Confronting Cervical Cancer Disparities in AANHPI Communities by Bridging Cultural Barriers

In this second blog post for AANHPI Heritage Month, we explore the health disparities affecting Asian American, Native Hawaiian, and Pacific Islander cervical cancer survivors.

Previously, Cervivor community members Arlene Simpson (Filipina), Joslyn Chaiprasert-Paguio (Chinese-Thai), Anna Ogo (Japanese), and Anh Le (Vietnamese) shared their diverse experiences, revealing a shared truth: While stigma and cultural silence around cervical and other “below-the-belt” cancers are common, their impact varies across AANHPI communities.

Despite these differences, many face similar systemic barriers to prevention, screening, and timely care—barriers that continue to cost lives. Case in point:

  • According to the American Cancer Society, Pap test screening is significantly lower among Chinese (69%) and Asian Indian (74%) women compared to white women (84%). This gap in screening may contribute to later-stage diagnoses and worse outcomes. 
  • HPV vaccination rates also lag behind national averages. A 2023 Centers for Disease Control and Prevention (CDC) report found that only 58% of Asian American adolescents had initiated the HPV vaccine series—lower than their Hispanic (73%) and White (61%) counterparts.
  • A 2024 ACS article also noted that while cervical cancer rates are higher in some parts of Asia, many AANHPI individuals are unaware of risks based on their country of origin. 

Experts and survivors highlight the following key challenges to reversing these trends as well as some promising progress: 

Language Barriers

Dr. Ha Ngan “Milkie” Vu

Asian Americans come from over 30 countries and speak more than 100 languages and dialects, explains Dr. Ha Ngan “Milkie” Vu, Assistant Professor at Northwestern University’s Feinberg School of Medicine. These linguistic and cultural differences often make accessing health information difficult.

As Arlene shares, “Medical terms don’t always translate clearly, and jargon makes it harder. Even basic words like ‘cervix’ don’t translate well in some cultures.” Joslyn, featured in Everyday Health, says, “In Thai, there’s no direct word for cervix—it’s described as a ‘plug’ that keeps the baby in. Without a proper term, how do you talk about your body?”

These communication challenges are often compounded by a lack of in-language medical materials. Dr. Jennifer Tsui, Associate Professor of Population and Public Health Sciences at USC’s Keck School of Medicine, recalls translating for her Asian immigrant grandparents at medical visits—an experience common to many second-generation individuals. Through her current work on the National Cancer Institute-funded ACHIEVE Study, which examines barriers to cervical cancer treatment and survivorship care, she has found that many patients want materials in their native language to understand whether the vaccine has been tested in their communities and if it’s effective for different Asian American groups.

Dr. Jennifer Tsui

Bridging these language gaps often requires more than translation—it takes cultural nuance. Dr. Zhengchun Lu, a cancer pathologist and resident physician at Oregon Health & Science University, originally from Zhenjiang, China, actively works to meet patients where they are. She communicates with Chinese-speaking patients and adapts CDC and World Health Organization (WHO) materials into formats that resonate culturally. For other language needs, she collaborates with hospital interpreters. “Removing language barriers also removes fear—people feel empowered to get screened,” she says.

Dr. Zhengchun Lu

To support these efforts, organizations like the American Cancer Society offer multilingual resources through their “Cancer Information in Other Languages” initiative, which provides materials in 13 languages, including Chinese, Korean, Tagalog, and Vietnamese. Making vital information more accessible is a crucial step toward equity in prevention and care.

Limited Awareness, Not Hesitancy

In the first post, Dr. Lu emphasized that many AANHPI patients simply lack awareness about HPV and the need for regular cervical cancer screenings. The same goes for the HPV vaccine.

Dr. Tsui’s research confirms this: “Many people hadn’t heard of the HPV vaccine or didn’t know it helps prevent multiple cancers.”

Adolescents often help bridge the gap. “Teens are more acculturated and read the materials—they’re the ones bringing this information home and influencing family decisions,” she says.

Trusted community messengers also matter. “In many Asian communities, people rely on their aunts, grandmothers, and community leaders,” says Dr. Tsui. “That’s why strong local partnerships are key.”

Navigating a Complicated Health System

Confusion about the U.S. healthcare system can delay screenings and treatment. While many AANHPI communities hold physicians in high regard and prefer care from well-known institutions, accessing these systems—or even getting a second opinion—can be complicated, explains Dr. Tsui.

