Advocate criticizes use of stun gun
Autistic man's death unnecessary, he says
By Brendan McCarthy, Tribune staff reporter.
Freelance reporter Carolyn Rusin contributed to this report
Published November 30, 2005
A disability rights advocate said Tuesday that better training may have prevented an incident last week in which an autistic man died after Des Plaines police officers used a stun gun in their attempts to subdue him.
The circumstances surrounding the death of Hansel Cunningham, 30, remain under investigation by Illinois State Police, and officials said the probe could take a year to complete.
Cunningham, a resident of a group home in Des Plaines, died Nov. 20 after he was shocked twice with a Taser by police officers who had responded to a 911 call from a caregiver at the home. Officers also used pepper spray and tackled him before paramedics injected a sedative.
Don Moss, a disability rights advocate who works with Evanston-based Rimland Services for Autistic Citizens, which operates the group home, questioned the use of force and the judgment of Des Plaines police officers and paramedics.
Cunningham "never had a history of violence but was sensitive to people touching him," said Moss, who also is executive director of United Cerebral Palsy of Illinois. "The force likely caused more agitation to Hansel. It's common for people with autism to be sensitive to sounds, to bright lights, to touch.
"This type of force was not needed, the action was not necessary. The restraint was not protocol. Apparently the police were aware it was a home for autistic adults. But perhaps the police weren't framed or trained in less violent techniques."
Des Plaines Police Chief Jim Prandini said officers used appropriate force to subdue Cunningham, who had bitten his caregiver and, according to Prandini, was combative and could have harmed himself or others.
"Our position is that we followed everything according to our guidelines. I believe the Fire Department did, too, but that is part of the investigation," Prandini said. "Hopefully, we will find some results that will show why this unfortunate situation happened. We sincerely want the family to know that the Police Department, the entire city, offers its condolences and that we feel terrible about this."
The Cook County medical examiner's office has postponed ruling on the cause and manner of Cunningham's death, pending further police investigation.
"I really would like to know," Prandini said "If they point to the direction of a Taser, let's make a Taser change. If they point to the direction of training, let's make a training change."
Cunningham was a five-year resident of the Rimland home. After he was subdued, he had breathing problems. Paramedics were unable to revive him, and he was pronounced dead at Northwest Community Hospital in Arlington Heights.
Paramedics initially were called to the home to treat the caregiver.
"He bit the hands and arms of the staff member," said Moss, who was briefed by the not-for-profit agency and is familiar with the case. "I understand there was a lot of blood. He had bitten him two or three times."
Moss said Cunningham did not have a history of violence and was familiar with the caregiver, who had been working at the home for more than three years.
The state police's public integrity unit, a task force of investigators from the state police and the Cook County state's attorney's office, is investigating and has begun interviewing police officers, emergency personnel, witnesses and family members.
Lt. Lincoln Hampton, public information officer for the state police, said there is no timetable for the investigation and that it could take a year to complete.
"They're going to do a thorough investigation to get to the bottom, to discover exactly what happened in this case," Hampton said.
A final report will be turned over to the state's attorney's office, which would determine if charges are to be filed.
Des Plaines police and the Illinois Department of Public Health, with the assistance of the Northwest Community Emergency Medical Services system, which oversees paramedic procedures in the northwest suburbs, are conducting internal investigations.
Dr. John Ortinau, medical director of the Arlington Heights-based Northwest Community EMS system, said the paramedics involved would be interviewed within the next week.
"Everything looks like it was done to protocol," he said, referring to the EMS rescue and ambulance report.
Attempts to reach Cunningham's family for comment were not successful. A Rimland spokeswoman said a funeral for Cunningham was held Tuesday.
----------
bmccarthy@tribune.com
December 1, 2005
Dr. Buttar: Increase in Urination on TD-DMPS
Increase in Urniation
by Dr. Rashid Buttar
Recently, I was told of a doctor who was using TD-DMPS in many children but this doctor despite seeing good clinical results, became concerned after noting a few children who were appearing to be "incontinent". A few things need to be mentioned regarding this observation, most important of which is distinguishing this from true incontinence.
Our observation is that approximately 15% of children being treated with TD-DMPS in our practice have shown either an increase in or initiation of bed wetting and/or increased frequency of urination after treatment has been initiated. Urinary analysis as well as routine blood analysis looking at BUN and creatnine, have shown no changes associated with this observation. However, there appears to be an association with increased metal yield on fecal, urinary and RBC metal analysis noted shortly after this observation is noted.
In addition, the child is virtually always noted to have an increased desire to consume liquids and parents will comment that their child is drinking noticeably more than normal.
Initially, it was unclear as to what the observation indicated but these findings did not persist more than a few months in any of the children in whom we observed these findings. However, what we did notice was that within a few months, the children in whom we noticed these changes, were the ones that showed a more significant recovery milestone compared to those who did not exhibit this particular finding.
This transient observation of increased bed wetting and/or increase in voiding frequency based on the previously stated observations, is probably intuitively obvious by this point. However, for those that may need some further explanation, the self evident nature of the physiological response may be explained in a condensed manner, using a common theme I learned during by general surgery residency.
Some physicians may remember a little phrase during their surgical rotations which explained why facial lacerations were less prone to infection. The phrase "the solution to pollution is dilution" was something we used in surgery all the time, from explaining the high vascular supply of the face leading to lower incidence of wound infection, to the principal of irrigating wounds to prevent infection.
In essence, an effective method of dislodging and pulling the metals out with an effective chelator will cause an "increase" in circulating "pollution" (metals) which will induce the physiological response of increasing the desire to ingest water. This increase in water intake is "diluting" the "pollution". With increase in the water intake, there is "dilution" of the "pollution", thus providing the solution to the issue of toxicity. But with that "dilution", there is an increase in volume, resulting in an increase in the bodies need to void. The purpose of the renal system is to excrete waste and the "pollution" (metal) is waste that the body wants to eliminate. Thus, the increase in volume of fluid along with the natural physiological response for the body to eliminate a dislodged and mobilized substance that is detrimental (metals) will cause the observation we are discussing, specifically of increase in voiding.
As previously stated, I have never seen a child that we have treated go more than a few months before this observation of increased urinary voiding resolve. However, we have had numerous cases of children that were still in diapers or pull ups at the age of 6 or 7, experience these same changes, only to become completely potty trained within a few months of exhibiting this increase in voiding initially.
It is important to remember that all the findings are still being collected. For a physician, they must look at physiology and understand physiology, regardless of disease process they are treating. If physicians do look at physiology, then what appears to perhaps initially be a negative, will not be abandoned when in actuality, it is a positive. But to conclude that TD-DMPS causes incontinence without understanding the physiological response or why it's occurring may be misleading and may potentially lead parents to an unnecessary delay in treatment. Remember, science is noting more than an observation that has been used to postulate a hypothesis and then tested over and over again to see if the hypothesis holds water. That's all that we do.
My hope is that more and more physicians begin to use physiology as their guiding principal in treating patients but even more importantly, that they look to physiological principals in their initial approach to treating what ever disease they may encounter.
It is the principal that we use not only in our approach to autism but to cancer and heart disease as well and comprises the main focus of the 5 day AMESPA course that I teach, with the goal of changing the paradigm in medicine. Our goal, very simply is to take over 25% to 40% of the US health care market and we will be able to accomplish this because of our focus on the 5 toxicities and how to treat them, while using basic physiological principals as our guides in keeping us on the right course.
