By Emily Williams-Robertshaw
Alabama tops the country for cervical cancer deaths and comes in third for the rate of cervical cancer diagnosed in patients, according to a new, Birmingham-based nonprofit organization, Vax 2 Stop Cancer.
Organization founder and Executive Director Barbara Schuler believes those numbers can be lowered significantly. It all starts with a vaccine.
According to the American Cancer Society, 99.9% of all cervical cancer cases are caused by human papillomavirus, or HPV, a sexually transmitted disease that infects both men and women.
HPV is so common that nearly all sexually active men and women get the virus at some point in their lives, the Centers for Disease Control and Prevention notes.
“It’s as common as the common cold,” Schuler said.
She and her board members founded Vax 2 Stop this year to provide information about HPV and the vaccine that controls it to doctors and to parents in an effort to increase vaccination rates.
HPV can be symptom-free, and infections, for the most part, resolve within two years. But for some people, the infections remain as abnormal cells in the body and cause the development of cancers.
In women, HPV can cause cervical, vaginal and vulvar cancer. In men, it can cause penile cancer. In both men and women, it can result in anal or oropharyngeal cancer.
The good news is that, since 2006, a vaccine has been available that protects against cancer-causing strains of HPV. It is more than 90% effective when taken at the recommended age of 11 to 12 years.
But only 21% of Alabamians are vaccinated. Vax 2 Stop is on a mission to raise that number.
Had the vaccine been available when Tracie Richter was an adolescent, her adult life may have been vastly different.
Richter, an advocate for Vax 2 Stop and member of the cervical cancer survivor support community Cervivor, was first diagnosed with Stage I cervical cancer at 27.
Richter and her husband were busy raising two sons – one 3 years old and another 5 months old – when she received her diagnosis. It was the night before Thanksgiving.
The family’s plans for the future changed immediately. Plans for a third child were pushed to the side as she underwent treatment, including an abdominal radical hysterectomy and lymph node removal.
“It took me a while to get to a place where I felt like I could share my story,” Richter said. She found strength through the Cervivor community, where she was able to connect with other survivors.
“It’s easy to find a cancer survivor, of course, but if you find someone who is in a similar stage of life as you with the same cancer diagnosis as you, it makes a huge difference,” Richter said. “I didn’t have that during my first diagnosis and my first surgical treatment. Looking back, that would have been so helpful.”
After three years in remission, Richter experienced a recurrence. During her treatment, she had chemotherapy treatments as well as internal and external radiation.
In the three years she now has been clear of cancer, Richter has amped up her efforts to give back to the cervical cancer community.
“Through Cervivor, I started working with the Society of Gynecologic Oncology,” she said, participating in one of the organization’s lobby days in Washington, D.C.
She was later connected with Schuler and Vax 2 Stop through the UAB Division of the Gynecologic Oncology Director Dr. Warner Huh, also president of the Society of Gynecologic Oncology. Among his many accomplishments, Huh was among the first oncologists to test Gardasil as an HPV vaccine.
Richter said she was more than ready to join the Vax 2 Stop mission, not only as a cancer survivor and advocate, but as a mother to two young boys who are nearing their vaccination age.
“I’m so drawn to getting reliable and accurate information out into the public about the vaccine,” she said. “My boys are 7 and 10. Many people don’t realize that boys need to be vaccinated, too.
Her advice to parents seeking more information is to make sure what you are reading is reliable medical information. If you aren’t sure the sources are reliable, ask your doctor.
“Just be open with your doctor,” she said. “Talk with your doctor about any concerns you have about the way you are feeling.”
Cultivating an open relationship with your general practitioner is something about which Richter is passionate. She wonders how they can help you if they do not know how you are truly feeling.
Richter is celebrating Cervical Cancer Awareness Month, in January, by reminding women to stay on top of their wellness visits.
“It’s extra hard right now during a pandemic,” she said. “There are so many people who have not gone for their pap test, but it is so important to have those yearly visits.
