as helpful),
* Evening primrose (9.1%, 31.3% rated as helpful), and
* Naturopathy (7.4%, 69.2% rated as helpful).
Dr. Gibbard said the findings may have affected by selection biased as with any postal survey. However, he said the study highlights the need for safety and efficacy data on these treatments that patients are clearly using.
While some may dismiss the helpful ratings as placebo effect, these rating may be better treated as open-label or case reports that can point research in the right direction, said session discussant Margaret D. Weiss, M.D., Ph.D., of the University of British Columbia in Vancouver.
"If we've got placebo effects like that in our stimulant trials, stimulants would be off the market," she said.
The Age of Autism: Many, Many More
The Age of Autism: Many, many more
By DAN OLMSTED
UPI Senior Editor
WASHINGTON, Oct. 16 (UPI) -- The debate over the cause or causes of autism has been hung up for years on a point that should have been settled by now: whether the rate is in fact increasing.
This column long ago concluded that, yes, the autism rate has risen dramatically over the past couple of decades. What's more, the disorder seemed to arise out of nowhere starting about 1930.
Both those points are controversial, to say the least. If in fact autism went from essentially zero in 1930 to 1-in-every-166 kids today, the prime suspect would be some new harmful exposure, not merely better recognition of a genetic, highly heritable disorder.
The issue can quickly get complicated: How do you define autism? How have the diagnostic boundaries changed? Is an autism diagnosis being substituted for mental retardation because it sounds less devastating or more, well, fashionable?
But all this is not as hard to untangle as some parties would have you believe. In 1943 a Johns Hopkins child psychiatrist named Leo Kanner identified the syndrome in a landmark paper, "Autistic Disturbances of Affective Contact." The 11 case histories he described among children born starting in 1931 were remarkably similar -- and "markedly and uniquely" different from anything previously reported, Kanner said.
Ultimately, a broader spectrum of pervasive developmental disorders was included -- from the milder Asperger's to Rett's Syndrome, which affects girls, to Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
The severe form first described by Kanner came to be known as "full-syndrome," "classic" or simply "Kanner autism."
That easily identifiable disorder is what we want to compare. I've suggested the current incidence of Kanner autism is somewhere between 40 to 60 children per 10,000; when you add in the other disorders on the spectrum, it rises to 60 to 80 per 10,000.
Of course, there is debate and uncertainty -- but within fairly tight parameters. Dr. Deborah Hirtz of the National Institute of Neurological Disorders and Stroke -- part of the National Institutes of Health -- estimates that about 10 to 30 children per 10,000 have classic autism today, and a combined total of 30 to 60 have one of the pervasive developmental disorders.
That's slightly lower than my numbers, but on the same order of magnitude.
Too bad, some say, we can't match those up with reliable figures from before 1980; then we would know if we're facing a real increase. The most frequent objection is the lack of a large, pre-1980 "prospective" study -- one that followed thousands of kids and recorded which ones developed the classic signs of autism. That would be a fair basis for comparison.
I've recently come across a 1975 study that does exactly that, although it was not the purpose of the research. The study was designed to look at bleeding during pregnancy as a risk factor for autism and childhood psychosis -- and did find a correlation. To do so, it examined the computerized records of 30,000 kids -- a huge sample -- born between 1959 and 1965 at 14 university-affiliated medical centers. All the children got several neurological, psychological and speech and hearing exams by age 8.
Here's the key statement: "From this group 14 were selected as conforming to the syndrome of infantile autism."
That translates to 4.7 kids per 10,000, way lower than any measure of today's rate. The researchers wrote that although they "make no claim to having identified every autistic child among the 30,000 children, the rate of 4.7 per 10,000" exactly matched another well-regarded study, "leading us to believe that most such children were included."
But what about kids who back then were mistakenly labeled schizophrenic or had other "pervasive" disorders that now would land them on the autism spectrum? Well, the researchers studied the records again and, this time, identified "additional children who, although not having the classical syndrome of infantile autism, were apparently psychotic. Six such children were found, all labeled by at least one observer as severely disturbed, psychotic-like, autistic, or childhood schizophrenic."
So let's include them in our "autism spectrum." That gives us 14 classically autistic kids, plus six more with some sort of severe developmental disorder, for a total of 20 kids out of 30,000.
