Update: The BMJ is concerned about conflicts of interest at the CDC.
BMJ's Jeanne Lenzer reports in her May 15, 2015 article "Centers for Disease Control and Prevention: protecting the private good?":
Marcia Angell, former editor in chief of the New England Journal of Medicine, told The BMJ, “The CDC has enormous credibility among physicians, in no small part because the agency is generally thought to be free of industry bias. Financial dealings with biopharmaceutical companies threaten that reputation.” http://www.bmj.com/...
ORIGINAL POST:
I believe that autism is virtually always caused by genetic and environmental factors that set the stage for the illness long before a child receives a vaccine; in other words, the origins of autism have been established as being completely independent of whether or not a child receives a vaccine.
I think vaccines are good, but this belief doesn't prevent me from being fascinated by the revelations of William Thompson, a senior scientist at the Center for Disease Control ("CDC") (see his statement below).
Thompson's information doesn't change my support of vaccines, but it does cast some light on how data is handled by the CDC.
Thompson has raised questions about a small group of African-American boys who were left out of a 2004 study:
Journal questions validity of autism and vaccine study
By Debra Goldschmidt
CNN
August 28, 2014
...In 2004, scientists at the CDC's National Immunization Program published their study in the journal Pediatrics...
The CDC study authors found no link between the age children were given their first MMR vaccination and autism diagnoses. Nor did they find a statistically significant increased risk for a particular racial group.
The CDC's raw data was made available for other scientists to use when its study was published in 2004. Hooker said he began his research after he was contacted by one of the original study authors, William Thompson, in November 2013. Thompson is a senior scientist with the CDC, where he has worked since 1998.
Hooker said he believes the increased risk for African-American boys he found was not identified in the CDC study because the researchers, including Thompson, deliberately limited the number of participants they included in their analysis, which he said altered the results. Hooker said that by excluding children without birth certificates, the CDC study results were skewed...
Hmmm. Kids without birth certificates?
Most or all of the children without birth certificates were apparently black boys, since the results showed a slightly increased incidence of autism for black boys when the results were included.
Not having a birth certificate sounds like it might be a risk factor in itself. We're talking about kids whose parents were apparently so overwhelmed and harried that they couldn't find their children's birth certificates. I doubt that this is the only basic necessity these kids are missing.
But clearly these children had medical records, since they were receiving vaccinations, and their ages were known. (Update: A commenter below says that there were 5 boys in this group. Surely the CDC knew that leaving them out of the study would change the results. Here's another Daily Kos blog with more information on this issue.)
Research has revealed that some types of autism can be reversed by intensive therapy. See the recent New York Times article The Kids Who Beat Autism by RUTH PADAWER July 31, 2014.
Sadly, there are forms of autism that no amount of therapy will reverse.
The new information has got me to thinking about geeky kids, the ones who seem almost autistic, who are supported and enriched by parents with time and money, and find a path to success in life. In fact, they often find enormous success.
Then I wonder about the least-fortunate American youngsters, a group in which African-American children are over-represented, who suffer enormous stress both physically and mentally as a result of the poverty and deprivation.
Is it possible that a few kids in both the white and black communities are particularly sensitive to the vaccine, but most kids have enough resources to help their developing brains overcome the insult?
And why boys, but not girls? Probably because boys of all races are more vulnerable to autism. Perhaps there is a tiny difference between white and black girls, but the numbers are so small that we can't see it.
If I had an African-American, autistic son born since 2004, I'd be furious with the CDC for withholding data showing an increased connection between the MMR (measles, mumps, rubella) vaccine and autism in African-American boys under three years of age compared to white children.
As Thompson says (see statement below), the decision-making process of the CDC should be transparent.
Parents of African-American boys might or might not have delayed vaccinating their sons if the information had been made public. But at least they would have had the facts.
Was the CDC worried that we would have measles, mumps and rubella epidemics if it included the kids without birth certificates in the study?
Epidemics aren't likely until more than 5% of the population becomes susceptible to an illness. All African-American males together form roughly 5% if the population, and only a small percentage of those males are under three years of age. So it wouldn't seem to risk an epidemic if we waited until African-American boys were three years old to vaccinate them. (Either that or create equality for black and white children. Take your pick.)
It's foolish for the CDC to ignore research data, because then the CDC becomes like the boy who cried wolf. People are less likely to believe it when it tells the truth.
The CDC should only exert its power to conceal information when it has very significant concerns about very significant issues.
