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.

Cervivor at SGO 2025: Amplifying the Survivor Voice in Gynecologic Cancer Care

On March 14th, 2025, Cervivor had the incredible opportunity to host a table at The Foundation for Women’s Cancer – Patient and Advocate Education Forum, part of the Society of Gynecologic Oncology (SGO) 2025 Annual Meeting on Women’s Cancer in Seattle. This event brought together patients, survivors, caregivers, and advocates for a powerful day of education, connection, and advocacy.

The forum featured leading medical professionals who shared the latest breakthroughs in gynecologic cancer care. One of the highlights of the day was the Patient Advocacy and Empowerment Panel, where national and local patient advocates shared their lived experiences, offering hope, support, and practical strategies for making an impact in the cancer community.

Among the panelists were Selena Rushton, National Cervical Cancer Coalition Pacific Northwest Chapter Leader, and Arlene Simpson, a dedicated Cervivor community member. Each brought a unique and powerful perspective to the discussion.

Selena Rushton shared her journey of living through stage 4 cervical cancer, a diagnosis with an often daunting five-year survival rate. She spoke about the incredible resilience it took to overcome the odds and how, after fighting for her life, she found a renewed sense of purpose through advocacy. Selena has since used the skills she gained in her corporate career to amplify awareness, educate others, and support fellow survivors. Her story is a testament to the strength and determination of cervical cancer survivors, proving that even in the face of the most challenging diagnosis, hope and impact are possible.

Arlene Simpson, also a dedicated member of the Cervivor community, shared her deeply personal journey. Despite growing up in a family filled with medical professionals, Arlene had never heard about HPV until she was diagnosed with cervical cancer. She spoke about the guilt and shame she initially felt—emotions many survivors experience due to the stigma surrounding this disease. However, through finding a supportive community like Cervivor, she was able to reclaim her voice, break the stigma, and turn her experience into advocacy.

Arlene’s Story:
Sharing my story was not easy coming from a very strict and disciplined family. Once my treatment was over, many questioned my decision to share my personal story in public. The reason I share my story is because of those who are afraid, unseen, or unheard. I want to be a familiar face and voice to someone who relates to me. Being one of the very few Asian Americans in Cervivor, I feel it’s very important for me to amplify my voice so others will know they are not alone in this fight. 

It was a humble experience being in a panel with other gynecologic cancer survivors. We all had our unique stories but, what brought us all together was being united in our mission to help other patients and medical professionals understand that the patient’s voice, the patient’s stories, and their cancer treatment choices and decisions are crucial in these types of medical conferences. 

It’s much more than being just a number in a report. We are living proof of the treatment, trials, and patient care that our cancer care teams provide. We provide the invaluable piece of the puzzle that one cannot get from a medical report alone. We are the HEART that beats or stops beating. Our voices matter!

At the Cervivor table, we had the privilege of connecting with survivors, caregivers, and advocates, sharing our mission of education and empowerment. The conversations we had reinforced the importance of sharing our stories, raising awareness, and advocating for better prevention, treatment, and survivorship care.

Mechal, Anna, and Arlene at the Cervivor exhibition table.

Beyond the panel discussions, attendees explored essential topics like managing treatment side effects, integrative medicine, and sexual health—critical issues that often go under-discussed but have a significant impact on quality of life.

A Powerful Story of Advocacy and Care

Another unforgettable moment at SGO 2025 was Aisha McClellan’s powerful speech, delivered on the main stage during the conference’s opening session—a moment that truly set the tone for an impactful and inspiring event.

Aisha took the stage alongside her oncologist, sharing her journey through diagnosis, the importance of finding an oncologist who truly cares, and the power of patient advocacy. She opened up about the challenges she faced early on, where she was met with dismissive care teams who assumed she would not survive. But Aisha refused to accept that fate. She fought tirelessly to be heard, advocating for herself across multiple hospitals until she finally found an oncologist who stood by her, fought for her, and ultimately saved her life.

Aisha’s story was raw, emotional, and deeply moving, highlighting the critical role of patient-centered care and the life-saving impact of advocacy. Her words resonated deeply with the audience, and by the time she finished speaking, the entire room was on its feet, giving her a standing ovation—a moment of recognition for her strength, resilience, and the powerful message she delivered.

The Power of Survivor Voices in Research & Clinical Care

One of the most powerful moments of the event was during the final session, where I was deeply moved by the recognition of patients and survivors as essential voices in clinical trials, research, and daily hospital operations. Seeing researchers, oncologists, and healthcare professionals actively listening and valuing the lived experiences of survivors reinforced the progress we are making in patient-centered care. It was a reminder that our voices matter—not just in advocacy spaces, but in shaping the future of gynecologic cancer care itself.

Why Events Like SGO Matter

Gynecologic cancers, including cervical cancer, don’t just affect individuals—they impact families, communities, and the healthcare landscape as a whole. The SGO Annual Meeting provides a vital platform for survivors and patient advocates to be at the table with researchers and clinicians, ensuring that the patient perspective is heard loud and clear.

As Cervivor continues to advocate for eliminating cervical cancer and improving survivorship care, we encourage all survivors to share their stories—because they truly matter. Every story has the power to inspire, educate, and spark change.

Were you at SGO 2025? We’d love to hear about your experience! Share your thoughts in the comments or reach out to us at [email protected]. Together, we are stronger.

About the Authors

Anna Ogo is a passionate cervical cancer survivor, and Cervivor Ambassador from Kent, Washington. Diagnosed with cervical cancer in 2021 after a routine health check, Anna faced her diagnosis with resilience, undergoing a radical hysterectomy, radiation therapy, and IVF for fertility preservation. Now a proud mother through surrogacy, as well as a loving dog and cat mom, Anna serves on the leadership team of the HPV Free Washington Taskforce. A 2022 graduate of Cervivor School, where she learned how to turn her experience into advocacy, Anna channels her journey into raising awareness about HPV, its vaccine, and the importance of early detection. Anna shares her story to inspire change, empower others, and promote accurate information about cervical health.

Arlene Simpson is a cervical cancer survivor and advocate residing in Bothell, Washington. She was diagnosed in September 2021 and underwent external radiation, chemotherapy, and Brachytherapy. She will be 3 years with no evidence of disease (NED) come March 2025. Arlene is a loving mom, a devoted wife, a Financial Services professional, and a dedicated leader in her church. She is very passionate about helping others and giving back to her community by volunteering in various ministries where she shares the importance of the HPV Vaccine, getting annual exams and pap tests, and sharing her story to raise awareness, especially in the Asian-American communities. She believes that being part of a community (like Cervivor) that understands and cares, along with having strong faith and a positive mindset, has gotten her through the many challenges in her cancer journey.