HPV and Cervical Cancer: Asian Americans Face Cultural Stigma and Misleading Data
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When Joslyn Chaiprasert-Paguio was 18, her mother signed her up for a life insurance policy. One of the requirements was to get a pap smear. That was a first for her, as Chaiprasert-Paguio had never been to the gynecologist, and all of her knowledge of reproductive health came from one long anatomy conversation her mom had with her after hitting puberty.
“Growing up in a very traditional Chinese [and Thai] household, it was very quiet,” Chaiprasert-Paguio, now 39, explains. In her Asian community in San Gabriel Valley, it wasn’t appropriate to talk about sex, or anything below the belt at all, she says.
So, when her pap smear came back positive for human papillomavirus (HPV), she was shocked and confused. She had never even heard of the sexually transmitted infection (STI).
“When I first was diagnosed with HPV my first question was: How did I get this? Is it contagious? Could I pass it off to my boyfriend at the time?” Chaiprasert-Paguio says. After doing her own research, she became concerned about what strain of HPV she had, and whether it could lead to cervical cancer.
“[The doctor] kept insisting that HPV is common and would go away on its own. I felt very dismissed because she did not educate me or address any of my questions,” she says.
The body’s immune system is often able to beat back low-grade HPV, and eventually shed it from the cervix. But the reality for Chaiprasert-Paguio was that she had a high-risk strain, CIN3 — also known as severe cervical dysplasia, where abnormal cells are affecting more than two-thirds of the epithelium. As a result, CIN3 has a higher chance of persisting and growing into cervical cancer, according to a study published in 2020 in Gynecologic Oncology.
Low HPV Vaccination Rates Are Common in Asian Communities
Another factor contributing to her risk was the fact that Chaiprasert-Paguio hadn’t been vaccinated for HPV. The HPV vaccine is effective at protecting against nine common strains of HPV, but it was not introduced until 2006, four years after she was diagnosed.
Low vaccination rates remain an issue in the community. According to the Centers for Disease Control and Prevention (CDC) 2022 National Immunization Survey of over 16,000 teens, the HPV vaccination rate among Asian kids hovers around 50 percent.
One issue is that Asian American parents often shy away from talking about sex and STIs with their kids. “There is a stigma because it’s considered a sexually transmissible disease,” says Moon S. Chen Jr., MPH, PhD, a professor in the division of hematology and oncology at UC Davis in California. “Especially among Asian adults, there’s a taboo related to discussing that.”
Another challenge Asian Americans might face is the language barrier between parent and child — where the first generation immigrant parent may speak only limited English — making it even more difficult to discuss medical topics. When Chaiprasert-Paguio tried to explain the diagnosis to her Thai mom, words failed her. “I didn’t even know what the cervix was until I had cervical cancer,” she says. “My mom had to ask a medical translator in Thailand how to say ‘cervix’ because if you translate it in Thai, it’s just ‘a plug,’ because it keeps the baby in. There is no label, so how do you even talk about the body?”
Seeking a Second Opinion and Culturally Competent Care
After the bad experience with her first doctor, Chaiprasert-Paguio finally connected with a second gynecologist, who was much more attentive. “She was the most calming person that I’ve ever met,” Chaiprasert-Paguio says. It was this new doctor who walked her through what her HPV diagnosis meant. She adds that it helped that this doctor was Black, and was likely more aware of issues around health disparities and the need for community education. “Looking back at it, I think she didn’t wave me off because she was like, ‘Okay, this kid’s coming to me with all this. Let’s have a conversation.’”
Chaiprasert-Paguio’s doctor explained to her that although many HPV cases do resolve themselves, she had a high grade strain, which meant that there was a possibility that it may eventually grow into cervical cancer.
They made a plan to monitor the infection and had regular check-ins, involving pap smears and sometimes a cone biopsy — a procedure where an abnormal region of the cervix is removed to test for cancer. The whole time, Chaiprasert-Paguio showed no physical symptoms of HPV. She graduated college, met someone new, and got engaged.
From an HPV Infection to Cervical Cancer and It’s Mental Toll
At 22 and two weeks before her wedding, Chaiprasert-Paguio got a call from her gynecologist. “My doctor actually personally called me, not the nurse. She was like, ‘The test came back and it has developed into cervical cancer. So we’re gonna need to get you into treatment,’” Chaiprasert-Paguio says.
Chaiprasert-Paguio ended up cutting her honeymoon short. Back at home, she went through several rounds of colposcopies (where the doctor uses a binocular-like tool to look at the surface of the cervix), cryotherapy (freezing the cells with a cold chemical), and a LEEP procedure (where a doctor numbs the cervix and scrapes the surface with a heated wire) to try and remove all the cancerous cells. “At that point, I had a very compromised cervix. So, that was the gist of my treatment. Just going in, getting the colposcopy, getting it frozen, and then coming back in and redoing it again,” she says.
It wasn’t long before her diagnosis, and subsequent treatment, began to weigh on her work, family life, and mental health. At first, she thought she could just get the procedure done and return to work, but that quickly proved impossible. “The cramping started, the bleeding, and then it was just so painful,” she says.
Chaipresert-Paguio didn’t want to worry her mom, but her husband ended up calling her anyway. “He said, ‘I think you need to come down because she’s really in pain. She’s curled up in a ball,’” Chaipresert-Paguio says. “[My mom] came down and was like, ‘Why didn’t you tell me?’ I said, ‘Because I just didn’t want to make a big deal out of it.’”
Although she was experiencing a lot of stress and anxiety, Chaipresert-Paguio didn’t want to burden anyone else with what she was going through, she says. “It’s that Asian upbringing where it’s like, ‘Just power through, don’t talk about it, and just move on as quickly as possible.’ And so that’s exactly what I did,” she says.
