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.

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.