AANHPI Communities and Cervical Cancer: Breaking Cultural Silence to Save Lives

In the first of two blog posts for AANHPI Heritage Month, cervical cancer survivors and experts highlight the dangers of staying silent when a disproportionate number of lives are at risk.

Asian American and Native Hawaiian/Pacific Islander (AANHPI) communities are the fastest-growing racial group in the U.S., now totaling over 24 million people—about 8% of the population. This diverse group includes millions of Chinese, Filipino, Vietnamese, Japanese, and others, and is projected by the U.S. Census Bureau to double by 2060.

While “AANHPI” may be a useful acronym for these distinct communities, it’s not the only thing they have in common. They also share a serious health concern: Cancer is the leading cause of death among Asian Americans and the second-leading cause for Native Hawaiians and Pacific Islanders, according to the American Cancer Society (ACS).

Cervical cancer, in particular, demands urgent attention. At first glance, non-Hispanic Asian American and Pacific Islander women appear to have lower cervical cancer rates than other racial and ethnic groups: 6 cases per 100,000, compared to 10 for Hispanic women, 8.4 for non-Hispanic Black women, and 6.9 for non-Hispanic white women, according to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program.

But a closer look at the numbers reveals stark disparities. Vietnamese women, for example, have a cervical cancer incidence rate of 18.9 per 100,000, while Laotian women face an even higher rate of 20.7 per 100,000—more than triple the overall AANHPI average.

[source: National Cancer Institute Division of Cancer Epidemiology & Genetics]

Mortality disparities are just as alarming. Native Hawaiian and Pacific Islander women experience death rates up to 3.3 times higher from cervical, stomach, and uterine cancers than white women—even though their overall cancer mortality is 7% lower.

These disproportionately high rates are often fueled by a mix of cultural beliefs and stigma about “below the belt” cancers, language barriers, lower general awareness of the human papillomavirus (HPV) and cervical cancer risks, and other factors. As a result, HPV vaccination and screening rates are lower—key tools in Cervivor, Inc.’s mission to eliminate cervical cancer

“Despite their growing number, Asian Americans have long been overlooked in health disparities research,” says Dr. Ha Ngan “Milkie” Vu, Assistant Professor at Northwestern University’s Feinberg School of Medicine. A Vietnamese immigrant, Dr. Vu leads Project HERO, which tests culturally tailored digital tools to increase HPV vaccination among Vietnamese Americans. She elaborates: “The ‘model minority’ stereotype (i.e., overemphasis on Asians’ ability to overcome hardship and succeed in America) masks real gaps in health equity, especially when it comes to issues like cervical cancer.” 

To understand the personal toll of cervical cancer on the AANHPI community—and what is needed to break the “culture of silence” many experience—let’s start with the story of Filipina-American survivor Arlene Simpson.

Arlene’s Story

Arlene and her father, who worked in the medical field like many in their family.

Arlene, a financial services professional and church leader in Bothell, Washington, grew up in a family of healthcare professionals—yet no one ever talked to her about HPV. “I didn’t even get my first Pap test until after I gave birth at 22,” she recalls.

Her crash course in cervical cancer began in August 2021. “During the pandemic, I missed all my annual exams and waited to see my doctors again,” she explains. At her eventual Pap and HPV test, her gynecologist discovered hemorrhaging and immediately performed a biopsy and ultrasound. Although she had a history of abnormal Pap results, her symptoms—chronic endometriosis, dysmenorrhea, heavy bleeding, and pelvic pain—had always been dismissed as “normal.” A week later, the doctor called with the diagnosis. Arlene was stunned. “I never thought I’d get cancer,” she says.

She underwent chemotherapy, radiation, and brachytherapy at Seattle Cancer Care Alliance (now Fred Hutch) and the University of Washington Medical Center. Now, three years in remission, she continues follow-up visits every six months.

For Arlene, surviving cancer wasn’t just a physical battle—it was emotional, too.

“In our Filipino community, especially among the older generation, anything ‘below the belt’ isn’t discussed—especially sex or reproductive health,” she says. And when it is discussed, there’s often a lack of understanding about the causes of disease. After her diagnosis, she recalls one of her aunts saying, “How did you get that cancer? You were so wild and rebellious growing up.” The comment only deepened the shame Arlene was already feeling.

