Navigating the medical system can be confusing and frustrating. We get advice from experts on how to become a smarter health care advocate for yourself and your loved ones.
In 1998 a research paper was published that linked the childhood measles, mumps and rubella vaccine to the onset of autism, a life long developmental disorder. Follow up studies could not replicate the findings casting doubt on its conclusions, and earlier this year it was proven that this original study was, in fact, fraudulent. But the damage was done. Childhood vaccination rates dropped resulting in outbreaks of measles and whooping cough. Funds that would have gone to new research into the causes of autism were diverted, and surveys indicate that about one in five Americans continues to believe that a childhood vaccine can trigger autism. A story of fraudulent medical research and its consequences.
- Alison Tepper Singer Founder and President of the Autism Science Foundation, formerly Executive Vice President of Autism Speaks, served on the federal Interagency Autism Coordinating Committee (IACC.)
- Dr. Roberta DeBiasi pediatric infectious diseases physician at Children’s National Medical Center
- Seth Mnookin Author of "The Panic Virus: a True Story of Medicine, Science, and Fear." He is a contributing editor at "Vanity Fair" and a former senior writer for "Newsweek."
MS. DIANE REHMThanks for joining us, I'm Diane Rehm. As the rates of autism have soared nationwide, so too has the search for a cause for this developmental disorder. In the late '90s, a British medical researcher claimed he had confirmed a cause. His paper published in the medical journal, Lancet, linked autism to childhood vaccines. The result, an entire vaccine movement. Recently, that paper and its author, Dr. Andrew Wakefield, were thoroughly discredited, but the damage persists.
MS. DIANE REHMJoining me in the studio, Seth Mnookin. He’s the author of a new book titled, ''The Panic Virus.'' Dr. Roberta DeBiasi of Children's National Medical Center and Alison Singer of the Autism Science Foundation. Do join us, 800-433-8850, send us your e-mail to email@example.com, feel free to join us on Facebook or send us a tweet. Good morning to all of you.
MR. SETH MNOOKINGood morning.
DR. ROBERTA DEBIASIMorning.
MS. ALISON TEPPER SINGERGood morning.
REHMSeth Mnookin, let me start with you. Talk about Andrew Wakefield and his paper on autism and vaccines.
MNOOKINWell, his -- as you said, the paper was published in 1998 and one of the things that's interesting is the paper itself did not go nearly as far as Wakefield did in his subsequent public pronouncements. The paper in The Lancet was fairly careful to make clear that this was speculative. It was labeled a early report, but then when Wakefield held a press conference, one of the first things he said was that he could not recommend that parents give their children the measles, mumps, rubella vaccine until, what he said, the questions raised by his paper were answered.
MNOOKINIt was later revealed that he had taken out a patent for an alternate measles vaccine just before the paper was published and also had a financial relationship with a lawyer who was working with families who believed their children had been injured by vaccines. So there were a number of conflicts of interests and that came out even before further questions about the data came out.
REHMSo the statements about the vaccines were made pretty definitively by Wakefield, saying that parents ought to avoid those vaccines and this is published in The Lancet with some reservations, would you say?
MNOOKINWell, the actual paper that was published, yes, had reservations, but the way that the story was covered in the newspapers right from the get-go reflected mainly his statements, although they attributed them to a prestigious medical journal. So I think that was one of the things that really set the ball rolling. Right from the outset was the press' approach.
REHMIt's interesting that you say that what the media did was to try to present both sides right from the start.
MNOOKINRight. And it's really -- it's one of my sort of pet peeves. There’s a sense that objectivity is the same thing as doing on the one hand, on the other hand about factual issues. I think it's legitimate to say on the one hand, on the other hand when you're talking about political candidates, but when you're talking about issues of fact, I think it does a real disservice to readers and that's what -- I think that's a real reason the controversy persisted for years after the data in the paper and subsequent concerns about vaccines had been fairly definitively shown to be -- not to be founded in anything.
