Health Equity

Every Cervix Matters: LGBTQIA+ Voices in the Fight Against Cervical Cancer

For queer and trans people facing cervical cancer, the challenges go far beyond the diagnosis. They’re compounded by systemic bias, stigma, and a long history of being overlooked or mistreated in healthcare. These barriers are only growing amid ongoing threats to LGBTQIA+ health equity. (Learn more about these challenges—and the work to overcome them—in part two of our Pride Month series. Stay tuned for Monday).

As Dr. Scout, a trans man and Executive Director of the National LGBT Cancer Network, explains, “It’s getting more dangerous to be openly queer in this country right now.” For many, staying safe means staying silent, often at the cost of their health. 

That’s why this Pride Month, Cervivor is proud to uplift the voices of Karen North, Anjelica Butcher, Gilma Pereda, and Pixie Bruner—members of our community whose experiences reveal both the challenges and courage of queer cervical cancer survivors. Their stories remind us that behind every statistic is a person who deserves to be seen, heard, and cared for.

Challenging Assumptions: Karen’s Advocacy

Karen, a former nurse from Liberty, Missouri, lives with her longtime partner, who shares the same first name, Karen “Murph” Murphy. Their relationship grew gradually after Karen’s 10-year marriage ended in 2001—a union that brought her a son, Matthew, and helped her recognize her identity as a lesbian. But fear of judgment lingered. “When I was still dealing with custody issues,” she recalls, “I’d deny my relationship with Murph in public if I had to.”

Karen North

By the time she was diagnosed with breast cancer—and then cervical cancer 18 months later in January 2016—Karen had stopped worrying about court rulings or public opinion. Instead, she leaned on her medical background to stay focused on treatment, not judgment. “I didn’t care what anyone thought. If I felt judged, I’d call it out and find another provider,” she says, adding with a laugh, “I can be a KAREN, in all caps, if I need to be.”

Karen discovered Cervivor in 2017, but it was Cervivor School in 2019 that truly “lit a fire” in her. Today, she leads the Cervivor Pride group and is a vocal advocate for inclusive language. “One of my biggest pet peeves is when people assume everyone with a cervix identifies as a woman,” says Karen.

Conversations with her transgender friend Zeke—who navigates gynecological care as a male-identifying person—have shaped her approach. Karen now avoids euphemisms like “coochie cancer,” opting instead for medical terms or inclusive phrases like “below-the-belt cancer,” which more accurately encompass HPV-related cancers, including cervical, vaginal, vulvar, penile, and anal.

And she credits her Every Cervix Matters hoodie for sparking meaningful dialogue. “A woman came up to me at a restaurant and said, ‘That’s great. Every cervix does matter.’ I got goosebumps,” Karen recalls. “It doesn’t center gender—it centers anatomy and health.”

Transforming Trauma: Gilma’s Awakening

Cervivor Ambassador Gilma, a graphic designer in California, echoes Karen’s message: “It’s called the human papillomavirus—not the women’s papillomavirus,” she emphasizes. “It doesn’t matter your sexual orientation or your gender.” 

This perspective led her to vaccinate her then-12-year-old child—now a trans woman—shortly after her cervical cancer diagnosis in 2016. “At her annual checkup, the doctor mentioned the vaccine could prevent cervical cancer,” Gilma recalls. “I said, ‘I don’t care if it’s for girls or boys—whatever it is, my child needs it.’”

Gilma Pereda

Gilma’s cervical cancer journey unfolded alongside a profound personal awakening. Raised in a traditional Catholic household in 1970s Mexico, she followed expected norms—marrying and having a child—despite always feeling “different.” After divorcing at 36 and supporting her child through gender exploration, she began to reflect on her own identity. “Cervical cancer changes your sexual life—a lot. So I stopped worrying about that,” she says. “But it gave me the freedom to express my gender differently.”

A metastatic recurrence at 47, which led her to shave her head after a lifetime of long hair, marked a turning point. “I’ve seen so many women devastated by hair loss—hair carries so much of our identity,” she says. “But for me, I was so happy.” Soon after, she came out to her parents. “I was done trying to fit a mold. Now, I feel comfortable being androgynous.”

Gilma’s advocacy stems from a deeply traumatic experience. During a painful, anesthesia-free cryotherapy procedure to remove precancerous cervical cells, a doctor’s inappropriate touch triggered memories of childhood sexual abuse, causing her to delay treatment for a year. “By that time, it was cancer,” she states.

She credits Cervivor—and years of advocacy training and witnessing other survivors doing “very, very difficult things”—with helping her transform that pain into purpose. Gilma has since shared her story in Spanish-language publications and on a bilingual panel addressing sexual abuse in medical settings, an issue that disproportionately affects her community. “I don’t like the spotlight,” she confides. “But I’ll do it again and again to help prevent this from happening to others.”