Rashid A. Buttar, DO, FAAPM, FACAM, FAAIM
by Dr. Rashid Buttar
Recently, I was told of a doctor who was using TD-DMPS in many children but this doctor despite seeing good clinical results, became concerned after noting a few children who were appearing to be "incontinent". A few things need to be mentioned regarding this observation, most important of which is distinguishing this from true incontinence.
Our observation is that approximately 15% of children being treated with TD-DMPS in our practice have shown either an increase in or initiation of bed wetting and/or increased frequency of urination after treatment has been initiated. Urinary analysis as well as routine blood analysis looking at BUN and creatnine, have shown no changes associated with this observation. However, there appears to be an association with increased metal yield on fecal, urinary and RBC metal analysis noted shortly after this observation is noted.
In addition, the child is virtually always noted to have an increased desire to consume liquids and parents will comment that their child is drinking noticeably more than normal.
Initially, it was unclear as to what the observation indicated but these findings did not persist more than a few months in any of the children in whom we observed these findings. However, what we did notice was that within a few months, the children in whom we noticed these changes, were the ones that showed a more significant recovery milestone compared to those who did not exhibit this particular finding.
This transient observation of increased bed wetting and/or increase in voiding frequency based on the previously stated observations, is probably intuitively obvious by this point. However, for those that may need some further explanation, the self evident nature of the physiological response may be explained in a condensed manner, using a common theme I learned during by general surgery residency.
Some physicians may remember a little phrase during their surgical rotations which explained why facial lacerations were less prone to infection. The phrase "the solution to pollution is dilution" was something we used in surgery all the time, from explaining the high vascular supply of the face leading to lower incidence of wound infection, to the principal of irrigating wounds to prevent infection.
In essence, an effective method of dislodging and pulling the metals out with an effective chelator will cause an "increase" in circulating "pollution" (metals) which will induce the physiological response of increasing the desire to ingest water. This increase in water intake is "diluting" the "pollution". With increase in the water intake, there is "dilution" of the "pollution", thus providing the solution to the issue of toxicity. But with that "dilution", there is an increase in volume, resulting in an increase in the bodies need to void. The purpose of the renal system is to excrete waste and the "pollution" (metal) is waste that the body wants to eliminate. Thus, the increase in volume of fluid along with the natural physiological response for the body to eliminate a dislodged and mobilized substance that is detrimental (metals) will cause the observation we are discussing, specifically of increase in voiding.
As previously stated, I have never seen a child that we have treated go more than a few months before this observation of increased urinary voiding resolve. However, we have had numerous cases of children that were still in diapers or pull ups at the age of 6 or 7, experience these same changes, only to become completely potty trained within a few months of exhibiting this increase in voiding initially.
It is important to remember that all the findings are still being collected. For a physician, they must look at physiology and understand physiology, regardless of disease process they are treating. If physicians do look at physiology, then what appears to perhaps initially be a negative, will not be abandoned when in actuality, it is a positive. But to conclude that TD-DMPS causes incontinence without understanding the physiological response or why it's occurring may be misleading and may potentially lead parents to an unnecessary delay in treatment. Remember, science is noting more than an observation that has been used to postulate a hypothesis and then tested over and over again to see if the hypothesis holds water. That's all that we do.
My hope is that more and more physicians begin to use physiology as their guiding principal in treating patients but even more importantly, that they look to physiological principals in their initial approach to treating what ever disease they may encounter.
It is the principal that we use not only in our approach to autism but to cancer and heart disease as well and comprises the main focus of the 5 day AMESPA course that I teach, with the goal of changing the paradigm in medicine. Our goal, very simply is to take over 25% to 40% of the US health care market and we will be able to accomplish this because of our focus on the 5 toxicities and how to treat them, while using basic physiological principals as our guides in keeping us on the right course.
Rashid A. Buttar, DO, FAAPM, FACAM, FAAIM
Genes Can Be 'Changed' by Foods: Improving Methylation
Genes can be 'changed' by foods
BBC News
What we eat may influence our health by changing specific genes, researchers believe.
Several studies in rodents have shown that nutrients and supplements can change the genetics of animals by switching on or off certain genes.
It is not clear whether foods do the same in humans, but an article in New Scientist says there is good reason to believe they do.
In the future, diseases might be reversed by diet in this way, it says.
Modifying DNA
While many disorders in humans are caused by mutations to DNA, a few, including some cancers, occur when genes are switched on or off.
There are thousands of genes in the body, but not all of them are active.
Scientists have been looking at what factors might control gene activity and have found some evidence to suggest that diet is important.
In a recent animal experiment, adult rats were made to behave differently by injecting them with a specific amino acid called L-methionine.
After the injections, the animals were less confident when exploring new environments and produced higher levels of stress hormones.
The change to their behaviour occurred because the amino acid altered the way the rat's genes were expressed.
L-methionine altered a gene for glucocorticoid that helps control the animal's response to stress, Moshe Szyf and his team from McGill University in Montreal, Canada, told a meeting on environmental epigenomics in November in Durham, North Carolina.
It added chemical tags, known as methyl groups, to the gene by a process called methylation.
The researchers are now looking to see if they can cause a positive rather than a negative behavioural change in animals using a naturally-occurring chemical called trichostatin A (TSA).
It's quite a strong possibility that nutrients might cause DNA changes Professor Ian Johnson at the Institute of Food Research
TSA causes the opposite effect to L-methionine on genes, stripping them of methyl groups.
Dr Szyf said his work showed how important subtle nutrients and supplements can be.
Animal research has also shown that a mother's diet can affect the level of DNA methylation and hence gene expression in offspring.
Professor Ian Johnson at the Institute of Food Research is investigating whether colon cancer in humans might be triggered by diet through DNA methylation. His team is studying healthy people before this cancer starts.
He said: "It's quite a strong possibility that nutrients might cause DNA changes. We think diet may have a role to play as a regulator in genes.
"Ultimately one would want to chose diets that would give you the most beneficial pattern of DNA methylation in the gut. But it is too early to say that we know the dietary strategy to do that.
"We need much more research.
"Genes regulate all the processes in the body and things that change gene expression, therefore, may be linked to a number of health issues other than cancer too."
He said one nutrient that scientists believe might influence methylation is folate or folic acid.
A deficiency in folate levels has been linked to an increased risk of developing some adult cancers, including breast and colon.
BBC News
What we eat may influence our health by changing specific genes, researchers believe.
Several studies in rodents have shown that nutrients and supplements can change the genetics of animals by switching on or off certain genes.
It is not clear whether foods do the same in humans, but an article in New Scientist says there is good reason to believe they do.
In the future, diseases might be reversed by diet in this way, it says.
Modifying DNA
While many disorders in humans are caused by mutations to DNA, a few, including some cancers, occur when genes are switched on or off.
There are thousands of genes in the body, but not all of them are active.
Scientists have been looking at what factors might control gene activity and have found some evidence to suggest that diet is important.
In a recent animal experiment, adult rats were made to behave differently by injecting them with a specific amino acid called L-methionine.
After the injections, the animals were less confident when exploring new environments and produced higher levels of stress hormones.
The change to their behaviour occurred because the amino acid altered the way the rat's genes were expressed.