REHMSeth Mnookin, he's the author of ''The Panic Virus: A True Story Of Medicine, Science and Fear.'' Turning to you, Alison Singer, what has been the reaction to the paper that discredited the autism community in the sense that now it's being shown that Dr. Wakefield's research was more than a little flawed?
SINGERWell, I think the science, looking at autism and vaccines, was done well before the paper was retracted by The Lancet and before the material was published in The British Medical Journal that determined that it was an elaborate fraud that Wakefield had perpetrated. The way science needs to be done is when a scientific question is put before us and there's one study, that study needs to be replicated and several laboratories set out specifically to try to replicate Wakefield's findings and none could. And we got to the point where we had study, after study, after study that looked at whether vaccines were associated with autism and none of the studies indicated that there was a cause or relationship between vaccines and autism.
REHMSo you initially were the executive vice-president for communications for Autism Speaks. How long did you serve in that position? When did you come to the conclusion that this was off the mark?
SINGERWell, I was actually the first professional hired by Autism Speaks when it was launched back in February of 2005 and I was there for four years, but there came a point, as the science -- looking at vaccines and autism, as more studies were published, it became very clear that there was no causal link between vaccines and autism and it gets to the point where I said to myself, how many studies do we need? Where is the tipping point? Is it five, is it 10, is it 15, is it 20?
SINGERWe now have over two dozen studies and there the tendency, because there were still people who were believing in almost a religious way that they were absolutely convinced that vaccines caused autism and it didn't matter what the science says, Autism Speaks took the position that at the end of each study, when we were reported on the study, we would say, but more studies need to be done. And in my opinion, there comes a point where no, no more science needs to be, no more studies need to be done because those funds are better spent elsewhere in doing studies that look at what really does cause autism.
REHMAlison Singer, she's Founder and President of the Autism Science Foundation and turning to you Dr. DeBiasi, do parents still ask you about the connection between these vaccines and autism?
DEBIASII think parents still have concerns, not necessarily only because of autism. There are other questions that we get asked ranging from are there other additives in vaccines or is it too many vaccines? So I think the amount of questions directed specifically to autism, I think, has lessened, but have not gone away and I think as Alison pointed out, there is a small group of people that will not really believe scientific methods, so that's going to be a difficult group of people to convince with any of these questions.
REHMAnd why do you suppose that is? Why is it that they're rejecting the new information?
DEBIASII think there's several reasons. You know, first of all, I think most people know someone who has autism. We've all met someone, we have a friend, someone in our playgroup, a mother, who has autism so it's visible thing. I think if you asked those same people, how many of you have seen polio or measles or rubella or have treated a child with bacterial meningitis? The answer is zero.
DEBIASISo we have a problem where people are afraid something they do see, but the things that really do exist as a harm, they don't see because the vaccines are so effective. So I think that's one of the issues. The second issue is that science in general is not always explained very carefully or in layman's terms to people, so some people will feel like they're just talking over my head and they're trying to confuse me.
DEBIASISo I think it's really important for scientists, and I'm a scientist, to put things in terms people can really understand and that's what I try to do when people show me that they don't really believe the science that's been done. I try to go through it point by point to explain to them in terms they can understand and then let them see if they'll make the right decision.
REHMAnd to what extent do you feel that patients who come to you finally understand the importance of having these vaccines?
DEBIASIAnd I’m going to answer the question for primary care physicians. I’m a tertiary care, infectious disease physician, so I see the patients that actually get the vaccine-preventable illnesses in the hospital, so they've got meningitis or pertussis and are on a ventilator, so I see that. My colleagues that are in the primary care profession, however, are the ones that field the bulk of the questions from their patients and that's appropriate because that's the person they have the relationship with.
DEBIASIAnd I have to say, when parents present these questions to their physician with whom they have a good relationship, the vast majority, when they're explained to on a point by point easy to understand way, do go ahead and vaccinate, so -- not everyone, but I'd say probably 75 to 80 percent of people that previously were afraid to vaccinate, when they have this discussion with their physician, will decided to go ahead and vaccinate based on the data.
