By Greg Dobbs
Dear Family and Friends,
Although the piece that just ran on our program World Report was my swan song on HDNet, it was satisfying, because while everyone surely won’t agree with the conclusions I reached, it’s on an important topic that is terribly complex and equally controversial: childhood vaccinations and autism, not only the long-running debate about cause-and-effect, but the federal government’s inconsistency dealing with it.
For starters, for the sake of those of you who don’t know much of anything about autism, I should define it. The only trouble is, each definition is presented differently. The first website that comes up when you Google “autism” is an agency within the National Institutes of Health and it describes autism this way: “A pervasive developmental disorder… that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills.” The site goes on to say, “Autism is a physical condition linked to abnormal biology and chemistry in the brain. The exact causes of these abnormalities remain unknown, but this is a very active area of research. There are probably a combination of factors that lead to autism.”
Wikipedia gives this description: “Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.”
Then there’s the website of the United States Surgeon General: “Autism, the most common of the pervasive developmental disorders (with a prevalence of 10 to 12 children per 10,000), is characterized by severely compromised ability to engage in, and by a lack of interest in, social interactions. It has roots in both structural brain abnormalities and genetic predispositions, according to family studies and studies of brain anatomy.”
Or you can just take it the way I described it in the program as I introduced two young women who I’ll tell you more about later in this letter. What you need to know now is, both of them are autistic, but each was treated in a different way when it came to making a claim for lifetime care: “Both girls are brain-damaged, and both have limited language and socialization, lots of repetitive movement, no eye contact, no tolerance for change.” One thing I left out, but a common trait according to parents of autistic children, is tantrums. Severe tantrums, sometimes with no discernable catalyst.
In short, autism, no matter what words we use to describe it, is the result of some kind of disorder in the brain. And that is a key word: it is a disorder, not a disease. What this means is, it’s not something you can detect by testing someone’s blood. Or mapping their genome; so far, although scientists have been searching for an “autism gene,” (which in fact the Surgeon General declares a high priority), they haven’t found one. You wouldn’t even find autism in an autopsy. It doesn’t have a physical component; it is a set of behaviors. In other words, if someone exhibits the symptoms of autism, they are autistic. Or, to use the medical lingo, they are on the “spectrum of autism.”
The story I did is about one of the several potential causes of autism: vaccines. And if I had to summarize that part of the story in a single sentence, it would be this: some people believe childhood vaccinations trigger autism, and some don’t. The other part of the story--- the new part, which even many Americans who are familiar with the debate don’t know--- is this: a few decades ago, Congress set up a trust called the National Vaccine Injury Compensation Program, to pay claims in special “vaccine courts” for what are called “vaccine injuries,” the purpose of which is twofold. First, the program was created explicitly to protect pharmaceutical companies from massive and crippling lawsuits, since their production is in the national interest; in return for that protection, the act mandates that they fund the trust, (which apparently they finance through a levy on every dose they sell, which would actually mean, we’re funding it ourselves). Second, the program was created to provide resources for the special, sometimes lifetime care some vaccine-injured people need. In its early years, the vaccine courts did find in favor of families whose children regressed to autism after getting their vaccinations. But once there appeared to be an epidemic of autism, coinciding with the spread of vaccination mandates to all 50 states, the government stopped paying, and fought the families that made newer claims every step of the way.
Maybe the most important point to convey is, all the science isn’t in yet. Plenty of people who reject any link between vaccines and autism will tell you that all the science is in. But I’ve come to believe, they’re wrong. When they make the assertion, they’re talking about epidemiological studies that say, We cannot find a link to establish that vaccines cause autism. But that’s not real convincing when you dig deeper and realize, a biological scientific study isn’t going to find a link because as I wrote above, autism is an observable behavior disorder, not a detectable disease. It’s also not convincing when you dig down and learn, they’re willing to declare without qualification that vaccines are not a cause, but then, they still can’t say what the causes actually are.
Even the Department of Health and Human Services, which flatly rejects any direct cause-and-effect, concedes that point. When I wrote to HHS asking if all the science is in, they wrote back to me, “No. Scientific inquiries continue on autism, including causation.” The Surgeon General’s office seems no more certain; its website contains this tentative language: “It seems likely (my italics) that the roots of most mental disorders lie in some combination of genetic and environmental factors… including… autism.”