Again, the math is simple -- that's just 6.7 kids per 10,000, far below even the low-end estimate of 30 per 10,000 for all the spectrum disorders today cited by the NIH's Hirtz.
The study was published in the highly credible "Journal of Autism and Childhood Schizophrenia" in 1975. And get this: "Children with infantile autism and childhood psychosis were identified by the National Institute of Neurological Disease and Stroke Collaborative Pre-Natal Study." That's Hirtz's institute.
We're talking apples and apples, and a lot more of them today than 35 or 40 years ago. The implications are as disturbing as they are (or should be) obvious.
By DAN OLMSTED
UPI Senior Editor
WASHINGTON, Oct. 16 (UPI) -- The debate over the cause or causes of autism has been hung up for years on a point that should have been settled by now: whether the rate is in fact increasing.
This column long ago concluded that, yes, the autism rate has risen dramatically over the past couple of decades. What's more, the disorder seemed to arise out of nowhere starting about 1930.
Both those points are controversial, to say the least. If in fact autism went from essentially zero in 1930 to 1-in-every-166 kids today, the prime suspect would be some new harmful exposure, not merely better recognition of a genetic, highly heritable disorder.
The issue can quickly get complicated: How do you define autism? How have the diagnostic boundaries changed? Is an autism diagnosis being substituted for mental retardation because it sounds less devastating or more, well, fashionable?
But all this is not as hard to untangle as some parties would have you believe. In 1943 a Johns Hopkins child psychiatrist named Leo Kanner identified the syndrome in a landmark paper, "Autistic Disturbances of Affective Contact." The 11 case histories he described among children born starting in 1931 were remarkably similar -- and "markedly and uniquely" different from anything previously reported, Kanner said.
Ultimately, a broader spectrum of pervasive developmental disorders was included -- from the milder Asperger's to Rett's Syndrome, which affects girls, to Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
The severe form first described by Kanner came to be known as "full-syndrome," "classic" or simply "Kanner autism."
That easily identifiable disorder is what we want to compare. I've suggested the current incidence of Kanner autism is somewhere between 40 to 60 children per 10,000; when you add in the other disorders on the spectrum, it rises to 60 to 80 per 10,000.
Of course, there is debate and uncertainty -- but within fairly tight parameters. Dr. Deborah Hirtz of the National Institute of Neurological Disorders and Stroke -- part of the National Institutes of Health -- estimates that about 10 to 30 children per 10,000 have classic autism today, and a combined total of 30 to 60 have one of the pervasive developmental disorders.
That's slightly lower than my numbers, but on the same order of magnitude.
Too bad, some say, we can't match those up with reliable figures from before 1980; then we would know if we're facing a real increase. The most frequent objection is the lack of a large, pre-1980 "prospective" study -- one that followed thousands of kids and recorded which ones developed the classic signs of autism. That would be a fair basis for comparison.
I've recently come across a 1975 study that does exactly that, although it was not the purpose of the research. The study was designed to look at bleeding during pregnancy as a risk factor for autism and childhood psychosis -- and did find a correlation. To do so, it examined the computerized records of 30,000 kids -- a huge sample -- born between 1959 and 1965 at 14 university-affiliated medical centers. All the children got several neurological, psychological and speech and hearing exams by age 8.
Here's the key statement: "From this group 14 were selected as conforming to the syndrome of infantile autism."
That translates to 4.7 kids per 10,000, way lower than any measure of today's rate. The researchers wrote that although they "make no claim to having identified every autistic child among the 30,000 children, the rate of 4.7 per 10,000" exactly matched another well-regarded study, "leading us to believe that most such children were included."
But what about kids who back then were mistakenly labeled schizophrenic or had other "pervasive" disorders that now would land them on the autism spectrum? Well, the researchers studied the records again and, this time, identified "additional children who, although not having the classical syndrome of infantile autism, were apparently psychotic. Six such children were found, all labeled by at least one observer as severely disturbed, psychotic-like, autistic, or childhood schizophrenic."
So let's include them in our "autism spectrum." That gives us 14 classically autistic kids, plus six more with some sort of severe developmental disorder, for a total of 20 kids out of 30,000.
Again, the math is simple -- that's just 6.7 kids per 10,000, far below even the low-end estimate of 30 per 10,000 for all the spectrum disorders today cited by the NIH's Hirtz.