REHMCourse there is some background for this kind of fear, isn't here, Seth? I mean, didn't a certain number of children who were given the polio vaccine come down with polio?
MNOOKINYes, absolutely. In fact, there were four labs that were initially licensed to produce the first batch of polio vaccine and one of those labs produced a contaminated batch that paralyzed, and in fact, killed some children. There have been other instances where obviously, as is the case with any intervention or anything, there are risks associated with vaccines.
REHMAnd that was when they finally went from a live vaccine to one that did not contain living material, wasn't it?
MNOOKINYes, and that's been an ongoing sort of step to take to make them safer.
REHMSeth Mnookin, he's author of ''The Panic Virus.'' We'll be right back.
REHMThe fear of vaccines is probably nothing new, but Seth Mnookin, you have a chapter in your book and it talks about a 1982 WRC-TV report. And that was titled "DPT: Vaccine Roulette." Talk about what happened there.
MNOOKINWell, that was a report that talked about fears that the DPT, diphtheria tetanus pertussis vaccine, was causing brain damage in children and it was based largely on anecdotal reports from families and on the work of some scientists who had already reputations of being opposed to vaccines. And the issue -- or one of the issues there is it got that same on the one hand, on the other hand treatment. And when you have one researcher on one side and 100 on the other side, but you present that as if it's one-to-one, I think the public ends up getting a very inaccurate picture of what the actual situation is. And that sparked a huge series of fears and really, I think, is the kind of touchstone for what we see now still.
REHMNow, hasn't -- at least hasn't Dr. Wakefield claimed that his ideas about these vaccines have been successfully tested in other countries, Alison?
SINGERI think we have to look at the way those studies were done and how they are accepted by mainstream medical associations. I mean, the IOM, the American Academy of Pediatrics, the NIH, they have all discredited the work that Dr. Wakefield has done. And I think it's important, though, that even though that work has been discredited, to realize that there is a lasting legacy in that I, for one, when that paper came out, separated the vaccines from my daughter -- from my younger daughter. I gave her the separate measles, mumps and rubella shots. And really, in retrospect, what that did was it didn't in any way reduce the chance that she would be diagnosed with autism, but it absolutely increased the likelihood or it prolonged the window during which she might contract a vaccine-preventable disease.
SINGERAnd I think there's still a lot of fear in the community because of the fact that the paper was published in The Lancet. And I think The Lancet has to take some responsibility. Parents rely on those high-impact medical journals and we change our behavior accordingly, so I think that is one of the lasting legacies, that there's still -- I think once you ring the bell, it's hard to un-ring it. Once you put a scary idea in someone's head, even in the face of overwhelming and compelling science, there are still people who are fearful.
DEBIASIYeah, I was just going to comment on what Alison was saying about the way studies are done. So this is just an example of, you know, it's true that very credible sources have looked at the research carefully in the methodology and discredited it, but for a parent, that doesn't really mean anything other than, I'm supposed to believe what IOM says. So the way I approach that is when I do a research study using the method that Dr. Wakefield used, for instance PCR, looking for little bits of viruses, it's really important.
DEBIASIAnd the first thing you ever do when you set up the experiment is set up a group of positive controls that I know have it and I'm going to test and show in my experiment I can show it's positive and I'm going to have a bunch of negative controls that I know don't have it and I'm going to do the test and show that those are all negative. And then if I have that in place, I can believe what I find in my actual samples. That was not done in that study. And if you're in the science world, that would not even be considered as publishable data.
REHMBut then why did The Lancet publish it?
MNOOKINWell, I actually fall down, I think, more on the side of allowing people to publish bad research papers because I think you should err on the side of open scientific discourse, but this was a case in which it was so clear from the outset that, again, what he said at the press conference was not in any way supportable, that I really am looking back and completely stymied as to why it got the coverage it did. His -- that initial study was based on 12 children, which is called a case series. Drawing -- even if all of his data had been accurate, drawing a conclusion for a case series would be like saying the four people in this room are a case series and so 75 percent of the population is female.
