Cancer Disparities

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 Ogo (Left) and Joslyn Paguio (Right)

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.

Anna (center) and Arlene (right) were joined by fellow Cervivor Mechal Haas at the recent SGO conference.

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.

Preventing HPV-Related Cancers: Cervivor’s Urgent Call for Action This Women’s Health Month

At Cervivor, Inc., every month is Women’s Health Month. But this May, we’re taking the opportunity to spotlight a critical public health issue that disproportionately impacts women: HPV-related cancers. 

HPV, or human papillomavirus, is an extremely common virus. According to the Centers for Disease Control and Prevention (CDC), approximately 85% of people will be exposed to the virus at some point in their lives. While many HPV strains are essentially harmless, high-risk strains are responsible for more than 37,000 new cancer cases each year in the U.S., including about 21,800 cases in women and 16,000 in men. 

These cancers include vaginal, vulvar, anal, oropharyngeal, penile, and cervical cancer—what Cervivor is dedicated to eliminating. Cervical cancer remains the most common HPV-related cancer in women, with more than 11,000 new cases diagnosed annually.

The good news? Nearly all HPV-related cancers are preventable with tools like vaccination, regular checkups, and early treatment. Just last month, National Cancer Institute researchers reported “phenomenal” new data that a single dose of the HPV vaccine is just as effective as the two doses currently recommended for people aged 9 to 25!

This recent CDC infographic illustrates how effective the HPV vaccine can be in preventing over 90% of related cancers including cervical cancer.

“Knowledge is power—but it’s only the start,” says Tamika Felder, Cervivor’s Founder and Chief Visionary. “Preventable cancers like cervical cancer are on the rise because of complacency, stigma, and misinformation. Up-to-date cervical screenings have dropped over the past two decades, and HPV vaccine uptake was ‘flat’ from 2021 to 2023,” she says, citing an alarming recent report from the American Cancer Society. “The time to prevent suffering—and save lives from cervical and other HPV-related cancers—is now.”

The National HPV Conference: A Gathering of the Minds

Fortunately, Tamika and Cervivor aren’t the only ones prioritizing women’s health and tackling the ongoing challenges of HPV-related diseases. Over 400 attendees gathered with the same mission at the recent National HPV Conference in Indianapolis from April 15 to 17, 2025. Bringing together leading experts, healthcare professionals, researchers, policymakers, and survivors, the conference aimed to facilitate networking, collaboration, and resource sharing like “never done before” in the U.S. 

The National HPV Conference unites leaders toward their shared mission.

Representing Cervivor, Tamika took part in a panel discussion moderated by Dr. Rachel Katzenellenbogen and included other HPV cancer and disease survivors, including recurrent respiratory papillomatosis survivor, Kim McClellan, anal cancer survivor Lillian Kreppel and tonsil cancer survivor Jason Mendelsohn, that underscored the human impact of HPV-related cancers. Later, she and Community Engagement Liaison, Morgan Newman, MSW—a metastatic and recurrent cervical cancer survivor—co-presented with leading global expert and author Dr. Linda Eckert in a session titled “Beyond the Data,” highlighting the power of personal narratives in advocacy.

Cervivor’s founder, Tamika, shared her experience and expertise alongside other HPV cancer survivors, emphasizing the importance of the patient voice.

A few other program highlights from the National HPV Conference: 

  • Keynote Addresses: Dr. Susan Vadaparampil, Associate Center Director of Community Outreach, Engagement, and Equity at Moffitt Cancer Center, delivered a keynote about the importance of advocacy and gave a special shoutout to the Cervivor community. Dr. Michelle Fiscus, Chief Medical Officer for the Association of Immunization Managers and Co-Chair of the National HPV Vaccination Roundtable, also gave a dynamic presentation on the current state of vaccination.
  • Policy and Advocacy Discussions: Dr. Heather Brandt, Director of the St. Jude HPV Cancer Prevention Program, alongside Martha Nolan, Senior Policy Advisor at HealthyWomen, highlighted the critical role of legislative action and community engagement in HPV prevention efforts.
  • Storytelling Session: Sally Perkins, a professional storyteller and cancer survivor, demonstrated the transformative power of storytelling in advocacy.

What’s Next: Challenges and Opportunities

“HPV-related cancers are still a greater threat in the developing world, but it’s alarming that preventable cancers are increasing here in the U.S.—especially as funding from the National Institutes of Health (NIH) and other public and private sources shrinks,” shares Morgan. 

Cervivor Morgan Newman at National HPV Conference
Cervivor’s Community Engagement Liaison Morgan explained how personal narratives can change minds.

Fresh from the National HPV Conference, Morgan outlines several pressing challenges facing the HPV prevention movement:

Vaccine Hesitancy: Despite strong scientific evidence that the HPV vaccine is both safe and effective—and promising news that a single dose may be enough in the future—misinformation and mistrust persist. Disinformation campaigns and cultural stigmas around vaccines continue to suppress vaccination rates, particularly in vulnerable communities. 

Policy and Funding: Sustained progress in HPV prevention relies heavily on legislative support and adequate funding. Cuts to public health budgets and shifting policy priorities threaten access to the HPV vaccine, routine screenings, and treatment services—especially in underserved areas. 

Healthcare Access: Longstanding disparities in healthcare access, insurance coverage, and provider availability mean that too many people—especially in rural, low-income, and marginalized communities—still face barriers to prevention and early detection. Expanding equitable access to care remains a critical need. 

Cervivor’s Response: Advocacy in Action

These challenges fuel our ongoing commitment to protect every person with a cervix from HPV-related cancers. Here’s how Cervivor is responding:

Cervivor School 2024 Graduates and Team Cervivor
Cervivor’s commitment to HPV prevention advocacy includes organizing the annual Cervivor School, where patients and survivors are equipped with the knowledge and tools to advocate for better women’s health care. Shown here is the graduating class of the 2024 school.
  • Enhanced Education Campaigns: Cervivor is tackling vaccine hesitancy through culturally relevant messaging and resources via initiatives such as the Cervical Cancer Summit and Cervivor School, which aims to equip participants with the knowledge and confidence to advocate for HPV prevention within their communities.
  • Empowering Survivors: Through our growing collection of Cervivor Stories, we amplify the lived experiences of patients and survivors to raise awareness, break stigma, and drive meaningful change.
  • Advocacy and Policy Engagement: Members of Cervivor’s team and community proudly contribute to national coalitions including the National HPV Roundtable, National Roundtable on Cervical Cancer, HealthyWomen HPV Coalition, HPV Cancers Alliance, and the St. Jude HPV Cancer Prevention Program, helping shape policies that support prevention, access, and care.
  • Addressing Disparities: Through grassroots, community-led conversations like DEI MeetUps, Black Cervix Chat, Cervivor Español, and international groups like Cervivor Africa and Cervivor Caribbean, we’re ensuring underrepresented voices are heard. (Visit our Events to see if there is a meetup or group that you’d like to join.) We also serve on advisory boards and research committees, championing patient advocacy in clinical trials, screening, and vaccination efforts. 

This Women’s Health Month, we urge our Cervivor community and its allies to recommit to action. Preventable HPV-related cancers shouldn’t still be claiming lives. While cancer doesn’t discriminate, the systems surrounding it often do. It’s time to break down the barriers that stand in the way of prevention, early detection, and treatment.

If you believe in Cervivor’s mission to end cervical cancer and ensure that no one has to face it alone, please consider making a tax-deductible contribution today. Your support helps us continue our lifesaving work.