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.
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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.”

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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.

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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.”

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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.”

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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

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

Navigating the Unseen Battle of Mental Health in Cervical Cancer

By Morgan Newman, MSW, Community Engagement Liaison

As the Community Engagement Liaison for Cervivor, Inc., I’ve had the privilege of supporting many individuals through their cervical cancer journeys. While treatment and physical recovery often take center stage, it’s crucial to recognize the profound mental, emotional, and psychological impact of cervical cancer, which can be overwhelming, isolating, and frightening.

Janice Le-Nguyen

At Cervivor—founded 20 years ago to support those affected by the disease—we don’t shy away from facing these challenges head-on. Many in our community say that the been-there-done-that understanding and solidarity they find here play a vital role in their healing.

Janice Le-Nguyen, a Cervivor celebrating four years of being NED (no evidence of disease) after Stage 1A2 cervical cancer, shares: “I am appreciative of finding the Cervivor community and finding pathways to not feel ashamed and that I can freely discuss HPV, the cervix, and all the ‘fun’ I went through.”

I felt the same way after surviving Stage III at 24. Getting involved with Cervivor and advocating for fellow survivors helped me reclaim my voice and purpose.

But the cervical cancer journey is complex. Emotional highs and lows are part of the experience. Here are some of the most frequent mental health concerns our community members face—and why it’s so important we talk about them openly, without judgment or fear.

Survivor’s Guilt

Feeling grateful to be alive while struggling with the aftermath of treatment can bring on guilt and self-doubt, especially when others faced tougher outcomes or didn’t survive. On average, about 10 women from our immediate Cervivor community die each year—and it never gets easier to say goodbye.

Cervivor’s “In Memoriam” graphic is a solemn tribute to many of the lives lost since the organization’s start.

These losses weigh heavily, but they keep us grounded in our mission to eradicate the disease. Rather than staying stuck in cycles of guilt, many of us find healing through action. 

That’s been true for Janice. “Through Cervivor, I realized that by sharing my story, I could inspire others to get screened, ask questions, and take charge of their health,” says the quiet but fierce advocate, who started local community outreach with Cervivor a few years back.

We encourage all survivors to share their Cervivor Stories when they feel ready—each one adds powerful momentum to our mission and gives hope to others. If you’d like to share your experience, consider filling out this questionnaire and submitting a photo.

Scanxiety and Fear of Recurrence

Scanxiety—a term widely used in the cancer community—describes the intense anxiety and fear that can build up around follow-up scans and tests.

Me during my metastatic recurrence.

As a metastatic/recurrent survivor, I know this feeling all too well. Nine years ago, I was given just a 7–9% chance of ever being cancer-free—and yet, here I am. Still, every new ache, pain, or side effect can feel like a potential sign of recurrence.

A supportive community makes a difference. In our Cervivor Facebook group, for example, many members openly share their experiences with scanxiety and offer practical ways they’ve learned to cope. Just knowing you’re not the only one feeling this way can bring relief. And as always, consult your health provider if symptoms arise.

Body-Related and Intimacy Issues

Changes to the body can deeply affect self-esteem and relationships. Radiation side effects, like needing a cane or wheelchair, can be life-altering. Invisible disabilities like lymphedema, ostomies, and hearing loss require constant management.

Survivors in our community, including Lead Cervivor Ambassador Carol Lacey and others like Lorie Wallace, Sara Johney, Gabrielle McCord, Mary Clarkson-Grubb, Sally Kwenda, Maria Franklin, Julie Groob, Karla Chavez, and Talitha Stempin, navigate these challenges with strength and grace. Tools like lymphatic compression gear, ostomy bags, and hearing aids become part of daily life and symbols of resilience.

These survivors’ courageous approach to life after cancer, despite visible and invisible disabilities, shows the strength and resilience within our community. Clockwise from top left: Carol, Lorie, Gabrielle, Karla, Mary, Talitha, Julie, Sara, Maria, and Sally.

Body changes can also affect physical and emotional intimacy. Survivors have bravely opened up about their experiences on the Cervivor Blog, and a recent CervivorTV video, hosted by Founder and Chief Visionary Tamika Felder and featuring Dr. Christina Wilson, a board-certified women’s health nurse practitioner, dives into navigating body image and sexual health. It’s a must-watch.

Depression

The trauma of a cancer diagnosis and treatment can trigger depression—a reality that affects up to 25% of cancer patients, according to the National Cancer Institute (NCI). Yet, only a fraction receive the mental health support they need. Left unaddressed, depression can slow recovery, weaken the immune system, and negatively impact survival.

Kyana Johnson

Cervivor community member Kyana Johnson, diagnosed with Stage IIIB cervical cancer at 26, has shared her mental health struggles on the blog. She found comfort in self-care practices like journaling, meditation, coloring, and listening to music. Seeing a therapist at least twice a week was especially transformative.

“It was some of the best conversations I’ve ever had,” recalled Kyana, now seven years in remission. “My therapist helped me make sense of a lot of my emotions.”

And she offers this encouragement to others: “Remember that you are worth it. You shouldn’t be ashamed to seek mental health advice when your anxiety or stress feels too heavy.”

I’m also inspired by survivors like Danielle Glick and Jessica Martin, who have become psychotherapists since their cervical cancer experience. Their journeys show how healing mental and emotional health can lead to purpose, helping others find strength during the most difficult times.

You Are Never Alone

Because cervical cancer’s link to HPV can carry stigma, many feel isolated. But within Cervivor, we work to break that silence. We notice when someone goes quiet, we reach out, and we hold space for each other—without pressure to always “be okay.”

Ultimately, connection is essential to mental health recovery. Healing requires both safety and vulnerability. By naming and normalizing our struggles, we build resilience—and a supportive community that truly sees us. As Kyana put it, joining support groups like Cervivor helped her mental well-being because “they got it.”

Our mantra is simple: You are never alone. Whether through private groups, monthly support meetups, or personal check-ins, there is always a place for you here.

Ready to build meaningful relationships and support others in their cancer journeys? Join our monthly Creating Connections virtual meetup, designed for cancer patients, survivors, and thrivers. This supportive community is a safe space to share experiences, find resources, and connect with others who understand. Register for our next virtual meetup today.

About Morgan Newman, MSW

A resilient young adult (AYA) cervical cancer survivor, social worker, and dedicated patient advocate, Morgan has transformed her experience into a powerful force for change. After overcoming metastatic and recurrent cervical cancer at 24, she became a Cervivor Ambassador in 2017 and has since led global advocacy efforts. Her leadership roles include Community Engagement Liaison at Cervivor, board member for Above and Beyond Cancer and the Iowa Cancer Consortium, and Iowa State Lead Ambassador for the American Cancer Society Cancer Action Network (ACS CAN). She also serves on the Iowa Immunizes Coalition and as a patient advocate for the NIH’s Enduring Guidelines and Extended Genotyping Panels, and the NCI’s Patient Advocacy Steering Committee and Cervical Task Force. Morgan’s work has earned her awards and recognition, solidifying her as a leading voice in the fight against cancer.