Why the Patient Voice is Essential to the President’s New Global Commitment to End Cervical Cancer

By Tamika Felder, Founder and Chief Visionary, Cervivor, Inc.

In case you missed the big news, President Biden hosted leaders from Australia, Japan, and India at his Delaware home this past weekend for the latest Quad Summit. Why is this big news? The gathering of these four key countries, one of several since 2020, marks a milestone in the fight to end cervical cancer worldwide.

As reported, the Summit launched the Quad Cancer Moonshot Initiative, aiming to significantly reduce cervical cancer rates in the Indo-Pacific region, which includes South Asia, Southeast Asia, and parts of Oceania, and accounts for one-quarter of global cervical cancer cases. Alongside the U.S., the other Quad countries are making huge commitments to medical equipment, HPV testing, and vaccines.

We can all learn a lot from Australia, which is setting the pace globally. The country is on track to become the first to eliminate cervical cancer, defined by the World Health Organization (WHO) as having fewer than four cases per 100,000 people. The WHO has also set a global deadline of 2030 to get rid of this disease for good. Other countries are closing in on the target including Sweden, Portugal, and Rwanda.

But here’s the thing: While these international efforts can be game-changers, they can’t achieve their goal without one crucial element – the voices of cervical cancer patients and survivors. That’s where Cervivor comes in.

Cervivor’s global community of cervical cancer patient advocates is growing and getting louder every day.

Why Patient Voices Matter

Cervivor has always focused on amplifying the voices of those directly affected by cervical cancer from way back when I founded the organization in 2005 after I survived cervical cancer in my twenties. Sure, I was grateful to be alive – minus my uterus and facing long-lasting health complications – but I was angry. There was an HPV test and there was about to be an FDA-approved vaccine, but no one was talking about how cervical cancer is almost entirely preventable. What happened to me shouldn’t have happened to anyone else, especially the nearly 350,000 women it continues to kill worldwide each year. 

When Dr. Linda Eckert, one of our 2024 Cervivor Champion Award winners and a global expert in cervical cancer prevention, released her book Enough: Because We Can Stop Cervical Cancer this January (during Cervical Cancer Awareness Month, of course), she made sure to include stories from our Cervivor community members. Why? Because our voices are crucial in every initiative aimed at ending this disease. By sharing our lived experiences, we can influence everything from drug trials to legislation to, yes, international collaborations. These authentic, often raw, stories remind the world that cervical cancer isn’t just a statistic – it impacts real women and families.

In this video, cervical cancer expert Dr. Linda Eckert shares why she wrote Enough and how inspired she was by the dozens of survivors whose stories it features, including members of our Cervivor community.

Australian Prime Minister Anthony Albanese shared a similar sentiment with the announcement of the Quad initiative, calling attention to the women in the Pacific who die of the disease at up to 13 times the rate of women in Australia. “These people are not numbers,” he said. “They are our neighbors, members of our Pacific family, and we’re stepping forward to help.” 

Cervivor: Leading the Charge

From our annual Cervivor School, which empowers survivors to become advocates, to our upcoming Cervical Cancer Summit (sign up for updates!), Cervivor is at the forefront of the fight against cervical cancer. We partner with healthcare providers and organizations to improve access to care and lead awareness campaigns like #Screen4Me. We also advocate for critical legislation, such as the PREVENT HPV Cancers Act of 2021 and its expansion in 2023. Our efforts extend to high-level forums, where we drive discussions to ensure cervical cancer prevention and care remain a priority.

Like President Biden’s reported belief in a “latticework approach” to diplomacy, Cervivor fosters collaboration. By working with healthcare professionals, researchers, and other advocacy groups, we create a united front against cervical cancer. Our community members serve on guideline panels, advisory boards, and in research studies. This year, I was honored to be appointed to the National Cancer Advisory Board by President Biden, a role that allows me to continue championing the voice of survivors at the highest levels. Their perspectives are essential to shaping policies, informing research, and pushing for a future where cervical cancer is no longer a threat.

Cervivor Founder Tamika Felder moderates the 2024 Cervical Cancer Forum at the White House as part of the Biden Cancer Moonshot Initiative.
That’s me on the left moderating the 2024 Cervical Cancer Forum at the White House as part of the Biden Cancer Moonshot Initiative.

