Cancer Disparities

Pride and Prevention: Breaking Down Barriers to Cervical Cancer Care for LGBTQIA+ Communities

By Kyle Minnis, Cervivor Communications Intern

Today, an estimated one million LGBTQIA+ cancer survivors live in the United States—a fraction of the nation’s nearly 19 million survivors. But behind that number lies an alarming reality: Queer and trans individuals face higher rates of late-stage diagnoses, limited access to screening, lower insurance coverage, and deep-rooted mistrust in the medical system. Experts warn these disparities may worsen before they improve.

At Cervivor, Inc., we believe every cervix matters. This Pride Month, we’re shining a light on the barriers queer and trans individuals face in accessing cervical cancer care—and how we can work together to break them down. (Missed part one of the series? Read the powerful stories of four courageous Cervivor Pride community members.)

Mounting Setbacks in LGBTQIA+ Cancer Care Access

Over the past year, federal datasets on sexual orientation and gender identity (SOGI) have quietly been removed from the Centers for Disease Control and Prevention (CDC) and U.S. Food and Drug Administration (FDA) websites, setting back critical research and advocacy efforts. Carter Steger, Vice President at the American Cancer Society Cancer Action Network (ACS CAN), calls the change “unclear and alarming.”

The setbacks go beyond data. Dr. Mandi Pratt-Chapman, a leading LGBTQIA+ health researcher at the George Washington University Cancer Center, reports that all National Institutes of Health (NIH)-funded LGBTQIA+ research grants—including her own—have been terminated. “We can’t just flip the switch back on,” she warns. “The infrastructure has already been dismantled.”

Carter Steger
Dr. Mandi Chapman-Pratt

At the same time, state-level legislation is emboldening discrimination in healthcare. The recent U.S. Supreme Court ruling in United States v. Skrmetti upheld states’ rights to deny gender-affirming care to minors, raising broader concerns about refusals of service.

“Before this immense backlash on LGBTQIA+ civil rights, we were finally making progress,” says Dr. Pratt-Chapman. “As a society, we collectively said—you are part of our community! Now, that message of inclusion and protection—indeed, actual protection—is being torn away in a deliberately hurtful and terrifying way.”

Safe Spaces Are Shrinking—and Medical Mistrust Is Growing

According to ACS CAN’s latest Survivor Views survey, 58% of LGBTQ+ cancer patients fear the current political climate could directly impact their access to care. Nearly half worry that providers may consider it “too risky” to treat them due to state laws.

Cervivor Pride lead Karen North puts it bluntly: “I’m scared. They’re coming for people like me—my identity, my rights.”

Cervivor Ambassador Gilma Pereda, whose adult daughter is a trans woman, shares similar fears: “Being a transgender young woman and neurodivergent is a very bad combo in today’s political climate. I’m terrified. We have a plan B—moving to Mexico City, where I’m from, for universal healthcare. She’s not on board yet, but it’s our last resort.”

Karen with her “chemo blanket” during treatment.
Gilma after shaving her head during a metastatic cancer recurrence.

This anxiety is becoming more common. “People are trying to move to blue states or Europe,” says Dr. Scout, Executive Director of the National LGBT Cancer Network. “We’re watching our safe spaces and experts disappear before our eyes.”

Even in well-meaning systems, barriers persist. Intake forms often lack inclusive options for sexual orientation and gender identity. Most medical students receive fewer than five hours of LGBTQIA+ health education in their entire training. And in response to political pressure, some hospitals have quietly removed LGBTQIA+-affirming content from their websites to avoid backlash or funding threats.

Dr. Scout

The result? Deepening medical mistrust. “For too many of us, the core issue is not knowing whether a provider will treat us with dignity,” says Dr. Scout. “The simple fix is for more providers to make that clear—somewhere visible—so we can get past the mistrust and through the door.”

This fear often leads to skipped care. Lesbians without trusted OB-GYNs are less likely to get screenings like Pap tests or mammograms. Transgender men may avoid gynecologic care entirely.

But small signals of safety can make a big difference. A name tag with pronouns. A “You’re Safe With Me” sign. According to Dr. Scout, LGBTQIA+ patients are nearly seven times more likely to rate their care as “very good” when they see visible signs that their identity will be respected. 

Gilma highlights “small but meaningful changes” she’s seen at her healthcare provider in progressive California. “The clinic I go to used to be called the ‘Women’s Clinic,’ but now it says ‘Gynecology and Obstetrics,’” she says. (The word “women” can be triggering for many trans men and LGBTQIA+ patients.) “I also remember a sign at reception that said something like, ‘If you don’t feel comfortable waiting in this room, please let us know and we’ll move you.’ I wish I had taken a picture—it really stood out to me.”