For patients with abnormal Pap results, referrals to specialists often mean traveling to unfamiliar facilities without language support, creating additional barriers. Demanding work schedules further complicate making and keeping appointments.

To address this, Dr. Lu’s team partners with local groups to host screening events staffed by bilingual volunteers. “Bringing services directly to the community has built trust and boosted participation,” she says.

She also sees promise in HPV self-collection. “It’s not a home test, but it can be offered at outreach events under medical supervision. It’s more private, more flexible, and less intimidating—especially for those wary of pelvic exams.”

Dr. Lu works with Rabeka Ali, the research coordinator at OHSU Pathology, during an HPV testing event at a Chinese church in Portland, OR.

Lack of Gender Concordance

“In our Filipino culture, especially among older generations, there’s a belief that you don’t question the doctor—or that traditional remedies are better,” says Arlene. “But many women also feel uncomfortable discussing reproductive health with male doctors and may avoid care because of it.”

Dr. Tsui agrees. “Women are less likely to follow up if they don’t feel comfortable with their provider. In local Asian American communities like our Chinatown, having female doctors can make all the difference.”

Anti-Asian and Anti-Immigrant Sentiment

Lingering fear from the pandemic and rising anti-immigrant rhetoric have also impacted care-seeking behaviors. A 2024 Axios/Harris poll found that 50% of Americans support mass deportations of undocumented immigrants, fueling anxiety in immigrant communities.

“There was definitely a delay in seeking care—not just because of COVID, but because of fear,” says Dr. Tsui. Many in the AANHPI community avoided medical visits due to rising anti-Asian sentiment and concerns about overusing medical resources—or fears that if they left the country, they might not be allowed to return.

This fear compounded the silence around health issues like cervical cancer, which only deepened stigma, Arlene adds. “It’s more important than ever to speak up, share our stories, and help Asian women feel safe and supported.”

Dr. Tsui’s team regularly works in Asian American communities around USC.

Dr. Tsui sees hope in community-driven efforts: “It’s not all doom and gloom. In cities like San Francisco, LA, New York, Chicago, and Atlanta, AANHPI organizations are stepping up. Local clinics and advocates are helping people understand their rights and access life-saving care—just as they did during the pandemic.”

Cultural Beliefs and Cancer Fatalism

Dr. Tingting Zhang

In a 2024 American Cancer Society article, Dr. Tingting Zhang, a thyroid cancer survivor, patient advocate, and CEO of ONEiHEALTH, noted: “Some AANHPI individuals may avoid discussing cancer risk, viewing it as a bad omen or personal failure. But cancer is not retribution—it’s biology. And early detection saves lives.”

Cancer fatalism is a well-documented barrier. As Dr. Vu adds, “In my research, Filipino and Vietnamese respondents reported especially high levels of fatalistic beliefs. That mindset can lead to inaction—people believe they can’t change their outcomes, so they don’t engage in prevention. That’s why education is key: the HPV vaccine prevents cancer. We need to make that message loud and clear.”

Let’s Keep Breaking the Silence

At Cervivor, Inc. we believe that every story matters—and every voice can spark change. If you are an AANHPI cervical cancer survivor, caregiver, or advocate, we invite you to join our community. Better yet, share your unique Cervivor Story. (Submit your story here.) Together, we can dismantle stigma, increase awareness, and save lives.

Black Communities and Cervical Cancer: Breaking the Silence for a Healthier Future

Cervical cancer affects thousands of women in the United States each year, hitting Black communities particularly hard. Of the estimated 13,360 new cases in 2025, the American Cancer Society projects 2,180 will be in Black women, with 610 deaths – a higher incidence rate than their share of the general population. Black women are 19% more likely to develop cervical cancer and nearly 65% more likely to die from it than white women. Systemic health disparities, medical mistrust, and cultural barriers both create and widen this gap. 

While other groups – such as Indigenous women, Latinas, and LGBTQ+ individuals – face similar challenges, Black women experience them at disproportionately higher rates. Kimberly Williams knows this firsthand. 

Kimberly’s Story

A headshot of Kimberly Williams, who has long black hair and is wearing a teal turtleneck sweater. She looks directly at the camera with a slight smile.
Kimberly Williams

“I had never heard of cervical cancer before. I thought I was the only person in the world with it,” recalls the Houston mother of two, who was diagnosed with cervical cancer in February 2018 after visiting a doctor for irregular menstrual cycles in late 2017. She felt blindsided, like many who receive a late-stage diagnosis – a trend that is on the rise, with Black women having the highest number of these cases.

