Trust Building

Why aren’t more parents vaccinating their kids?

Whooping cough has reached epidemic proportions in the state of California. And it is hard to know who to be the maddest at.

Should we be mad at the parents who refuse to have their children vaccinated? Or the scientists who have failed to communicate the safety of vaccines to these parents? Or the bacterium itself since it tends to follow a cycle and get worse every 2-5 years? Or the state of California for being too cheap to provide booster shots for 11 and 12 year olds? Or the insurance companies for refusing to adequately reimburse the cost of a vaccine? As you can see, there is plenty of blame to go around.

I can’t do anything about the bacterium itself and little or nothing about the last two. Penny-wise and pound-foolish seems to be the modus operandi of government and the insurance industry. But it seems like other scientists and I should be able to do something about the first two. The question is what…

The facts are out there. Vaccines are very safe and they do not cause autism. All the follow up studies have failed to find a link between autism and vaccines. And the doctor in the U.K. who published the original paper on the subject has had his license taken away because of the unethical way he did the original study.

There is some risk of adverse side effects from a vaccine but they tend to be small. For example, the whooping cough or pertussis vaccine can sometimes lead to severe side effects like shock or brain inflammation. These only happen 1 in 10,000 and less than I in one million respectively. These are much better odds than the 1 in 200 kids who died from whooping cough before the vaccine.

So why aren’t more parents vaccinating their kids? I have always thought that if people have the facts, then they will come to the “right” conclusion. But this is only true if someone can tell good facts from bad. And without training, this can be very difficult which means most folks need to trust the authorities who are reporting the facts. Unfortunately, as our UK doctor and countless others have shown, not all authorities can be trusted.

Chris Mooney is someone who thinks an awful lot about this stuff and in a recent Washington Post op-ed he concluded that, “…based upon my observation, vaccine skepticism seems closely connected to distrust of the pharmaceutical industry and of the federal government's medical research establishment.” What this means is that the facts are out there and the people who don’t vaccinate their kids know about them, they just don’t trust the folks who did the work.

So we don’t necessarily need more facts or getting the facts out there more comprehensively. We need some out-of-the-box thinking to get around this impasse. Here are three possibilities off the top of my head (note that I didn’t even try to come up with a way to gain trust in the pharmaceutical industry):

1) Build up trust in government agencies

2) Circumvent government agencies by creating new scientifically reliable nongovernmental study groups

3) Increase the public’s scientific literacy

Of the three, the best short term solution is probably to create some reliable alternative to government agencies on controversial sorts of issues like vaccinations. Perhaps something like the Bill and Melinda Gates Foundation could fund a group who would try to build consensus on the need for vaccinations and their relative safety compared to the diseases they protect us from. The group would include people opposed to vaccines like Jenny McCarthy, parents whose children have died from whooping cough, scientists with no stake in the discussion, etc.

Maybe these people get together and start the discussion with the fact that, “In 1920 prior to the development of the ‘DPT’ vaccine, one in 200 children died of whooping cough.” Then they propose ways to solve this problem.

Most likely the solution will be vaccines but who knows, maybe people can come up with something better. If vaccines end up as the solution, then the next step is to figure out how to get more buy in for vaccination. Find out why people aren’t getting vaccinated and then build studies or policy suggestions around that.

If people think kids get too many vaccines too close together, then maybe alternative vaccination strategies should be made available. Maybe some people just get vaccines to the real killers and vaccines like chicken pox and maybe even the measles become optional. Would this get more people on board? Would this provide adequate safety for the public?

Also find out what scientific studies this group wants done and by whom to show that vaccines do not cause autism. Then fund those studies and have people that Jenny McCarthy trusts to do the studies. The study would obviously need to be done by someone qualified to conduct such a study but still, get everyone as involved as possible.

Maybe we could push the pharmaceutical industry to create even safer vaccines. Or maybe have nongovernmental organization make the vaccine instead. If we have Pharma do it, then we’ll have to give them incentives. More profits (since profits on vaccines tend to be mighty low) or maybe some protection from lawsuits.

Anyway, the take home message here is that unlike Joe Friday, most people need more than just the facts. They need for the facts to come from someone they trust.

Here's a recent Forum discussion of the whooping cough epidemic.

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  • http://www.blogher.com/blog/shannon-des-roches-rosa Shannon

    Excellent article, and thank you for writing it.

    Another issue is that most U.S. residents of child-bearing age do not have personal experience with whooping cough, and it remains a theoretical risk — much like polio, measles, etc.