L-methionine altered a gene for glucocorticoid that helps control the animal's response to stress, Moshe Szyf and his team from McGill University in Montreal, Canada, told a meeting on environmental epigenomics in November in Durham, North Carolina.
It added chemical tags, known as methyl groups, to the gene by a process called methylation.
The researchers are now looking to see if they can cause a positive rather than a negative behavioural change in animals using a naturally-occurring chemical called trichostatin A (TSA).
It's quite a strong possibility that nutrients might cause DNA changes Professor Ian Johnson at the Institute of Food Research
TSA causes the opposite effect to L-methionine on genes, stripping them of methyl groups.
Dr Szyf said his work showed how important subtle nutrients and supplements can be.
Animal research has also shown that a mother's diet can affect the level of DNA methylation and hence gene expression in offspring.
Professor Ian Johnson at the Institute of Food Research is investigating whether colon cancer in humans might be triggered by diet through DNA methylation. His team is studying healthy people before this cancer starts.
He said: "It's quite a strong possibility that nutrients might cause DNA changes. We think diet may have a role to play as a regulator in genes.
"Ultimately one would want to chose diets that would give you the most beneficial pattern of DNA methylation in the gut. But it is too early to say that we know the dietary strategy to do that.
"We need much more research.
"Genes regulate all the processes in the body and things that change gene expression, therefore, may be linked to a number of health issues other than cancer too."
He said one nutrient that scientists believe might influence methylation is folate or folic acid.
A deficiency in folate levels has been linked to an increased risk of developing some adult cancers, including breast and colon.
Daily Dose of Good Bacteria Cuts Sick Leave
Daily Dose of Good Bacteria Cuts Sick Leave
NEW YORK (Reuters Health) - Workers who took a daily dose of beneficial bacteria, also known as probiotics, were much less likely to call in sick than their colleagues given a placebo, a new study from Sweden shows.
Probiotics are contained in yogurt and other fermented foods. They've been shown to have a number of positive health effects, helping, for example, to prevent gastrointestinal ills and to boost immune system function.
Dr. Py Tubelius and colleagues from Tetra Pak Occupational Health and Safety AB conducted the current study to determine if one probiotic, Lactobacillus reuteri, might help prevent sick leave due to respiratory or gastrointestinal infections.
They randomly assigned 262 employees of the company to take a drink containing L. reuteri or a placebo drink every day for 80 days. A total of 181 workers completed the study.
Twenty-three of the 87 workers on placebo, or about 26%, took sick leave during the course of the study, compared to 10 of the workers taking the probiotic, or 11%. Among the subset of workers on the night shift, none of the 26 taking the probiotic called in sick, compared to 9 of their 27 colleagues, or 33%.
Shift workers are known to be more prone to develop stomach ailments, colds and other types of short-term illness leading to sick leave, Tubelius and his team note in the journal Environmental Health.
While the mechanism by which the probiotic might help prevent illnesses isn't clear, the researchers add, it's likely that it helped to strengthen immune function.
"Shift-workers are known to be at risk for having a weaker immuno-defence as compared to those working day-time shifts only," they note. "Consequently it can be argued that shift-workers would benefit relatively more by the immune stimulating effect of L. reuteri."
Further studies are needed to investigate this issue, they conclude.
SOURCE: Environmental Health
NEW YORK (Reuters Health) - Workers who took a daily dose of beneficial bacteria, also known as probiotics, were much less likely to call in sick than their colleagues given a placebo, a new study from Sweden shows.
Probiotics are contained in yogurt and other fermented foods. They've been shown to have a number of positive health effects, helping, for example, to prevent gastrointestinal ills and to boost immune system function.
Dr. Py Tubelius and colleagues from Tetra Pak Occupational Health and Safety AB conducted the current study to determine if one probiotic, Lactobacillus reuteri, might help prevent sick leave due to respiratory or gastrointestinal infections.
They randomly assigned 262 employees of the company to take a drink containing L. reuteri or a placebo drink every day for 80 days. A total of 181 workers completed the study.
Twenty-three of the 87 workers on placebo, or about 26%, took sick leave during the course of the study, compared to 10 of the workers taking the probiotic, or 11%. Among the subset of workers on the night shift, none of the 26 taking the probiotic called in sick, compared to 9 of their 27 colleagues, or 33%.
Shift workers are known to be more prone to develop stomach ailments, colds and other types of short-term illness leading to sick leave, Tubelius and his team note in the journal Environmental Health.
While the mechanism by which the probiotic might help prevent illnesses isn't clear, the researchers add, it's likely that it helped to strengthen immune function.
"Shift-workers are known to be at risk for having a weaker immuno-defence as compared to those working day-time shifts only," they note. "Consequently it can be argued that shift-workers would benefit relatively more by the immune stimulating effect of L. reuteri."
Further studies are needed to investigate this issue, they conclude.
SOURCE: Environmental Health
The Age of Autism: Nuts
The Age of Autism: Nuts
By DAN OLMSTED
UPI Senior Editor
You may have seen the brief news stories this week: A 15-year-old Canadian girl with a severe peanut allergy kissed her boyfriend -- and died.
The New York Post perfectly captured the tabloid pathos. The headline: "Allergy teen's fatal kiss." The lead: "Her allergy to peanuts may have been the kiss of death for a Canadian 15-year-old who died after smooching with her boyfriend, who'd just had peanut butter, authorities said.
"Christina Desforges died last Wednesday in a Quebec hospital, where she was being treated for the allergic reaction to the kiss the weekend before. The fact is that even a trace amount can cause a severe reaction."
A CNN reporter asked: "Could it really have been ... the kiss of death?" (Could it really have been ... a crass cliché worth avoiding?) The network quoted three people -- ages 13, 15 and 20 -- who all have severe peanut allergies and recounted near-death experiences as a result. It quoted a doctor as saying, "I've lost three patients due to anaphylaxis (severe allergic reaction). They're all teenagers. One was a baked good, one was Chinese food, one was a candy. None of them had epinephrine (antidote) available."
Now, why are so many young North Americans suddenly at risk of death from eating common foods or kissing those who have?
"Food allergy such as peanut allergy is an immune response," explains foodconsumer.org. "It differs from food intolerance which causes discomfort without provoking the immuno-response. What causes peanut allergy remains largely unknown. A study, published in the March 13 issue of New England Journal of Medicine, linked the
acquisition of the condition with babies' using skin preparation containing peanut oil. Peanut allergy was also found associated with intake of soy milk or soy formula."
Other possible factors cited in press accounts include more peanut- eating by pregnant and breast-feeding women and earlier peanut consumption by young children. That, it is surmised, could predispose them to severe allergic reactions later.
Maybe. But omitted from the speculation is one other possibility, which explains why peanuts are the subject of this column about autism: There are studies and informed observations suggesting that a rise in peanut allergies -- and other severe allergic and autoimmune reactions in young people, both acute and chronic -- are associated with a rise in childhood vaccinations in the 1990s.
Are you rolling your eyes yet? Please bear with us. Our purpose here is not to ropose this as the most plausible hypothesis, but simply to point out -- yet again --how nutty the discussion of the horrifying rise in childhood medical problems becomes when it does not look squarely at all possibilities.
