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.

Black Communities and Cervical Cancer: Breaking the Silence for a Healthier Future

Cervical cancer affects thousands of women in the United States each year, hitting Black communities particularly hard. Of the estimated 13,360 new cases in 2025, the American Cancer Society projects 2,180 will be in Black women, with 610 deaths – a higher incidence rate than their share of the general population. Black women are 19% more likely to develop cervical cancer and nearly 65% more likely to die from it than white women. Systemic health disparities, medical mistrust, and cultural barriers both create and widen this gap. 

While other groups – such as Indigenous women, Latinas, and LGBTQ+ individuals – face similar challenges, Black women experience them at disproportionately higher rates. Kimberly Williams knows this firsthand. 

Kimberly’s Story

A headshot of Kimberly Williams, who has long black hair and is wearing a teal turtleneck sweater. She looks directly at the camera with a slight smile.
Kimberly Williams

“I had never heard of cervical cancer before. I thought I was the only person in the world with it,” recalls the Houston mother of two, who was diagnosed with cervical cancer in February 2018 after visiting a doctor for irregular menstrual cycles in late 2017. She felt blindsided, like many who receive a late-stage diagnosis – a trend that is on the rise, with Black women having the highest number of these cases.

Kimberly was taught to keep family matters private, especially health issues. “Growing up, my mother would say, ‘What goes on in the house stays in the house.'” But staying silent only made her feel more isolated.

After a radical hysterectomy in March, her surgeon informed her that all of the cancer wasn’t gone and she would need radiation and chemotherapy. When her insurance repeatedly denied PET scan authorization – an imaging test crucial for assessing her condition – she became discouraged.  “After a couple of months, I thought, ‘Forget it. I’m fine. I’m healed,’” she shares in this new CervivorTV video.


But she wasn’t fine. A recurrence in 2019 forced Kimberly to undergo treatment. Her oncologist’s dismissive approach almost made her walk away again.

“She just said, ‘You’re starting chemo tomorrow,’ without explaining anything. I had to say, ‘Talk to me like I’ve never had cancer before,’” says Kimberly, who holds a master’s degree and has been a social services worker for over 20 years. “Some people would stop their treatment right there. Not being respected enough to have things explained properly is a major barrier to care.” 

Fortunately, Kimberly’s story has a happy ending. Now cancer-free, she is committed to speaking out to help others avoid the struggles she faced.

“As a Black woman, I realized that other Black people listen to other Black people. That’s just how it is,” says Kimberly, who now serves as the Chief Diversity, Equity, and Inclusion (D.E.I.) Officer at Cervivor, Inc. and was recently named to the Steering Committee of the American Cancer Society National Roundtable on Cervical Cancer. “I had to make the hard decision to share my story.” 

‘Holes’ in the Healthcare System

Kimberly’s experience underscores the need for shared stories to drive change in cervical cancer outcomes. Yet, significant healthcare disparities and barriers to care persist. 

Despite recent reports that some public health officials are being discouraged from using terms like “health equity” and “disparities,” Cervivor Founder and Chief Visionary Tamika Felder warns against brushing aside the research fueling life-saving progress. “Health equity is more important than ever. Ignoring the reasons behind disparities only makes the gaps wider,” says Tamika, a member of the National Cancer Advisory Board (NCAB) and co-chair of the National HPV Vaccination Roundtable. “We know where the inequities exist and why. Trying to erase or undermine the incredible work being done to close these gaps is deeply troubling. If we continue down this path, it will be even harder to repair.”


Dr. Lynn Richards McDonald, Clinical Program Director for cervical cancer screening at Johns Hopkins Hospital, is a leading expert on health equity. She has dedicated her career to advancing it through advocacy, collaboration, and community outreach. Dr. McDonald identifies critical “holes” in the healthcare system that contribute to higher cervical cancer mortality rates in the Black community: “These ‘holes’ – cost, lack of knowledge, embarrassment, clinical bias, cultural differences, and fear – prevent timely screenings and treatment,” explains Dr. McDonald, who spoke about strategies for inclusive cervical cancer care at last month’s Cervical Cancer Summit Powered by Cervivor, Inc.

Key Disparities in Diagnosis and Treatment

One striking paradox: Although Black women have higher rates of initial Pap testing (64% in the past two years compared to 59% of white women, 60% of Hispanic women, and 57% of Asian women), they still face disproportionately high cervical cancer rates. This disparity is largely due to lower follow-up rates after abnormal Pap results and later-stage diagnoses. A 2020 systematic review of 34 studies involving over 1.2 million patients found that even a three-week delay in cancer treatment, including cervical cancer, significantly impacts survival rates.