MNOOKINWhat you then need to do from a case series is look at an entire population. So it doesn't take advance scientific training on the part of journalists to look at that paper and say, well, the real story here is why is this researcher drawing this conclusion? So I -- you know, I support journals publishing bad papers. I think the media has a real responsibility to make sure that they're being accurate in what they then report to the public.
REHMWhat's fascinating to me is that, Seth, you say that it's affluent, intelligent and liberal communities that tend to be more anti-vaccine. Is that your experience, Dr. DeBiasi?
DEBIASII think it occurs in all groups, but I think what's surprising is that you'd think that folks that have a little more ability to understand the science would therefore then be convinced, but I think that is an appropriate observation. And one example of that, for instance, is pertussis vaccinations. So we can talk about this more, but as vaccine -- rates of vaccination for pertussis decline, we see these outbreaks of pertussis...
DEBIASI...and measles and many other things. So most recently, for instance, in 2010, we have over 10,000 cases of pertussis in California. And if you look at the rates of vaccination and the counties in which most of the cases are occurring, it's occurring in counties where the vaccination rates have declined where we're seeing the most number of cases, so -- and those are affluent communities, so I think there's a clear correlation in some of these cases.
REHMSo the message that came across first from that 1982 television report followed up by the report in The Lancet and Dr. Wakefield's press conference really got your folks going.
SINGERAbsolutely. And I think that we were right to look at whether vaccines were associated with autism. Clearly the number of vaccines that children were receiving had increased and it was something that we needed to study. Fortunately, it's a question that is answerable by science. You can look at children who received the MMR vaccine and children who did not receive the MMR vaccine and see if there's a difference in the rate of diagnosis of autism and there was not. Similarly, you can look at children who received vaccines containing the mercury-based preservative thimerosal and children who received none or different levels of thimerosal to see if they had different neurological outcomes and they did not.
SINGERSo I think where we are now is we have to be willing to accept what the science is saying. And I think there is still a small faction of parents who are clinging onto this belief with almost a religious conviction, as opposed to a scientific conviction and that's caused a lot of harm. I think you have to be willing to accept what the data show.
REHMHere is a Facebook comment from Josie who says, "I have two sons with autism, both have Asperger syndrome. I do not blame the vaccines they've had. I blame or credit genetics, mine and my husband's. I'm grateful for the vaccines my children have had. Can you imagine the diseases they might have suffered or even died from if they hadn't been vaccinated? As they are, I wouldn't change what has been, even if it was proven that vaccines caused their autism, I'd rather have two live Asperger syndrome children than to take the chance that either one of them might die from a hard disease like measles or polio." What do you say to that, Dr. DeBiasi?
DEBIASII -- you know, obviously, I agree with that and I think what this person has done is weighed the benefits and risks. And that's really what we do every day. We wake up and take a shower. We could trip and fall in the shower. We could be struck by lightning. Those things are very rare and so we always need to take into consideration the chance of something bad happening versus good happening in any decision and vaccines are one of those.
REHMBut here's an alternative view from Damien who says, "The retraction of the paper does not mean that the relationship does not exist, it simply means that one flawed scientist performed several flawed experiments to test a hypothesis. Researchers can argue passionately about their belief either way, but the sum total of all interactions between any drug or vaccine and the human body is too difficult to follow entirely, either in the short or long term." Alison.
SINGERWell, I think the challenge is that science can never prove a negative. You can never prove definitively that vaccines do not cause autism, you can only show, based on a large body of studies, that vaccines were not related to autism in those studies. Just like similarly, I could climb up to the roof of this building and I could tie a sheet on the back of my head and jump off the building and I would -- if I did it 5,000 times, I would likely land on the ground 5,000 times, but that doesn't prove that I can't fly.