Confronting Disparities: Anjelica’s Fight

Anjelica, a small business and nonprofit owner in Baltimore, faced her cervical cancer diagnosis already carrying the weight of multiple identities: Black, queer, caregiver—and often the only one like her in the room. “My cultural background gave me strength and resilience,” she says, “but it also came with silence around topics like sexuality and cancer.”

She quickly saw how deeply healthcare disparities run. “I thought I had great insurance—until I found out it didn’t qualify as catastrophic coverage,” she recalls. Denied care for over a month, she had to pay out-of-pocket to start treatment. “It broke my heart realizing the only reason I made it through was because I could afford to. What happens to the people who can’t?”

Anjelica Butcher

For Anjelica, who’s identified as queer since age 13, her cervical cancer diagnosis also brought a realization that “hit hard.” “I was never offered the HPV vaccine—likely because of assumptions about my sexuality,” she shares, referencing persistent stigma and misinformation that overlook how HPV is transmitted: through intimate skin-to-skin contact, not just penetrative sex.

While most of her care team was respectful, certain invasive treatments—like internal radiation—left her feeling unseen and violated. Although the plan was eventually adjusted, the damage had already been done. One provider, referred by her primary doctor, made a lasting difference. “They taught me how to advocate for myself as a Black woman. Most people don’t know how, and it shouldn’t fall solely on us.”

Her support system—her mom, dad, partner, and chosen family—kept her grounded. And with help from a “phenomenal” oncological therapist, she began processing the emotional toll that surfaced after remission. “I didn’t realize how badly I needed community until then.”

Now active in Cervivor and the Ulman Foundation, supporting young adults impacted by cancer, Anjelica shows up in survivor spaces not to seek answers, but to offer hope. “Healing is possible. Remission doesn’t mean going back—it can mean becoming someone even stronger.”

Poetic Resilience: Pixie’s Voice

Pixie, a poet and Cervivor Ambassador from Snellville, Georgia, knows firsthand how gaps in care impact LGBTQIA+ communities. At 26, she was treated for cervical dysplasia, but not tested for HPV. “I wish I had known then what I know now,” she says.

Living with Ehlers-Danlos syndrome and type 1 diabetes, Pixie had always been vigilant about her health. So when she was diagnosed with cervical cancer at 50—with no symptoms—it came as a shock. “I felt numb, contaminated,” she recalls, struggling with the stigma of an STI-related cancer. She underwent a radical hysterectomy and bilateral oophorectomy. “It was basically the ‘Everything must go! Going out of business sale’ surgery,” she’s described.

Pixie Bruner

Living in rural Georgia, Pixie chose not to disclose her sexual orientation. “When I asked a nurse, ‘What do you define as sex here?’ the answer didn’t reflect my lived experience,” she says. After treatment, a conservative therapist dismissed her concerns about sexuality and body image. “I was reduced to parts—told they were irrelevant because of chemopause and their loss. That I should be grateful to be single. But I was still a sexual being, still human,” she says. “I fired that therapist.” 

Cervivor became her lifeline—offering connection, care packages, and space to heal. Her “fairy godmothers,” a married couple, delivered warm meals and encouragement. “Friends are my chosen family and were with me during the long recovery,” she says.

Today, she advocates for inclusive HPV education through Cervivor’s LGBTQIA+ community, and her award-winning poetry—including “Her Kind” and “Medusa With Cancer”—explores how illness reshapes identity. “Cervical cancer took ‘femininity’ and gender away from me in some ways,” she writes. “But my words helped give something back.” 

A Call to Action for Equitable Care

While Karen, Gilma, Anjelica, and Pixie each have unique stories, they share a common goal: a more just and inclusive future.

“I want a world where cervical cancer isn’t common,” says Pixie. “Where HPV vaccination is standard, no one is judged for having the ‘wrong’ cancer, self-care is valued, and early detection is affordable and accessible.”

At Cervivor, that vision means making space for everyone. As Community Engagement Liaison Morgan Newman, MSW, shares: “We stand with our cervical cancer community to demand protection and empowerment through prevention. As someone who’s faced this disease, I know the power of vaccines and the importance of accessible healthcare.”

Cervivor Ambassadors, Ann Marie Hartung and Kellie Defelice, tabling at a Pride event in Massachusetts.

If you or someone you know is part of the LGBTQIA+ community and impacted by cervical cancer, join the Cervivor Pride group (for more information, contact Karen), attend Creating Connections virtual meetups, or take part in local or national outreach.

Support Cervivor’s mission to end cervical cancer by contributing to the ongoing Tell 20, Give 20 awareness and fundraising campaign—honoring 20 years of advocacy, education, and survivorship.

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.