Cancer Policy

What Is Patient Advocacy? And Why It’s Critical in Cervical Cancer Care

By Kyle Minnis, Cervivor Communications Assistant

Peer-led advocacy isn’t just powerful—it’s transformative. According to the National Library of Medicine, programs like Cervivor School—Cervivor’s highly regarded ambassador training program—have quadrupled cervical cancer screening rates in some underserved communities.

Peer and patient advocates provide support to those undergoing treatment, help reduce the stigma of cervical cancer and other conditions, and educate people about prevention and early detection. Perhaps most importantly, they improve survival outcomes. Their work ensures patients are seen and heard while also making the healthcare system more effective and equitable.

To mark National Patient Advocacy Day (August 19), we’re diving into what patient advocacy is, its various forms, and how it has shaped cancer care since the 1950s, when patients and families first began speaking out.

We’ll also celebrate the impact of advocates in our Cervivor community—from everyday actions to global initiatives—and share ways you can get involved in this life-saving work. 

The image is a collage of four photos of women, with a logo in the middle. The logo is white with a teal border and says "NATIONAL PATIENT ADVOCACY DAY" in teal letters. Below that, it says "cervivor" in bigger teal letters, and "informed. empowered. alive." in smaller black letters. Here's what's in the image: Top Left Photo: A woman with long black hair and glasses is shown from the chest up. She's wearing a green jacket over a white shirt and has a name tag on her left lapel. The background is a brick wall. Top Right Photo: A woman with short pink hair is shown from the chest up. She's wearing a dark blue shirt and a thin gold necklace. The background is blurry, but it looks like she's outside. Bottom Left Photo: A woman with medium-length brown hair and red glasses is shown from the chest up. She's wearing a black and white patterned top and has a colorful lei around her neck. The background is a gray wall. Bottom Right Photo: A woman with curly black hair is shown from the chest up. She's wearing a maroon shirt and a silver necklace. The background is white. The image is likely promoting National Patient Advocacy Day, which might be related to cervical cancer awareness because of the "cervivor" logo.

What Is Patient Advocacy in Cancer Care?

First, let’s define what patient advocates do. 

Clinical patient advocates—also called navigators or representatives—help patients understand their diagnosis and options, schedule and keep appointments, navigate insurance, secure resources like transportation or childcare, and coordinate care among multiple providers. Their core principle is to listen to, inform, and empower patients to actively participate in their care.

“A patient navigator is the person who makes the healthcare system accessible,” explains certified navigator Nancy Peña, OPN-CG, CMI, BA, who spent more than a decade in gynecologic oncology clinics at Dana-Farber Cancer Institute (DFCI) and Brigham and Women’s Hospital (BWH). “We keep the care plan on track, the information clear, and the patient’s goals at the center. The navigator is the bridge between the patient and the medical team.”

The image shows a woman standing in front of a large sign that reads "RADIO DABANG 99.5 FM." Here's what's in the image: The woman is wearing: A black graphic t-shirt with a colorful design and the word "HOPE" in teal letters White pants Teal sneakers Her hair is styled in a short, curly updo with red highlights She's smiling and has her left hand on her hip The sign behind her features: A cityscape at night with many lit-up buildings The words "RADIO DABANG 99.5 FM" in large letters, with "RADIO" in red and the rest in white and gray The floor is made of gray carpeting with a striped pattern The image appears to be a promotional photo for a radio station, possibly taken in a studio or office. The woman may be a DJ, host, or representative of the station.
Sharica at the cervical cancer walk she organized with local radio support.

Meanwhile, nonclinical advocates—often survivors themselves—focus on building trust, hope, and community connection. Cervivor community member Sharica Lewis, diagnosed with Stage IB2 cervical cancer at age 35 in 2015, shares her journey publicly on Facebook to inspire others.

“Advocacy gives me the opportunity to share my story and support someone who may be struggling to ask questions or speak up,” says Sharica, who graduated from Cervivor School Minneapolis last year and launched her advocacy work by organizing a local cervical cancer awareness walk in her Texas town.

Nancy, who is also the Founder and Director of Navegación de Pacientes Internacional (NPI)—which trains clinical and nonclinical patient advocates in Spanish across the U.S. and Latin America—says the two types of advocates complement each other. Their goal: helping patients navigate the healthcare system while addressing emotional, cultural, and financial barriers to ensure high-quality care for all.

How Patient Advocacy Improves Cervical Cancer Outcomes

Recent studies and national summits have shown that peer and patient advocates significantly increase cervical cancer awareness and prevention—as noted above, sometimes increasing screening rates by up to four times. 

Why does this matter? Regular cervical cancer screenings have cut incidence and mortality by more than 50% over the past several decades, largely thanks to the Pap test, according to the American Cancer Society Cancer Action Network (ACSCAN). Yet diagnoses in women aged 30 to 44 rose about 1.7% annually from 2012 to 2019, likely due to lower screening rates and gaps in prevention outreach, reports the American Cancer Society (ACS). These numbers make one thing clear: Screening saves lives—and advocates are essential to keeping it top of mind.