The study was published in the highly credible "Journal of Autism and Childhood Schizophrenia" in 1975. And get this: "Children with infantile autism and childhood psychosis were identified by the National Institute of Neurological Disease and Stroke Collaborative Pre-Natal Study." That's Hirtz's institute.
We're talking apples and apples, and a lot more of them today than 35 or 40 years ago. The implications are as disturbing as they are (or should be) obvious.
Supreme Court to Hear Autism Ed Case
High court to hear of autism
Posted 10/27/2006 2:58 PM ET
WASHINGTON (AP) — The Supreme Court agreed Friday to consider an appeal from an autistic child and his parents, who want to sue over his school accommodations without hiring a lawyer.
Jeff and Sandee Winkelman say they cannot afford an attorney to argue their court case against the Parma, Ohio, school district over the education of their son, Jacob.
The 6th U.S. Circuit Court of Appeals ruled that the parents had to find a lawyer, although other federal courts have ruled differently in cases under the Individuals with Disabilities in Education Act.
The Bush administration urged justices to take the case, saying Congress clearly intended parents to be able to represent their children in such court proceedings.
The Winkelmans contested Parma's plan to educate Jacob at a public school. They wanted the district to pay for his $56,000 yearly enrollment in a private school that specializes in educating autistic children.
Whether Jacob should have private schooling at public expense is not before the Supreme Court, only his parents' right to go into federal court without a lawyer.
The Winkelmans have spent about $30,000 in legal fees since first contesting Jacob's treatment in 2003. Jeff Winkelman has taken a second job while his wife has researched previous court rulings and written her own filings.
The case number is Jacob Winkelman v. Parma City School District, 05-983.
Posted 10/27/2006 2:58 PM ET
WASHINGTON (AP) — The Supreme Court agreed Friday to consider an appeal from an autistic child and his parents, who want to sue over his school accommodations without hiring a lawyer.
Jeff and Sandee Winkelman say they cannot afford an attorney to argue their court case against the Parma, Ohio, school district over the education of their son, Jacob.
The 6th U.S. Circuit Court of Appeals ruled that the parents had to find a lawyer, although other federal courts have ruled differently in cases under the Individuals with Disabilities in Education Act.
The Bush administration urged justices to take the case, saying Congress clearly intended parents to be able to represent their children in such court proceedings.
The Winkelmans contested Parma's plan to educate Jacob at a public school. They wanted the district to pay for his $56,000 yearly enrollment in a private school that specializes in educating autistic children.
Whether Jacob should have private schooling at public expense is not before the Supreme Court, only his parents' right to go into federal court without a lawyer.
The Winkelmans have spent about $30,000 in legal fees since first contesting Jacob's treatment in 2003. Jeff Winkelman has taken a second job while his wife has researched previous court rulings and written her own filings.
The case number is Jacob Winkelman v. Parma City School District, 05-983.
October 28, 2006
BMJ: Influenza Vaccine Programs May Be Pointless
Article in BMJ discounts the usefulness of the flu vaccine. Here is the BMJ article preceeded by Medical News Today's summary of it:
The BMJ article:
Influenza Vaccine Programs May Be Pointless
Main Category: Flu / SARS News
Article Date: 28 Oct 2006 - 0:00am (PDT)
Written by: Christian Nordqvist
Editor: Medical News Today
Influenza vaccination programs, which cost nations millions of dollars every year, could be a waste of time and money, says Dr. Tom Jefferson, Cochrane Vaccines Field, Rome, Italy. Jefferson says he hopes his findings will make North American and European taxpayers wonder whether the effort and expense are justified.
You can read about his findings in The British Medical Journal (BMJ), October 28.
In this study, Jefferson examined all published papers worldwide that reported on the effects of inactivated vaccines (vaccines with dead viruses). In other words, he studied the reviews of all studies. He concluded that flu shot campaigns have either no effect, or a very negligible effect, on the number of hospitalizations, work/school time lost, complications from flu, or death from flu.
Jefferson said "I looked at the evidence described by systematic reviews and confronted it with policy and I found that there is a massive gap. Almost none of the benefits that these policy documents list are actually given by inactivated vaccines or, if they are, they are given in slighter measure." He said he is not sure why this is so. He suggested it could be a result of inadequate surveillance systems, and/or diagnosing too many influenza-like respiratory illnesses as flu (when they are not). He added that "In most surveillance systems, you actually have an almost year-round epidemic which, in fact, is not influenza. It's caused by other agents." He criticized many of the studies he looked through, saying they were weak.
