Why parents refuse vaccines

The Pediatric Insider

© 2009 Roy Benaroch, MD

Ask 98% of my patients, and they’ll tell you they’ve gotten all of their kids’ vaccines, without qualms or hesitation. Ask the other 2%, and you’ll hear all sorts of reasons why they’ve skipped them. What makes some people look at vaccinations so differently than the rest of us?

Along with clean food and water, vaccinations are generally accepted as one of the greatest public health triumphs of the modern world. We are safe from diseases like polio and measles, which once ravaged millions. We no longer, really, have to worry about most kinds of bacterial meningitis, and we’re able to even prevent some kinds of cancer. Newer vaccines in development include protection against HIV and malaria. At the same time, immunizations are very safe, compared to just about any other medicine or medical intervention. Yet despite their incredible effectiveness and well-documented safety, suspicions remain. Many families choose to skip some or all vaccinations.

We know that vaccine refusers tend to be wealthier, and come from more socially advantaged communities. There also seems to be a neighborhood effect, where people from one small area tends to follow each others’ lead in vaccinating or not vaccinating. But these observations don’t tell us much about the psychology and thinking that leads individual parents to refuse vaccination.

Based on my own observations and conversations with parents who refuse vaccinations, and also with parents who are more eager for vaccines, I’ve come up with my own list of “profiles” of the kinds of parents who are most steadfast in their refusal. I don’t think this list is likely to be complete, and there’s a lot of overlap between the groups. But I think this is a good starting point to understand just where people are coming from. Hopefully, better understanding will lead to improved trust and better decisions for children.

If you are a vaccine refuser, please join in the comments. Does one of these profiles fit you? Have I neglected to understand perhaps your own reasons for refusing vaccines? What sort of information is missing that can help guide parents along this decision? My goal here isn’t to belittle anyone, but to understand and appreciate the concerns of parents. I welcome any comments.

Profile #1: The Government Distruster

I certainly understand that some people feel the government doesn’t always make the best decisions for us. The two parties bicker, and special interests and money seem to have more influence on decisions than the needs of ordinary people. Look at the Clowns in Congress, or service reps at the post office, or IRS telephone screeners– there’s no doubt that government and government employees are not always paragons of virtue and judgment.

Decisions on vaccine recommendations aren’t only made by government employees at the CDC. There is input from all of the major medical associations—pediatricians, family practitioners, internal medicine physicians, obstetricians, and infectious disease specialists are all involved. Specific recommendations are made by the CDC’s Advisory Committee on Immunization Practices, which is comprised of 15 vaccine experts from various fields. There are also vaccine recommendations made by government and health agencies around the world, including the United Nation’s World Health Organization. It is difficult to believe that all of these organizations and experts reviewing the studies and making recommendations have gotten the facts entirely wrong. Though there are some differences in the exact recommendations from country to country, by and large vaccine schedules and recommendations are identical throughout the world.

Some people believe not only that the government is irresponsible and incompetent, but that it’s actually twisted and evil. Like people who believe that the US government itself planned the 9/11 attacks, some people sincerely believe that vaccinations are a great threat to mankind, deliberately put in place by malevolent forces within the government to harm us. To believe this, you have to believe that evil pervades every step throughout government, from the statisticians and analysts at the CDC and university medical centers, all the way up to the surgeon general and president himself. Furthermore, you’d have to believe that this whole vast conspiracy has somehow been successfully hushed up, because there’s no actual evidence for this whatsoever. Is this even remotely possible?

#2 The Science Distruster

Science itself is not a series of facts, or a group of people wearing white coats. It’s a system meant to discern how the natural world behaves, in a way that allows us to predict what will happen in the future. Key features of science include:

• Natural law. There are rules about how things happen, and these rules can’t change. For instance, when a force acts on an object, it’s going to move in a predictable direction, in a predictable way. Natural laws are developed based on observations of real things that happen in real, measurable ways. They can then be tested, to make sure the predictions work accurately and consistently. If an observable case doesn’t fit what we thought of as the natural law, then the law has got to be refined and improved. Though we certainly don’t know how everything works, we’re very reluctant to accept propositions that fly in the face of natural law. You claim you have a machine that extracts energy out of perpetual motion? I want to see it before I believe it. Things that are beyond natural law—the “supernatural”—cannot be part of any scientific theory.
• Testing hypotheses Science relies on experiments. You can’t just say you think something is right, or that something ought to be true based on scientific knowledge. Anything that’s worth knowing through science is testable, and can be tested, and ought to be verified. Things that are not testable (or “unfalsifiable”, a more precise word) are not things that science can support or substantiate. Something like “Michelangelo was a better painter than Da Vinci” isn’t a question that science could test.