Dr. Andrea Stubbs, Administrative Director for the St. Jude HPV Cancer Prevention Program, emphasizes how poor communication by medical professionals can affect follow-up after an abnormal Pap or positive HPV test: “Patients of color often receive vague explanations, like ‘dirty cells’ or ‘a little virus,’ which downplay the urgency of follow-up. For many, missing work for appointments means losing money, adding another layer of difficulty.” 

Julia Brown, MPH, and Andrea Stubbs, MPA, of St. Jude accept the Cervivor Champion Award for their dedication and contributions to ending cervical cancer.
St. Jude Children’s Research Hospital recently received the Cervivor Champion Award for its dedication to ending cervical cancer. Dr. Andrea Stubbs (on the right) and Julia Brown accept the award on behalf of the organization at the 2025 Summit.

Where people live and insurance coverage affect outcomes, too. In 2022, Human Rights Watch reported that rural Black women face a cervical cancer rate nearly 50% higher than rural white women and are more likely to be diagnosed at later stages with lower survival rates. A 2023 study also confirmed that Black women have 18% higher odds of receiving a advanced-stage diagnosis compared to white women, largely due to health insurance access. 

When it comes to enrollment in cutting-edge clinical trials, the gap is even wider – less than 5% of participants are Black, limiting how applicable the results are to diverse populations. Barriers such as travel distance to research centers and a lack of transparency in trial processes add to this underrepresentation.

“Many Black women hesitate to participate in clinical trials due to distrust of the medical community,” explains Tiffany Drummond, a clinical research expert who spoke on the topic at the recent Summit. “Patients are smart, but they don’t know what they don’t know until the research and data are shared with them. Why can’t that information be shared?”


Cervivor Ambassador Gwendolyn “Gwen” Jackson, who was diagnosed with Stage 4 cervical cancer in 2020, credits clinical trials for extending her life. “I’m still alive because of clinical trials,” says the Texas grandmother of three. However, she initially had concerns about participating: “In the African-American community, there’s a deep-rooted distrust of clinical trials,” she shared with The Patient Story last December. “It goes back to when they were using African Americans for experiments and really being the ‘guinea pigs.’”

Medical Mistrust: A Barrier Rooted in History

Gwen’s insight on the roots of medical mistrust in the Black community is spot-on. As Dr. Wendy Kline shares in the latest Cervivor Podcast about her new book Exposed: The Hidden History of the Pelvic Exam, the gynecological abuse of Black women in America dates back over 200 years. It began with James Marion Sims, often called the “father of modern gynecology,” and has persisted through generations.

“The origins of gynecology date back to the 19th century with the invention of the speculum,” Dr. Kline, a Historian of Medicine at Purdue University, explains, referring to the familiar tool used for pelvic exams. “Sims built gynecology on the bodies of enslaved women, three of whom underwent multiple procedures without anesthesia. These non-consensual experiments perfected techniques that defined the field, raising ongoing questions about consent and ethical treatment.” She adds, “Although not every gynecologist is abusive, the history is inherently problematic.” (Read more about the three enslaved women – Anarcha, Betsy, and Lucy – and what they endured in the name of “science” in this powerful retelling by Women & the American Story.)


Another example is Henrietta Lacks, a now-celebrated Black woman who sought treatment at Johns Hopkins in 1951 for abnormal vaginal bleeding. A tobacco farmer and mother of five, she was admitted to the “colored ward,” as a recent St. Jude Research article recounts. After eight months of radiation treatment, Henrietta died at 31, but her cancer cells were taken without consent, leading to the development of HeLa cells that advanced cervical cancer research. (To learn more about Henrietta’s impact on medical ethics, check out last month’s Cervivor Podcast with her great-granddaughter, Veronica Robinson, and Johns Hopkins’ Dr. McDonald.)

The article summarizes, “The medical mistrust generated by historical mistreatments has been passed down over time. Avoiding regular gynecological care makes Black women more likely to be diagnosed with advanced cervical cancer, decreasing survival.”

Breaking the Cycle: How Awareness Can Save Lives

St. Jude highlights another critical factor contributing to higher cervical cancer mortality rates among Black women: lack of awareness about the human papillomavirus (HPV) and the HPV vaccine, in particular. Data from the Office of Minority Health (OMH) indicates that in 2022, non-Hispanic Black females aged 19 to 26 were 20% less likely to have ever received an HPV vaccine than non-Hispanic white females in the same age group.

The Centers for Disease Control and Prevention (CDC) reports that vaccine uptake among all children is still quite low, with only 38.6% of children aged 9 to 17 receiving at least one dose in 2022. While there is no significant statistical difference between Black and white children, health insurance status is a key factor. A February 2024 CDC report found that children with private health insurance (41.5%) were most likely to have received one or more HPV vaccine doses, compared with children with Medicaid coverage (37.0%), other government coverage (30.2%), and those without insurance (20.7%). Despite initial gains in coverage from the Affordable Care Act (ACA), Black people remain 1.5 times more likely to be uninsured than white people, according to a February 2025 report looking at health coverage by race and ethnicity between 2010 and 2023.