The CDC above all wants to prevent hysteria.
AIDS
In the early 1980s they told hemophiliac boys not to worry, to stay calm, and keep taking the infusions of clotting factor that ended up killing them.
The CDC in the early 80s should have recommended that all infusions of clotting factor be stopped temporarily as soon as the evidence that there was a deadly virus in the serum (that later became known as AIDS).
All that was needed to prevent transmission of AIDS through clotting factor was to heat the product. A few hemophiliacs would have died from bleeding, but that would have been better than having huge numbers of innocent boys and men wiped out by AIDS.
It seems to be an almost a religious tenet in the medical community that hysteria must be prevented at any cost. Any cost at all. I sometimes wonder if the CDC isn't more hysterical than a fully-informed public would be.
Here is the statement of William Thompson:
Press Release
“Statement of William W. Thompson, Ph.D., Regarding the 2004 Article Examining the Possibility of a Relationship Between MMR Vaccine and Autism”
FOR IMMEDIATE RELEASE
-AUGUST 27,2014
My name is William Thompson. I am a Senior Scientist with the Centers for Disease Control and Prevention, where I have worked since 1998.
I regret that my coauthors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.
I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated with their administration are vastly outweighed by their individual and societal benefits.
My concern has been the decision to omit relevant findings in a particular study for a particular sub group for a particular vaccine. There have always been recognized risks for vaccination and I believe it is the responsibility of the CDC to properly convey the risks associated with receipt of those vaccines.
I have had many discussions with Dr. Brian Hooker over the last 10 months regarding studies the CDC has carried out regarding vaccines and neurodevelopmental outcomes including autism spectrum disorders. I share his belief that CDC decision-making and analyses should be transparent. I was not, however, aware that he was recording any of our conversations, nor was I given any choice regarding whether my name would be made public or my voice would be put on the Internet.
I am grateful for the many supportive e-mails that I have received over the last several days.
I will not be answering further questions at this time. I am providing information to Congressman William Posey, and of course will continue to cooperate with Congress. I have also offered to assist with reanalysis of the study data or development of further studies. For the time being, however, I am focused on my job and my family.
Reasonable scientists can and do differ in their interpretation of information. I will do everything I can to assist any unbiased and objective scientists inside or outside the CDC to analyze data collected by the CDC or other public organizations for the purpose of understanding whether vaccines are associated with an increased risk of autism. There are still more questions than answers, and I appreciate that so many families are looking for answers from the scientific community.
My colleagues and supervisors at the CDC have been entirely professional since this matter became public. In fact, I received a performance-based award after this story came out. I have experienced no pressure or retaliation and certainly was not escorted from the building, as some have stated.
Dr. Thompson is represented by Frederick M. Morgan,Jr., Morgan Verkamp, LLC, Cincinnati, Ohio, www.morganverkamp.com.
RESEARCH Open Access
Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data
Brian S Hooker
Translational Neurodegeneration 2014, 3:16
Published: 8 August 2014
...Conclusions:
The present study provides new epidemiologic evidence showing that African American males receiving the MMR vaccine prior to 24 months of age or 36 months of age are more likely to receive an autism diagnosis...
Below the fold, please find my response to the overwhelming number of comments I received:
Update:
Wow! This is my third diary, and I'm bowled over by the enormous response! The fact that so many people took the time to write comments is gratifying to me.
I am fascinated by the powerful emotions that my diary triggered. It seems that most of the commenters don't take it lightly when someone challenges the CDC. I suppose that the vaccine issue is a volatile one, and a lot of people feel the need to play whack-a-mole regarding this issue.
As it happens, I'm not much interested in the vaccine issue. I'm interested in how decisions are made at the CDC.
I have a lot on my plate right now, so I don't have time to reply to every point that was raised in the comments section, but I did write a response to one commenter:
Dear Hudson Valley Mark, (0+ / 0-)
I notice that many, perhaps most, of the commenters here see things in black and white, not shades of gray. Most think that I must be either completely anti-vaccine or completely pro-vaccine.
Actually, I am pro-vaccine but I think that the CDC is sometimes inappropriately influenced by politics. That seems to put me in a rather isolated position. In my diary above, the thing I was most concerned about was the truth. I was not attacking vaccines.
Both the pro- and anti-vaccine contingents seem to think that a good person does not stray from orthodoxy.