MNOOKINI think that's a perfect point. All that proves is that all the evidence we have so far indicates that human beings can't fly and because of that, we're very confident that they won't be able to tomorrow. And I think that that misunderstanding about how the scientific process works plays a huge role in this. One point you raised earlier that I think is also really crucial is that there were many instances along the lines where I think the drug companies and the public health community really failed in their responsibility. When the issue of this mercury-based preservative, the accumulative affect or the accumulative dosage, was first realized, I think that it is shocking that there hadn't been research into that previously. There were very good reasons already to be confident that that was not causing developmental disorders.
REHMWhen did they begin putting thimerosal into vaccines?
MNOOKINDecades and decades ago. There was...
REHMHow many decades?
MNOOKINWell, I know the case that prompted it was in -- I believe in the '30s in Australia where an -- where a doctor was vaccinating a community and he was using a single vial and going back and using needles in there and it got infected...
MNOOKIN...and he killed -- or it killed a number of children. And after that, there was a search for a preservative that would keep multi-dose vials safe. And I think with thimerosal -- and it's similar to when people talk about there being aluminum in vaccines, there's also a misunderstanding of what that means. There's aluminum in the environment. You get more aluminum from breast milk than you do from all of the vaccines. You get 10 times more aluminum if you're drinking formula, so I think that, you know, the sound bite, there's aluminum in vaccines, is very scary. And I have a 14-month-old son. I understand why that's so scary, but it's important to understand what that means.
REHMSeth Mnookin, he's the author of "The Panic Virus." And you're listening to "The Diane Rehm Show." We've got lots of callers waiting, so we'll open the phones, 800-433--8850. Let's go to Unicoi, Tenn. and to Daniel. You're on the air.
DANIELHi, Diane. I would like to -- I have an autistic child. He was born with autism. I've never immunized any of my children and I'd just like to kind of present a different viewpoint of all this. I support Dr. Wakefield's message, maybe not necessarily his study. I think most of us don't understand that autism is a gut related disease and is about the leaky gut in the child and toxicity and that the antibiotics basically, in my opinion, are suppressing the immune system as opposed to developing the immune system.
DANIELYou know, I use Chinese medicine and homeopathy. Chinese medicine's like 1,000 years old and I've seen significant -- and also nutrition I -- it's a very important thing to use nutrition with the kids, but, you know, we've contaminated our environment, polluted our environment. We're, you know, giving kids foods that are contaminated...
REHMOkay. Now, Daniel, I wanna stop you right there because I want to ask you, you say you have never had your children immunized or your child. You have an eight-year-old who has autism. You've never had a measles vaccine or anything of that sort?
DANIELAbsolutely not. I've never immunized any of my children.
REHMOkay. Now, let me ask you, Dr. DeBiasi, to what extent is Daniel putting not only his own child at risk, but other children around that child?
DEBIASIWell, these diseases that we vaccinate against, and there's 14 of them now, do circulate in the community, so the risk of acquiring one of these is directly related to how much circulation there is in your specific community. But I think getting at his specific points, if I could make just a couple of things. The issue about autism being related as a gut disease, that actually was a theory also raised in the Wakefield paper and others and that also has been looked at very carefully with large epidemiologic studies in Scandinavia, hundreds, maybe 70,000, 100,000 patients, so there is no link -- in other words, if you take...
REHMThere absolutely no link.
DEBIASIRight. So if you take children that have autism and children that don't have autism, there's no increased frequency of gut disorders, diarrhea, dismotility, any of those -- inflammatory bowel disease. There's no difference in the populations that have autism or don't, so I think that is an example of a well done scientific study that did look at that as a viable hypothesis and disproved it.
MNOOKINWell, there are a couple things that I just wanna point out. And one, what Daniel said about he believes that this is what -- that vaccines can cause autism is really the sentiment that got me started on the book, that people are basing medical decisions on what they "believe" as opposed to what evidence supports. This is a situation in which the question really has been asked and answered. We don't need to base beliefs on what happens when children get these diseases. Ten kids died last year in California of whooping cough, nine of them were under six months old. When an unvaccinated child returned from Switzerland with measles to California, he caused an outbreak that cost $10 million to contain and resulted in the hospitalization of an infant.