Kimberly was taught to keep family matters private, especially health issues. “Growing up, my mother would say, ‘What goes on in the house stays in the house.'” But staying silent only made her feel more isolated.

After a radical hysterectomy in March, her surgeon informed her that all of the cancer wasn’t gone and she would need radiation and chemotherapy. When her insurance repeatedly denied PET scan authorization – an imaging test crucial for assessing her condition – she became discouraged.  “After a couple of months, I thought, ‘Forget it. I’m fine. I’m healed,’” she shares in this new CervivorTV video.


But she wasn’t fine. A recurrence in 2019 forced Kimberly to undergo treatment. Her oncologist’s dismissive approach almost made her walk away again.

“She just said, ‘You’re starting chemo tomorrow,’ without explaining anything. I had to say, ‘Talk to me like I’ve never had cancer before,’” says Kimberly, who holds a master’s degree and has been a social services worker for over 20 years. “Some people would stop their treatment right there. Not being respected enough to have things explained properly is a major barrier to care.” 

Fortunately, Kimberly’s story has a happy ending. Now cancer-free, she is committed to speaking out to help others avoid the struggles she faced.

“As a Black woman, I realized that other Black people listen to other Black people. That’s just how it is,” says Kimberly, who now serves as the Chief Diversity, Equity, and Inclusion (D.E.I.) Officer at Cervivor, Inc. and was recently named to the Steering Committee of the American Cancer Society National Roundtable on Cervical Cancer. “I had to make the hard decision to share my story.” 

‘Holes’ in the Healthcare System

Kimberly’s experience underscores the need for shared stories to drive change in cervical cancer outcomes. Yet, significant healthcare disparities and barriers to care persist. 

Despite recent reports that some public health officials are being discouraged from using terms like “health equity” and “disparities,” Cervivor Founder and Chief Visionary Tamika Felder warns against brushing aside the research fueling life-saving progress. “Health equity is more important than ever. Ignoring the reasons behind disparities only makes the gaps wider,” says Tamika, a member of the National Cancer Advisory Board (NCAB) and co-chair of the National HPV Vaccination Roundtable. “We know where the inequities exist and why. Trying to erase or undermine the incredible work being done to close these gaps is deeply troubling. If we continue down this path, it will be even harder to repair.”


Dr. Lynn Richards McDonald, Clinical Program Director for cervical cancer screening at Johns Hopkins Hospital, is a leading expert on health equity. She has dedicated her career to advancing it through advocacy, collaboration, and community outreach. Dr. McDonald identifies critical “holes” in the healthcare system that contribute to higher cervical cancer mortality rates in the Black community: “These ‘holes’ – cost, lack of knowledge, embarrassment, clinical bias, cultural differences, and fear – prevent timely screenings and treatment,” explains Dr. McDonald, who spoke about strategies for inclusive cervical cancer care at last month’s Cervical Cancer Summit Powered by Cervivor, Inc.

Key Disparities in Diagnosis and Treatment

One striking paradox: Although Black women have higher rates of initial Pap testing (64% in the past two years compared to 59% of white women, 60% of Hispanic women, and 57% of Asian women), they still face disproportionately high cervical cancer rates. This disparity is largely due to lower follow-up rates after abnormal Pap results and later-stage diagnoses. A 2020 systematic review of 34 studies involving over 1.2 million patients found that even a three-week delay in cancer treatment, including cervical cancer, significantly impacts survival rates.

Dr. Andrea Stubbs, Administrative Director for the St. Jude HPV Cancer Prevention Program, emphasizes how poor communication by medical professionals can affect follow-up after an abnormal Pap or positive HPV test: “Patients of color often receive vague explanations, like ‘dirty cells’ or ‘a little virus,’ which downplay the urgency of follow-up. For many, missing work for appointments means losing money, adding another layer of difficulty.” 

Julia Brown, MPH, and Andrea Stubbs, MPA, of St. Jude accept the Cervivor Champion Award for their dedication and contributions to ending cervical cancer.
St. Jude Children’s Research Hospital recently received the Cervivor Champion Award for its dedication to ending cervical cancer. Dr. Andrea Stubbs (on the right) and Julia Brown accept the award on behalf of the organization at the 2025 Summit.

