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.”

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.”

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.

It’s a Family Affair: How Advocacy Begins at Home for Cervivor Community Members

Cervical cancer advocacy often starts with a personal story—but it doesn’t end there. For many in the Cervivor community, it begins at home, with children watching, learning, and eventually joining the mission to end cervical cancer.

For Anne Zajic, a Stage 1B2 cervical cancer survivor and mom of three, advocacy has become a true family affair. Diagnosed in 2016 when her daughters were still very young, Anne leaned into the Cervivor community for strength and purpose. Today, she’s a Cervivor Ambassador, and her daughters—Clara, 11, and twins Julia and Katie, 9—are right beside her as Junior Ambassadors.

A family’s love for baking inspired their summer-long fundraiser to benefit Cervivor.

“They’ve grown up with advocacy as part of their lives,” says Anne, whose efforts include volunteering with the American Cancer Society Cancer Action Network (ACS CAN) and helping secure gubernatorial proclamations in Kansas recognizing both HPV Awareness Day and Cervical Cancer Awareness Month. “They understand why we talk about HPV, screenings, and prevention—they’ve seen what this disease can do.”

Why It Matters

Family involvement in health education and advocacy can make a measurable impact.

According to the Community Preventive Services Task Force, family-based interventions can increase preventive screening rates by up to 35%. And when parents talk openly about HPV and cancer prevention, their children are significantly more likely to be vaccinated.

These conversations are critical—especially when so many still don’t realize cervical cancer is largely preventable. In 2024, more than 13,800 women in the U.S. were expected to be diagnosed with the disease, often without knowing the role HPV plays in causing it, according to the American Cancer Society (ACS) and the Centers for Disease Control and Prevention (CDC), respectively.

“We can’t keep letting people face this in silence,” says Anne. “The more families talk about it, the more lives we can save.”

Empowering the Next Generation

This summer, Anne and her daughters are turning cupcakes and cookies into action with a fundraiser benefiting Cervivor. Inspired by Julia’s idea to spend more time together while giving back, the family is popping up at local events, sharing their story—and plenty of sweet treats.

“Julia said, ‘Why don’t we do a bake sale?’ That was all I needed to hear,” Anne recalls with a laugh. “Baking has always been something we love doing together. Now, it’s become a way to raise awareness.”

Alongside the goodies, the girls will also be selling handmade jewelry crafted with love and purpose. “Every cookie, every cupcake, and every earring is a step toward supporting Cervivor’s mission to end cervical cancer,” says Anne.

For Cervivor Founder and Chief Visionary Tamika Felder, advocacy has long been a way of life—even before it became personal after surviving cervical cancer in her twenties. Raised in a family rooted in public service, she spent her childhood volunteering for causes and through her church. 

Cervivor founder Tamika (far left), her son, and Cervivor community members gathered in Cleveland last year to raise awareness. Kadiana, whose daughter also helped out, is third from left.

Now, her son Chayton often joins her at Cervivor events, learning the power of speaking up and giving back. At last year’s Communities of Color outreach effort in Cleveland, they were joined by one of her goddaughters, Ming, and Cervivor Ambassador Kadiana Vegee’s daughter, Aurianna—showcasing how the next generation is stepping into advocacy alongside their mothers and mentors.

“Children aren’t just watching us—they’re learning from us,” says Tamika, recalling how her goddaughter Kennedy, then in elementary school and now a college student, once held a Giving Tuesday bake sale to support Cervivor. “When a child sees you stand up for something that matters, it stays with them. That’s how movements grow—across generations.”

Tamika’s goddaughter, Kennedy, hosts a bake sale in 2019, donating a percentage of proceeds to Cervivor, Inc. to help women with cervical cancer.

One of Cervivor’s bright lights, Becky Wallace, tragically passed away in 2021—but her legacy continues to shine. In 2020, during the height of the pandemic, her tween daughters organized a heartfelt neighborhood bike-a-thon, raising over $2,000 in support of Cervivor. Their inspiring efforts, captured in this moving video, remind us that it’s never too early to stand up for a cause you believe in—especially when it’s your mom’s life on the line. (Warning: You might need tissues.)

Get Your Family Involved 

Whether it’s hosting a bake sale or a bike-a-thon, traveling to awareness events, or simply having honest conversations around the dinner table, Cervivors are teaching their children that advocacy is a shared responsibility—and a powerful gift.

“This isn’t just my story anymore,” says Anne. “It’s my daughters’ story, too. Our fundraiser is just one example of what advocacy can look like. You don’t have to start big—just start somewhere. Whether it’s baking cookies, creating art, or hosting a virtual event, your passion can fuel change.”

Support Cervivor’s Mission!

Want to get your family involved in cervical cancer advocacy? Have a fundraising idea? We’d love to hear from you! Email us at [email protected] and let’s turn your creativity into support for survivors.

And don’t forget to check out Tell 20, Give 20—Cervivor’s awareness and fundraising campaign celebrating 20 years of impact. We are grateful for every dollar donated that helps us get closer to ending cervical cancer.