According to official figures (CDC), approximately 200,000 Americans get flu so badly each year that they have to be hospitalized - about 36,000 people die each year as a result of catching flu in the USA.
Jefferson said he was surprised to see such a large gap between vaccination campaign policy and evidence of its effectiveness.
"Influenza vaccination: policy versus evidence"
Tom Jefferson
BMJ 2006;333:912-915 (28 October), doi:10.1136/bmj.38995.531701.80
The BMJ article:
Public health
Influenza vaccination: policy versus evidence
Tom Jefferson, coordinator1
1 Cochrane Vaccines Field, Anguillara Sabazia, Roma 00061, Italy jefferson.tom@gmail.com
Each year enormous effort goes into producing influenza vaccines for that specific year and delivering them to appropriate sections of the population. Is this effort justified?
Viral infections of the respiratory tract impose a high burden on society. In the last half of the 20th century, efforts to prevent or minimise their impact centred on the use of influenza vaccines. Each year enormous effort goes into producing that year's vaccine and delivering it to appropriate sections of the population. Here, I will discuss policies on the use of inactivated vaccines for seasonal influenza; the evidence for their efficacy, effectiveness, and safety ("effects"); and possible reasons for the gap between policy and evidence.
Policies
Every vaccination campaign has stated aims against which its effects must be measured. The US Advisory Committee on Immunisation Practices produces a regularly updated rationale for vaccination against influenza.1 The current version identifies 11 categories of patients at high risk of complications from influenza (box).
The rationale rests on the heavy burden that influenza imposes on the population and the benefits of vaccination. For example, reductions in cases, admissions to hospital, mortality of elderly people in families with children, contacts with healthcare professionals, antibiotic prescriptions, and absenteeism for children and household contacts are the main arguments for extending vaccination to healthy children aged 6-23 months in the United States.2 Canada introduced a similar policy in 2004.3 Less comprehensive policies recommending vaccination for all people aged 60 or 65 and over are in place in 40 of 51 developed or rapidly developing countries.4 On the basis of single studies, the World Health Organization estimates that "vaccination of the elderly reduces the risk of serious complications or of death by 70-85%."5 Given the global nature of these recommendations, what type of evidence should we expect to support them and what does available evidence tell us?4
Which evidence?
When considering the best evidence for vaccination we must take into account the unique epidemiological features of influenza viruses and the rationale for immunisation. The incidence and circulation of seasonal influenza and other respiratory viruses vary greatly each year, each season, and even in each setting. A systematic review of the incidence of influenza in people up to 19 years' old reported a seasonal variability of 0-46%; during a five year period the average incidence was 4.6% in this age group. During a period of 25 years the incidence was 9.5% in children under 5.6 Because of this variability and lack of carryover protection from one year's vaccine to the next,7 especially if the virus changes its antigenic configuration, single studies reporting data from one or two seasons are difficult to interpret. Single studies are also not reliable sources for generalising and forecasting the effects of vaccines, especially when numbers are small. They introduce further instability into already problematic forecasting. Additional limitations to our forecasting ability are imposed by our use (and misuse) of studies assessing the effects of influenza vaccines. Although the effect assessed depends on the aims of the particular campaign, most concentrate on serious effects (such as pneumonia or death) and person to person transmission (table 1). Field efficacy studies are only relevant when viral circulation is high, but no one can forecast with precision the impact on next year's influenza.
Activists Putting Heat on Barton
Activists putting heat on Barton
Autism, breast cancer bills on hold; he says agency needs overhaul
08:02 AM CDT on Saturday, October 28, 2006
By SUDEEP REDDY and RANDY LEE LOFTIS / The Dallas Morning News
Heading one of Congress' most powerful committees, Rep. Joe Barton has become the No. 1 enemy of groups pushing for more research into two of the nation's most prevalent diseases – autism and breast cancer.
The Ennis Republican is blocking two bills that have widespread support on Capitol Hill while he tries to overhaul the federal agency that directs most disease research.
The result has been a torrent of attacks from advocacy groups, families and others fighting for research dollars, including talk show host Don Imus. They're furious at the 11-term congressman, saying he is thwarting efforts to find cures. Others have raised questions about whether his opposition is tied to aspects of the research that would look into environmental issues.