REHMSeth Mnookin, he's the author of "The Panic Virus." Dr. Roberta DeBiasi, she's at the Children's National Medical Center, Alison Singer of the Autism Science Foundation.
REHMWelcome back. And here's a comment, another on -- let's see, here's a tweet who says she's interested to hear Seth Mnookin address why celebrities with no medical background are believed by some people more than medical professionals.
MNOOKINI think part of the answer here is that the medical community and the public health community has not been good about understanding that they need to have a narrative that is easily understandable to the public.
REHMWhich is clearly what Dr. DeBiasi is talking about.
MNOOKINRight. And celebrities are almost by definition good at public relations. And so when you have a story that is easy to convey in a 30 second sound bite, that's going to be much more convincing than a doctor who's used to talking in much more obtuse language.
REHMAll right. To Arlington, Va. Good morning, John.
JOHNGood morning. I guess you answered most of my questions while I was waiting, but I have one more, though. Does this -- can Mr. Mnookin or Dr. Mnookin speak to the fact that this kind of misinformation is going on because of the lack of transparency with the relationship between the public health and the pharmaceutical companies? And just to let you know, I did have -- I did take the problem of that paper into consideration when I vaccinated my daughter, but I mean, in the end, I just said, you know, I just took it like a Russian roulette and had her vaccinated and said, whatever comes, because the risk of not vaccinating her would've been much greater.
JOHNBut, you know, I was still very concerned about the fact that there's still a lot of these unanswered questions in terms of the statistical increase in these rare diseases and there not being any answer or any research and, you know, some -- it might lead some to believe that there's no profit in looking at what the causes are for all these statistical increases that all of a sudden seem to increase.
MNOOKINWell, I think, first of all, there would potentially be enormous profit if someone was able to come up with a drug that people felt either protected potentially against autism or was an effective treatment. I think the point about conflicts of interest within drug companies is a very good one. And certainly there have been plenty of reasons over the past several years not to put all of our faith in drug companies. This is probably the most examined childhood public health preventative measure.
MNOOKINWe don't need to just say, I'm going to trust that vaccines are safe because Merck tells me so. We have dozens of governments around the world, hundreds of scientists, some of which are associated with drug companies and some of which are not, end results from millions and millions of children. So I think in some ways, that is sort of a smoke screen that's put out by people to plant more doubt in people's minds than there should be.
REHMTo follow-up on that, here's an e-mail from Katherine in Louisville, who says, "Modern medicine has a credibility problem. Many people have experienced medicine's unsatisfactory attempt to treat some ailments, think back pain. Pharmaceutical companies aren't trustworthy given their interest in profits. New parents don't yet have a trusted relationship with the pediatrician and have to sort through information about vaccines without knowing who they can trust. I understand their wariness." Dr. DeBiasi.
DEBIASII think -- let's just go over a little bit about how a vaccine actually comes into use, because I think some people are not aware of the safety pieces that are put into place. When a pharmaceutical company wishes to develop a vaccine, there's first years of data in laboratories, basic science in cells and in animals. And if there's promising data, then that's presented to the FDA, which is not part of the for profit enterprise, so this is a separate government agency that looks at -- specifically at safety and efficacy of anything that's gonna come on the market. And the scrutiny that these vaccines that are potentially going to come on the market are given are far above any drug that we have ever put on the market, so lots and lots of attention.
DEBIASIThey have to present some preclinical data in small numbers of people, which are never children, by the way. The studies are always done initially in adults. If there's safety and efficacy, then things finally trickle down to children and this process is anywhere from 5, 10, 12 years in the case of varicella vaccine, so I think it is a misunderstanding that some people think pharmaceutical companies can just say, hey, I've got a vaccine and we all say, okay, we're going to use it, it's safe. There's a lot of oversight before we ever recommend giving a vaccine to a child.
