At Cervivor, Inc., every month is Women’s Health Month. But this May, we’re taking the opportunity to spotlight a critical public health issue that disproportionately impacts women: HPV-related cancers.
HPV, or human papillomavirus, is an extremely common virus. According to the Centers for Disease Control and Prevention (CDC), approximately 85% of people will be exposed to the virus at some point in their lives. While many HPV strains are essentially harmless, high-risk strains are responsible for more than 37,000 new cancer cases each year in the U.S., including about 21,800 cases in women and 16,000 in men.
These cancers include vaginal, vulvar, anal, oropharyngeal, penile, and cervical cancer—what Cervivor is dedicated to eliminating. Cervical cancer remains the most common HPV-related cancer in women, with more than 11,000 new cases diagnosed annually.
The good news? Nearly all HPV-related cancers are preventable with tools like vaccination, regular checkups, and early treatment. Just last month, National Cancer Institute researchers reported “phenomenal” new data that a single dose of the HPV vaccine is just as effective as the two doses currently recommended for people aged 9 to 25!
This recent CDC infographic illustrates how effective the HPV vaccine can be in preventing over 90% of related cancers including cervical cancer.
“Knowledge is power—but it’s only the start,” says Tamika Felder, Cervivor’s Founder and Chief Visionary. “Preventable cancers like cervical cancer are on the rise because of complacency, stigma, and misinformation. Up-to-date cervical screenings have dropped over the past two decades, and HPV vaccine uptake was ‘flat’ from 2021 to 2023,” she says, citing an alarming recent report from the American Cancer Society. “The time to prevent suffering—and save lives from cervical and other HPV-related cancers—is now.”
The National HPV Conference: A Gathering of the Minds
Fortunately, Tamika and Cervivor aren’t the only ones prioritizing women’s health and tackling the ongoing challenges of HPV-related diseases. Over 400 attendees gathered with the same mission at the recent National HPV Conference in Indianapolis from April 15 to 17, 2025. Bringing together leading experts, healthcare professionals, researchers, policymakers, and survivors, the conference aimed to facilitate networking, collaboration, and resource sharing like “never done before” in the U.S.
The National HPV Conference unites leaders toward their shared mission.
Representing Cervivor, Tamika took part in a panel discussion moderated by Dr. Rachel Katzenellenbogen and included other HPV cancer and disease survivors, including recurrent respiratory papillomatosis survivor, Kim McClellan, anal cancer survivor Lillian Kreppel and tonsil cancer survivor Jason Mendelsohn, that underscored the human impact of HPV-related cancers. Later, she and Community Engagement Liaison, Morgan Newman, MSW—a metastatic and recurrent cervical cancer survivor—co-presented with leading global expert and author Dr. Linda Eckert in a session titled “Beyond the Data,” highlighting the power of personal narratives in advocacy.
Cervivor’s founder, Tamika, shared her experience and expertise alongside other HPV cancer survivors, emphasizing the importance of the patient voice.
A few other program highlights from the National HPV Conference:
Keynote Addresses: Dr. Susan Vadaparampil, Associate Center Director of Community Outreach, Engagement, and Equity at Moffitt Cancer Center, delivered a keynote about the importance of advocacy and gave a special shoutout to the Cervivor community. Dr. Michelle Fiscus, Chief Medical Officer for the Association of Immunization Managers and Co-Chair of the National HPV Vaccination Roundtable, also gave a dynamic presentation on the current state of vaccination.
Policy and Advocacy Discussions: Dr. Heather Brandt, Director of the St. Jude HPV Cancer Prevention Program, alongside Martha Nolan, Senior Policy Advisor at HealthyWomen, highlighted the critical role of legislative action and community engagement in HPV prevention efforts.
Storytelling Session: Sally Perkins, a professional storyteller and cancer survivor, demonstrated the transformative power of storytelling in advocacy.
What’s Next: Challenges and Opportunities
“HPV-related cancers are still a greater threat in the developing world, but it’s alarming that preventable cancers are increasing here in the U.S.—especially as funding from the National Institutes of Health (NIH) and other public and private sources shrinks,” shares Morgan.
Cervivor’s Community Engagement Liaison Morgan explained how personal narratives can change minds.
Fresh from the National HPV Conference, Morgan outlines several pressing challenges facing the HPV prevention movement:
Vaccine Hesitancy: Despite strong scientific evidence that the HPV vaccine is both safe and effective—and promising news that a single dose may be enough in the future—misinformation and mistrust persist. Disinformation campaigns and cultural stigmas around vaccines continue to suppress vaccination rates, particularly in vulnerable communities.
Policy and Funding: Sustained progress in HPV prevention relies heavily on legislative support and adequate funding. Cuts to public health budgets and shifting policy priorities threaten access to the HPV vaccine, routine screenings, and treatment services—especially in underserved areas.
Healthcare Access: Longstanding disparities in healthcare access, insurance coverage, and provider availability mean that too many people—especially in rural, low-income, and marginalized communities—still face barriers to prevention and early detection. Expanding equitable access to care remains a critical need.
Cervivor’s Response: Advocacy in Action
These challenges fuel our ongoing commitment to protect every person with a cervix from HPV-related cancers. Here’s how Cervivor is responding:
Cervivor’s commitment to HPV prevention advocacy includes organizing the annual Cervivor School, where patients and survivors are equipped with the knowledge and tools to advocate for better women’s health care. Shown here is the graduating class of the 2024 school.
Enhanced Education Campaigns: Cervivor is tackling vaccine hesitancy through culturally relevant messaging and resources via initiatives such as the Cervical Cancer Summit and Cervivor School, which aims to equip participants with the knowledge and confidence to advocate for HPV prevention within their communities.
Empowering Survivors: Through our growing collection of Cervivor Stories, we amplify the lived experiences of patients and survivors to raise awareness, break stigma, and drive meaningful change.
Addressing Disparities: Through grassroots, community-led conversations like DEI MeetUps, Black Cervix Chat, Cervivor Español, and international groups like Cervivor Africa and Cervivor Caribbean, we’re ensuring underrepresented voices are heard. (Visit our Events to see if there is a meetup or group that you’d like to join.) We also serve on advisory boards and research committees, championing patient advocacy in clinical trials, screening, and vaccination efforts.
This Women’s Health Month, we urge our Cervivor community and its allies to recommit to action. Preventable HPV-related cancers shouldn’t still be claiming lives. While cancer doesn’t discriminate, the systems surrounding it often do. It’s time to break down the barriers that stand in the way of prevention, early detection, and treatment.
If you believe in Cervivor’s mission to end cervical cancer and ensure that no one has to face it alone, please consider making a tax-deductible contribution today. Your support helps us continue our lifesaving work.
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
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.”
Cervivor Founder Tamika Felder gives her annual State of Cervical Cancer speech at the Summit.Dr. Lynn Richards McDonald of Johns Hopkins Hospital shares her expertise with attendees.
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.”
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?”
Tiffany Drummond (right) highlights the importance of informed decision-making in clinical trials with survivor and advocate Lynda Ryan.Clinical-trial participant Gwen Jackson takes part in a Q&A session at the Summit.
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.”
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:
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.