And vaccines are among those possibilities -- certainly right up there with peanut eating during pregnancy, to say the least. We refer you to this posting on the Web:
www.vaccinationnews.com/DailyNews/March2002/Anaphylaxis&Vaccines.htm.
It is a Nov. 6, 2001, letter from Rita Hoffman of Stirling, Ontario, to the Immunization Safety Review Committee of the U.S. Institute of Medicine, part of the prestigious National Academies.
"Re: Epidemic of Children with Anaphylaxis," it begins. "Thank you for the opportunity to submit the following information for your review of the possible association between multiple immunizations in newborns and infants and immune system dysfunction. We are writing in particular about the potentially life threatening allergic response called anaphylaxis."
The letter, which Hoffman wrote on behalf of the group Anaphylaxis Action, sure looks like a serious piece of work to us. It cites one scientific journal study after another, beginning with the Archives of Internal Medicine, which reported in 2001 that "The occurrence of anaphylaxis in the US is not as rare as is generally believed. On the basis of our figures, the problem of anaphylaxis may, in fact,
affect 1.21 percent (1.9 million) to 15.04 percent (40.9 million) of the US population."
That's something that should trigger urgent research and -- despite the cluelessness of the press accounts about the 15-year-old's kiss of death -- it has indeed.
Hoffman quotes from a paper in the journal Pediatric Allergy Immunology from 1994 that says that "the role of immunization for the development of allergy merits further study."
A 1997 article in Immunology Today: "Modern vaccinations, fear of germs and obsession with hygiene are depriving the immune system of information input upon which it is dependent. This fails to maintain the correct cytokine balance and fine-tune T-cell regulation, and may lead to increased incidences of allergies and autoimmune diseases."
From the Journal of Manipulative and Physiological Therapeutics in 2000, Effects of diphtheria-tetanus-pertussis or tetanus vaccination on allergies and allergy-related respiratory symptoms among children and adolescents in the United States: "The odds of having a history of asthma was twice as great among vaccinated subjects than among
unvaccinated subjects. The odds of having any allergy-related respiratory symptom in the past 12 months was 63 percent greater among vaccinated subjects than unvaccinated subjects."
We could go on, but we refer you to Hoffman's excellent summary. Of course, there are countervailing studies and theories that find no such link between immunizations and allergic reactions, anaphylaxis and asthma (not to mention autism). But the point is this is a serious, ongoing debate with immediate, life-and-death consequences.
Too bad the mainstream media doesn't take it seriously. Christina Desforges and her generation deserve better -- and they deserve it
now.
--
E-mail: dolmsted@upi.com
By DAN OLMSTED
UPI Senior Editor
You may have seen the brief news stories this week: A 15-year-old Canadian girl with a severe peanut allergy kissed her boyfriend -- and died.
The New York Post perfectly captured the tabloid pathos. The headline: "Allergy teen's fatal kiss." The lead: "Her allergy to peanuts may have been the kiss of death for a Canadian 15-year-old who died after smooching with her boyfriend, who'd just had peanut butter, authorities said.
"Christina Desforges died last Wednesday in a Quebec hospital, where she was being treated for the allergic reaction to the kiss the weekend before. The fact is that even a trace amount can cause a severe reaction."
A CNN reporter asked: "Could it really have been ... the kiss of death?" (Could it really have been ... a crass cliché worth avoiding?) The network quoted three people -- ages 13, 15 and 20 -- who all have severe peanut allergies and recounted near-death experiences as a result. It quoted a doctor as saying, "I've lost three patients due to anaphylaxis (severe allergic reaction). They're all teenagers. One was a baked good, one was Chinese food, one was a candy. None of them had epinephrine (antidote) available."
Now, why are so many young North Americans suddenly at risk of death from eating common foods or kissing those who have?
"Food allergy such as peanut allergy is an immune response," explains foodconsumer.org. "It differs from food intolerance which causes discomfort without provoking the immuno-response. What causes peanut allergy remains largely unknown. A study, published in the March 13 issue of New England Journal of Medicine, linked the
acquisition of the condition with babies' using skin preparation containing peanut oil. Peanut allergy was also found associated with intake of soy milk or soy formula."
Other possible factors cited in press accounts include more peanut- eating by pregnant and breast-feeding women and earlier peanut consumption by young children. That, it is surmised, could predispose them to severe allergic reactions later.
Maybe. But omitted from the speculation is one other possibility, which explains why peanuts are the subject of this column about autism: There are studies and informed observations suggesting that a rise in peanut allergies -- and other severe allergic and autoimmune reactions in young people, both acute and chronic -- are associated with a rise in childhood vaccinations in the 1990s.
Are you rolling your eyes yet? Please bear with us. Our purpose here is not to ropose this as the most plausible hypothesis, but simply to point out -- yet again --how nutty the discussion of the horrifying rise in childhood medical problems becomes when it does not look squarely at all possibilities.
And vaccines are among those possibilities -- certainly right up there with peanut eating during pregnancy, to say the least. We refer you to this posting on the Web:
www.vaccinationnews.com/DailyNews/March2002/Anaphylaxis&Vaccines.htm.
It is a Nov. 6, 2001, letter from Rita Hoffman of Stirling, Ontario, to the Immunization Safety Review Committee of the U.S. Institute of Medicine, part of the prestigious National Academies.
"Re: Epidemic of Children with Anaphylaxis," it begins. "Thank you for the opportunity to submit the following information for your review of the possible association between multiple immunizations in newborns and infants and immune system dysfunction. We are writing in particular about the potentially life threatening allergic response called anaphylaxis."
The letter, which Hoffman wrote on behalf of the group Anaphylaxis Action, sure looks like a serious piece of work to us. It cites one scientific journal study after another, beginning with the Archives of Internal Medicine, which reported in 2001 that "The occurrence of anaphylaxis in the US is not as rare as is generally believed. On the basis of our figures, the problem of anaphylaxis may, in fact,
affect 1.21 percent (1.9 million) to 15.04 percent (40.9 million) of the US population."
That's something that should trigger urgent research and -- despite the cluelessness of the press accounts about the 15-year-old's kiss of death -- it has indeed.
Hoffman quotes from a paper in the journal Pediatric Allergy Immunology from 1994 that says that "the role of immunization for the development of allergy merits further study."
A 1997 article in Immunology Today: "Modern vaccinations, fear of germs and obsession with hygiene are depriving the immune system of information input upon which it is dependent. This fails to maintain the correct cytokine balance and fine-tune T-cell regulation, and may lead to increased incidences of allergies and autoimmune diseases."
From the Journal of Manipulative and Physiological Therapeutics in 2000, Effects of diphtheria-tetanus-pertussis or tetanus vaccination on allergies and allergy-related respiratory symptoms among children and adolescents in the United States: "The odds of having a history of asthma was twice as great among vaccinated subjects than among
unvaccinated subjects. The odds of having any allergy-related respiratory symptom in the past 12 months was 63 percent greater among vaccinated subjects than unvaccinated subjects."
We could go on, but we refer you to Hoffman's excellent summary. Of course, there are countervailing studies and theories that find no such link between immunizations and allergic reactions, anaphylaxis and asthma (not to mention autism). But the point is this is a serious, ongoing debate with immediate, life-and-death consequences.
Too bad the mainstream media doesn't take it seriously. Christina Desforges and her generation deserve better -- and they deserve it
now.