"Why would he do this? Why would he throw his body in front of this train?" asked Elizabeth Emken, a board member of Cure Autism Now whose 14-year-old son has the mysterious neurobiological disorder. "Autism is a national emergency and needs immediate attention."
Mr. Barton, chairman of the far-reaching House Energy and Commerce Committee, says he wants to remove politics from decisions about which diseases get federal research funds.
"I'm opposed to continuing to do business the old-fashioned way, where whichever group can create the most pressure is the group that's taken care of," he said. "We have lots of health areas that need to be addressed in a comprehensive and fair way."
Each of the blocked bills would tag money for research into possible environmental causes of the disorders – $180 million over six years for breast cancer; $45 million over five years for autism, part of a $1 billion package for autism research and programs.
While Mr. Barton has frequently clashed with environmentalists over topics ranging from air pollution to global warming, he said his opposition has nothing to do with those environmental components. Such decisions should be left to scientists, he said.
But his Democratic opponent, David Harris, is raising the environmental issue in their congressional race. He suggested that Mr. Barton is blocking the bill because of the environmental component.
"It just doesn't sit well with me," Mr. Harris said, that "you don't want environmental considerations in the bill because people that support your campaign are major polluters of the environment."
Mr. Barton, he said, is "trying to push more coal power plants into the district, create more pollution and more mercury. It's just one big vicious circle."
The 6th District includes portions of southern Tarrant County and sprawls southward.
Both the autism and breast cancer bills have a majority of House members co-sponsoring them – a sign that they would pass overwhelmingly if released from Mr. Barton's committee.
Parents of autistic children are appealing to House Speaker Dennis Hastert to overrule Mr. Barton. They plan to demonstrate Monday in Richardson, where Mr. Hastert will be attending a fundraiser.
Proponents of the research bills say they find Mr. Barton's opposition incomprehensible.
"Here's a group that did everything right, had an overwhelming majority of support in the Senate and the House," said Fran Visco, president of the National Breast Cancer Coalition. "All the research and analysis gets shut out by Joe Barton. It's absolutely infuriating. What a horrible civics lesson to give to the public."
Mr. Barton said majority support doesn't guarantee that any bill even gets a hearing. But he's heard the concerns of parents and others and said he's willing to work toward a solution.
"This idea that I've somehow double-crossed people is just flat wrong," he said. "I am on the side of the parents and grandparents of autistic children. I want to find a way to treat their children, to prevent the disease or alleviate it."
Taking on autism
The autism fight has drawn the most national attention, amid worries over an explosion in the number of autistic children.
In the 1980s, doctors found one of the developmental problems known collectively as autism spectrum disorders in 4 to 5 of every 10,000 U.S. children. In the 1990s, the rate had jumped to 30 to 60 per 10,000.
The increase could be due to more awareness, better and earlier diagnosis and a broader definition of autism. However, the figures are sobering: The Centers for Disease Control and Prevention says as many as 1 in 166 American kids has an autistic disorder.
Mike Bernoski, an Arlington resident who lives in Mr. Barton's district, learned last summer that his then-2-year-old son, Nathan, has autism. The family had known something was wrong since Nathan was 15 months old.
"He spent over 50 percent of every waking moment in a fit, crying," Mr. Bernoski said. "He was apathetic. There was no connection. He didn't look at you."
Extensive behavioral treatment – at a cost of more than $60,000 a year – turned Nathan around. He's started showing a personality, talking, laughing and hugging people, said Mr. Bernoski, who is racking up debt to pay for the therapy.
"It is unbelievable. You would not recognize the two kids," Mr. Bernoski said. "That's not the case for everybody. They have to watch their kids bang their heads against the wall because they don't have enough money. Imagine having to make that choice.
"All any autistic family wants, all any doctor wants, all the millions of people who work with autistic kids want is to find out what causes it and how to stop it."
For Mr. Bernoski, the battle over research funding has become a political motivator. He says he voted for Mr. Barton in the last election as part of his straight-ticket ballot. Next month, he said, he'll vote for Mr. Harris.
Mr. Harris said his campaign has been flooded with supporters since the autism issue drew national attention. Checks are flowing in; one of the first was $2,100 from a New York man, he said.
"I believe if we can spend $8 billion a month in Iraq, we can certainly allocate $1 billion for autism research and support networks for families of autistic children," said Mr. Harris, an Iraq war veteran.