Some people who are deeply religious have a distrust of science, but it doesn’t have to be that way. There are many important questions facing mankind for which science may not provide an answer. Why are we here? How should be treat each other? Questions of law, ethics, morals, and aesthetics may not lend themselves to scientific study, and other manners of investigation of these issues are more appropriate. Science is one tool to help us understand their world, but it isn’t the only tool. Trusting science does not have to mean turning your back on religious or other convictions.

Some people refuse vaccines because they do not trust science, or because they feel it is more “natural” to suffer infections. If these infections weren’t good for us, why would they be here on earth? Though “Why do people suffer?” is not a question for science, I personally don’t think that God would have given us the intellect and wisdom to find answers if He didn’t want us to us those answers.

Another potential knock against science: scientists don’t know everything, and don’t pretend to. The very nature of science is to question and to allow new knowledge to replace old. When you read in the paper that a medicine has been found to have a new side effect, that isn’t a failure of science—it means that science did what it was supposed to. Question, learn, repeat; question, learn, repeat. Some people feel more comfortable with absolute truths, but that really isn’t what science is all about.

Which brings us to another problem with science: the language. Scientists use “science terms”—like “This study fails to confirm any link between vaccines and autism,” or “This study adds to the evidence that vaccines are not a cause of autism.” What parents want to read is an unequivocal “Vaccines don’t cause autism.” But it is impossible to completely rule out a negative statement using the tools of science. We can say that the odds against this are very, very small, and getting smaller, but we cannot prove with absolute certainty that it could not possibly in any circumstance at any time be true. Those language of science is exact, but can sound “weaselly” to many people, leading to distrust.

Profile #3: The Big Pharma Distruster

Big Pharma is The Big Boogeyman on the anti-vaccine web sites, and perhaps they do deserve some distrust. Basically, their duty is to their shareholders: to make a profit. Their business is to develop and sell medicines and vaccines, and to make money doing so. Vaccines and medicines create billions of dollars of profit. Does that mean that drug companies cannot be trusted?

It’s wise to view promotional material from drug companies as you would advertising from any other company: with great skepticism. Advertisers want to sell you things, as do drug companies. But most patients don’t buy their drugs or get a vaccine because of ads from the drug companies, but rather because of the advice of their physicians. Distrusting the drug companies because they make money by selling drugs is sort of like distrusting the tire manufacturers for selling you tires, or the paint people for selling paint, or … well, anyone for selling anything. Sure, the computer guy wants you to buy a more expensive computer, and sure, the grocery store wants you to buy more groceries. That doesn’t make people who sell tires or groceries evil or twisted. People who buy things should be wary of salesmen, but c’mon now. Just because a profit is involved doesn’t mean that drug companies are to be trusted less than any other company. If their product is good, you benefit, and they benefit, and everyone wins.

Profile #4: The Doctor Distruster

As I said, most people don’t buy medicines or get vaccines because of the promotional efforts of drug companies, but rather based on the recommendations of their physicians. But can physicians be trusted? Couldn’t we be but shills of the drug and vaccine manufacturers?

There are doctors who’ve accepted quite a bit of money from drug companies, as “experts” or “thought leaders.” Some of them travel around the country, giving talks to other doctors to convince them to use a certain drug or vaccine. I think this is a violation of the trust patients put in their physicians, and I won’t do it. Furthermore, the truth is that the vast majority of physicians are never offered such perks. We’re in the trenches, doing our work, and most of us just don’t attract that kind of fawning attention from the drug companies.

Is it possible that the pharmaceutical companies have fooled the doctors into blindly trusting their vaccines? I don’t think so. Most of us have seen diseases disappear once a vaccine is introduced, and most of us have seen vaccine-preventable diseases in unimmunized kids. Personally, I saw my last case of pneumococcal meningitis kill a patient of mine in 1996, right before the vaccine came out. I would prefer to never see that again.

Physicians as a group are intelligent and motivated—or we wouldn’t have made it this far. We’re certainly not monolithic, single-minded thinkers; many doctors harbor opinions of health issues that are far outside the mainstream. Yet with vaccinations, it’s only a very small handful of fringe doctors who are leery of established immunizations. There is a reason why so many pediatricians are so pro-vaccine.

It’s certainly not the money. Pediatricians actually lose money on some of the vaccines we give; for the majority of them, it’s pretty much a wash. They’re very expensive for us to buy and store, yet we do it because we know it’s best for our patients.