MNOOKINOne thing I wanted to say about think back pain is I think that there's a basic sort of misapprehension that medicine is an all or nothing issue. The fact that we don't have a good cure for back pain doesn't mean that you wouldn't get treatment for cancer. There are plenty of medical issues that we don't yet know how to cure. We do know that what the mechanism by which vaccines work and what they can protect us against.
REHMAll right. To Nelson who's in Miami, Fla. Good morning to you.
NELSONGood morning. I'd like to say that I would have enjoyed someone else on your show today that could've stood in with the position of Dr. Wakefield. He can't clearly be the only doctor worldwide who believes that there's somehow some link to vaccinations and autism and to have a more two-sided conversation. And in regards to why people are not being convinced, I think the problem lies simply that science has not been able to show or demonstrate clearly why autism even exists. And I think that we can debate back and forth as much as possible, but until science can prove why autism even exists, I think people will never be completely convinced until we can show with proof that Dr. Wakefield is wrong.
SINGERI agree with what you're saying. I think the question of whether vaccines are related to autism will never go away until science can answer the question of what does cause autism, but that's why we need to focus on funding the studies that will answer those questions. And I think one of the tragedies here has been that we have invested millions and millions of dollars continuing to look at vaccines and doing more and more vaccine studies, you know, again, the 25th study, the 26th study, the 27th study, when there are so many leads about what causes autism that really warrant funding and investigation.
REHMAnd you talked about having a two-sided conversation, Nelson. That's precisely what I did not wish to have since Dr. Wakefield's study has been so severely discredited. Seth.
MNOOKINDiane, I think that's such a good point and I think that that sort of instinct to have "both sides" really does damage, not just in this debate. A parallel that I draw is the Birther Movement. The fact that some people believe that President Obama was not born in the United States doesn't make that a valid debate. But again and again, you saw news organizations presenting it as, well, let's have this person who believes that he was and points to his birth certificate and all of the factual evidence and this person who just feels like he wasn't. And I think that's horribly irresponsible of the press.
DEBIASIAnd I think another point is, in the case of the Wakefield theory, there has been a debate. And that's come in the form of 24 studies from five countries that have all shown the same thing, so the debate has occurred. So I'm a little baffled why people think his theory has been ignored. It's been actually looked at very closely.
REHMWe're beyond the debate at this point, thank you. And to Heather in Cincinnati, Ohio. Good morning, you're on the air.
HEATHERGood morning. I have just a couple points to make. One was a question I wanted to ask your panelists about exactly how parental antidotal kind of information is considered, not necessarily in research, 'cause I know it's not considered at all, but like for instance, the commenter who said that it's a gut disease and how one of your panelists quickly refuted that. I take issue with that just because I'm in touch with literally thousands of parents online who have autistic children and all of our kids have major gut disease. They see GI specialists, they're on Prevacid, they have any number of major problem with bowels and whatnot and I just find that kind of stunning that that's just so quickly brushed aside when so many parents are living with these problems.
HEATHERAnd as far as, you know, the actual studies, I'm just really curious if the studies that were done to disprove Wakefield, did they actually look at specific shots like the MMR or did they take into account the really big schedule that kids are on now, the number of shots, the volume of shots? 'Cause I don't believe that, you know, any particular shot causes autism, but I am concerned as a parent of the actual number of shots that are given to our kids. When you look at how many shots I was given as a child in the '70s and then compare it to how many shots kids get now, it's hard not to be a little concerned about that and I wonder if there are any efficacy studies out there that look at that relationship.
REHMSure. Roberta, why don't you talk about the gut disease first.
DEBIASISure. There are a lot of things. And the first I'd like to do is apologize if I -- in my answer, I suggested that I don't believe that autistic children have GI symptoms, 'cause they clearly do. My point is that children that don't have autism have an equal incidence of those exact same GI disorders, so in other words, that is not a distinguishing feature of autistic children.
REHMHeather, do you understand that?
HEATHERYes, I do.
