Missouri cancer survivor urges others to get HPV vaccine

November 9, 2018

FULTON, Mo. (AP) — Last summer, 56-year-old Scott Ward discovered a lump on the right side of his neck. His primary care physician told him to give it some time. After a month, Ward got a scan. And then a biopsy. It was throat cancer.

Human papillomavirus was determined to be the primary cause.

Cancer of the middle part of the throat, like the one Ward had, is now the most common HPV-related cancer, according to the Centers for Disease Control and Prevention. In 2015, there were 15,479 cases among men and 3,438 among women in the U.S. The virus is also associated with more than 90 percent of cervical and anal cancers, 70 percent of vaginal and vulvar cancers and more than 60 percent of penile cancers.

To help prevent HPV-related diseases in a broader age range, the Food and Drug Administration expanded its approval for the HPV vaccine for people ages 27 to 45 early last month. The expansion was based on studies of women and men ages 27 to 45 that showed the original Gardasil was highly effective in preventing malignancies related to virus strains covered by the vaccine. The latest version of the vaccine, Gardasil 9, protects people against nine strains of the virus that cause genital warts and the majority of HPV-related cancer and other diseases.

The vaccine was previously approved for preteens and young adults between the ages of 9 and 26, and the CDC has recommended vaccination for preteens and young adults since 2007.

By high school, many people have already been exposed to HPV. More than 60 percent of students will have been exposed by the end of their four years of college, said Mark Hunter, a gynecologic oncologist at Ellis Fischel Cancer Center. An estimated one in two American adults is currently infected with HPV.

Missouri’s HPV vaccination rate has been one of the lowest in the country. Health care professionals and advocates like Ward are sharing their experiences to combat the misperceptions and misinformation on the internet, including the myth that the vaccine causes serious side effects (it doesn’t).

Ward, who lives in Fulton and worked in construction, doesn’t know when he was infected with the virus, but he has probably carried it for decades. What he did know was that he would try everything to improve his chance of survival.

A couple of weeks after the diagnosis, he underwent six hours of surgery for removal of a malignant tonsil. Then, the doctor conducted a neck dissection and removed 22 lymph nodes, 14 of which were malignant. The operation left a scar from his chin through the right side of his neck, almost to his right ear.

That wasn’t even the hardest part. In the seven weeks after the surgery, he endured 32 rounds of radiation and three rounds of chemotherapy.

“They basically want to get you as close to death as they can to kill all your cells,” Ward said.

Fighting cancer became his new occupation. Every morning, he got dressed, got cleaned up and forced himself to eat through the pain. He got to know all the health care technicians who gave him chemo because he saw them every day.

By the end of January, the course of treatments had ended. Ward is now in his ninth month of remission. But the thin red line through half of his neck and the swelling under his chin are not the only reminders of his battle with cancer.

“I’ve got neuropathy in my fingers and my feet,” Ward said. “I’ve got dry mouth. I still only have partial taste. And if you ever lose your taste, it’s no fun and everything tastes terrible.”

If he could, he would get the HPV vaccine.

“My nurse told me there’s other strains of the HPV,” he said. “Even though you’ve gone through this, you’ve had treatment, then you’re good with this one, you could still get one of the others. So it would still help me if I was under the age of 45.”

Hunter, the gynecologic oncologist, said a lot of patients, nurses and staff are paying out of their own pocket to get the vaccine. He hopes insurance companies will soon cover the costs for people 27 to 45.

“If you’re an insurance company, and then you’ve prevented them from all the abnormal pap smears, from the biopsies, from the loop electrosurgical excision procedures that we do after the biopsy... If they can prevent all of that, it’s definitely a cost savings,” Hunter said.

Meanwhile, vaccination for adolescents in Missouri, which is covered by most insurance policies, isn’t happening in large numbers. In 2017, about 57 percent of 13- to 17-year-olds in Missouri had been given the first dose. Only about 40 percent of them are considered up to date.

One big reason for the low rate of complete vaccinations is a lack of awareness of the cancers HPV causes, said Sharon Humiston, a pediatrician affiliated with Children’s Mercy Kansas City. Because the HPV vaccine is not yet required for enrollment in Missouri schools, parents tend to think the vaccine isn’t important.

“Parents ask: ‘Is this really necessary? What are my kid’s chances of getting this disease, and if he gets it, is it really such a big deal?’” Humiston said.

People tend to undervalue prevention because they don’t see the outcome of vaccination, which is no disease, she said.

“For example, once there is not a lot of measles circulating in the community, it’s easy to think we don’t need the measles vaccine anymore,” Humiston said. “We forget that measles didn’t go extinct like a dinosaur; it’s only under control because of vaccination of almost everyone in the community.”

Boys and girls need to be vaccinated before exposure because the vaccine does not clear an HPV infection that is already established, Humiston said.

