Cervivor Founder: A Voice for Cervical Cancer Survivors and Health Equity This Black Philanthropy Month

When Tamika Felder founded Cervivor, Inc., in 2005, she wasn’t trying to build a national nonprofit with global reach. She was simply navigating her own cervical cancer diagnosis and determined that no woman should feel as alone as she once did.

Today, as Founder and Chief Visionary of Cervivor, Tamika leads an international movement to eliminate cervical cancer and confront health disparities—especially those affecting women of color.

During Black Philanthropy Month—and on Give 8/28, a national day dedicated to uplifting Black-led and Black-benefiting nonprofits—Tamika’s story is a powerful reminder of how Black leaders are driving change in health equity and advocacy. For her, the day is rooted in pride and visibility. “I’ve always been a part of community service,” she says, reflecting on the example set by her parents. “There are so many Black organizations doing incredible work, but they don’t always get the recognition they deserve. Give 8/28 is a day to say we’re proud to lead these organizations.”

Here, Tamika shares her wisdom and advice for others—whether you’re launching a nonprofit or fighting for access to quality healthcare for all.

Finding Her ‘Why’ and Reclaiming Her Voice

One of Tamika’s guiding messages as a leader and survivor is the importance of finding your “why”—the driving force behind your advocacy work and passion. For her, that “why” was born during cancer treatment and its aftermath, as she grieved the sudden end of her career as an up-and-coming broadcast journalist in Washington, D.C., and the loss of her fertility. “Little by little, the trauma had less of a hold on my life, and I began to embrace the possibilities that life beyond cancer could hold,” she says.

A pivotal moment came when she was asked to testify in support of a Maryland law to safeguard parenthood for young adult cancer patients. “Through tears and shaky hands, I shared my story with legislators, and it made a difference,” she recalls. The Protect Parenthood law was ultimately passed in 2018. Since then, Tamika has continued to use her powerful voice—speaking on Presidential Panels and global stages, serving on national roundtables, and appearing in award-winning documentaries and major publications.

“Black Philanthropy Month is about increasing visibility for Black-led nonprofits,” she says. “Some people might look at Cervivor and think, ‘Well, it already has great visibility.’ But until cervical cancer is eliminated, it will always need more.”

Centering Health Equity

Tamika has always been clear: While the mission of Cervivor is universal—cervical cancer prevention and elimination—the path forward must address inequities that disproportionately affect Black and brown women. And she doesn’t mince words about why health equity is central to her work. “We know that there are disparity gaps in this space, and that people of color, especially Black and brown women, are falling through those gaps at a higher incidence,” she explains.

Cervical cancer is one of the most preventable cancers. With the HPV vaccine, Pap tests, HPV testing, and now self-collection options, the prevention tools exist to save lives. Yet Black women continue to face higher rates of diagnosis and death. Tamika believes part of the solution lies in representation: survivors telling their own stories and trusted messengers bringing information to their communities.

The image is a graphic featuring a quote and a photograph. The quote, displayed on the left side of the image, reads: "MY LEGACY WOULDN'T BE THE LIVES I BROUGHT INTO THE WORLD. IT WAS GOING TO BE THE LIVES THAT I SAVED." The text is presented in a large, bold font, with the words "MY LEGACY," "WAS GOING TO BE THE," and "LIVES THAT I SAVED" in teal, and "WOULDN'T BE THE," "LIVES I BROUGHT," and "IT" in red and orange.
To the right of the quote is a photograph of a group of eight women, all wearing white or light-colored shirts with the word "cervivor" printed on them. They are seated on two white couches, arranged in a conversational manner. The background of the photograph features a wood-paneled wall adorned with a large piece of artwork.
At the bottom-right corner of the image, three logos are visible. The first logo, situated closest to the photograph, reads "cervivor" in teal text, accompanied by the tagline "informed. empowered. alive." in smaller text below. The second logo, positioned to the right of the first, displays the name "Tamika Felder" in orange text. The overall design of the image suggests that it may be related to a campaign or organization focused on cervical cancer awareness or support.
Cervivor Noir community members at last year’s Cervical Cancer Patient Advocacy Retreat For Communities of Color in Cleveland, OH.