Effective hospital patient navigation programs can also have a measurable impact. “At DFCI/BWH, we reduced the no-show rate [for appointments] from 49% to 29% in the first five years,” says Nancy. “This success was possible through staff collaboration, consistent patient education, and multi-lingual resources that ensure every woman knows her next step.”

How Patient Advocacy Helps Close Healthcare Disparities

Here are some sobering facts: In the U.S., Black women are twice as likely—and women living in poverty four times as likely—to die from cervical cancer compared to white women. American Indian and Alaska Native women face two to three times higher mortality, while rural women are more likely to be diagnosed late and die from the disease. 

These disparities underscore the vital role patient advocates play in closing gaps in care and ensuring prevention and treatment reach those who need it most.

Patient advocacy organizations like Cervivor and Nancy’s multilingual, multinational NPI respond to these challenges by offering localized, culturally competent support, adapted education, and strong policy engagement. They earn trust by meeting women where they are and truly listening to their needs—something clinics alone can’t always do.

The image depicts a woman standing at a podium on a stage, addressing an audience. The stage is set with a large screen behind her, displaying a presentation slide titled "Speaker Spotlight" in blue text. Below the title, a circular photo of the speaker, Nancy Peña, is accompanied by her name and credentials in blue text, as well as her title and organization in smaller blue text. The slide's subtitle, "Rising Above Cultural Stigmas and Health Equity," is written in red text.
Certified patient advocate Nancy speaks to the audience at the 2024 Cervical Cancer Summit Powered by Cervivor, Inc.

Both clinical and nonclinical are irreplaceable for designing inclusive cancer care. As Nancy explains: “Native-language navigation improves informed consent, adherence, and satisfaction; reduces errors and no-shows; and honors dignity. When a woman can understand her options and feel supported, outcomes improve—and families and communities feel the difference.”

Advocacy in Action: Sharing Cervical Cancer Survivor Stories

Honduran native Karla Chavez—a Cervivor Ambassador and co-leader of the Cervivor Español community—was diagnosed with Stage II cervical cancer at age 34 in 2017. After completing treatment, she says Cervivor was a “lifeline.”

“Attending Cervivor School in 2019 gave me the knowledge, confidence, and community I needed to take my advocacy to another level,” says Karla. “They provided training, resources, and a network of incredible survivors who inspire me daily.”

Since then, the award-winning advocate has participated in outreach through the 2024 Communities of Color Advocacy Training Retreat and delivered remarks during last year’s Cervical Cancer Elimination Day of Action (November 17) at a World Health Organization–hosted webinar.

The image depicts a group of people gathered outside a storefront, with one woman prominently wearing a white t-shirt featuring the text "cervivor Cares" in blue and red. The scene appears to be a promotional or awareness event, possibly related to cervical cancer or women's health. Key Elements: A woman in the center of the image is wearing a white t-shirt with the text "cervivor Cares" printed on it. She is holding a pamphlet and engaging in conversation with another woman. The surrounding individuals are also dressed casually, suggesting an informal gathering. The storefront behind them features a sign reading "SALLY Beauty," indicating that the event is taking place outside a beauty supply store.
Karla in action during community outreach in Cleveland, OH, at last year’s Communities of Color Advocacy Training Retreat.

Similarly, Cervivor Ambassador Emily Hoffman—diagnosed with Stage II cervical cancer and treated in 2013—has made advocacy a central part of her life. Her “airplane advocacy”—simple, one-on-one conversations, often sparked by the HPV button she wears—can be just as impactful as speaking at larger events, like her home state’s Iowa Vaccination Summit, where she presented last September.

Emily also champions cancer registries, which are essential for improving patient outcomes and securing public health funding. In 2020, she became a certified cancer registrar, sharing, “Knowing my work could impact cancer advocacy, policy, and research—that’s the fulfillment I was looking for.”

The image depicts a group of women seated in a conference room, with five women prominently featured on the right side of the frame. They are all wearing name tags and appear to be engaged in a discussion or presentation. The women are dressed in casual attire, with some wearing blazers or cardigans over their shirts. The woman on the far left has short gray hair and is wearing a black blazer over a white blouse with a floral pattern. The second woman from the left has short blonde hair and is wearing a black blazer over a white t-shirt with blue and red writing. The third woman from the left has short blonde hair with multicolored highlights and is wearing a gray cardigan over a dark blue shirt. The fourth woman from the left has dark hair pulled back and is wearing a gray cardigan over a gray t-shirt with red writing that reads "IOWA NEEDS VACCINES." The woman on the far right has dark hair pulled back and is wearing a black hoodie over a gray shirt. In the foreground, several other women are seated at tables, facing the five women on the right. The background of the image features large windows that allow natural light to enter the room and provide a view of the outside environment. The overall atmosphere of the image suggests a professional or educational setting, possibly a conference or workshop.
Emily (center) shared her lived experience and advocacy insights at the 2024 Iowa Immunization Summit alongside Cervivor’s Community Engagement Liaison, fellow Iowan Morgan Newman (second from left).