“My adolescent patient is more likely to have a serious health problem due to HPV than due to almost any other virus I’m trying to prevent with vaccination,” she said. “I cannot present this as an ‘optional’ vaccine — it’s a necessary vaccine if what I’m concerned about is health.”

Another reason some patients haven’t received the vaccine is because the pediatrician or family physician doesn’t bring it up, Humiston said.

“There are so many things that need to be covered in an adolescent visit, and the doctor may have figured, ‘Oh, this can wait until the next visit.’ But then there was no ‘next visit,’” Humiston said. “As adolescents get older, they are less and less likely to be seen in a primary care setting.”

To make matters worse, misinformation on the internet needlessly frightens parents. Some of the “information” that pops up is anecdotal and emotional, affecting people unconsciously.

“Fear is like purple ink — even a little bit stains everything in the laundry,” she said. “And it’s a lasting stain.”

Pediatrician John Wilson tries to keep up with the misinformation circulating in the anti-vaccine community, so he can deal with patients’ questions and doubts. What he sees is a few people making a lot of money via clickbait, books, films and speaking tours that stoke fear.

“A large part of it is selling supplements,” Wilson said, “They convince parents that if you’re not going to vaccinate, then you need to boost children’s immune systems in other ways, and that is through buying their supplements.”

Starting from Andrew Wakefield’s fraudulent study linking vaccines and autism in 1998, conspiracy theories about vaccine safety have been produced and rebutted, but they keep coming back, Wilson said. That’s in spite of the voluminous research that shows vaccines are safe and effective.

“We know more certainly what the risks from vaccines are than we know about the antibiotics that we use on a daily basis in kids,” Wilson said.

Before the three HPV vaccines were licensed by the FDA, each of them underwent years of testing through clinical trials, according to the CDC. Combined, the vaccines were studied in more than 74,000 men and women. The findings of the trials and subsequent studies show that the vaccine is safe and effective. The most common side effects include pain and redness in the area where the shot was given, and sometimes fever, dizziness, and nausea, which are usually mild and go away quickly.

And yet the facts aren’t enough to persuade a scared parent.

Victoria Shaffer, an MU associate professor at the psychological science department, studies how narratives affect health communication. She found that after reading stories about what other people perceive to be the negative outcomes associated with vaccines, people’s decision-making was affected — but they were unaware of it.

In one study, researchers gave participants data from the Vaccine Adverse Event Recording System, including some stories about bad things that happened to people who received vaccines. Although the participants said the stories weren’t convincing, they were affected by them, Shaffer said.

“The very act of hearing the stories changed their attitudes and made them more negative toward HPV vaccines. So even if you hear untrue stories, you can be influenced by them,” Shaffer said.

The use of narratives causes what decision psychologists refer to as “base rate neglect,” where people are more influenced by the vividness of the event than its likelihood of occurrence, Shaffer explained.

“We are storytellers and we collect our worldview based on the story we’ve experienced, and the stories that we’ve heard from others,” Shaffer said.

Shaffer said she and other researchers found it challenging to tell a positive story about vaccination, which is usually a nonevent.

“The hard part about that story is that HPV and the consequences of it are so far removed from the time window of vaccination,” Shaffer said. “There don’t exist a lot of stories about people who are like, ‘I love vaccines, I’ve never gotten sick.’”

The current low vaccination rate is shocking to Hunter, who treats women of all ages with HPV-related cancers on a daily basis. He sees women in their 30s or 40s come in with stage three or four cervical cancer, and most of them won’t survive the disease, he said.

“They’re going to leave behind young children,” Hunter said, “And these are diseases that could have been entirely prevented.”

Anywhere he has an audience, he usually gives a plug for vaccinating children with what is the first successful vaccination against cancer, Hunter said.

Hunter also served in an advisory capacity to the HPV vaccination program launched by the Ellis Fischel Cancer Center last year. University Hospital partnered with the Texas-based MD Anderson Cancer Center on the Moon Shots program, which aims to improve cancer prevention, early detection and treatment across the country.

Ward said he was very fortunate because the doctors caught his cancer early enough. He now tells his story to his family and friends. One of the misconceptions he has confronted is that a lot of people still don’t know that males need to be vaccinated.

“I talked to my neighbors,” Ward said, “She says ‘Boys? HPV?’”

“I said, you have got to talk to your doctor,” Ward said. “All I can do is tell you what I know, and the experience that I’m going through. This is what caused this, and I can tell you firsthand.”

“You get it, you know, you’re done. You don’t get it, you run the chance,” he said.

He won’t know for another five years whether he’s cured. Looking back, Ward wishes there had been an HPV vaccine for him when he was a kid.

“If there was a vaccine, I would (get it),” he said. “I myself would hope my parents would have wanted me to get it.”


Information from: Columbia Missourian, http://www.columbiamissourian.com

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