After several rounds, it appeared the treatments were successful and the abnormal cells were removed. But her doctor warned her that the HPV could still return, and that the cancer could recur as well. “How my doctor explained it to me was that it goes into sleep mode, but it’s still there. Sometimes you’ll have a negative test, but sometimes it’ll come back.” That’s exactly what happened after Chaiprasert-Paguio had her daughter. She tested positive again for HPV during the COVID-19 stay at home orders. After multiple biopsies, the doctor said the safest route was to just remove her uterus and cervix entirely.
In September 2021, Chaiprasert-Paguio underwent a total hysterectomy, where they removed her entire uterus and cervix.
HPV and Cervical Cancer in Asian Americans
Chaiprasert-Paguio’s story is not uncommon. High-risk strains of HPV are responsible for over 90 percent of all cervical cancers, according to the CDC, and at any given time, around 42 million people are living with HPV in America, the CDC also estimates.
Yet the stigma surrounding sex and STIs means that HPV remains a taboo topic, especially within the Asian American community. It’s even been featured as a punchline — “Everybody has HPV, okay? And If you don’t have it yet, you gon’ get it!” comedian Ali Wong proclaims in her 2016 special — but rarely is it discussed in the same frank terms that we reserve for health issues like breast cancer or dementia.
This is worrisome, considering cancer is the leading cause of death for Asian Americans, says Jaimie Z. Shing, PhD, a postdoctoral fellow for the Division of Cancer Epidemiology and Genetics at the National Cancer Institute.
“Many people tend to regard Asians as being ‘the healthiest race,’ but this is misleading,” Dr. Shing says. This is often an offshoot of the “model minority” stereotype, which portrays Asians as a group as smarter, wealthier, and more self-reliant than their peers, according to a study published in February 2022 in Health Affairs.
Aggregated Health Data on Asian Americans Creates a False Picture
Equally as misleading is the data on the subject. The rate of Asian Americans diagnosed with HPV and cervical cancer is relatively low compared with the other racial groups — about 6 percent compared with 8.5 percent for Black people and 9.3 percent for Hispanic people, according to the CDC. But researchers say that’s an incomplete picture.
In a study published in February 2023 in Cancer Spectrum, Shing and a team of researchers found that while the HPV-associated cervical cancer rates were low for some Asian ethnicities — 4.5 percent for Indians and 5.3 percent for Chinese women, for example — for others, it was startlingly high — 20.7 percent for Laotian women and 13.7 percent for Vietnamese women.
Discovering this gap was particularly striking because the differences were totally hidden when you only examined the aggregated rates, Shing says. Aggregated data is when Asian American ethnicities are lumped together into one big group, despite having very different histories and health outcomes.
That’s why many Asian researchers are pushing for a methodology called data disaggregation — as in, breaking up the big label into smaller categories to better understand the needs of each specific group.
That means using clearer descriptors for patients, like “Korean” and “Filipino” rather than just “Asian.” This is important because not all Asians are the same or have the same risks for health outcomes. “Asian Americans vary widely,” Shing says. “In culture, religion, health-seeking behaviors, which makes sense given how large and spread out Asia is geographically.”
Though terms like “Asian American” and “AAPI” have been historically useful terms for political organizing, in the medical field, those kinds of labels can mask disparities and leave certain populations more vulnerable, Shing says.
Experts say that this change has been in the works for decades within Asian American circles, but studies and databases have been slow to implement the need for more tailored health information. A major issue is that data collection is often expensive and time consuming.
But ultimately, collecting better data helps government officials, healthcare providers, and local organizations identify which communities are most vulnerable, and where resources should be allocated.
“There has to be education at multiple levels,” says Lan Doan, PhD, an assistant professor at the NYU Grossman School of Medicine in New York City. Right now, for example, the way race is collected in the doctor’s office is piecemeal: “Sometimes it’s done by patient self report, sometimes it’s assigned by staff. There’s unclear protocols and also just lack of knowledge about, like, ‘Oh, this specific ethnic group might be at greater risk for this disease,’” she says.
Shing says they’re also pushing to reframe conversations about HPV within the Asian community. “One thing we are working toward is branding the HPV vaccine as a means of cancer prevention, rather than focusing on HPV being a sexually transmitted infection,” she says. This avoids the problem of sex being treated as a taboo topic.
Armed with enough education — and support from culturally aware providers — the hope is that in the future, it won’t be as difficult for patients like Chaiprasert-Paguio to find the right words to say to their loved ones.
Storytelling as Prevention
Today, Chaiprasert-Paguio is an advocate with Cervivor, Tamika Felder’s organization that spreads education and awareness about cervical cancer. She participates on patient advocacy panels, where she talks about the importance of the HPV vaccine and cervical cancer education. She’s also the host of Cervivor’s podcast, now in its third season, where she interviews doctors and other cervical cancer survivors about their experiences.
“The surprising thing is how common a lot of our stories are, even though the diagnoses were all different and treatments were all different,” she says. “A lot of the patients and a lot of the survivors really internally blame themselves for this because it [started from] an STI.”
She says that’s why it’s important for her to continue sharing her story. “A lot of people messaged me and they were just like, it’s great because you’re talking about topics that we don’t want to talk about,” she says.
Outside of work, Chaiprasert-Paguio says she never misses her yearly exams and screenings, and prioritizes her mental health with routine therapy sessions. She also works out regularly, and has taken up watercolor painting. “ One main lesson I have learned is to advocate for myself, not just in regards to my health, but in my daily life,” she says.
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