The Financial Cost of Care

For many queer and trans people, even seeking healthcare comes with roadblocks—starting with insurance. According to the Cancer Network, LGBTQ+ individuals are less likely to have health coverage, often because employers don’t extend benefits to unmarried domestic partners. This gap is even wider for transgender individuals, who have the lowest insurance coverage rates of any group.

Even with insurance, coverage is not guaranteed. Transgender patients may be denied access to gender-relevant care—such as Pap tests for trans men with a cervix—if it doesn’t match the gender on their insurance card. These mismatches can delay or deny vital screenings.

Gilma knows just how rare affirming, comprehensive care can be. “We’re very privileged to have Kaiser [in the Bay Area],” she says, noting how her daughter was able to update her name and gender in the system and receive respectful care. “That’s not the case everywhere.”

Women in same-sex relationships face similar challenges. They’re less likely to have a regular healthcare provider, often citing cost as a barrier—leading to lower screening rates for mammograms, Pap tests, and colonoscopies, which raises the risk of late-stage diagnoses.

Government safety nets like Medicaid help fill these gaps, but even they’re under threat. “When I got cervical cancer, I was on Medicaid,” says Karen. “That’s what allowed me to get treatment. If Medicaid cuts continue—if the Breast and Cervical Cancer Early Detection Program goes away—that’s terrifying. That program saved my life.”

Karen is referring to the 30-year-old public health initiative that has provided life-saving screenings to women with low incomes and limited insurance. Now, that vital lifeline is at risk. Dr. Pratt-Chapman echoes the concern, warning that proposed cuts could also eliminate federal cancer registries—undermining efforts to prevent cancer and catch it early.

Despite these threats, a legal win offers a glimmer of hope. In the recent APHA v. NIH case, U.S. District Judge William G. Young of Massachusetts deemed the Trump administration’s termination of hundreds of NIH research grants “arbitrary and capricious,” and therefore “void and illegal.” He stated these cuts “represent racial discrimination and discrimination against America’s LGBTQ community,” ordering the restoration of nearly $3.8 billion across 367 affected projects for the time being.

Building a New Kind of Safety Net

Even as the landscape grows more fractured and unpredictable, people are still planting new flags—big, bold, rainbow ones.

Organizations like ACS CAN and the Cancer Network are strongly advocating for inclusive legislation. This includes the Health Equity and Accountability Act (HEAA), which would require the collection of data on sexual orientation and gender identity (SOGI) in federal health surveys, and the Equality Act, which would explicitly ban discrimination based on sexual orientation, gender identity, and sex characteristics across all sectors, including healthcare.

ACS CAN’s LGBTQIA+ and Allies Engagement Group

These policy fights are being matched by boots-on-the-ground action. ACS CAN’s LGBTQIA+ & Allies Engagement Group supports strategy development, educates advocates, and ensures queer visibility in campaigns and Pride events. In 2025, the organization will appear at more than 60 Pride events across 32 states. 

The group also recently hosted a virtual screening of Trans Dudes with Lady Cancer, a powerful documentary following two transmasculine individuals navigating breast and ovarian cancer care, sparking dialogue about gender, inclusion, and systemic change.

Training efforts are also expanding. GW Cancer Center’s TEAM training offers free, online education for healthcare providers looking to improve LGBTQIA+ cancer care, and a new version, TEAM SGM, aims to provide a deeper dive for oncology-specific scenarios. The Cancer Network also provides Welcoming Spaces training, helping providers build physical and emotional environments where patients feel respected, affirmed, and safe.

Take Action: Stand With the LGBTQIA+ Cancer Community

This is a critical moment. Cancer doesn’t discriminate, and neither should the systems designed to help us survive it.

The challenges are real, but they are not insurmountable—and they are not going unnoticed.

“I want to be in that group of people,” says Dr. Pratt-Chapman. “The ones history celebrates for standing up when it got hard. Hate shrinks the world. Love is expansive. Love brings life.”

What can you do?

  • Contact your elected officials today to protect and expand funding for cancer research, Medicaid, and programs like the Early Detection Program. Take action at act.fightcancer.org.
  • Encourage local clinics and hospitals to provide LGBTQIA+ cultural competency training. Providers can join programs like TEAM or Welcoming Spaces.
  • If you’re a patient or survivor, share your story—you never know who needs to hear it.

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.