--
E-mail: dolmsted@upi.com
Burr Bill Bad
Secrecy Is Infectious: Bill Would Shield Biomedical Research
Monday, November 14, 2005 8:55 AM
washingtonpost.com
Sen. Richard Burr's cure for infectious-disease outbreaks and dangerous bioterrorism agents includes a big dose of government secrecy.
The North Carolina Republican has introduced legislation to create the Biomedical Advanced Research and Development Agency, a new bureaucracy that would help spur research and development of drugs and vaccines to blunt the impact of a pandemic or bioterrorist attack. The agency, to be part of the Department of Health and Human Services, would get something no other agency has: a full exemption from the Freedom of Information Act.
Burr's office says that is necessary to prevent information from falling into the wrong hands. Open government advocates note that the 40-year-old FOIA law allows agencies to withhold some information for national security reasons.
"It is an act of contempt for the public and for open government that hopefully will not be adopted," said Steven Aftergood, director of the Federation of American Scientists' Project on Government Secrecy. "They are asking for more of an exemption than the CIA, more than the NSA [National Security Agency] has, more than any military or intelligence organization has."
Doug Heye, Burr's spokesman, said, the critics were overreacting. "It's the intention of the agency to provide information, not to withhold information," he said. "But," Heye added, "there will be certain times where for national security reasons certain information would have to be withheld."
Say the agency learns that a virus could be genetically modified to become deadly. "That's information that we wouldn't want to publicize," he said.
-- Christopher Lee
Monday, November 14, 2005 8:55 AM
washingtonpost.com
Sen. Richard Burr's cure for infectious-disease outbreaks and dangerous bioterrorism agents includes a big dose of government secrecy.
The North Carolina Republican has introduced legislation to create the Biomedical Advanced Research and Development Agency, a new bureaucracy that would help spur research and development of drugs and vaccines to blunt the impact of a pandemic or bioterrorist attack. The agency, to be part of the Department of Health and Human Services, would get something no other agency has: a full exemption from the Freedom of Information Act.
Burr's office says that is necessary to prevent information from falling into the wrong hands. Open government advocates note that the 40-year-old FOIA law allows agencies to withhold some information for national security reasons.
"It is an act of contempt for the public and for open government that hopefully will not be adopted," said Steven Aftergood, director of the Federation of American Scientists' Project on Government Secrecy. "They are asking for more of an exemption than the CIA, more than the NSA [National Security Agency] has, more than any military or intelligence organization has."
Doug Heye, Burr's spokesman, said, the critics were overreacting. "It's the intention of the agency to provide information, not to withhold information," he said. "But," Heye added, "there will be certain times where for national security reasons certain information would have to be withheld."
Say the agency learns that a virus could be genetically modified to become deadly. "That's information that we wouldn't want to publicize," he said.
-- Christopher Lee
New Book for Parents New to ASD Diagnosis
New book is road map to help parents 'find' their child who has Asperger syndrome or high-functioning autism
Two decades ago there was little hope when a child was diagnosed with autism. Parents were often told their child couldn't succeed in school and would have to be institutionalized. Much has changed in the intervening years, particularly in how science understands what today is considered to be a spectrum of autism disorders and how well many children respond to treatment.
However, it still can be a numbing and confusing experience for parents who receive a diagnosis that their child has autism and then must sort through the wide variety of treatment approaches available. Helping parents deal with this experience is why two leading researchers, Sally Ozonoff and Geraldine Dawson, have written "A Parent's Guide to Asperger Syndrome and High-Functioning Autism," which has just been published.
Ozonoff is an associate professor of psychiatry at the M.I.N.D. Institute at the University of California, Davis, and Dawson is a psychology professor and founding director of the University of Washington's Autism Center. Co-author of the book is James McPartland, a UW doctoral student working with Dawson.
The book is designed to be a road map to help parents of children with high-functioning autism and Asperger syndrome through trying times, starting with diagnosis progressing through childhood and into adulthood.
Researchers now know that there is a spectrum of autism disorders affecting people in varying degrees of severity. People with the most severe form, or what is termed classic autism, are often very handicapped and may be mentally retarded. In its most severe form such children are nonverbal, aloof from other people and exhibit very restricted and repetitive behavior.
People with high-functioning autism and Asperger syndrome are not as severely affected. A child with high-functioning autism fits the definition of autism but has such better cognitive and learning abilities. These children have initial difficulty acquiring language but eventually are able to speak at a level appropriate for their age. Children with Asperger syndrome are similar to those with high-functioning autism but have fewer symptoms and have little or no difficulty developing language at the appropriate age.
Dawson and Ozonoff estimate that autism spectrum disorders affect up to 0.6 percent of the U.S. population, upwards of 500,000 people. Two-thirds of those appear to have high-functioning autism or Asperger syndrome.
"We are seeing an increasing number of these children in our clinic, and more cases of Asperger syndrome and high-functioning autism are being diagnosed at a younger age," said Dawson. "The prognosis for many of these children can be quite positive compared to 20 years ago. Today 25 percent to 30 percent of them finish high school and a quarter of those go on to college."
The book's guiding principle is to focus on a child's strengths, not weaknesses, and to have parents channel their child's unusual behaviors and ways of thinking into positive achievements.
"There are many examples of children with Asperger syndrome or high-functioning autism who grew up to be successful adults. The key was their being able to use their strengths," said Dawson. "There is a tendency to focus on children's problems so they don't get a chance to figure out how to use their strengths. These children have unique ways of learning so it is very important to identify a child's learning style. This can help them blossom rather than flounder."
The book takes parents through the diagnostic process, outlines the various treatments available and discusses the impact of Asperger syndrome and high-functioning autism at home, at school and in the social world of children. It also prepares parents to help their children as they enter late adolescence and adulthood. The authors discuss what issues parents are likely to face, what their options are and what is scientifically known so they can make the best decision for their child.
"Autism is a test of unconditional love for parents because in the beginning many children don't give any emotional feedback. The parents' love carries the relationship for a long time," said Dawson.
"Most parents are devastated and the impact on the family is great. Divorce is very common and other siblings sometimes can be neglected. But many parents rally and are able to start on this journey to find their child. They need to know this process is a distance race, not a sprint, and that eventually their child can lead an extremely satisfying and productive life.
"There is no reason why many people with Asperger syndrome and high-functioning autism can't get married, go to college, get a job and give to society. All are reasonable goals that can be reached, but usually with a lot of work," she said.
###
For more information, contact Dawson at (206) 543-1051 or dawson@u.washington.edu or Ozonoff at (916) 734-6068 or sally.ozonoff@ucdmc.ucdavis.edu
For a review copy of the book, contact Abby Peck at Guilford Press at (212) 431-9800 or Abby.Peck@guilford.com.
Two decades ago there was little hope when a child was diagnosed with autism. Parents were often told their child couldn't succeed in school and would have to be institutionalized. Much has changed in the intervening years, particularly in how science understands what today is considered to be a spectrum of autism disorders and how well many children respond to treatment.
However, it still can be a numbing and confusing experience for parents who receive a diagnosis that their child has autism and then must sort through the wide variety of treatment approaches available. Helping parents deal with this experience is why two leading researchers, Sally Ozonoff and Geraldine Dawson, have written "A Parent's Guide to Asperger Syndrome and High-Functioning Autism," which has just been published.