Even if Mr. Barton retains his seat but Democrats take over the House on Nov. 7, he would be out of the energy and commerce chairman's job.
Mercury seen as culprit
Much of the research into what causes autism has been devoted to finding genetic links and environmental agents – whether drugs, pollution or other factors. A prime suspect is mercury, a toxic metal that is a powerful nerve poison.
Some researchers believe they've found mercury's fingerprints on autistic children. In one study, they tested the urine of children given drugs to force toxins out of their bodies. Autistic children excreted three times as much mercury as children without autism.
Many parents suspect thimerosal, a mercury-containing preservative once widely used in vaccines, as an autism trigger. But the research remains in dispute.
Coal-burning power plants also emit mercury. Researchers found in 2004 that school districts in Texas counties with higher industrial mercury emissions, mostly from coal power plants, had a higher percentage of children in special-education classes, especially for autism. Studies elsewhere also have linked mercury in the local environment with local autism rates. Until more detailed studies are done, however, scientists can't confirm the link.
Texas ranked first nationwide in air emissions of mercury reported to the Environmental Protection Agency – 15,147 pounds in 2004, the latest year available. New coal-burning plants proposed in Texas would increase that by nearly one-third, companies' permit requests show.
Political action committees and individuals associated with Dallas-based TXU, which proposes 11 of the 16 new coal-burning units, are Mr. Barton's third-biggest campaign donors this year, providing $24,000, according to the Center for Responsive Politics.
Mr. Barton said he's "never had a policy discussion with anybody" about the environmental focus in the two research bills. His objective, he said, is to leave decisions about disease research programs for scientists to make in an "open, transparent, merit-based, comprehensive system."
Targeting agency
In the three years he's been chairman of the Energy and Commerce Committee, Mr. Barton has been working to overhaul the National Institutes of Health, a massive agency that directs most federal disease research.
Currently, some funding decisions are made by agency officials, while others are required through legislation. And Congress has mandated dozens of projects over a half-century, often without linking them to existing work. As a result, Mr. Barton said, agency scientists don't talk to one another enough and sometimes unknowingly duplicate another's work.
"I'm really committed to transforming the way we do health research in the United States," Mr. Barton said.
His reform act passed the House last month by a 414-2 vote but needs Senate action. It would give the director, who is appointed by the president, more authority in allocating money for research. And it would establish a common fund for research to cure numerous diseases.
Congress could still consider legislation for disease-specific research programs, but Mr. Barton cautions that letting groups fight one another for funding just won't work.
"If you take that approach you end up not being able to do anything, because there's just not enough money. I don't think it's possible to do just a disease-specific bill for anybody – not just for autism but for anybody."
Critics take issue with the hands-off approach, saying lawmakers should step in when public health is at stake.
"Of course we should be telling NIH what to do," said Ms. Visco of the breast cancer group. "Congress' role is oversight. ... That is the kind of thing that should come from the taxpayers and that should come from the public."
Not holding back
Many autism groups support Mr. Barton's reform legislation, saying the structure of the National Institutes of Health should be improved. But they say a separate autism bill is vital as well.
Parents of autistic children are flooding Mr. Barton's office with calls. And the lobbying involves numerous public figures. Mr. Barton is under a constant assault from Mr. Imus, whose wife advocates for autism research. He has used his morning radio program to label Mr. Barton a "Republican dirt bag," "lying skunk," "awful human being" and numerous other terms in a bid to pressure the congressman.
Mr. Barton said the star-power protests are wearing thin. "I'm a little tired of big-time celebrities and big-time PR firms being paid lots of money and calling me names," he said.
But facing continued pressure, Mr. Barton said he wants to work with the Senate next month to find a compromise. He's offered a proposal that would incorporate many provisions of the autism legislation – including increased funding – and also overhaul the National Institutes of Health.
Critics say his proposal leaves out key pieces, including the environmental research program. They plan to continue their push to move the research bills through Congress.
http://www.dallasnews.com/sharedcontent/dws/news/nation/stories/DN-barton_28nat.ART.North.Edition1.3e00d4c.html
UPDATE: From Shelly Reynolds at Unlocking Autism
The following letter was submitted to the Editor of the Dallas Morning News. We encourage you to visit their website and post your opinion after reading the article at www.dallasnews.com http://www.dallasnews.com/cgi-bin/lettertoed.cgi?nl
Happy Writing!