The traditional view has been that in the majority of cases, genetics are the cause of children’s autism. But to underline what I say about the science still being inconclusive, earlier this year, a study from Stanford and the University of California at San Francisco looked at twins where one or both has autism and concluded that long-held assumptions about autism being mainly genetic are wrong. Yet two weeks ago, another credible study was published by the University of California at Davis, which says that children with autistic siblings are more likely to be autistic themselves… which suggests once again a stronger genetic link. My point? There is no consensus.
So, while I’ll explain in a moment why so many people are sure that there is a link between vaccinations and autism, let me first explain why--- or at least speculate why--- so many are sure there isn’t. One of their arguments--- besides all the science being in--- is that autism naturally occurs around the same ages when kids start getting their vaccines; ipso facto, it is a coincidence. But maybe more telling, many of the people I talked to, people opposed to the notion that there’s a link, began their arguments by telling me that if it were widely believed that vaccines can cause autism, then more parents would opt their children out of vaccination programs (for example, if you claim a “religious” exemption, it is granted without question because authorities aren’t necessarily permitted to challenge such a claim), and that would mean higher rates of the very diseases the vaccines are designed to prevent, which certainly would fly in the face of the national interest.
And there are statistics to back them up. Just last week, a study in San Diego showed that an increasing number of parents are not allowing their kids to get their vaccinations for measles, mumps, rubella (the combo known as MMR), diphtheria, pertussis which is whooping cough, tetanus (DPT), hepatitis-B, flu, polio. And sure enough, the incidence of some of these diseases, for which an increasing number of children have not been protected, is up. This leads those who reject a cause-and-effect to say, skipping your children’s vaccinations is a more dangerous risk than the risk of autism. Personally I agree, although if I had an autistic child and had reason to believe his vaccinations were the cause, quite understandably I might define “risk” differently. One mother said to me as her severely autistic child sat on her lap, “If this were your child, if this was your grandchild, you couldn’t look at your child or grandchild and say, ‘It’s okay. It may have happened to you but look at the people we’ve saved’.”
And I’ve heard one more argument from people conversant with the issue, an argument meant to prove that there’s no merit in the claims of vaccine-autism advocates. It’s about a study that was published more than a decade ago by a British doctor named Andrew Wakefield. Based, he wrote, on a survey of autistic children, there’s enough evidence of a link to their vaccinations to justify further research. But after Wakefield’s report produced fear in a lot of parents in both Great Britain and the U.S., motivating the withdrawal of lots of kids from vaccination programs, a journalist wrote in the British Medical Journal that Wakefield’s data was fraudulent, and by and large his study has been discredited. There is debate about the integrity of the journalist who denounced Wakefield, but that’s beside the point. Even if Wakefield did fabricate his findings, it doesn’t change the preponderance of circumstantial evidence I see that a link exists. What’s more, in the spirit of tit-for-tat, one of the most oft-cited studies denying a link was conducted by a Danish scientist named Poul Thorsen. Well, now he’s discredited too, because only a few months ago he was indicted by a federal grand jury on charges of wire fraud and money laundering, based on a scheme, the Justice Department says, to steal grant money that the Centers for Disease Control in Atlanta had awarded to governmental agencies in Denmark for… guess what… autism research. The bottom line? There might be some bad eggs on both sides.
In the course of covering the story and producing the program on autism, I made connections with about a dozen families with autistic kids. They all tell the same story--- which is mirrored by about 5,000 families who have filed claims with the Vaccine Injury Compensation Program. The story is this: My child was developing normally--- language, socialization, coordination, and everything else--- until his or her vaccinations. And then, everything changed. First, a violent reaction to the shot itself. When I’d point out that every tot cries during a shot, they’d say no, we’re not talking about the normal cry of a child when someone punches a needle into the arm. One mother told me her little girl screamed like a wild animal; she described it as “feral” and said, “I pray to God I never hear it again.”
And that’s not the end of it. All the stories go on to describe severe diarrhea, fevers, rashes, infections, in many cases, seizures, all in the wake of the vaccinations. Scary-sounding stuff. As another mother said to me, there’s only one common denominator: “These babies are not all eating the same food, they’re not drinking the same water, they’re not breathing the same air, but we know from the CDC that over 90% of these children in America have received their vaccines.”