How to Get Involved in Patient Advocacy

Patient advocacy is more important than ever. Public health initiatives—including the CDC’s National Program of Cancer Registries (NPCR), which has helped reduce U.S. cancer death rates by 34% since 1991—face increasing threats.

If getting into patient or survivor advocacy feels overwhelming, take inspiration and advice from these Cervivor community members. 

“Start small and start from the heart,” says Karla. “At first, I didn’t know how to share my story—I was still processing everything I had gone through. What motivated me was the feeling of isolation. I didn’t know anyone else who had experienced what I had. I wanted to talk to someone and not feel alone.”

Sharica takes a similar approach: “My tag line is, ‘Let’s start the conversation!’” she says. “Cervivor has empowered me by giving me a community that understands me and everything that I’ve been through. Any opportunity I get to advocate, I’m grateful for it. I get excited when I post on social media and a parent comments that they had their child vaccinated.”

The image depicts a group of five women standing together, posing for a photograph in front of a vibrant balloon backdrop. The women are dressed in various outfits, with the central figure holding a certificate. The woman on the far left is attired in a black cardigan and blue jeans. The second woman from the left wears a white dress. The third woman, positioned centrally, holds a certificate and is dressed in a patterned dress. The fourth woman from the left is wearing a black top and patterned pants. The woman on the far right is dressed in a teal dress. The background features a wall adorned with balloons in shades of white, blue, and silver, accompanied by white flowers. A projector screen is visible on the right side of the image, displaying a logo and the text "IT'S GRADUATION TIME!" in blue letters. The floor is composed of dark tiles arranged in a geometric pattern. The overall atmosphere of the image suggests that the women are celebrating a special occasion or achievement, as indicated by the certificate being held by the central figure.
Sharica proudly displays her 2024 Cervivor School certificate of completion, surrounded by Team Cervivor, including Founder and Chief Visionary Tamika Felder (far right).

Ready to get involved? Here’s how: 

  • Join a support group or peer network like Cervivor, which hosts monthly virtual meetups and other opportunities to connect with fellow survivors.
  • Attend advocacy trainings through programs like Cervivor School. (Applications sign up Friday, August 22, so sign up now for next month’s Kansas City training!)
  • Share your Cervivor Story—on social media, in your community, or at local events.
  • Volunteer for patient- or survivor-led initiatives.
  • Donate to organizations like Cervivor that empower patient advocates. (Our Tell 20, Give 20 fundraising campaign is ongoing—learn how to join and help save lives!)
  • Contact policymakers and lend your voice to legislative efforts that expand access to prevention, treatment, and care.

As patient navigation and advocacy continue to grow—with expanded training, certification programs, multilingual initiatives, and recognition by hospitals and public agencies—there’s hope that equitable care will become the norm, not the exception.

Nancy sums up the work well: “Navigation is a practical expression of equity.”

Together—by sharing stories, showing up for each other, and pushing for change—patient advocates are leading the way toward ending cervical cancer and building a future defined by equity, support, and survivor strength.

Honor National Patient Advocacy Day by sharing this post and joining the mission to end cervical cancer!

About the Author

The image is a portrait of a young man with dark skin and short, curly black hair. He is wearing a blue collared shirt and black-framed glasses, and is smiling at the camera. The man has dark skin and short, curly black hair. His hair is cut close to his head, with a slight fade at the sides. His eyebrows are thick and well-groomed. He is wearing a blue collared shirt. The shirt is a medium blue color and appears to be made of a lightweight material. It has a relaxed fit and is buttoned up to the top. He is also wearing black-framed glasses. The frames are rectangular in shape and have a subtle curve at the temples. The lenses are clear and do not appear to have any tint or coating. The man is smiling at the camera. His smile is wide and genuine, showing off his white teeth. His eyes are crinkled at the corners, giving him a friendly and approachable appearance. The background of the image is a plain gray color. The gray is a medium tone, neither too light nor too dark. It provides a neutral backdrop that allows the subject to stand out. Overall, the image presents a friendly and approachable young man who appears to be confident and comfortable in front of the camera

Kyle Minnis is a senior studying Strategic Communications at the University of Kansas. He is currently serving as Cervivor’s Communications Assistant.

Preventing HPV-Related Cancers: Cervivor’s Urgent Call for Action This Women’s Health Month

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 Morgan Newman at National HPV Conference
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 School 2024 Graduates and Team Cervivor
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.
  • Advocacy and Policy Engagement: Members of Cervivor’s team and community proudly contribute to national coalitions including the National HPV Roundtable, National Roundtable on Cervical Cancer, HealthyWomen HPV Coalition, HPV Cancers Alliance, and the St. Jude HPV Cancer Prevention Program, helping shape policies that support prevention, access, and care.
  • 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.