“When I first started sharing my story, I didn’t see anyone who looked like me,” she says. “Every time I see a Black woman sharing their story and sharing the correct scientific information behind cervical cancer, it makes me feel really, really proud.”

The Power of Patient Stories

Tamika has built Cervivor around the conviction that data alone is not enough. “We gave the data, but we didn’t tell the story,” a researcher once told her. That insight reshaped her advocacy.

“You hear all the time that patient stories are important, but I uniquely got it,” Tamika reflects. “My story makes a difference. The hard parts of my story that I may not want to talk about can make a difference. ”From Cleveland to Rwanda, Cervivor has seen an impact by uplifting patient voices. At a Cleveland Clinic event, Cervivor ensured that “no one was left out of the screening” by providing culturally specific support through Cervivor Español and Cervivor Noir.

These stories matter because they reveal the lived reality of surviving cervical cancer—the hysterectomies, infertility, ostomies, and lifelong side effects often invisible to the public. “If we just let the general population tell it, well, you survived it, you’re doing fine. But I don’t look like what I’ve been through,” Tamika says.

Building Trust and Representation

Trust is everything in underserved communities, and Tamika insists on meeting people where they are. “I go to those communities. If I don’t go myself, someone from my organization goes. We talk to them. We build trust,” she says.

Representation plays a central role in Cervivor’s impact. Tamika works to ensure that photos, videos, and programs reflect diverse survivors. “I never want anyone not to see themselves,” she explains. “There’s something special to be said by connecting with people who’ve gone through what you’ve gone through.”

Resilience and Self-Care in Leadership

Running a nonprofit rooted in lived trauma is deeply personal work, and Tamika is candid about the toll. “There are points where it’s going to be really hard, but when you’re really committed to this work, you’ll find a way to keep going,” she says.

The image is a collage of 84 headshots of women, arranged in six rows, with a light blue background that gradually darkens towards the top. The headshots are presented in white-bordered boxes, each containing a photo of a woman and her name, along with her birth and death years. The women depicted are diverse in terms of age, ethnicity, and attire. At the bottom of the image, the text "WITH CERVIVOR, THEY LIVE ON #ENDCERVICALCANCER" is displayed in white, accompanied by the Cervivor logo in the bottom-right corner. The overall tone of the image is somber, as it appears to be a tribute to women who have passed away from cervical cancer.

Tamika with Lisa Simms Booth, Executive Director of the Smith Center for Healing and the Arts

As a survivor herself, every death in the community is another wound. “It’s another person who’s died from a preventable disease, and so I have to really practice self-care around that,” she shares. Surrounding herself with other Black women nonprofit leaders helps her carry the weight. “It’s a very hard time, not only for nonprofits, but nonprofits run by Black women. Knowing that you’re not alone helps it be manageable.”

Standing Firm on Equity

Even as some organizations shy away from terms like “DEI” or “health equity” in response to political pressures, Tamika refuses to dilute Cervivor’s mission. “Just because we change and don’t call a thing a thing doesn’t mean that we don’t experience it,” she says. “We’ve already had a funder not fund us because of our Communities of Color retreat. And I’m not going to change the name of it. No one is going to die from cervical cancer on my watch.”

Her vision is clear: to leave behind a legacy of courage, visibility, and unrelenting advocacy.

A Legacy of Hope and Action

What began as one woman’s way to not feel alone has become a global movement of survivors, advocates, and educators. Tamika is proud of how Cervivor has connected patients, clinicians, community workers, and researchers. “We’ve inspired patients, educated clinicians, and shifted the narrative around cervical cancer,” she says.

On Black Philanthropy Day, her journey reminds us that philanthropy is not just about giving money—it’s about giving voice, visibility, and leadership. Tamika embodies all three, leading with resilience and purpose to ensure that no one falls through the gaps in the fight against cervical cancer.