What’s the common denominator in the vaccines? Well, one answer is a controversial preservative, used for decades in all kinds of vaccines, called Thimerosal. Literally half of the weight of Thimerosal is mercury, one of the most toxic chemical elements on earth. Do you remember learning as a child that if you broke a thermometer, you should never never never touch the mercury that spills out? If you are female and have been pregnant, do you remember hearing that tuna fish is the devil, because of the mercury that has been found in fish? But for decades, we injected it in our children.
Again, I think I can plausibly argue that the government is absolutely inconsistent when it comes to the question of the safety of Thimerosal. The Food and Drug Administration does say on its website, “Exposure to… mercury, has been shown to pose a variety of health risks to humans.” Yet it also maintains, consistent with other government agencies, that there is “no evidence of harm from the use of Thimerosal as a vaccine preservative.” Which is fine, until you see that as a “precautionary measure,” the FDA “urged” vaccine manufacturers to “reduce or eliminate Thimerosal… as soon as possible.” In the last five years, happily, all but trace amounts of mercury have been eliminated from most vaccines. But if there is “no evidence of harm,” I have to ask, why remove it at all? Anyway, when the kids who’ve made claim in the “vaccine courts” were inoculated, mercury was part of the vaccines injected in their veins.
Of the families with whom I connected, two of them are centerpieces in my story. The first family lives in Centerville, Tennessee, a couple of hours west of Nashville; the other is in Yuma, Arizona. The parents in Tennessee, the Leteures, have a daughter named Kimberly Sue. The Cedillos, in Arizona, have Michelle. As I said in the beginning of the program, when you see both girls, you don’t need a medical expert to tell you that neither is normal. Both families insist that the cause of their daughters’ autism is the vaccines they received as little girls; their evidence isn’t scientific, but anecdotal: each was developing normally--- as one mother put it, “perfect”--- until the vaccinations, then both girls abruptly severely regressed to the point where today, neither can do anything for herself; each needs round-the-clock care. But there’s one big difference between them: although the government insists that vaccines don’t cause autism, Kimberly Sue was compensated for her condition by a federal vaccine court. Michelle wasn’t.
Why the inconsistency? It seems to be determined by both timing and semantics. The part about timing is this: Kimberly Sue Leteure is nearly 30 years old; she got her childhood vaccinations back in the early 1990s, before the autism epidemic appeared. Michelle will be just 17 next week; by the time she got her vaccinations, every state was mandating them and a lot more kids were getting them… and a lot more parents were reporting awful reactions, in most cases concurrent with a loss of language and diminished social development, part of the sometimes slow but certain onset of autism. The National Vaccine Injury Compensation Program didn’t award Michelle Cedillo a cent.
But the tragedy is amplified by the process. By the time Michelle’s family was filing her claim, about 5,000 families were filing the same claim, telling the same story. So, overwhelmed with the volume of claims, the “vaccine court” took six so-called “test cases” on which all the other claims would then be judged; they called it the “Omnibus Autism Proceeding.” They allowed a committee of claimants to choose their strongest cases to serve as those test cases. Michelle Cedillo’s turned out to be the very first.
The government used seventeen expert witnesses to argue against her claim--- none of them, by the way, ever having actually examined her. And in the end, although Kimberly Sue Leteure had won a similar claim a few years earlier, the goal posts seemed to have moved. Michelle, along with each of the other test cases, lost, which basically killed the claims of five-thousand autistic children. So, if you happened to be born in the 1980s, you were compensated. If you were born after that… you weren’t.
Now here’s the inconsistency about semantics. A group of parents decided to look further into the performance of these “vaccine courts.” They asked Health and Human Services, which administers the Vaccine Injury Compensation Program, for all pertinent documents about judgments made in the courts. The HHS response: a letter, saying it would take four to five years to assemble everything, and cost them three-quarters-of-a-million-dollars.
They could afford neither the money nor the time, so on their own, through hook and crook (because court documents don’t have phone numbers or addresses of claimants, which would have made it easy), they found about 150 families who had been awarded compensation for vaccine injuries by the program. And here’s that inconsistency with semantics: these families had not filed for the vaccine injury of autism; they had filed for the injury of encephalopathy, which is damage to the brain. As one advocate put it to me, they hadn’t used the “A” word. But when the researchers who found these 150 families gave them a check list which basically contained the symptoms of autism, it turned out that in the majority of these compensated cases, the kids were autistic (which is, don’t forget, damage to the brain). The differences were that autism was the key injury they claimed (rather than encephalopathy), and that in some of these cases although not all, its onset came slowly, not abruptly.