Looking at the trust issue from another angle: I have a mechanic I’ve known for years. When I bring him my car, he tells me what’s wrong, and I pay him to fix it. I know nothing about cars, and I seldom question his advice. Sure, if he suggested something really weird, I’d go elsewhere—but I’ve known him a long time, and he’s earned my trust. Likewise, I’ve seen my own patients for years and years. Parents ask for and want my advice on all sorts of things: feeding, sleeping, school issues, medical problems. I prescribe medications, and we talk about the side effects and risks and benefits, and we make our decisions. I would say that most patients trust my advice—or they’d find another pediatrician. Yet for some reason, for some families, vaccines seem to be a very separate issue. Sure, mom has trusted me as a source of information on everything else, yet immunization issues seem to be “off the table.” Mom would rather make vaccine decisions based on advice from random people she doesn’t know posting on the internet than based on information from me. Why am I perceived as an expert on health and childcare, but not as a trusted source of vaccine information? And if I can’t be trusted for that kind of advice, why are you depending on my judgment for anything else?

Profile #5: Paging Dr. Google

Everyone knows that the internet is a wild place. It’s full of all sorts of information, some great, some outdated, and some wildly misleading. No one believes that a Nigerian price wants to give you millions if you help him transfer assets, yet web sites that spread misleading lies about vaccines have somehow become a leading source of (mis)information for parents.

I’m going to google the word “vaccine” right now, and take a peek at the top 10 sites. I won’t provide links, because I can’t guarantee that any of the information is accurate, but here’s a quick summary of what I get:

• 5 sites with good, useful, dependable information—including information from the CDC and well-established medical sites.
• 2 news stories that more-or-less accurately talk about recent vaccine news. One of the stories has an odd sort of tangent including a brief interview with a well-known anti-vaccine propagandist, who plugs her usual misinformation (that’s irrelevant to the main point of the story, but it’s part of the standard boilerplate for some journalists to interview someone from the short-list of anti-vaccine spokespeople.)
• 3 sites retelling outlandish, truly bizarre misinformation. One strongly suggests that Americans should not get a flu vaccine because they contain squalene, a chemical that they claim caused Gulf War Syndrome. This is just a flat-out lie; there is no vaccine currently licensed in the USA, flu or otherwise, that contains squalene, which hasn’t been conclusively linked to any health problems anyway. The sites link and re-link to old, long-disproven canards based on tiny, unreproducible studies of questionable authenticity, with no effort whatsoever to present the best, most recent research. These sites explicitly state that I as a physician, in cahoots with government and big business, want to poison your child.

If you want good, accurate information that you can trust about vaccines, side effects, and actual real research into vaccine issues, try these sites first:

• The Centers for Disease Control
• The Immunization Action Coalition
• Children’s Hospital of Philadelphia vaccine information center
• Respectful Insolence, a blog that frequently discusses the efforts of the anti-vaccine lobby (this site can be a little salty, but it’s good reading and eye-opening.)

Profile #6: The alternative medicine believer

There isn’t an exact definition for “alternative medicine,” (a term I don’t like) beyond “things outside of mainstream medicine.” Most people feel they just know it when they see it. Because it encompasses such a broad array of philosophies and modalities, from acupuncture to chiropractic to massage to energy healing to prayer to herbal supplements to homeopathy, it doesn’t make a whole lot of sense to lump them all together. Nonetheless, some people feel that these sorts of “remedies” are better than what most doctors prescribe, and some alternative health devotees are suspicious of immunizations.

One argument is that the “natural” remedies of the world of alt-med are somehow better, or less dangerous. This doesn’t make a whole lot of sense—the small pox virus is natural; getting bitten by a tiger is natural; falling 60 feet out of a tree or building is natural. Burning and freezing and starvation and pestilence are as natural as can be. Potent poisons from jellyfish or tropical frogs are natural. Many mushrooms and plants are poisonous, and naturally occurring radiation from elements in the Earth and cosmic radiation cause plenty of cancers. There’s nothing inherently more safe about natural things than about “unnatural” things that come from a laboratory. Sure, medications have side effects, and some can be quite toxic—just like many natural plant products. In fact, if someone tells you they’ve got an herb or something with no toxic effects whatsoever, you ought to think again: any biologically active product, whether a medicine or something “natural”, is going to have multiple effects on a complex living organism. Some will be beneficial, some will be harmful. There’s no such thing as a medicine or herb with no side effects or potential for harm, unless that herb or medicine is 100% placebo.

Alt-med proponents also sometimes feel that manufacturers and businesses involved in alternative health products are more ethical or trustworthy than manufacturers of traditional medicines or vaccines. This is a completely unfounded opinion—just take a quick glance at a sampling of this week’s stories from the world of alternative medicine:

• The FDA has established a web site listing over a hundred bogus products to treat H1N1 influenza. The list currently has 136 (!) specific products, almost all of which are marketed to appeal to alternative-health consumers.
• Resveratrol is the latest product to be marketed heavily through national magazines as a product to reverse aging. There’s no magic cure for aging, despite what they’re trying to sell to you.
• A clinical trial was published looking at the “Gonzales Protocol” for treating pancreatic cancer with hundreds of supplement pills, coffee enemas, and a special diet. The treatment failed miserably—patients pursuing this alternative medicine approach died more quickly and had a poorer quality of life.