But awareness and access aren’t the only barriers. As with avoiding gynecological check-ups or low participation in clinical trials, medical mistrust contributes to some Black parents’ hesitancy or refusal to vaccinate their children against HPV. A 2023 Journal of Pediatric Health Care study led by Ariel Washington, Ph.D., MSSW, of the Barbara Ann Karmanos Cancer Institute found that concerns ranged from vaccine safety to the recommended age, noting that, “Some believed their children were being offered the vaccine at a younger age than most because the health care provider believed the child would become sexually active earlier.” 

In an article about the study on the cancer institute’s website, Dr. Washington shared, “One recurring theme was that parents often felt unheard and unable to ask questions about HPV vaccination.” The study reinforces St. Jude’s recommendation that clear, direct communication from healthcare providers is key to increasing vaccination rates in Black communities.

For Black cervical cancer survivors like Kimberly, who remembers not knowing anything about HPV or cervical cancer when she was diagnosed, spreading awareness in the Black community is imperative. “I realized I had to make sure others knew about the resources out there to prevent cervical cancer: screening and vaccination. By keeping quiet, we risk lives.”

If you feel unheard by your medical providers, Gwen offers this advice: “When you go to the doctor’s office, they are working for you. You are not working for them. So, it’s okay to use your voice. If something feels wrong, speak up. If there’s a treatment you don’t want, say that.”

Find Your Community and Take Action

Most importantly, you don’t have to go through this alone. For many, finding community is life-changing. Kimberly describes discovering Cervivor as a turning point in her recovery. Gwen was surprised by the sense of solidarity she found: “I thought it was just Black women who went through this. But now, being in the teal-and-white community, the Cervivor community, we chat with each other. It’s all of us, as women.”

Cancer survivor Bikira Radcliffe, who founded United Colors of Cancer in 2020 to ensure optimal cancer care for Black, Indigenous, and People of Color (BIPOC), also highlights the growing role of faith-based organizations in supporting mental health and cancer care in communities of color. “In Black and Brown communities, mental health is only now becoming a common discussion,” she shared during a panel at the Summit. “Many people turn to churches and similar institutions for support, and we’re seeing these organizations begin integrating cancer care and mental health resources into their missions.”

Esra Urkmez Uzel, Lilly Stairs, and Bikira Radcliffe speak on a panel about patient advocacy and cancer burnout prevention at the 2025 Cervical Cancer Summit. Bikira, wearing a bright pink shirt and matching head wrap, is seated on the left.
From left, Esra Urkmez Uzel, Lilly Stairs, and Bikira Radcliffe discuss patient advocacy and preventing cancer burnout at the 2025 Summit.

Ultimately, the story of cervical cancer in the Black community isn’t just about statistics – it’s about lived experiences that highlight the urgent need for change. At Cervivor, we are committed to ending cervical cancer through:

  • Education: Providing accurate, accessible information on HPV, cervical cancer risks, and the importance of regular screenings.
  • Advocacy: Amplifying voices to break the stigma and silence surrounding these issues.
  • Empowerment: Encouraging individuals to take charge of their health by advocating for themselves, asking questions, and demanding timely, respectful care.

Consider these ways to connect with other Black cervical cancer patients and survivors through Cervivor:

Cervivor community members of color, wearing Cervivor Cares shirts, smile together at the 2024 Communities of Color Retreat in Cleveland, OH. Tamika Felder has her arm around Gwen Jackson.
Participants at Cervivor’s 2024 Communities of Color Retreat in Cleveland, OH.
  • Communities of Color Retreat – A training to support and empower individuals from diverse communities who have been impacted by cervical cancer, the retreat aims to provide a platform for sharing experiences, connecting with others, and promoting health equity and awareness about cervical cancer. Learn more about the most recent retreat.
  • Cervivor Noir – A private group reserved for cervical cancer patients and survivors who identify as African American or Black. Join today and connect with others in the community!
  • Black Cervix Chat – An event that aims to bridge gaps in healthcare access and provide a supportive space for discussions related to cervical health, screenings, and general well-being for those in the Black community. Watch now on CervivorTV!
  • Cervivor Stories – Visit the Cervivor website to read the testimonies of others impacted by cervical cancer and share your story with an easy-to-follow template. 

By advocating for awareness, equitable healthcare, and open conversations, the Black community can break the silence and move toward a healthier cervical-cancer-free future.