DEBIASIThe question about number of shots is also one that comes up very frequently. And of course, I'm a mother and I don't like giving shots to my children because, of course, we always want our children to be smiling and not cry, but let me just go over a little bit in simple terms about the science of vaccinology. So in the '70s, we only had one or two vaccines and the way those vaccines were made, we were presenting large parts or whole parts of the germ itself to the child. So the actual amount of "foreign material" that we're presenting to the child back then was quantifiable. And let's say that number was 300 back in 1970. And when I say 300, I mean little tiny pieces of things that are specific to a germ that your body's going to say, hey, I'm gonna make a response to this.
DEBIASIIf we now flash forward to present day, we have 14 vaccines, but if we look at the actual number of those little particles that we're presenting to a child, it is drastically less, so we're actually giving less exposure to foreign materials to children, even though the "number of vaccines is larger." And it's also helpful, I think, for parents to understand, to put this context, we all, when we were born, are immediately bombarded with billions and billions of germs and your body is constantly mounting a response to foreign materials. And this is what our immune system was built to do. And we have a great ability to do this. So in the grand scheme of what we encounter in real life, what we're giving children in vaccines is a drop in the bucket.
REHMAnd you're listening to "The Diane Rehm Show." Seth, what about the study she asked about?
MNOOKINWell, there a couple things about the studies. One, there absolutely were studies done on children who were immunized with the MMR and weren't and compared the rates of autism between those two populations. I think what some people are talking about is why aren't there studies that are designed to look at that? So why don't we take a population, immunize half of them, not immunize the other half and what's called a vaccinated versus unvaccinated study. And the reason, of course, is because if you have a possibly lifesaving intervention, you can't take children and say, why don't you not have this and see what happens?
MNOOKINThe thing that, I think, is -- one of the things that's very interesting is, first of all, parent anecdotes are listened to and they're listened to to help design studies. I think that what we do not do is use anecdotes as a substitute for data. There's a saying that the plural of anecdote is not data. But I know that many parents feel like they're not listened to.
REHMBut what does that mean if you have a child who has just received the DPT vaccine, for example, and three weeks later, this healthy, laughing, wonderfully performing child all of a sudden shuts down?
MNOOKINWell, there -- a couple of things. One, obviously children get vaccines when they're between zero and three, for the most part, which is precisely when a lot of developmental disorders are diagnosed. So clearly, there's going to be some correlation in time. There are certain amount of diagnoses that are going come within some temporal relationship to vaccines. But another thing is, over the past several years, when there have been court cases or other situations where parents have talked about their belief that they got a vaccine and the next day...
MNOOKIN...this happened and we've been able to go back and look at contemporaneous medical records or video records, oftentimes, that ends up being the case. Their memory of what happened is not reflected by the actual evidence. That does not mean in any way...
REHMWell, I'm not sure what that means. What are you saying, Seth?
MNOOKINSo if a parent says he got the vaccine on Monday and on Tuesday, he was a completely different child. In situations when then you can go back and look at the medical records, the medical records will say that it was actually six or nine months later when the changes in behavior were first noticed. Sometimes even when there's been video of the child taken by the parents, it showed something different than what they remembered. Not because they were being dishonest, but because that's how the human brain works. We reorder things to create a narrative that makes sense.
REHMSo how much money is now going toward scientific research as to what causes autism?
SINGERWell, the National Institutes of Health will spend about $160 million on autism research and private foundations together will spend about 65, $70 million, so a good amount of money is being -- is going towards research, but there is so much work to do. We are finally at the point now where there is more good research in autism to be funded then there is money to fund it. And I'm very concerned about -- a lot of the funding from the NIH right now is from the stimulus package and that will go away. So we have a lot of scientists with very promising ideas about cause. It's the question of cause that will put this issue to bed and so that's where we really need to be investing our dollars.
REHMAlison Singer, she's founder and president of the Autism Science Foundation, Seth Mnookin, he's author of "The Panic Virus: A True Story of Medicine, Science and Fear" and Dr. Roberta DeBiasi, she's a pediatric infectious disease physician at Children's National Medical Center. Thank you all so much.
REHMThanks for listening, I'm Diane Rehm.
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