Where people live and insurance coverage affect outcomes, too. In 2022, Human Rights Watch reported that rural Black women face a cervical cancer rate nearly 50% higher than rural white women and are more likely to be diagnosed at later stages with lower survival rates. A 2023 study also confirmed that Black women have 18% higher odds of receiving a advanced-stage diagnosis compared to white women, largely due to health insurance access. 

When it comes to enrollment in cutting-edge clinical trials, the gap is even wider – less than 5% of participants are Black, limiting how applicable the results are to diverse populations. Barriers such as travel distance to research centers and a lack of transparency in trial processes add to this underrepresentation.

“Many Black women hesitate to participate in clinical trials due to distrust of the medical community,” explains Tiffany Drummond, a clinical research expert who spoke on the topic at the recent Summit. “Patients are smart, but they don’t know what they don’t know until the research and data are shared with them. Why can’t that information be shared?”


Cervivor Ambassador Gwendolyn “Gwen” Jackson, who was diagnosed with Stage 4 cervical cancer in 2020, credits clinical trials for extending her life. “I’m still alive because of clinical trials,” says the Texas grandmother of three. However, she initially had concerns about participating: “In the African-American community, there’s a deep-rooted distrust of clinical trials,” she shared with The Patient Story last December. “It goes back to when they were using African Americans for experiments and really being the ‘guinea pigs.’”

Medical Mistrust: A Barrier Rooted in History

Gwen’s insight on the roots of medical mistrust in the Black community is spot-on. As Dr. Wendy Kline shares in the latest Cervivor Podcast about her new book Exposed: The Hidden History of the Pelvic Exam, the gynecological abuse of Black women in America dates back over 200 years. It began with James Marion Sims, often called the “father of modern gynecology,” and has persisted through generations.

“The origins of gynecology date back to the 19th century with the invention of the speculum,” Dr. Kline, a Historian of Medicine at Purdue University, explains, referring to the familiar tool used for pelvic exams. “Sims built gynecology on the bodies of enslaved women, three of whom underwent multiple procedures without anesthesia. These non-consensual experiments perfected techniques that defined the field, raising ongoing questions about consent and ethical treatment.” She adds, “Although not every gynecologist is abusive, the history is inherently problematic.” (Read more about the three enslaved women – Anarcha, Betsy, and Lucy – and what they endured in the name of “science” in this powerful retelling by Women & the American Story.)


Another example is Henrietta Lacks, a now-celebrated Black woman who sought treatment at Johns Hopkins in 1951 for abnormal vaginal bleeding. A tobacco farmer and mother of five, she was admitted to the “colored ward,” as a recent St. Jude Research article recounts. After eight months of radiation treatment, Henrietta died at 31, but her cancer cells were taken without consent, leading to the development of HeLa cells that advanced cervical cancer research. (To learn more about Henrietta’s impact on medical ethics, check out last month’s Cervivor Podcast with her great-granddaughter, Veronica Robinson, and Johns Hopkins’ Dr. McDonald.)

The article summarizes, “The medical mistrust generated by historical mistreatments has been passed down over time. Avoiding regular gynecological care makes Black women more likely to be diagnosed with advanced cervical cancer, decreasing survival.”

Breaking the Cycle: How Awareness Can Save Lives

St. Jude highlights another critical factor contributing to higher cervical cancer mortality rates among Black women: lack of awareness about the human papillomavirus (HPV) and the HPV vaccine, in particular. Data from the Office of Minority Health (OMH) indicates that in 2022, non-Hispanic Black females aged 19 to 26 were 20% less likely to have ever received an HPV vaccine than non-Hispanic white females in the same age group.

The Centers for Disease Control and Prevention (CDC) reports that vaccine uptake among all children is still quite low, with only 38.6% of children aged 9 to 17 receiving at least one dose in 2022. While there is no significant statistical difference between Black and white children, health insurance status is a key factor. A February 2024 CDC report found that children with private health insurance (41.5%) were most likely to have received one or more HPV vaccine doses, compared with children with Medicaid coverage (37.0%), other government coverage (30.2%), and those without insurance (20.7%). Despite initial gains in coverage from the Affordable Care Act (ACA), Black people remain 1.5 times more likely to be uninsured than white people, according to a February 2025 report looking at health coverage by race and ethnicity between 2010 and 2023.


