Kristen Forbes graduated from Indiana University Purdue University in 2007 with a degree in business. She had a job right out of school and she was excited about starting her life on her own.
“Four weeks after graduation, her right ankle swelled up. That’s when the journey and the fight began with cervical cancer,” her father, Kirk Forbes, says.
“We buried her a year later in June 1, 2008. She had multiple surgeries, she had chemo, she had several types of radiation. But it was so advanced, it was stage 3C when they first diagnosed it. So even if we didn’t want to admit to it, that the survival rate for that is very small,” he says.
Three months after Kristen’s death, the U.S. Food and Drug Administration approved the vaccine Gardasil a second time – for the prevention of human papillomavirus, or HPV. HPV causes 70 percent of cervical cancers and has recently been linked to some types of oral cancer.
“We found out very few people know anything about the HPV illness itself,” Forbes says. “Very few knew the connection to cervical cancers, and very few knew that there was a vaccine for it in a safe form.”
In 2012, Indiana’s HPV vaccination rate among teenage girls was 35 percent. That’s low compared to the rate of other vaccinations. With other vaccines such as the Tdap vaccine – or tetanus, diptheria and pertussis – Indiana even surpasses the national average, at 94 percent.
What’s Causing The Low Rate Of Vaccination
So the question is, why are the HPV vaccination numbers so low in Indiana seven years after it was approved?
One factor is easy to point to. Indiana University pediatrics professor Gregory Zimet says that unlike the Tdap vaccine, the HPV vaccine is not mandated for public school attendance and a lot of parents might not know it exists.
“Of parents who don’t have their sons or daughters vaccinated, there’s a certain proportion where it’s really merely because it hasn’t been recommended by the healthcare provider,” Zimet says. “So they’re not anti-vaccine or concerned about HPV vaccine so much as it hasn’t been recommended. That’s actually probably the largest proportion of parents whose children have not been vaccinated.”
Zimet and Forbes also say that expense and convenience can be barriers: you need three doses of Gardasil to have immunity, and it runs about $130 per dose. Cervarix, another HPV vaccine, only requires one dose, but it’s still more than $100.
How are doctors and clinics dealing with this? Public health nurse Jane Keyes says the Vigo County health clinic has greatly improved its completion rates for all three doses of Gardasil by sending out postcards and phone call reminders to parents before each appointment.
“The importance of it is, when you say it like it prevents cervical cancer, and you tell them the facts, the truth, then they’re more adamant about getting it done,” Keyes says.
The clinic is also covered by the CDC’s Vaccines For Children program, which defrays the high cost of the HPV vaccine for patients who are on Medicaid or underinsured.
Cost and lack of awareness paint only part of the picture, however. Some critics have raised the fear that the vaccination for HPV, which is a sexually transmitted disease, could increase promiscuity among teenagers. Several studies have since debunked that assertion.
Groups Question Possible Vaccine Side Effects
And then there’s the question about the vaccine’s safety. Karmen Wagler is a nurse and a volunteer with the Indiana Coalition for Vaccine Choice.
“In my opinion, when we’re dealing with vaccines, with the known risk of death, permanent disability, I can’t guarantee you if I were to give you an HPV injection today, that you would not be the one that will die from that. I can’t guarantee you that,” Wager says.
She says the ICVC isn’t simply anti-vaccine, like some other organizations. The group’s members are concerned about safety and full disclosure of any problems with the drugs. For an example, she points to the Vaccine Adverse Events Reporting System run by the CDC.
“I would say last time I looked, over 10,000 adverse events other than death reported associated with the HPV vaccine,” Wagler says.
Language on the VAERS website cautions that a report does not prove a vaccine caused the adverse event – the CDC encourages patients and doctors to report any bad reactions around the time of a vaccination, regardless of cause.
Scientists continue to publish studies and research on the side effects and long-term effects of the HPV vaccine. Zimet says a recent study in Denmark of almost a million teenage girls found only 53 reported adverse events, and then concluded that those events weren’t linked to the vaccine.
“I hope people realize is that it’s really important that when if comes to policy, health policy, the practice of healthcare, that we don’t base that on individual stories, but we base that on a lot of individual stories,” Zimet says. “In other words, is HPV vaccine dangerous? Well, let’s see, let’s do research to figure that out.”
Indiana’s vaccination rate is actually higher than in previous years, and advocates like Kirk Forbes are optimistic that those will keep increasing. Forbes has started a foundation in his daughter’s name dedicated to educating doctors and parents about the HPV vaccine.
“If someone came to me and said, we have a vaccine that will protect your child from cancer, would you like it? Absolutely,” Forbes says. “No matter what cancer it is, if someone said we have a vaccine for any particular cancer – absolutely, absolutely.”
Recent research has actually shown that one dose of Gardasil may be enough to give immunity, instead of the recommended three. The FDA has also recently approved the vaccine to be administered to boys, who can be carriers of HPV as well.