    I also recently participated in a conference call on pertussis/whooping cough that was arranged by the folks from Every Child By Two. We spoke with Dr. Ari Brown, an prominent supporter of vaccinations, and Danielle Romaguera (http://www.pkids.org/dis_pert_familystories.php#romaguera) whose infant daughter died from pertussis. From that call, I learned that:

    1) Adults often don't recognize pertussis symptoms as it can present as a persistent but non-"whooping" cough
    2) Parents don't recognize pertussis in infants because it presents as apnea
    3) Immunity (natural or through immunization) only lasts ten years and'
    4) It is *extremely* communicable.

    So it is important for any adult or child who is even thinking about coming into contact with an new baby to be fully vaccinated, because newborns are the most vulnerable to the disease yet have no immunity.

    More info: http://www.helppreventwhoopingcough.com

    I also co-founded and co-edit a project in keeping with the spirit of your trust-building suggestion, called The Thinking Person's Guide to Autism, (http://thinkingautismguide.blogspot.com), with the goal of giving parents the best information possible with which to make decisions about their children's health, including vaccinations. It will include an updated version of an essay I wrote for BlogHer.com called "My Child Has Autism and I Vaccinate," about how I was initially hoodwinked by the antivaccinationists, because they yelled the loudest, but have since sided with evidence and science:

    http://www.blogher.com/my-child-has-autism-and-i-vaccinate

    Again, my thanks.

  • http://lizditz.typepad.com/ Liz Ditz

    Dear Dr. Starr,

    Thank you for this article.

    However, I fear that you (and Chris Mooney) put a touching but misguided faith in the ability of trusting discussion to change the behavior of dedicated anti-vaccinationists. See the exchange at a recent Alphabet Kids post, in which a anti-vaccinationist claims that the pertussis vaccine has killed more children than the disease itself.

  • http://lizditz.typepad.com/ Liz Ditz

    I clicked "submit" too soon.

    I suspect adults' ignorance of the availability of an adult vaccine (TDAP) is contributing to the current epidemic. Davis Liu, M.D., also blames doctors for…being behind the times in terms of urging adult patients to be vaccinated.

    The article in Palo Alto Online reports that nearly 50% of infants with the disease acquire it frm their parents, and that many adults who have pertussis don't know it, confusing the disease with asthma or bronchitis.

    So upping adult vaccination rates is key.

  • paige

    Dear Dr. Starr,

    I appreciate your rational approach to the situation and I appreciate your scientific approach, but since I do, I'm curious about the statistic that "before 1920, Pertussis killed 1 in 200". Although you cite a reference, your reference provides no source.

    Before 1920, many diseases had a much higher mortality rate, and many of those rates have dropped precipitously without the use of vaccines (Scarlet Fever, Typhoid, pneumonia, tuberculosis) or were already dropping before vaccines were introduced (measles, diptheria), due to improved sanitation and water treatment. We have to be careful how much we credit the vaccines for the drops in those diseases and mortality from them.

    (http://childhealthsafety.wordpress.com/graphs/#Meas_ScarlFev_etc

    So, in terms of trust building, what should we do to rebuild trust that pharmaceutical industries are not merely operating for profit, and to ensure that our governmental agencies are really overseeing our safety, rather than their profits? Currently, laws protect those companies from litigation, and turn the costs for vaccine damage back to the taxpayer, so should we do something about that system to better ensure our safety?

    Thanks for your thoughts.
    Paige

  • http://www.thetech.org/genetics/index.php Barry Starr

    What great comments. I'll try to address some of the points but if I miss something, let me know.

    Shannon: What a great blog you've written on the subject. You give people in the public health community hope. Also thanks for the added info on whooping cough. My blog was already getting too long so I couldn't include it.

    Liz: Misguided seems strong. Perhaps naive or hopeful might be better. The building trust possibility was just one of three I thought of and it certainly won't work for everyone. Some people won't be convinced but some will. We need to find ways to reach the people who can have their minds changed and find how to change them.

    Paige: Thanks for calling me out on my sourcing. My main point was that a whole lot more kids would die of whooping cough without a vaccine than would die from the vaccine itself. The data you show suggests that the numbers wouldn't be as high as 1920 but it certainly wouldn't fall to 0. And again almost certainly more than currently die from vaccine side effects.

    As for profits, I remember when I was working in biotech we routinely refused to work on vaccines because the profit margin was so thin and the threat of litigation so high. Perhaps the NIH should set up a vaccine department and should be in charge of making and testing the vaccines themselves. Or some nonprofit instead.

  • http://www.thetech.org/genetics/index.php Barry Starr

    Paige: A careful look at the data shows a big drop off in the 1930's and 1940's. This is of course the same time as the Great Depression and World War 2. I wonder what reporting was like back then? Also, were people less crowded as they fled cities in WW2 and headed into the countryside? This might explain a drop off in communicable diseases like happened during the plague in Europe where the wealthy escaped the disease by getting out of the cities. Do you know of a careful analysis of the data?