But awareness and access aren’t the only barriers. As with avoiding gynecological check-ups or low participation in clinical trials, medical mistrust contributes to some Black parents’ hesitancy or refusal to vaccinate their children against HPV. A 2023 Journal of Pediatric Health Care study led by Ariel Washington, Ph.D., MSSW, of the Barbara Ann Karmanos Cancer Institute found that concerns ranged from vaccine safety to the recommended age, noting that, “Some believed their children were being offered the vaccine at a younger age than most because the health care provider believed the child would become sexually active earlier.” 

In an article about the study on the cancer institute’s website, Dr. Washington shared, “One recurring theme was that parents often felt unheard and unable to ask questions about HPV vaccination.” The study reinforces St. Jude’s recommendation that clear, direct communication from healthcare providers is key to increasing vaccination rates in Black communities.

For Black cervical cancer survivors like Kimberly, who remembers not knowing anything about HPV or cervical cancer when she was diagnosed, spreading awareness in the Black community is imperative. “I realized I had to make sure others knew about the resources out there to prevent cervical cancer: screening and vaccination. By keeping quiet, we risk lives.”

If you feel unheard by your medical providers, Gwen offers this advice: “When you go to the doctor’s office, they are working for you. You are not working for them. So, it’s okay to use your voice. If something feels wrong, speak up. If there’s a treatment you don’t want, say that.”

Find Your Community and Take Action

Most importantly, you don’t have to go through this alone. For many, finding community is life-changing. Kimberly describes discovering Cervivor as a turning point in her recovery. Gwen was surprised by the sense of solidarity she found: “I thought it was just Black women who went through this. But now, being in the teal-and-white community, the Cervivor community, we chat with each other. It’s all of us, as women.”

Cancer survivor Bikira Radcliffe, who founded United Colors of Cancer in 2020 to ensure optimal cancer care for Black, Indigenous, and People of Color (BIPOC), also highlights the growing role of faith-based organizations in supporting mental health and cancer care in communities of color. “In Black and Brown communities, mental health is only now becoming a common discussion,” she shared during a panel at the Summit. “Many people turn to churches and similar institutions for support, and we’re seeing these organizations begin integrating cancer care and mental health resources into their missions.”

Esra Urkmez Uzel, Lilly Stairs, and Bikira Radcliffe speak on a panel about patient advocacy and cancer burnout prevention at the 2025 Cervical Cancer Summit. Bikira, wearing a bright pink shirt and matching head wrap, is seated on the left.
From left, Esra Urkmez Uzel, Lilly Stairs, and Bikira Radcliffe discuss patient advocacy and preventing cancer burnout at the 2025 Summit.

Ultimately, the story of cervical cancer in the Black community isn’t just about statistics – it’s about lived experiences that highlight the urgent need for change. At Cervivor, we are committed to ending cervical cancer through:

  • Education: Providing accurate, accessible information on HPV, cervical cancer risks, and the importance of regular screenings.
  • Advocacy: Amplifying voices to break the stigma and silence surrounding these issues.
  • Empowerment: Encouraging individuals to take charge of their health by advocating for themselves, asking questions, and demanding timely, respectful care.

Consider these ways to connect with other Black cervical cancer patients and survivors through Cervivor:

Cervivor community members of color, wearing Cervivor Cares shirts, smile together at the 2024 Communities of Color Retreat in Cleveland, OH. Tamika Felder has her arm around Gwen Jackson.
Participants at Cervivor’s 2024 Communities of Color Retreat in Cleveland, OH.
  • Communities of Color Retreat – A training to support and empower individuals from diverse communities who have been impacted by cervical cancer, the retreat aims to provide a platform for sharing experiences, connecting with others, and promoting health equity and awareness about cervical cancer. Learn more about the most recent retreat.
  • Cervivor Noir – A private group reserved for cervical cancer patients and survivors who identify as African American or Black. Join today and connect with others in the community!
  • Black Cervix Chat – An event that aims to bridge gaps in healthcare access and provide a supportive space for discussions related to cervical health, screenings, and general well-being for those in the Black community. Watch now on CervivorTV!
  • Cervivor Stories – Visit the Cervivor website to read the testimonies of others impacted by cervical cancer and share your story with an easy-to-follow template. 

By advocating for awareness, equitable healthcare, and open conversations, the Black community can break the silence and move toward a healthier cervical-cancer-free future.