Cervical cancer is one of the most common cancers among women worldwide, killing hundreds of thousands of people every year. But the disease is shrouded in stigma and silence that could be impacting the search for a cure — and endangering patients’ lives.
In the U.S. alone, about 11,500 people are diagnosed with cervical cancer and 4,000 people die from the disease each year, according to the Centers for Disease Control and Prevention (CDC).
And Jennifer Young Pierce, a gynecologic oncologist at the University of South Alabama, told The Hill that more women run the risk of developing cervical cancer than those numbers let on.
Most cases of cervical cancer are caused by the human papillomavirus (HPV), a sexually transmitted disease that roughly 85 percent of people contract over the course of their lives, per the CDC. About 13 million people in the U.S. are infected with HPV every year.
HPV can also lead to cervical dysplasia, or abnormal cell growth on the surface of the cervix, which can turn into cancer if it’s left untreated.
There are about 200,000 cases of pre-cervical cancer in the U.S. a year, meaning that one in six women in the U.S. will be diagnosed with precancerous material in their cervix at some point in their life, Pierce said.
“Breast cancer is one in seven,” she said. “If you know somebody who has had breast cancer then you know somebody who’s had cervical cancer or precancer.”
Pierce explained that every person who has received an abnormal pap smear result and subsequently had to have abnormal cells burned, frozen or lasered off their cervix or uterus has had a brush with cervical cancer.
“We all know somebody who has literally almost died of cervical cancer, and if they lived in a developing country, would have died of cervical cancer,” she said. “It’s just that nobody’s talking about it.”
If caught early, cervical cancer has a very high five-year survival rate — more than 90 percent. But that rate drops precipitously to 19 percent once the disease touches distant organs in the body, according to the American Cancer Society.
Research on the disease is underfunded in the U.S. compared to other similarly deadly diseases, however.
Cancers that primarily affect women receive less research funding than those that affect men in general. In a 2019 study, researchers found that gynecological cancers like ovarian, cervical and uterine cancers received some of the smallest amounts of research funding proportional to their lethality, while prostate cancer received the largest amount.
Cancer experts told The Hill that research toward cervical cancer prevention and treatment receives less funding compared to other diseases for three main reasons: low late-stage survival rates, ignorance of how prevalent the disease is and stigma surrounding it.
Cervical cancer’s low late-stage survival rate means that there are fewer survivors of the disease to advocate for funding compared to some other cancers, Rebecca Perkins, a professor of obstetrics and gynecology at Boston University Chobanian and Avedisian School of Medicine, told The Hill.
And the high success rate of treatment for earlier-stage cervical cancer or precancer could be contributing to the silence surrounding the disease as well, she said.
Those with precancer may not feel the need to discuss the disease because they feel that current screening and treatment systems are working well, Perkins wrote.
There is also a social stigma around cervical cancer because of its relationship to HPV. Many people mistakenly believe that people who contract HPV must have taken part in risky behavior like having sex with multiple partners without protection.
Stigma around the disease discourages patients and survivors from talking about their experiences, which can lead to reduced funding for new preventative measures or a cure.
“This contributes to a much smaller number of legislative actions, fundraising activities, etc. That we have for cervical cancer compared to, for example, breast cancer,” Perkins wrote in an email.
Kimberly Williams, 49, learned first-hand how that stigma can shame women into silence after she was diagnosed with cervical cancer in 2018. A close friend of Williams called the cancer “a nasty woman’s disease” after she confided in them about her diagnosis.
“I was hurt, I didn’t understand what I did to deserve this,” she said adding that the friend made her feel as if her diagnosis was somehow connected to how many sexual partners she had.
Nine out of 10 types of cervical cancer are caused by HPV, which is passed mainly among sexual partners. But people can contract the virus even if they are with the same partner for years, in part because symptoms of the disease can sometimes take years to show up.
“It became difficult to talk about cervical cancer because it was a ‘sex’ disease,” Williams wrote in a text to The Hill. “I was married at the time … I felt ashamed because it was like ‘what did you do’ or ‘who were you with.’”
The lack of discussion and awareness surrounding cervical cancer can get in the way of the early detection crucial for preventing or effectively treating the disease.
Cervical cancer screenings are one of the most effective ways of preventing cervical cancer, but screening rates have been steadily declining and dropped sharply during the COVID-19 pandemic.
While it’s not totally clear why screening rates are falling, one 2022 study found that the most common reason women skipped a cervical cancer screening was because they didn’t know they needed one.
People with any connection to cervical cancer should share their stories to help change the culture of silence around the disease, health experts said.
They say doing so could help convey to those in power just how many people are still at risk of developing the disease, which could in turn potentially increase interest in boosting screenings to catch it early and inspire more funding to develop better treatments for the disease.
“If we do this right, making sure that everyone gets screened and treated when they need to,” said Perkins, “we can essentially end cervical cancer in the United States.”