(These three examples were all taken from the last 2 weekly issues of Consumer Health Digest, a free listserv from Quackwatch and the National Council Against Health Fraud. You can sign up here.)

There have certainly been abuses and violations of trust from the world of conventional medicine, too. But as an unregulated industry, supplement and alternative health providers are more free to commit fraud and rely on questionable marketing tactics than traditional pharmaceutical and vaccine companies, whose products and advertising materials are tightly regulated.

There’s no logical reason to think that “natural” cures are safer, unless they’re just placebo. There’s plenty of evidence showing that alternative medicine companies are more likely to engage in shady marketing and business practices. Yet distrust of traditional medicine, including vaccinations, seems to be more common among users of alternative medicine modalities.

A very small number of alt-med proponents really goes to the extreme of non-scientific thought—they reject the very notion that infections cause disease, and thus reject all medical preventions and treatments for infection. These believers have a cult-like devotion to their ideas, and no amount of scientific evidence is going to sway them. Though from what I’ve seen few people really believe this, their web sites get plenty of hits from people looking for reliable vaccine information. The philosophy and background of people writing web pages isn’t always transparent, and some people with a vastly different worldview—one that many people would reject as ridiculous—are trying to sway your opinion. Beware the “yellow brick road” of alternative medicine, for far down that path are some truly bizarre beliefs.

Profile #7: Me, too!

This one frustrates me, but it seems to account for a big percentage of non-vaccinating parents. I ask why they’re reluctant to vaccinate, and the answer is something like “Well, a lot of my neighbors don’t,” or, “I heard that lots of people are scared of vaccines,” or, must frustrating of all, just “Well, you know.”

As momma used to say: “If your friends decide to jump off a bridge, are you going to jump too?”

There is a perception that vaccine refusal is a common phenomenon, though overall rates run in the 1-2% range (some individual communities are much higher, but that’s the usual quoted rate for most parts of the country.) The vast majority of parents get their kids immunized—but they don’t talk about it as much as the non-vaccinators. Refusing some or all vaccines is chic, and the people who do it like to talk about it. You might hear of neighbors who skip vaccines for their kids, but you can bet that you won’t hear about the majority of neighbors who get them on schedule. Don’t let the amount of noise made by anti-vaccine spokespeople hide the fact that they’re a very small minority.

Please, decide for yourself what’s best for your children. Rely on advice from people who know what they’re talking about, people who who’ve trusted for years for reliable health information. These decisions should not be made based on flippant whims and rumors.

Conclusion

Many pediatric practices have chosen to “ban” vaccine refusers from their practice. I can see their point of view—it takes a lot of extra time to talk with parents about these complex issues, and some parents become argumentative and, well, ugly about these things. Who wants a fight? The anti-vaccine lobby seems to create an endless stream of rumors and moving targets that are difficult to keep track of and continually swat back down. Besides, medical offices serve many patients with special health care needs, including newborns who are at special risk for vaccine-preventable diseases. Why put those kids at extra risk by allowing unvaccinated children nearby?

Countering this is my own philosophy, that it’s not the kids fault they’re not vaccinated; and with patience and continuous discussions, I can usually get even the most stubbornly misinformed parents to vaccinate. So finally, with a lot of extra work, the kids get protected. That’s my goal.

There should be no doubt that vaccines are very effective at preventing diseases, and are still necessary to prevent serious illnesses. Just one recent example: a study published in May, 2009 showed that unvaccinated kids were 23 times more likely to contract whooping cough than children who were fully vaccinated. Do not doubt that the diseases that are prevented by vaccines are themselves quite serious and sometimes deadly. There are certainly some side effects of vaccines, as there are with any medical intervention, and serious vaccine reactions, though very rare, do occur. In my judgment and that of every respected health care agency, world-wide, the benefits of vaccinations far ought weigh the risks. Please don’t fall for internet hysterics and unfounded rumors. Protect your kids, and make sure they’re fully vaccinated.

Further resources

An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All. From Wired magazine, 10/2009, about just how unhinged antivaccine groups have become, and how their unjustified influence could affect the health of your children.

A review by me of Paul Offit’s Autism’s False Prophets, a book that reviews the long history of anti-vaccine sentiment, and how a very small number of misguided and sometimes malicious characters have steered parts of the autism community to distrust doctors and shovel their money into pointless and sometimes dangerous quackery. The book also offers promising hope for further discovery into the causes and cures of autism.

John Stewart on the daily show with some humor to illustrate the rampant scaremongering that pervades media attention to vaccines.

From Science-Based Medicine, a very well-referenced resource reviewing all of the evidence and the history of the “controversy” regarding vaccines and autism.

Explore posts in the same categories: In the news, Medical problems

Tags: autism, H1N1, immunization, mercury, thimerosal, vaccine

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