But even those distinctions were muddied in the case of an autistic girl in Athens, Georgia, named Hannah Poling. Described as happy, even precocious until she was 19 months old, she had fallen behind on her vaccination schedule because of ear infections and so she got all her shots--- nine doses of vaccines--- in a single visit to the doctor. After that, as her mother put it, “My daughter… was suddenly no longer there.” After her parents, a neurologist and a nurse, filed an autism claim in the “vaccine court” and compensation was awarded, the arbitrator (they call them “special masters,” appointed by a federal judge) wrote that vaccines were to blame for the severe disorder in Hannah’s brain--- again “encephalopathy”--- but Health and Human Services insisted that they didn’t “cause” her autism but rather, “Encephalopathy may be accompanied by a medical progression of an array of symptoms including…autism..” Which basically means, vaccines had only “resulted” in Hannah’s autism, not “caused” it. I call that transparently tortured logic.
I’ve long been aware of the debate at the heart of this story: are vaccines one of the causes of autism? But I’ll be honest: I never paid a lot of attention to it and to the degree that I remember my reactions whenever I heard about it, I kind of thought that the people behind the supposition of cause-and-effect probably spent their evenings looking for UFOs. I don’t think so any more. The very first people with whom I made contact on that side of the debate are a law professor at NYU, a county probation officer in suburban New York, and the wife of a lieutenant colonel in the United States Marine Corps (who only a few days ago left for his third deployment to Afghanistan). In other words, not just a bunch of loonies. We sat in on a parents’ autism support group one night in New York City, and just for the sake of it, I asked each of them to tell me something about themselves. Two are lawyers in New York, one is the communications director for a non-profit, one is a college professor, one is vice president of client services for an investment advisory firm, and for good measure, the last is the daughter of the former Chairman of NBC. Not exactly a fringe group.
They’re not calling for all parents to shun all vaccines. But they are asking for a few things, mainly, what they call “safer” conditions for vaccinations: don’t do it if a child is already sick and the immune system is down, which is part of the story behind many of the autistic children’s vaccinations; don’t do more than one shot at a time; and don’t automatically get the shots if there’s any indication, like from a family history, of a predisposition to adverse reactions, which takes into account the possibility of a genetic link. They also call for more research; as they’ll point out, it once was considered safe to use x-ray machines to measure your feet in shoe stores….and to prescribe Thalidomide to pregnant women. Even a member of the government’s Advisory Commission on Childhood Vaccines told me, “Research on vaccine safety remains flawed and incomplete.”
But they’re calling for something else too. They want Congress to reexamine the National Vaccine Injury Compensation Fund. As I wrote earlier, originally it was created for the purpose of ensuring that “vaccine manufacturers… not be liable for injuries or deaths resulting from unavoidable side effects.” They want a return to the claim-friendly spirit of the legislation which said, judgments on claims should be settled “quickly, easily, and with… generosity.” A federal court also ruled that judgments should be based on probability and logic, not medical or scientific certainty. While another court said, “close calls” should be “resolved in favor of injured claimants.” With only one claim in five winning compensation for vaccine injuries--- which includes reactions like paralysis and blindness that have nothing to do with autism--- it hasn’t worked out that way.
You’ll notice that I have peppered this letter with only a paucity of governmental opinion. I tried for it. Repeatedly. But if you happened to see my program on the air, you heard what I said: no one would talk. Normally it’s not hard to get interviews in Washington DC; since starting with HDNet, I’ve probably made half-a-dozen trips to Washington a year. But for this story, no soap.
For example I asked, repeatedly, to interview someone from the Department of Justice, which argued against the families making claims. My requests were rejected with the response, “The court’s opinion speaks for itself.” I tried to interview any of “special masters” from the vaccine courts, some of whom had mocked the parents as “victims of bad science” with “reconstructed memories” and the doctors who supported them as guilty of “gross medical misjudgment.” One even wrote in a ruling rejecting a claim that she would have to emulate Lewis Carroll and “believe six impossible things before breakfast” before ruling in favor of the child. None of the special masters could do an interview on-the-record. I worked with the FDA to get an on-the-record interview; they “declined.” Maybe it’s just me, but it all started to smell kind of fishy.
