Jessica Saxe was a 30-year-old new mom, looking forward to having more children when the news came like a thunderclap — she had cervical cancer and would need to have her uterus removed.
Saxe of Bardstown was devastated, not only because cervical cancer can be deadly but because her son, Charlie, was only 9 months old at the time.
As he tottered around the living room, she thought: “I don’t know if I’m going to live to see him walk. … I don’t know if he will remember me,” she recalled, her voice breaking. “That was the hardest part as a mother, knowing that I might not be able to be there for my son.”
Saxe, whose son is now 6, recounted her traumatic experience last week in Louisville to drive home the importance of getting vaccinated against the sexually transmitted human papillomavirus (HPV).
The meeting at the Norton Healthcare Learning Center is part of a statewide effort by the American Cancer Society and partners, including the Kentucky Department for Public Health and various health systems, to promote HPV vaccines to prevent cervical cancer and genital warts.
The cancer society is traveling around the state for the next few months, working with coalitions and bringing stakeholders together, to change the fact that HPV vaccines are underused in Kentucky (and nationally) despite a high cancer burden in the Bluegrass. HPV can cause throat cancer as well as cancers of the vagina, vulva, penis and anus.
“Kentucky has the highest cancer burden for HPV-related cancers in the nation, so morally we have to” take action, said Elizabeth Holtsclaw, the state and primary care systems manager for ACS. She was explaining why the group had gathered health care providers and others in Louisville.
“We decided we needed to empower each region,” she said, and “the leaders within that community are stepping up to say, ‘Yes, we’re in.’ ”
In 2017, about 38 percent of Kentucky youths ages 13 to 17 were up-to-date on HPV vaccination, meaning they’d received the full series of doses, according to the CDC, which is providing funding for the cancer society meetings. That was up from 34 percent in 2016 but still below the U.S. rate of nearly 49 percent in 2017.
In Kentucky, “our goal is to increase vaccine rates by 8 percent within the next 12 months,” Holtsclaw said.
The vaccine is a safe and effective way to protect against the HPV virus, health officials say, but can be a tricky sell to parents, who may think it’s unnecessary or will send the wrong signal to their preteen children.
“Part of it is nobody wants to admit that this 12-year-old is ever going to have sex, which is a fantasy,” said Connie White, senior deputy commissioner for the Kentucky Department for Public Health. “And part of it is accessibility, so doctors carrying it in their offices.”
Also, health care providers, as a whole, don’t seem to be promoting the vaccine strongly enough, some say.
“Somehow, we are treating the HPV vaccine as an ‘other,’ ” Holtsclaw said. “Whether it’s because it’s not mandatory, we don’t know. But other states are doing all right without a mandate. … The doctor needs to feel comfortable and confident making that strong recommendation.”
It’s recommended that children receive two doses of HPV vaccine at least six months apart, starting at 11 or 12, while youths age 15 and older would get three doses, but patients don’t always come back for a repeat visit.
“We need to improve on the first dose and greatly improve on the second dose,” White said. “… The majority of people only need the two doses.”
HPV vaccines can be given as early as 9, White said, “but it’s definitely recommended at 11 to 12 because that’s when you get your other vaccines, so you can go ahead and get them all at the same time.”
Another reason for getting the vaccine when young is that the series is supposed to be given before exposure to HPV, so ideally, before the person becomes sexually active, according to the CDC. The health agency notes that HPV vaccination could prevent 90 percent or about 31,000 cases of HPV-related cancers from developing in the United States each year.
“It’s a cancer vaccine; it’s not a sex vaccine,” Saxe said.
Like all vaccines, HPV vaccines do have potential side effects, though, such as pain, redness or arm swelling where the shot was given, fever, headache or tiredness and nausea.
At the ACS event, University of Louisville Professor Scott LaJoie offered advice to health care providers about how to effectively approach families. U.S. Department of Health and Human Services official Tammy Beckham also was there to support the effort.
“It’s important for us to get out and talk about not only what HHS is doing but learn what we can do to support the states and the regions in their efforts to increase HPV vaccination rates,” said Beckham, director of the Office of Infectious Disease and HIV/AIDS Policy at HHS. “…We need to be able to collaborate and bring all these groups together, so together we can tackle this issue and protect our children.”
Along with expert speakers, the Louisville meeting included the assembling of work groups to identify two to three measurable things they can do to improve the rates.
White said that having prompts in electronic health records to remind health care providers to talk to families about the vaccine can be helpful.
Saxe, who recently had a second child with the help of a surrogate, said it’s critical for cancer survivors to share their stories to help persuade more people to get their children vaccinated and prevent other women from getting cervical cancer.
“We can stop this, but we can’t do it alone,” she said. “… We need the doctors and the nurses and the pharmacists. We need the people in public health. We need policymakers. We need you guys to stand with us on this. We need you to make this a priority.”
More information about HPV vaccine and cervical cancer will be available at a June 23 event called the Women’s Wellness Kickoff at the Louisville Central Community Center, 1300 W. Muhammad Ali Blvd. Event and registration information is available at eventbrite.com.