Hudson Valley Mark, you jumped to your own conclusions here. I get the impression that you don't want to consider the possibility that the CDC might be imperfect because you fear that civilization would collapse if a single additional person were to doubt the reliability of the CDC.
But the fact is that the CDC is vulnerable to politics. This became obvious during the early days of the AIDS epidemic when hemophiliacs paid with their lives because they did not have political power. The CDC did not cover itself in glory during the early 1980s. Fortunately, nothing equally tragic seems to have occurred since then.
This statement of yours is incorrect and it is rather hysterical:
"But basically [Maura Larkins' diary] convicts some researchers — and then the entire CDC — of misconduct based on the fact that someone named Hooker said so."
You are wrong to say that I relied on Hooker for the information that children without birth certificates were left out of the study. That fact is the basis of my diary. Do you deny that it is a true fact?
I am curious about something else you said. What are the "invidious conclusions" that I have published "as fact"?
You are the one who says that the CDC has committed "misconduct" by leaving out the kids without birth certificates. I never used that term. Many people would disagree that it is misconduct to discard some data. Also, some would argue that it's necessary for public safety to hide some facts, and is not misconduct to protect public safety.
The fact that a birth certificate is missing from the record does not make a child's development of autism less worthy of notice. At worst, the child's birth date or birth place might have been incorrect--but probably the data for the kids without birth certificates was correct.
Simply put, there were toddlers in the study who developed autism--and they were left out of the study.
One doesn't have to be an enemy of vaccines to question this decision to discard data.
Why do you feel the need to demonize someone who questions a decision of the CDC? It appears that you are remarkably sensitive and defensive.
Why are you so upset that people are learning that the CDC left out a few kids from its study? It's not really an earth-shaking piece of information. But it's interesting. Why don't you chill out a bit while it's discussed?
Do you feel that it is evil to question any action of the CDC?
I would argue that it's more dangerous to have a partially-informed public than to have a fully-informed public. Look what happened in Guinea recently. People who had lost confidence in their government (with good reason), and who had little understanding of Ebola, attacked and killed health workers. People can be very stupid, obviously. This fact helps explain why the CDC might leave kids with birth certificates out of its study.
Fortunately, most of the people in the US have confidence in their government.
I urge the CDC to do all it can to keep it this way.
by Maura Larkins on Sun Sep 21, 2014 at 03:24:27 PM PDT
Update Oct. 3, 2014:
PS to HudsonValleyMark:
Since you seem so freaked-out about the mere thought of a few parents of African-American boys possibly delaying vaccinations until age 3 because of a worry about fuzzy data, you should REALLY freak out about what's going on in Malibu, Santa Monica, and Beverly Hills. California reports a vaccination rate in that area of 21%, compared to 77% in Liberia. Here's that story:
L.A.: Where the rich don't vaccinate (VIDEO)
CNN Tonight
October 2, 2014
L.A.'s wealthiest neighborhoods have child vaccination rates lower than West Africa.
--L.A.: Where the rich don't vaccinate (VIDEO)
CNN
Kyung Lah
UPDATE: I think it's idiotic for people like HudsonValleyMark (see comments below) to say that the public does not have the right to discuss a government report without seeing details that are released only to those approved by the government or those who have access to certain private subscriptions.
I think HudsonValleyMark shouldn't be discussing the report if he's not willing to reveal details that, according to him, justify his opinions.
The fact remains that some kids were intentionally left out of the breakdown by race. Any anomaly among African-American children in that group was buried in an ocean of kids of other races.
* * *
UPDATE JAN. 28, 2015
On Jan. 27, 2015 the Washington Post published "The new scientific revolution: Reproducibility at last" regarding the unreliability of scientific research and recent efforts to make research data more transparent:
Reproducibility is a core scientific principle... if experimental results can’t be reproduced, it’s hard to know what to make of them.
“The whole point of science, the way we know something, is not that I trust Isaac Newton because I think he was a great guy. The whole point is that I can do it myself,” said Brian Nosek, the founder of a start-up in Charlottesville, Va., called the Center for Open Science. “Show me the data, show me the process, show me the method, and then if I want to, I can reproduce it.”
The reproducibility issue is closely associated with a Greek researcher, John Ioannidis, who published a paper in 2005 with the startling title “Why Most Published Research Findings Are False.”
The government has an even greater obligation to be transparent than private research companies do. The CDC should publish its data for all to see. Right now, it screens applicants who request to see the data on the study discussed in this post.