By Dorit Reiss
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
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.
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.)
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.
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:? 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.
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
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
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).
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.
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.
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
there is no such hard evidence.
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.
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,
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."
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.