Support the Mission

This Black Philanthropy Month, we invite you to support Tamika’s vision and Cervivor’s mission to end cervical cancer through advocacy, education, and community. Here’s how you can take action:  

  • Give $20 on 8/28: As part of Cervivor’s year-long Tell 20, Give 20 campaign, your $20 donation will directly support a Black-led nonprofit committed to health equity for all. 
  • Engage with Cervivor: Follow us on social media, share our posts, and help amplify the voices of cervical cancer survivors and advocates. Your engagement builds awareness, strengthens our community, and inspires action.
  • Attend Cervivor Events: From Cervivor School and monthly virtual meetups to the next Cervical Cancer Summit—your presence makes a difference. Show up, speak out, and stand with us.

Confronting Cervical Cancer Disparities in AANHPI Communities by Bridging Cultural Barriers

In this second blog post for AANHPI Heritage Month, we explore the health disparities affecting Asian American, Native Hawaiian, and Pacific Islander cervical cancer survivors.

Previously, Cervivor community members Arlene Simpson (Filipina), Joslyn Chaiprasert-Paguio (Chinese-Thai), Anna Ogo (Japanese), and Anh Le (Vietnamese) shared their diverse experiences, revealing a shared truth: While stigma and cultural silence around cervical and other “below-the-belt” cancers are common, their impact varies across AANHPI communities.

Despite these differences, many face similar systemic barriers to prevention, screening, and timely care—barriers that continue to cost lives. Case in point:

  • According to the American Cancer Society, Pap test screening is significantly lower among Chinese (69%) and Asian Indian (74%) women compared to white women (84%). This gap in screening may contribute to later-stage diagnoses and worse outcomes. 
  • HPV vaccination rates also lag behind national averages. A 2023 Centers for Disease Control and Prevention (CDC) report found that only 58% of Asian American adolescents had initiated the HPV vaccine series—lower than their Hispanic (73%) and White (61%) counterparts.
  • A 2024 ACS article also noted that while cervical cancer rates are higher in some parts of Asia, many AANHPI individuals are unaware of risks based on their country of origin. 

Experts and survivors highlight the following key challenges to reversing these trends as well as some promising progress: 

Language Barriers

Dr. Ha Ngan “Milkie” Vu

Asian Americans come from over 30 countries and speak more than 100 languages and dialects, explains Dr. Ha Ngan “Milkie” Vu, Assistant Professor at Northwestern University’s Feinberg School of Medicine. These linguistic and cultural differences often make accessing health information difficult.

As Arlene shares, “Medical terms don’t always translate clearly, and jargon makes it harder. Even basic words like ‘cervix’ don’t translate well in some cultures.” Joslyn, featured in Everyday Health, says, “In Thai, there’s no direct word for cervix—it’s described as a ‘plug’ that keeps the baby in. Without a proper term, how do you talk about your body?”

These communication challenges are often compounded by a lack of in-language medical materials. Dr. Jennifer Tsui, Associate Professor of Population and Public Health Sciences at USC’s Keck School of Medicine, recalls translating for her Asian immigrant grandparents at medical visits—an experience common to many second-generation individuals. Through her current work on the National Cancer Institute-funded ACHIEVE Study, which examines barriers to cervical cancer treatment and survivorship care, she has found that many patients want materials in their native language to understand whether the vaccine has been tested in their communities and if it’s effective for different Asian American groups.

Dr. Jennifer Tsui

Bridging these language gaps often requires more than translation—it takes cultural nuance. Dr. Zhengchun Lu, a cancer pathologist and resident physician at Oregon Health & Science University, originally from Zhenjiang, China, actively works to meet patients where they are. She communicates with Chinese-speaking patients and adapts CDC and World Health Organization (WHO) materials into formats that resonate culturally. For other language needs, she collaborates with hospital interpreters. “Removing language barriers also removes fear—people feel empowered to get screened,” she says.

Dr. Zhengchun Lu

To support these efforts, organizations like the American Cancer Society offer multilingual resources through their “Cancer Information in Other Languages” initiative, which provides materials in 13 languages, including Chinese, Korean, Tagalog, and Vietnamese. Making vital information more accessible is a crucial step toward equity in prevention and care.

Limited Awareness, Not Hesitancy

In the first post, Dr. Lu emphasized that many AANHPI patients simply lack awareness about HPV and the need for regular cervical cancer screenings. The same goes for the HPV vaccine.