Ozonoff is an associate professor of psychiatry at the M.I.N.D. Institute at the University of California, Davis, and Dawson is a psychology professor and founding director of the University of Washington's Autism Center. Co-author of the book is James McPartland, a UW doctoral student working with Dawson.
The book is designed to be a road map to help parents of children with high-functioning autism and Asperger syndrome through trying times, starting with diagnosis progressing through childhood and into adulthood.
Researchers now know that there is a spectrum of autism disorders affecting people in varying degrees of severity. People with the most severe form, or what is termed classic autism, are often very handicapped and may be mentally retarded. In its most severe form such children are nonverbal, aloof from other people and exhibit very restricted and repetitive behavior.
People with high-functioning autism and Asperger syndrome are not as severely affected. A child with high-functioning autism fits the definition of autism but has such better cognitive and learning abilities. These children have initial difficulty acquiring language but eventually are able to speak at a level appropriate for their age. Children with Asperger syndrome are similar to those with high-functioning autism but have fewer symptoms and have little or no difficulty developing language at the appropriate age.
Dawson and Ozonoff estimate that autism spectrum disorders affect up to 0.6 percent of the U.S. population, upwards of 500,000 people. Two-thirds of those appear to have high-functioning autism or Asperger syndrome.
"We are seeing an increasing number of these children in our clinic, and more cases of Asperger syndrome and high-functioning autism are being diagnosed at a younger age," said Dawson. "The prognosis for many of these children can be quite positive compared to 20 years ago. Today 25 percent to 30 percent of them finish high school and a quarter of those go on to college."
The book's guiding principle is to focus on a child's strengths, not weaknesses, and to have parents channel their child's unusual behaviors and ways of thinking into positive achievements.
"There are many examples of children with Asperger syndrome or high-functioning autism who grew up to be successful adults. The key was their being able to use their strengths," said Dawson. "There is a tendency to focus on children's problems so they don't get a chance to figure out how to use their strengths. These children have unique ways of learning so it is very important to identify a child's learning style. This can help them blossom rather than flounder."
The book takes parents through the diagnostic process, outlines the various treatments available and discusses the impact of Asperger syndrome and high-functioning autism at home, at school and in the social world of children. It also prepares parents to help their children as they enter late adolescence and adulthood. The authors discuss what issues parents are likely to face, what their options are and what is scientifically known so they can make the best decision for their child.
"Autism is a test of unconditional love for parents because in the beginning many children don't give any emotional feedback. The parents' love carries the relationship for a long time," said Dawson.
"Most parents are devastated and the impact on the family is great. Divorce is very common and other siblings sometimes can be neglected. But many parents rally and are able to start on this journey to find their child. They need to know this process is a distance race, not a sprint, and that eventually their child can lead an extremely satisfying and productive life.
"There is no reason why many people with Asperger syndrome and high-functioning autism can't get married, go to college, get a job and give to society. All are reasonable goals that can be reached, but usually with a lot of work," she said.
###
For more information, contact Dawson at (206) 543-1051 or dawson@u.washington.edu or Ozonoff at (916) 734-6068 or sally.ozonoff@ucdmc.ucdavis.edu
For a review copy of the book, contact Abby Peck at Guilford Press at (212) 431-9800 or Abby.Peck@guilford.com.
Thimerosal Being Poised to Make A Come-Back?
State laws may hurt U.S. flu efforts - regulators
Wed Nov 30, 2005 6:01 PM ET
By Maggie Fox, Health and Science Correspondent
WASHINGTON, Nov 30 (Reuters) - State laws forbidding the use of a controversial vaccine preservative could threaten efforts to protect the population against an avian flu pandemic, health officials said on Wednesday.
They said more than 20 U.S. states have laws pending that would limit or forbid the use of thimerosal, a mercury-based preservative. Six states have enacted legislation that takes effect as soon as January 2006.
Several people speaking at a meeting of the National Vaccine Advisory Committee said the laws would be an impediment to efforts to speed delivery of vaccines should the H5N1 avian flu, or any other virus, mutate into a pandemic strain.
"The states that passed these laws have just introduced a huge barrier to influenza programs," said Mary Beth Koslap Petraco, coordinator of child health for the Suffolk County Department of Health Services in New York.
She noted recent shortages of influenza vaccine, and hitches this year with distribution of the vaccine.
"If we think we have a problem this year with getting angry phone calls, I can't imagine what's going to happen next year," Koslap Petraco said.
Most doctors say thimerosal is safe and studies have shown there is no association between vaccines of any type and neurological diseases such as autism. Experts say the type of mercury used in thimerosal does not affect the body in the same way as mercury found in pollutants.
But several groups dispute this and some high-profile books have claimed that mercury is causing an epidemic of neurological disease. They claim that U.S. health officials have covered up evidence of this.
DISPELLING DOUBTS
Manufacturers are removing thimerosal from vaccines, saying that while it is not unsafe, it is important to dispel any doubts about the safety of immunization.
The "vast majority" of influenza vaccines still contain thimerosal, said Dr. Melinda Wharton of the National Vaccine Advisory Committee.
Some states exempt influenza vaccines, Wharton said. California's bill prohibits use of thimerosal in vaccines except for the influenza vaccine in pregnant women or children under the age of 3.
But Delaware, for instance, has passed a law prohibiting the use of any vaccines containing any mercury, even trace amounts, as of 2008.
Making vaccine mercury-free means packaging individual doses -- something that is not necessarily easy for manufacturers to do. Experts said this could be even more difficult in the case of a pandemic, when large batches of vaccine would have to be rushed out.
Wharton said legislators may not understand the dangers, and she said the bills appear to have been driven by activists.
"Some of the individuals who have been actively involved in this issue clearly been on a state-to-state road show," she said. "State health departments and state health officials clearly have not been involved in trying to mold legislation."
Spokespeople for SafeMinds, a group that lobbies against thimerosal, could not be immediately reached for comment.
Dr. Jerome Klein of the Boston University School of Medicine and a member of the committee, said groups should propose alternative legislation that would limit the use of thimerosal while leaving wiggle room for emergencies.
"All of the intellect in the world is not going to stop this in some states. It is only going to get worse," Klein told the meeting.
But Claire Hannan, of the Association of Immunization Managers, which groups state health departments, said her group was worried that this would convey the impression that thimerosal is indeed harmful.
"From a public health standpoint, there is concern about endorsing any legislation at all," she said.
Wed Nov 30, 2005 6:01 PM ET
By Maggie Fox, Health and Science Correspondent
WASHINGTON, Nov 30 (Reuters) - State laws forbidding the use of a controversial vaccine preservative could threaten efforts to protect the population against an avian flu pandemic, health officials said on Wednesday.
They said more than 20 U.S. states have laws pending that would limit or forbid the use of thimerosal, a mercury-based preservative. Six states have enacted legislation that takes effect as soon as January 2006.
Several people speaking at a meeting of the National Vaccine Advisory Committee said the laws would be an impediment to efforts to speed delivery of vaccines should the H5N1 avian flu, or any other virus, mutate into a pandemic strain.
"The states that passed these laws have just introduced a huge barrier to influenza programs," said Mary Beth Koslap Petraco, coordinator of child health for the Suffolk County Department of Health Services in New York.
She noted recent shortages of influenza vaccine, and hitches this year with distribution of the vaccine.