Unlocking Autism
Thank for publishing such a well written article regarding Congressman Joe Barton and the Combating Autism Act.
With autism striking nearly one percent of the Nation's children and affecting one out of every sixty eight families today, it is unfathomable to me that Congressman Barton could possibly allow the burden of the reform of the National Institutes of Health to rest squarely on the shoulders of these children.
While I wholeheartedly agree with him that the NIH could use an overhaul, I vehemently disagree that all progress should come to a screeching halt in the meantime until that day arrives - whether those research dollars are spent on my own child with autism, breast cancer research or any other disease. After all, ask any American citizen today and they will most likely express that there are a variety of things that should be "overhauled" with regard the Congress of the United States - and yet, as citizens, we continue to elect Congressmen, pay their six figure salaries with our taxes and send them up to Washington to work for an average of 100 days a year.
We don't just arrest the "progress" of Congress because of existing procedures that need improvement.
Children with autism have long been swept under the "research funding" rug, regardless of the exponential growth in the number of children diagnosed each year. Our community will not allow that to continue. Our community is painfully aware that a Category 5 autism hurricane is gathering strength and bearing down on the shores of our country. If our leaders cannot muster the intestinal fortitude to stand in the gap and do what is right for these children, then it is our duty as parents, and American citizens, to lead them.
We are their constituents. In our community alone, there are 10 Million of us nationwide that can affect elections, and will. We have the memories of elephants. Our grass roots are growing and we are politically active.
Our leaders work for us. They can be fired. How often they forget that.
With kindest regards,
Shelley Hendrix Reynolds
President
Unlocking Autism
HuffPo: Rep. Watson on Hg in Dentristy
The Beginning of the End of Mercury in Dentistry
by Congresswoman Diane Watson
In a remarkable reversal of policy and precedent, the Food and Drug Administration (FDA) last month rejected its own staff report that concluded mercury amalgam fillings used by millions of Americans are safe. The panel of FDA advisors said the report did not objectively and clearly present all current data about the fillings.
Members of the advisory panel - consisting of medical doctors, dentists, and health professionals - repeatedly questioned the impact of dental mercury on children and the fetuses of pregnant women. They also said that more study is needed on the health effects of vapors that are emitted from mercury fillings.
Dental amalgam, deceptively called silver fillings, is a remnant of 19th Century medicine. Today more than 100 million Americans have mercury/silver fillings. But the vast majority, according to a 2006 Zogby poll, is not aware that silver fillings consist of 50% mercury, one of the most toxic substances known to man.
The FDA has already taken numerous steps to limit human and animal exposure to mercury. To date, it has banned mercury in disinfectants and thermometers, warned against mercury in certain foods, and prohibited the presence of mercury in all veterinary products.
Many governments around the world, however, have gone a step further by either limiting the use of or banning mercury fillings. The UK, for example, prohibits pregnant and lactating women from receiving amalgam fillings, and Scandinavian countries are phasing out the product. Canada has also restricted its use.
Despite growing scientific evidence and public awareness of the dangers of exposure to even small amounts of mercury, the FDA, the federal agency charged with regulating dental amalgam, still permits the sale of a dental product that has not been proven safe and classified as the law requires and is used inches from the brain. It continues to sanction commerce in silver fillings without disclosing to the American people that they contain a significant amount of mercury and emit mercury vapor during the entire life of the filling.
The FDA's past silence on mercury amalgam is all the more curious given the fact that both the Centers for Disease Control, in 2005, identified amalgam as a source of "major exposure" to mercury, and the U.S. Public Health Service warned, in 1999, that mercury amalgam is one of the two greatest sources of mercury exposure to humans.
Dental amalgam is also a major environmental pollutant once it is removed from the mouth to such a degree that dental offices are the number one source of mercury in waste water. The FDA, however, has never written an environmental impact statement on dental amalgam as it is required to do by law. The environmental damage caused by the disposal of mercury amalgams makes no sense when alternative materials are now available for every kind of dental cavity.
The FDA's historic decision to reject its own staff report signals the beginning of the end of mercury amalgam's privileged sanctuary. It is a good first step. But more remains to be done.