I tried, repeatedly, to interview someone--- anyone--- from the Department of Health and Human Services which administers the program., including Secretary Kathleen Sebilius. She was quoted last year in Reader’s Digest, saying of those who argue there’s a link between vaccines and autism, “We have reached out to media outlets to try to get them not to give the views of these people equal weight in their reporting.” When I asked her agency last week whether she’d really said that, they responded, “No one here can remember.” I wonder how they felt when we showed her words, on the page from Reader’s Digest, on the air. All they did offer, by way of an interview, was to accept written questions, which meant, no follow-ups. But I did submit some, the gist of which I’ve related in this letter. Except this one: I asked in an email how HHS explains the cases where compensation was made to autistic children? Their answer: “Over the past 23 years, the Vaccine Injury Compensation Program has compensated cases where a child showed sudden serious brain illness (called acute encephalopathy) at the time of vaccination.” Which doesn’t fully answer the question at all.
The discovery that the government has compensated some children with autism, children like Kimberly Sue Leteure, doesn’t prove that the vaccines actually caused her condition. The newest scientific research about autism doesn’t either. But in the debate over what does cause the disorder, the fact that science still is inconclusive, and the government is inconsistent, gives the families who blame vaccinations for their children’s autism ammunition they haven’t had before.
As I said at the start of this letter, the subject is controversial, and I wouldn’t be surprised if many of you reading this still believe that the whole theory of a link between childhood vaccinations and autism is bunk. So be it. What I’ve loved about the program for which I’ve worked these past seven years is that it has given me a voice, when a voice seemed appropriate, to report things that have been underreported. I think this story is a classic case. And a nice way to finish my work at HDNet.
All the best to everyone in this beautiful summer of 2011,
Since 2004, Greg Dobbs has been a correspondent for HDNet television’s World Report. Besides domestic programs for World Report about everything from PTSD to sexual offender laws to advances with stem cell treatments to abuse of the Indian Trust, the countries around the world from which he has reported include: • Russia (Putin’s politics) • Egypt (terrorism) • South Africa (15 years after apartheid) • Vietnam (legacy of Agent Orange) • Lebanon (Hezbollah) • Venezuela (Hugo Chavez) • The Palestinian Territories and Israel (the inert peace process) • Indonesia (filthy water) • Switzerland (assisted suicide) • Dubai (income versus ideology) • Nicaragua (free trade with US) • Liberia (recovering from civil war) • Great Britain (politics) • Bolivia (coca crops) • Colombia (the drug war) • Mexico (deepwater oil drilling) He also provided live reports along with Dan Rather on primary and general election nights in 2008, and has covered the U.S. space program for HDNet, anchoring live from Florida for every space shuttle launch since the Columbia disaster. Before HDNet, Dobbs worked for 23 years for ABC News, reporting from nearly 80 countries around the world. His major stories overseas for ABC include: • The Iranian revolution • The Soviet invasion of Afghanistan • The Gulf War • The troubles in Northern Ireland • The Solidarity revolution in Poland • The leadership transition in the Soviet Union • The Iran-Iraq war • The conflicts with Libya • The civil war in Zimbabwe, née Rhodesia • The assassination of Anwar Sadat in Egypt His major domestic stories include: • The Watergate scandal • The Indian occupation of Wounded Knee • The Exxon Valdez oil spill Appearing on World News Tonight, Nightline, 20/20, and Good Morning America, Dobbs won two national Emmys and was nominated for more. He also won the Distinguished Service Award from the Society of Professional Journalists. After leaving ABC News, Dobbs was a talk show host on the 50,000-watt KOA Radio in Denver, then hosted on KNRC Radio, and simultaneously was a columnist for The Denver Post and the late Rocky Mountain News. Also, for six years he hosted the Emmy-award winning television program Colorado State of Mind on Rocky Mountain PBS. Besides his new book Life in the Wrong Lane, he is author of a university-level journalism textbook called Better Broadcast Writing, Better Broadcast News. Dobbs and his wife Carol have two grown sons. He is active on community non-profit boards. He is a native of San Francisco with degrees from the University of California at Berkeley and Northwestern University.