"If we think we have a problem this year with getting angry phone calls, I can't imagine what's going to happen next year," Koslap Petraco said.
Most doctors say thimerosal is safe and studies have shown there is no association between vaccines of any type and neurological diseases such as autism. Experts say the type of mercury used in thimerosal does not affect the body in the same way as mercury found in pollutants.
But several groups dispute this and some high-profile books have claimed that mercury is causing an epidemic of neurological disease. They claim that U.S. health officials have covered up evidence of this.
DISPELLING DOUBTS
Manufacturers are removing thimerosal from vaccines, saying that while it is not unsafe, it is important to dispel any doubts about the safety of immunization.
The "vast majority" of influenza vaccines still contain thimerosal, said Dr. Melinda Wharton of the National Vaccine Advisory Committee.
Some states exempt influenza vaccines, Wharton said. California's bill prohibits use of thimerosal in vaccines except for the influenza vaccine in pregnant women or children under the age of 3.
But Delaware, for instance, has passed a law prohibiting the use of any vaccines containing any mercury, even trace amounts, as of 2008.
Making vaccine mercury-free means packaging individual doses -- something that is not necessarily easy for manufacturers to do. Experts said this could be even more difficult in the case of a pandemic, when large batches of vaccine would have to be rushed out.
Wharton said legislators may not understand the dangers, and she said the bills appear to have been driven by activists.
"Some of the individuals who have been actively involved in this issue clearly been on a state-to-state road show," she said. "State health departments and state health officials clearly have not been involved in trying to mold legislation."
Spokespeople for SafeMinds, a group that lobbies against thimerosal, could not be immediately reached for comment.
Dr. Jerome Klein of the Boston University School of Medicine and a member of the committee, said groups should propose alternative legislation that would limit the use of thimerosal while leaving wiggle room for emergencies.
"All of the intellect in the world is not going to stop this in some states. It is only going to get worse," Klein told the meeting.
But Claire Hannan, of the Association of Immunization Managers, which groups state health departments, said her group was worried that this would convey the impression that thimerosal is indeed harmful.
"From a public health standpoint, there is concern about endorsing any legislation at all," she said.
Out of the Abundance of the Heart, the Mouth Speaks
From John Gilmore of A-CHAMP:
Check out the CDC's official annual report:
The State of the CDC, Fiscal Year 2004, CDC Protecting Health for Life
http://www.cdc.gov/cdc.pdf
Do a search for "Autism".
What do you find?
Nothing.
Are we surprised?
Perhaps you might want to ask CDC Director Dr. Julie Gerberding, MD, MPH, what this says about CDC priorities.
Call her at 404-639-7000.
From the National Autism Association
On the Combating Autism Act of 2005
Dear National Autism Association Members and Friends:
As you know, the Combating Autism Act of 2005 was first presented to us in July of this year for our review. After carefully analyzing the draft we were given, we were unable to support the bill as it was written. Our primary concerns were as follows:
1) No mention of vaccines or vaccine components, as an area of study or in any other context, was contained in the bill.
2) Adequate oversight of government involvement in steering research and management of data was not incorporated.
3) Date of 2008 to begin research on environmental factors in the development of autism was delaying what should be a main priority in the research agenda.
4) Funding for biomedical research was too low.
After several discussions among our board members and with others in the autism community, we submitted to the other groups assessing the bill an alternate version that included our suggestions. Following several teleconferences among our board members working on the bill, and further discussions with other organizations within our community, a new version of the Combating Autism Act has been written. In its present form, we believe the bill is now one we can support.
To address our first concern regarding the absence of language including vaccines, the bill has been revised to state, under Section 499B:
'(b) Autism Centers of Excellence-
'(1) IN GENERAL- In carrying out subsection (a)(1), the Director of NIH shall award grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on autism.
'(2) RESEARCH- Each center of excellence that receives funding under paragraph (1) shall conduct basic and clinical research into autism. Such research—
'(A) shall be conducted in the fields of developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, endocrinology, gastroenterology, and toxicology; and
(B) should include--
'(i) investigations into the cause, diagnosis, early detection, prevention, control, treatment, and cure of autism;
'(ii) research on high-risk infant siblings; and
‘(iii) research on a broad array of environmental triggers which may have a possible role in autism, including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).
Our second concern regarding inadequate oversight has now been addressed by the following three mechanisms that we believe will allow for greater transparency and integrity:
1) Expanded IACC (Interagency Autism Coordinating Committee), a federal committee that meets twice per year to review and revise the Autism Research Roadmap. A minimum of 6 members, or one-third of the membership, must be from the autism community. Up until now, this membership has been discretionary, but passage of the Combating Autism Act will require that these positions from within the autism community be filled.
2) Formation of an Autism Advisory Board, a panel comprised of scientists and members of autism advocacy groups formed for the purpose of peer review of research grants.
3) Establishment of a Congressionally Mandated Medical Research Program, which requires public participation in research funding decisions.
The third concern of delaying crucial environmental research until 2008 has been addressed by moving the date up to coincide with passage of the bill, effective in 2006.
Lastly, the funding for all research, including biomedical that we believe will provide the most meaningful answers for our children, has increased to over a billion dollars. While this figure includes all areas of research, the oversight mechanisms listed above will allow those in the autism advocacy community, including those emphasizing the critical need to address neurotoxic exposures, to have a hand in allocating funds.
Although this bill may not fully address the concerns of many in the autism community, we believe it to be a first step among many that will be necessary to meet the tremendous needs of individuals diagnosed with autism and related neurological disorders.
In addition to lending our support to this legislation, we are urging Congress to declare a National Emergency regarding the autism epidemic, and to take the appropriate steps to address this epidemic that claims 100 children each day.
To adequately confront this national emergency, it is imperative that an official investigation of government malfeasance regarding the use of the mercury-based vaccine preservative thimerosal be set in motion immediately with Congressional or Senate hearings. This step must be taken to ensure that no stone be left unturned in determining the affects this exposure to mercury has had upon nearly an entire generation of American children, and to determine what role our regulatory agencies may have played in allowing such widespread and prolonged exposures to occur.
Furthermore, we are requesting a full investigation of the Institute of Medicine’s handling of the clinical research regarding thimerosal its Immunization Safety Committee members were entrusted with reviewing in 2004. We are asking that a new committee be convened to evaluate the research ignored by the IOM in 2004, along with the relevant research that has been published since the former committee adjourned.
The measure of a civilized society is the manner in which it treats its most vulnerable populations. If action is not taken now, this plague will only increase and so will the cost to our society.
The National Autism Association is prepared to support this legislation, and after its enactment, will closely monitor the policies and programs it establishes.
Sincerely,
National Autism Association
Officers and Board Members
Dear National Autism Association Members and Friends:
As you know, the Combating Autism Act of 2005 was first presented to us in July of this year for our review. After carefully analyzing the draft we were given, we were unable to support the bill as it was written. Our primary concerns were as follows:
1) No mention of vaccines or vaccine components, as an area of study or in any other context, was contained in the bill.
2) Adequate oversight of government involvement in steering research and management of data was not incorporated.
3) Date of 2008 to begin research on environmental factors in the development of autism was delaying what should be a main priority in the research agenda.
4) Funding for biomedical research was too low.