The FDA must therefore move ahead post haste in the following four areas: (1) Disclosure: The FDA must immediately take the simple step of requiring dentists to inform their patients that amalgam is 50% mercury, it constitutes exposure to a neuro-toxin, and alternative fillings are available. (2) Environmental Impact: The FDA has the legal duty to conduct an environmental impact study of dental amalgam, which it has never done, before properly classifying the material. (3) Proof of Safety: Manufacturers of amalgam should have the burden of proving its safety. To date, they have never sought nor been given pre-market approval for their product. The FDA must hold amalgam manufacturers accountable. (4) Children and Pregnant Women: Ten years ago, Health Canada directed its dentists to cease placing mercury fillings in the teeth of children, pregnant women, and persons with kidney disease, mercury hypersensitivity, or braces. The FDA should implement a similar ban in the U.S.
Two short decades ago, health and public policy advocates embarked on a campaign to rid public areas of smokers and second-hand tobacco smoke. Today the U.S. is on the cutting-edge of educating and informing its citizens about the scourge of tobacco and eliminating tobacco smoke from public and common areas. A similar campaign is gathering momentum here and around the world to end the use of mercury amalgam. It is past time for the American dental profession to relinquish a practice that is as antiquated as it is dangerous.
USAAA: Q&A with Dr. Boyd Haley
US Autism & Asperger Association: Q&A with Dr. Boyd Haley
USAAA: How do you respond to professionals and parents who disregard any Thimerasol theory when they point out that children who were not immunized and are still diagnosed with autism, thus refuting the Thimerasol controversy? We hear this quite a bit from parents who have children who are much older that didn't receive the heavy schedule of immunizations that kids received in the 1990's or who just were not immunized?
Dr. Boyd Haley: Vaccines are not the only exposure to mercury or thimerosal. Remember merthiolate, or methyl mercury from fish? In the 1970s and early 1980s there was a high level of fungicides use in products like paint that children could be exposed to. Also, it appears to be a mercury toxicity issue if one follows the porphyrin profile data. Therefore, any mercury exposure could be the cause, or perhaps any combination of heavy metals, and most mothers had dental amalgams and many had them placed or worked on during their gestation period. In the UK, a large group of parents of autisitic children screened their members and found only 2 who did not vaccinate their child, and one of these two had amalgams placed in her first trimester of pregnancy. The bottom line, I wouldn't claim that vaccinations from the mandated vaccination program was the cause of all autism as it did exist at low levels before the 1990s. However, it was in my opinion the cause for the increases we observed in the late 1990s. What I really believe is that autism (and AD, Parkinsons, MS, ALS) are neurological diseases indicating a weakness in certain individuals for response to certain toxins. Exposure of these individuals to mercury from any source increases their risk. We now have scientific reports that certain individuals do not excrete mercury effectively, and certain have enzymes that are specifically sensitive to mercury or other heavy metals. How do these parents explain the Amish observations, or the fact that in England they could not find near the expected number of children with autism that were not vaccinated?
USAAA: Is there an organization that lists specialized dentists for the removal of amalgams, similar to the list that DAN creates for physicians.
Dr. Haley: Yes, go to www.iaomt.org.
Dr. Haley presented "The Effects of Synergistic Toxicities and Genetic Susceptibilities on the Toxic Effects of Inorganic and Organic Mercury Compounds: The Relationship to Autism and Related Disorders," at the USAAA 2006 International Conference in Park City, Utah. To preview his presentation, click here
Taiwan Halts Flu Vaccine After Four Deaths
Taiwan halts flu vaccine after four Israelis die
dpa German Press Agency
Published: Monday October 23, 2006
Taipei- Taiwan on Monday ordered a halt to the use of a flu vaccine imported from France following reports that four Israeli people died after receiving the vaccine, officials said. "Before we have clear information over the safety on the use of the vaccine made by Sanofi-Aventis, we are halting the use of the vaccine effectively immediately," said Chou Chih-hua, deputy director of the Centre for Disease Control (CDC).
He said no more shots of Sanofi-Aventis vaccine would be given, even though there have been no local reports of illness or fatality from some 300,000 people who have received the vaccine free since last month.
CDC has imported 1.13 million does of the flu vaccine in question this year. News reports said four people in the Israeli town of Kiryat Gat, aged from 56 to 72, died of heart problems in the past week. Health authorities in Israel are investigating if the vaccine has anything to do with their death, the reports said.
Chou said the CDC has been trying to contact the French pharmaceutical company and the CDC's overseas offices since learning of the deaths in Israel.
© 2006 dpa German Press Agency
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