Overcoming Stigma in AANHPI Populations

Arlene’s experience resonates with others in the Cervivor community, including Joslyn Chaiprasert-Paguio, who is of Chinese and Thai descent, and Anna Ogo, who is Japanese.

Joslyn, a medical journal publisher and mom from Menifee, CA, says, “The pressure to stay silent about reproductive health made it even harder to find my voice. Cervical cancer became even more taboo because it’s ‘below the belt.’”

Anna, who lives in Kent, WA, with her husband and their “Cervivor Baby,” 18-month-old Eito, adds, “Sharing my story became a source of healing. As an Asian woman, breaking the silence around reproductive health helped me process grief, connect with others, and inspire hope.”

Dr. Zhengchun Lu, a cancer pathologist and resident physician at Oregon Health & Science University, says stigma and misinformation about HPV remain common in many AANHPI communities. She recalls one Asian American patient’s reaction to an HPV diagnosis: “It must be my husband.” For Dr. Lu, this reinforced how shame and blame still surround HPV—a challenge she actively addresses in patient care and community outreach, where she emphasizes that HPV is extremely common and not a reflection of a person’s behavior or character. 

“By fostering open, judgment-free conversations, we can help people feel safe, informed, and empowered to take charge of their health,” she says. As part of her work, Dr. Lu introduces cervical cancer screening in relatable terms—comparing Pap and HPV tests to routine checks like blood pressure or cholesterol screenings.

Anh Le with her parents on her medical school graduation day.

While stigma is widespread, it is not universal across AANHPI communities. Anh Le, born in Vietnam and now living in Phoenix, Arizona, shares a different experience. Diagnosed at age 30 in 2018 while attending medical school in Chicago, she didn’t face judgment from her family—but she did hesitate to tell them.

“When it came to fertility goals, the hopeful anticipation of having grandchildren was a topic that my mother often talked about,” shares Anh, who is an only child. “I was afraid of disappointing them.”

To her relief, Anh received nothing but “immense love and support.” And she credits her parents’ self-sacrifice during her two-month recovery from a total pelvic exenteration—a major surgery removing all pelvic organs, as described in a recent Memorial Sloan Kettering Cancer Center article—and especially her mother’s cooking, which “single-handedly nourished me back to health.”

How Cervivor is Empowering AANHPI Survivors

Today, survivors like Arlene, Joslyn, and Anna are powerful Cervivor Ambassadors for change. Arlene and Anna recently represented Cervivor at the 2025 Society of Gynecologic Oncology (SGO) meeting, where Arlene was a panelist. Joslyn serves on the ACS National Roundtable on Cervical Cancer and hosts the Cervivor Podcast.

Soon-to-be surgeon Anh reflects: “Being part of Cervivor helped me understand what it means to be both a patient and a future doctor. As a young AAPI adult with cervical cancer, it was lonely.” Her advice: “Don’t blame yourself. Be proactive. Make sure your care team aligns with your goals. And remember—there’s a community here to support you.”

Arlene credits Cervivor founder and Chief Visionary Tamika Felder for helping her find her voice. “When Tamika encouraged me to share my story, I saw its impact. Someone in Bulgaria heard it and got help. My Filipino cousins—some of them doctors—are now talking about the HPV vaccine. Cervivor gave me a platform and a purpose.”

Join the Cervivor Movement

Stories like Arlene’s, Anh’s, Joslyn’s, and Anna’s remind us that silence can be deadly—but sharing our voices can be lifesaving. If you’re ready to break the stigma, build community, and be part of the movement to end cervical cancer, sign up for updates about our next Cervivor School or join our next virtual Creating Connections meetup this upcoming June 10. Your story matters, and together, we can save lives—one conversation at a time.

The Ladies in the White Shirts

Cervivor is committed to making a difference by working to close disparity gaps that continue to plague Communities of Color. This commitment led Cervivor’s Founder and Chief Visionary, Tamika Felder, and Cervivor’s Chief Diversity Equity and Inclusion Officer, Kimberly Williams to unite community members this past weekend from around the world—Honduras, St. Lucia, and U.S. states like Texas, Maryland, California, Alabama, New York, North Carolina, Iowa, and more—to Cleveland, Ohio, for the Cervical Cancer Patient Advocacy Retreat for Communities of Color. This retreat wasn’t just a local event; it was a global movement. We had community members participating via Zoom from Mexico, the Caribbean, and Africa, emphasizing our commitment to advocating for change worldwide.