After several discussions among our board members and with others in the autism community, we submitted to the other groups assessing the bill an alternate version that included our suggestions. Following several teleconferences among our board members working on the bill, and further discussions with other organizations within our community, a new version of the Combating Autism Act has been written. In its present form, we believe the bill is now one we can support.
To address our first concern regarding the absence of language including vaccines, the bill has been revised to state, under Section 499B:
'(b) Autism Centers of Excellence-
'(1) IN GENERAL- In carrying out subsection (a)(1), the Director of NIH shall award grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on autism.
'(2) RESEARCH- Each center of excellence that receives funding under paragraph (1) shall conduct basic and clinical research into autism. Such research—
'(A) shall be conducted in the fields of developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, endocrinology, gastroenterology, and toxicology; and
(B) should include--
'(i) investigations into the cause, diagnosis, early detection, prevention, control, treatment, and cure of autism;
'(ii) research on high-risk infant siblings; and
‘(iii) research on a broad array of environmental triggers which may have a possible role in autism, including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).
Our second concern regarding inadequate oversight has now been addressed by the following three mechanisms that we believe will allow for greater transparency and integrity:
1) Expanded IACC (Interagency Autism Coordinating Committee), a federal committee that meets twice per year to review and revise the Autism Research Roadmap. A minimum of 6 members, or one-third of the membership, must be from the autism community. Up until now, this membership has been discretionary, but passage of the Combating Autism Act will require that these positions from within the autism community be filled.
2) Formation of an Autism Advisory Board, a panel comprised of scientists and members of autism advocacy groups formed for the purpose of peer review of research grants.
3) Establishment of a Congressionally Mandated Medical Research Program, which requires public participation in research funding decisions.
The third concern of delaying crucial environmental research until 2008 has been addressed by moving the date up to coincide with passage of the bill, effective in 2006.
Lastly, the funding for all research, including biomedical that we believe will provide the most meaningful answers for our children, has increased to over a billion dollars. While this figure includes all areas of research, the oversight mechanisms listed above will allow those in the autism advocacy community, including those emphasizing the critical need to address neurotoxic exposures, to have a hand in allocating funds.
Although this bill may not fully address the concerns of many in the autism community, we believe it to be a first step among many that will be necessary to meet the tremendous needs of individuals diagnosed with autism and related neurological disorders.
In addition to lending our support to this legislation, we are urging Congress to declare a National Emergency regarding the autism epidemic, and to take the appropriate steps to address this epidemic that claims 100 children each day.
To adequately confront this national emergency, it is imperative that an official investigation of government malfeasance regarding the use of the mercury-based vaccine preservative thimerosal be set in motion immediately with Congressional or Senate hearings. This step must be taken to ensure that no stone be left unturned in determining the affects this exposure to mercury has had upon nearly an entire generation of American children, and to determine what role our regulatory agencies may have played in allowing such widespread and prolonged exposures to occur.
Furthermore, we are requesting a full investigation of the Institute of Medicine’s handling of the clinical research regarding thimerosal its Immunization Safety Committee members were entrusted with reviewing in 2004. We are asking that a new committee be convened to evaluate the research ignored by the IOM in 2004, along with the relevant research that has been published since the former committee adjourned.
The measure of a civilized society is the manner in which it treats its most vulnerable populations. If action is not taken now, this plague will only increase and so will the cost to our society.
The National Autism Association is prepared to support this legislation, and after its enactment, will closely monitor the policies and programs it establishes.
Sincerely,
National Autism Association
Officers and Board Members
NAAR + Autism Speaks = Autism Speaks, Inc.
I wonder what this means for the direction of NAAR's research dollars. NAAR is known for not taking the mercury hypothesis very seriously, Autism Speaks is very new to the game and I don't really know what they think of the mercury theory. We will keep an eye on this to see if this leads to any changes.
Autism Speaks And The National Alliance For Autism Research (NAAR) Announce Plans To Combine Operations
The Groups Bring Together Two of the Leading Research and Advocacy Organizations in the Fight Against the Nation's Fastest Growing Serious Developmental Disorder
(New York, N.Y. - Nov. 30, 2005) - Autism Speaks and the National Alliance for Autism Research (NAAR) have signed a memorandum of understanding to combine operations and bring together two of the leading organizations engaged in the battle against autism, it was announced today by Mark Roithmayr, president of Autism Speaks and Glenn Tringali, chief executive officer of NAAR. The two organizations expect to conclude all due diligence and final board approvals by January 31, 2006 and will collectively be known as Autism Speaks, Inc.
The consolidation of the two charities is based on their joint commitment to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the nation's fastest growing developmental disorder; and to advocate for the needs of affected families. Autism spectrum disorders are diagnosed in one in 166 children, affecting four times as many boys as girls. The diagnosis of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
“Autism Speaks and NAAR share a vision that collaboration and cooperation among the best minds and impassioned advocates within the autism community will provide the most effective, cohesive realization of our common mission,” said Roithmayr and Tringali in a joint statement. “Research, treatment and awareness are, and will continue to be, the priorities as we move forward.”
Under the proposed terms of the transaction, the consolidated organization will maintain NAAR's nationwide walk program and international affiliates, as well as integrate the current NAAR scientific research processes and protocols. The professional staffs of both organizations are also expected to be integrated over the next year.
The boards of both Autism Speaks and NAAR, together with their founders, were unanimous in their decision to move forward with the consolidation. It is expected that under the new structure, the funds dedicated to autism biomedical research will increase significantly.
Autism Speaks, Inc.
Autism Speaks was co-founded by Suzanne and Bob Wright in February, 2005 in response to the diagnosis of their grandson. Bob Wright is Chairman and CEO of NBC Universal and is Vice Chair of General Electric. The organization's guiding principles have been to raise public awareness about autism and its devastating effects on individuals, families, and society, and to raise funds to support effective biomedical research in autism. Since its launch 9 months ago, Autism Speaks has raised over $30 million.
National Alliance for Autism Research (NAAR)
Founded in 1994, NAAR was the first national nonprofit organization in the country dedicated to funding and accelerating biomedical research exclusively for autism spectrum disorders. In 1997, NAAR put biomedical research on the map when it awarded five grants, each totaling approximately $30,000, to pioneering autism researchers. Three of those initial five researchers have attracted larger, multi-million dollar grants from the National Institutes of Health based on their autism pilot studies initially funded by NAAR, exactly as NAAR hoped would occur. To date, NAAR has committed almost $30 million to fund more than 270 autism research projects, fellowships and collaborative programs worldwide - more than any other non-governmental organization. NAAR's ongoing funding of pilot studies and collaborative research projects, as well as its advocacy for increased government funding, have played a key role in the increased funding for autism research at the National Institutes of Health and the Centers for Disease Control and Prevention.
I'm Back
I have been mostly absent for the last week as I was prepping for Chandler's IEP mediation with the school district. I am thrilled to say that our agreement was signed yesterday and Chandler will be getting all the services that he needs.
I truly believe that God was looking out for my little guy as he ended up with much more support than I thought we would be able to get them to agree to. I am really grateful to Him.
So I have missed so much news and a very volatile conversation (at least for my blog) and I hope to catch up over the next week.
Ginger
I truly believe that God was looking out for my little guy as he ended up with much more support than I thought we would be able to get them to agree to. I am really grateful to Him.
So I have missed so much news and a very volatile conversation (at least for my blog) and I hope to catch up over the next week.
Ginger
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