“Stay in tune with your body, don’t be afraid to talk to your doctor and, please, show up for those annual visits,” she said.
Despite a year filled with disruption and health and safety concerns surrounding the pandemic, Schuler and her board members were able to create and launch Vax 2 Stop Cancer.
“I never thought we would accomplish all that we have accomplished this year,” she said.
The organization received six grants in 2020, starting with Blue Cross Blue Shield.
“Blue Cross is extremely aware of this epidemic,” Schuler said. “They have been working on this issue and have not had great results, because the vaccination rate is so low.”
When the Vax 2 Stop team presented its mission and plan, the company was on board.
“When you have somebody like Blue Cross supporting you, it’s really easy for the others to jump on board.” she said.
It led to recognition and support from other national companies and organizations, such as the Prevent Cancer Foundation.
“They had never given a grant to the state of Alabama,” she said. “It knocked me off of my feet. I was so humbled by that.”
Schuler believes that one of the big reasons parents don’t choose to have their children vaccinated is because they don’t believe their child needs it, especially the boys.
“The vaccine is recommended for ages 11 to 12,” Schuler said. People can get the vaccine as young as age 9 and up to 26, but that is when it is most effective and builds the most immunity. In fact, Schuler noted that a recent study stated that people up to age 45 can get at least some small benefit from it.
When given at the correct age, it is typically administered by a doctor at the same time as a Tdap vaccine – which protects against tetanus, diphtheria and pertussis – and the meningococcal vaccine.
Both vaccines have a much higher rate of usage than does the HPV vaccine, according to data Schuler pulled from the Alabama Department of Public Health. Tdap has a 71% usage rate and is required for school, while the meningococcal vaccine has a 58% usage rate.
The vaccination rate for HPV is 21%.
“There are layers of problems that contribute to the low rate,” Schuler said. Parents think their kids don’t need it, they don’t think their kids are having sex.”
Many parents find it hard to imagine their child contracting a sexually transmitted disease. Additionally, the vaccine receives a large amount of criticism due to misinformation.
“This is FDA-approved,” Schuler said. “It’s safe, effective and it’s one of the most highly studied vaccines available.”
Schuler’s own sons never received the vaccine.
“I didn’t know about it,” she said. “The pediatrician wasn’t calling me about it, so we just didn’t know.”
It doesn’t help that the vaccine fights a disease that could show up so many years in the future.
“If it was a breast cancer vaccine, prostate cancer or what have you that is more widely talked about, people would line their kids up around the block,” Schuler said. “This is something that they are vaccinated for that they usually wouldn’t get until decades later.
Schuler doesn’t fault pediatricians for lack of awareness. Pediatricians and general practitioners have a lot on their plates, she said.
Through Vax 2 Stop, Schuler and board members are working to equip internists with the information they need to tell their patients about the importance of the HPV vaccine.
The organization was inspired by Schuler’s recent work with the Alabama Department of Public Health. The ADPH conducted a program to raise HPV vaccination rates, working with 50 practices across the state to train doctors on ways to effectively recommend the vaccine.
“We’ve seen their rates come up almost 10%, which was the goal,” Schuler said. “Some of them didn’t quite make it and others surpassed the goal, but we’ve made a huge dent with those 50 practices and brought over that experience.”
In the ADPH’s program, 10 pediatricians each mentored five practices.
“My program is that we are working with 14 pediatric or family medicine practices,” she said.
Guided by a program developed by the Gillings School of Public Health at the University of North Carolina, Vax 2 Stop provides doctors with cards that showcase how to impart vaccine information and answer parents’ questions.
“One of the biggest things about this program is that it has made doctors feel more confident in their recommendations, which is all they really needed,” Schuler said.
With the new non-profit, Schuler also is working on social media campaigns to raise awareness and combat the spread of false information on platforms such as Facebook and Instagram.
“We’re trying to reach 500,000 people in Alabama through social media so that they understand the importance of (the vaccine), the efficacy of it and the safety of the vaccine – parents, adolescents, just general public.”
For more information, visit vax2stopcancer.org.