Dr. Tsui’s research confirms this: “Many people hadn’t heard of the HPV vaccine or didn’t know it helps prevent multiple cancers.”

Adolescents often help bridge the gap. “Teens are more acculturated and read the materials—they’re the ones bringing this information home and influencing family decisions,” she says.

Trusted community messengers also matter. “In many Asian communities, people rely on their aunts, grandmothers, and community leaders,” says Dr. Tsui. “That’s why strong local partnerships are key.”

Navigating a Complicated Health System

Confusion about the U.S. healthcare system can delay screenings and treatment. While many AANHPI communities hold physicians in high regard and prefer care from well-known institutions, accessing these systems—or even getting a second opinion—can be complicated, explains Dr. Tsui.

For patients with abnormal Pap results, referrals to specialists often mean traveling to unfamiliar facilities without language support, creating additional barriers. Demanding work schedules further complicate making and keeping appointments.

To address this, Dr. Lu’s team partners with local groups to host screening events staffed by bilingual volunteers. “Bringing services directly to the community has built trust and boosted participation,” she says.

She also sees promise in HPV self-collection. “It’s not a home test, but it can be offered at outreach events under medical supervision. It’s more private, more flexible, and less intimidating—especially for those wary of pelvic exams.”

Dr. Lu works with Rabeka Ali, the research coordinator at OHSU Pathology, during an HPV testing event at a Chinese church in Portland, OR.

Lack of Gender Concordance

“In our Filipino culture, especially among older generations, there’s a belief that you don’t question the doctor—or that traditional remedies are better,” says Arlene. “But many women also feel uncomfortable discussing reproductive health with male doctors and may avoid care because of it.”

Dr. Tsui agrees. “Women are less likely to follow up if they don’t feel comfortable with their provider. In local Asian American communities like our Chinatown, having female doctors can make all the difference.”

Anti-Asian and Anti-Immigrant Sentiment

Lingering fear from the pandemic and rising anti-immigrant rhetoric have also impacted care-seeking behaviors. A 2024 Axios/Harris poll found that 50% of Americans support mass deportations of undocumented immigrants, fueling anxiety in immigrant communities.

“There was definitely a delay in seeking care—not just because of COVID, but because of fear,” says Dr. Tsui. Many in the AANHPI community avoided medical visits due to rising anti-Asian sentiment and concerns about overusing medical resources—or fears that if they left the country, they might not be allowed to return.

This fear compounded the silence around health issues like cervical cancer, which only deepened stigma, Arlene adds. “It’s more important than ever to speak up, share our stories, and help Asian women feel safe and supported.”

Dr. Tsui’s team regularly works in Asian American communities around USC.

Dr. Tsui sees hope in community-driven efforts: “It’s not all doom and gloom. In cities like San Francisco, LA, New York, Chicago, and Atlanta, AANHPI organizations are stepping up. Local clinics and advocates are helping people understand their rights and access life-saving care—just as they did during the pandemic.”

Cultural Beliefs and Cancer Fatalism

Dr. Tingting Zhang

In a 2024 American Cancer Society article, Dr. Tingting Zhang, a thyroid cancer survivor, patient advocate, and CEO of ONEiHEALTH, noted: “Some AANHPI individuals may avoid discussing cancer risk, viewing it as a bad omen or personal failure. But cancer is not retribution—it’s biology. And early detection saves lives.”

Cancer fatalism is a well-documented barrier. As Dr. Vu adds, “In my research, Filipino and Vietnamese respondents reported especially high levels of fatalistic beliefs. That mindset can lead to inaction—people believe they can’t change their outcomes, so they don’t engage in prevention. That’s why education is key: the HPV vaccine prevents cancer. We need to make that message loud and clear.”

Let’s Keep Breaking the Silence

At Cervivor, Inc. we believe that every story matters—and every voice can spark change. If you are an AANHPI cervical cancer survivor, caregiver, or advocate, we invite you to join our community. Better yet, share your unique Cervivor Story. (Submit your story here.) Together, we can dismantle stigma, increase awareness, and save lives.