Wednesday, December 4, 2013

The Costs of the Fight Against the HPV Vaccine

By Dorit Reiss

This post stems from an HPV thread on the Katie Couric show. When I joined it, was a series of heart-rending stories by parents about the harms they believe the HPV vaccines caused to their daughters. There’s not a lot you can say to stories like these that will not sound heartless and cruel. But, after reading some, I felt that I had to try and speak up. This decision resulted in me spending several hours a day, from the Wednesday before Thanksgiving and through the weekend, commenting and, especially, responding to comments.

The thread on the Katie website is still going strong. I concluded that rather than engaging further I should write a more systematic explanation of why we need to speak up and respond to the claims of harm made against this vaccine, however painful it might be to the parents commenting to hear someone say there is no evidence that the vaccine caused their daughters’ illnesses, and however unpleasant the discussion becomes. Because as real as the pain of these parents and daughters is, without objective evidence of causation, their belief that this vaccine is to blame does not justify rejecting it in the face of substantial scientific evidence supporting its safety.

Let’s start with the basics. The HPV vaccines prevent infection with several strains of a virus that, at worst, can cause cancer. The virus is responsible for nearly all the cervical cancers in the United States and for “90% of anal cancers, 40% of vulvar, vaginal, or penile cancers, and 12% of oral and pharyngeal cancers. (all data is available here.)

Most HPV infections clear up on their own. Infections can be detected and cancer prevented early with regular pap smears. But HPVis still responsible for tens of thousands of cancers a year and over three thousand deaths a year in the United States alone. Preventing those cancers and deaths seems like a good, important goal.

The vaccines were tested in clinical trials with over 30,000 women for over 7 years and found to have high rates of effectiveness and no serious problems. They cover strains responsible for a large percentage of those cancers. It has already reduced infections. You can find more in depth discussion of the HPV vaccines in a series of excellent posts by the Skeptical Raptor.

Why oppose something that can do so much good? Well, part of the opposition stems from religious objections having to do with a perceived connection between the vaccine and sex. But that was not what this battle was about.

Shortly after the vaccine came out, several parents of girls who suffered medical conditions or died claimed that the causes of their deaths or harm was the vaccine. The stories are both scary and heartrending. And as these stories became public, more parents heard them and started associating their daughters illnesses with the vaccine. I do not doubt the real suffering and distress of these families. My heart goes out to them. How can one not sympathize with a parent grieving because a 17-year-old girl is dead, or a teenager in constant pain? 

But feeling for hurting girls, and hurting families, does not mean that one uncritically accepts claims that the vaccine was the cause of their suffering. In fact, the causation claims behind these stories are often extremely problematic. Sometimes, even the temporal connection is weak (e.g. Gabi Swank developing symptoms weeks after the vaccine). The problem is that bad things happen to teenage girls regardless of the vaccine. They can suffer a variety of medical conditions, and sometimes, healthy teens do die. The question in each case like this is: do we have evidence that the vaccine caused the harm? And the answer in these cases is often no. These stories generally do not have medical evidence supporting the connection between the vaccine and the alleged harm. Nor do they suggest a plausible biological mechanism by which the vaccine could cause the harm.

Is there anything supporting them besides the parents belief in the harm? Well, a small number of studies looking at a tiny number of cases and conducted by anti-vaccine scientists supported the claims. Each of them when analyzed by scientists was found incredibly flawed. For example, this study by two anti-vaccine activists, looking at the deaths of two girls. This study, by a doctor, looking at one single case, ignoring other possible causes of the harm to the girl in question. Another study was addressed here.

In contrast, not only did the clinical trials – ongoing since at least 2001, covering tens of thousands of participants – not find serious risks, but two large studies addressing the question found none: A Kaiser study with almost 190,000 young women given 350,000 doses of the vaccine that compared harms in vaccinated women to the general rates in the population found no difference; and a Swedish study with hundreds of thousands young women comparing vaccinated and unvaccinated found similar rates.  Over forty million doses of the vaccine have been administered in the United States alone with no clear evidence of problems. Scientists’ best assessment is that the only side effect consistently connected with the vaccine is fainting on the day the vaccine is administered, and local reactions.  

This evidence paints a picture of a very safe vaccine. But the only way to make that point is to point out the weak evidence for the parents’ claims that the vaccine caused harm. This is bound to offend those parents: their belief in the evils of the vaccine is very strong, and they are may have difficulty considering that they may be wrong. In fact, they have been told in no uncertain terms that they are right. In the thread itself, they received support from anti-vaccine activists who rallied to their support, using the tried and true tactic of personal attacks on anyone speaking in support of the vaccine, accusing them of being heartless, shills, trolls, ignorant, Hitler, and so forth. I’m mentioning this as fair warning to parents who may want to jump in: this discussion is often conducted with high levels of vitriol (it’s even worse than French Revolution discussions; and people could be very passionate about the French Revolution).

Most pro-vaccine people do not enjoy dealing with vitriol or having their workplaces contacted, though I am sure there are some people who enjoy the conflict for conflict’s sake. And nobody that I know wants to hurt parents who have already been through so much with their suffering daughters, or who lost a child. But we are not going to stop speaking. And I think it is important for many of us to speak up about the HPV vaccines. It’s the same reason that you should speak up for vaccines generally, but let’s make it specific.

The grieving parents want us to accept their word that it was the vaccine that caused their daughters’ suffering. It is more than natural for them to look for a cause for their misfortune, and the vaccine is an easy target. But most of them have no medical evidence behind their belief the vaccine caused the harm. In some cases there are alternative explanations that their doctors pointed out. Explanations the parents, in their grief and pain, reject. The problem is that with these stories they want to convince other parents to reject the vaccine—that is, to choose not to protect their children against a virus that has been proven to cause cancer.

When that is what we are asked to do, a responsible parent not only can but should demand hard, credible data that the vaccine actually causes the alleged harm. Because there is a cost to not taking the vaccine. A cost in suffering and lives.
And there is no such hard evidence.

When it’s my child for whom I’m making the decision, rejecting a vaccine that can save him or her from needless suffering is a dereliction of duty. I owe my child the best protection available against dangers, health, and otherwise. There are too many things I can’t protect him against. But modern medicine offers a safe, effective prevention against some of the most dangerous types of HPV infections. My child deserves it.

There is a reason to speak up for the sake of these grieving parents, too: they do not deserve to feel guilty for vaccinating their children, or feel betrayed by the system, when the evidence does not indicate that the vaccine caused the illness. We should explain the evidence in the hope of reducing their guilt and anger. And hope some will listen.

Arguing for the safety of vaccines is worth the time and effort it takes, because it’s about our children, their health, and welfare. Vaccines protect them. They’re not perfect, and not 100% risk-free. No medicine is. But vaccines are remarkably effective and compared to pretty much every other drug we have, extremely safe.

So we need to keep asking, and pushing, and demanding. When a parent says the HPV vaccine harmed her child, we must ask for evidence that the harm came from the vaccine. Especially when the story is followed by a warning not to get the vaccine for your child. If someone asks you to leave your child unprotected against a dangerous virus that is completely preventable, tell him or her "I'm sorry, but I can’t make such a choice based on your belief, scientifically unsupported, that the vaccine hurt your child."

For my children’s best interests, I need to follow the data. I don’t want my child to become a cancer statistic.

Dorit Reiss is a professor of law at University of California. She has published writings on administrative law, and recently wrote "Compensating the Victims of Failure to Vaccinate: What are the Options?" Dorit is a member of Voices for Vaccines' Parent Advisory Board.

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