Empowering Knowledge
Renowned experts from the Cleveland Clinic and Langston Hughes shared their insights on cervical cancer prevention, treatment, and advocacy. Attendees gained a deeper understanding of the importance of:

  • Routine screenings and HPV vaccination.
  • The need for cultural competency in healthcare.
  • Ways for them to engage in community outreach and education.

After an expert-led panel, Chief Diversity Equity and Inclusion Officer, Kimberly Williams recapped the powerful message, “An educated patient takes action.”

Participants also had the opportunity to discuss self-collection cervical cancer screening and participated in discussions that answered questions about self-collection and its importance in eliminating cervical cancer. This discussion aided the advocates in understanding and promoting self-collection as a viable option for early detection when they return to their communities.

A special session with Dr. Leeya Pinder, who practices both in the United States and Africa, provided a global perspective on the issue of access (not just screening and treatment, but also clinical trials). Dr. Pinder explained the dire need for advocacy to end the disease, highlighting that many individuals with a cervix in these countries lack access to essential screening materials, leading to detrimental results. Her insights allowed participants to see the full circle of need in cervical cancer prevention and treatment.

Turning Knowledge into Action
On Saturday, Cervivor launched Cervivor Cares, which is our initiative to raise awareness about cervical cancer in communities through education, volunteering, and active presence. We engaged in community outreach, raised funds, and supported the mission to eliminate cervical cancer by providing essential resources and promoting access to necessary screening and treatment for all. 

What better way to launch Cervivor Cares, than a Cervivor in Action day after a full day of classroom training? That’s right, our retreat participants increased their advocacy footprint by putting their knowledge into action. They volunteered their time at a clinic hosted by Medworks and the Cleveland Clinic that provided preventative screenings to the underserved community of Cleveland, Ohio. 

It was not only an opportunity for preventive screenings, it was an opportunity for our participants to bring education and empowerment to all those who attended and were touched by our volunteers. Without hesitation, our retreat participants assisted by sharing their stories and expressing the importance of our mission. Our Cervivor Español, attendees translated to and for patients in every facet including the exam room so patients understood the physician’s questions and requests. This group put the information they learned into action immediately. Our participants met people where they were, in their daily routines —urging them to schedule their cervical cancer screenings, attend follow-ups, and the importance of HPV vaccination. 

As they shared their stories and stressed the importance of cervical cancer screenings and HPV Vaccination, the clinic was buzzing with excitement. Patients and staff alike began referring to them as “The Ladies in the White Shirts,” urging others, “You need to go talk to the ladies in the white shirts.”  These Cervivors were educating patients before they even walked through the door, helping them understand that regardless of their past, getting screened and following up on any abnormalities now is crucial. The retreat participants’ presence underscored the importance of the Cervivor mission and served as a reminder that their story mattered, and was already making a difference.

Embracing the Spirit of the Ladies in the White Shirts
As we reflect on this transformative event, we celebrate the spirit of “The Ladies in the White Shirts”—the Cervivor community. Each of you embodies this spirit by wearing your shirt, sharing your story, and advocating for screening. Your dedication makes you a vital part of the movement to end cervical cancer. In the words of Gwendolyn Jackson, “You have prepared me to go out into my community.” If you don’t feel prepared, we have programs available for you!

We encourage everyone to grab your Cervivor Spark, use the hashtags #Screen4Me and #Cervivor, and continue advocating for cervical cancer screenings. By sharing your story and spreading awareness, you become a powerful advocate, helping others access the screenings they need and contributing to a future free from cervical cancer. Together, as a community working to eradicate cervical cancer, let’s continue to make our voices heard, drive change, and support each other in this crucial mission.

Cervivor would like to extend its sincerest gratitude to our sponsors, including Pfizer, Genmab, Roche, and The Marchetta Family (Vince, Amanda, & William in honor of their late wife and mother, Betsy), as well as our in-kind donors, La Roche-Posay, Kafela, Lepley & Co., and Kesh the Creative, for their generous support and contributions to our mission.