When I had the privilege of moderating the Cervical Cancer Forum at the White House earlier this year, I called it a historic moment – researchers, policymakers, community workers, healthcare providers, patients, and survivors came together with national leaders to elevate the patient voice. With the latest Quad Cancer Moonshot Initiative, it’s even more crucial that we raise awareness globally.

Now is the Time to Join Us

Never before has cervical cancer been so at the forefront of the world stage. Now is the time for all of us to unite in the fight to eliminate it. Together, we can do this – it is not just possible; it’s necessary. Too many lives are being lost to cervical cancer worldwide. This is a human issue that affects us all.

This graphic of people we have lost in our Cervivor community represents only a fraction of the women still dying from this preventable disease.

Cervivor serves as a megaphone for the patient and survivor voice, but we need your help to amplify the message that this cancer can be prevented if we use the medical knowledge and tools at our disposal. We have to reach that mom or sister who hasn’t gotten screened lately because she’s “too busy” but is noticing “weird” symptoms down there. We have to let parents know that their kids may never have to go through cervical cancer treatment (which isn’t pretty, I can tell you) if they get vaccinated now. For that matter, the American Society of Clinical Oncology (ASCO) announced in May that the HPV vaccine has been linked to a decrease in HPV-related head and neck cancer in men, and that people who are vaccinated are less likely to require certain surgical cancer treatments. Truly, getting your kids vaccinated is giving them the gift of a healthier future. 

This screenshot of a Facebook post shows global cancer advocate Tamika Felder addressing a group at the White House for a Biden Cancer Moonshot event on October 24, 2024, where First Lady Dr. Jill Biden tagged and personally thanked her.
While I don’t do what I do for recognition, getting a thank-you on Facebook from First Lady Dr. Jill Biden a couple of years ago was pretty gratifying.

As distinguished professor Dr. Noel Brewer of the UNC Gillings School of Global Public Health – an HPV expert and trusted ally in our mission – has emphasized, “In reality, data and statistics may only hold sway on the pages of medical journals. What truly matters are the people and their lived experiences. Sharing powerful stories cuts through the noise and connects us to what is vital.” He likens explaining data without the patient experience to “walking into a firefight armed only with a calculator.”

At Cervivor, we are armed with hundreds of powerful stories – too many stories, to be honest. I implore you to join our fight to end this disease now, not later. Who’s with me?

Tamika Felder is a cervical cancer survivor and the Founder and Chief Visionary of Cervivor, Inc., a nonprofit dedicated to cervical cancer awareness and prevention through its global community of patient advocates. Driven to eradicate cervical cancer within her lifetime, she is a leading voice in healthcare, HPV education, and cancer prevention.

Tamika has shared her story at Presidential Panels, trained thousands of patient advocates, and serves on the steering committees of the National Cervical Cancer Roundtable and the National HPV Vaccination Roundtable. Recently appointed by President Biden, she is now a member of the National Cancer Advisory Board. Tamika’s impactful storytelling has also been featured on Bravo’s Real Housewives of Beverly Hills and in the documentaries Someone You Love: The HPV Epidemic and Conquering Cervical Cancer.

Empowerment Through Knowledge: Understanding HPV and Cervical Cancer Prevention

We are Cervivor, a community where empowerment through knowledge is our driving force. We believe that education is the key to preventing cervical cancer, and our mission is to support and empower individuals affected by cervical cancer and eliminate the feeling of being ashamed of an HPV diagnosis.

What is HPV?
The Human Papillomavirus (HPV) is the most common sexually transmitted infection globally. While many HPV infections resolve on their own, certain high-risk types can lead to cervical cancer. Knowledge about HPV is crucial for prevention, early detection, and effective management. Cervivor is dedicated to providing comprehensive information about HPV to ensure that everyone has the tools they need to protect themselves and their loved ones.

How Can We Prevent Cervical Cancer?
Cervical cancer is largely preventable through vaccination, regular screenings (i.e. Pap tests and HPV tests), and early treatment of precancerous lesions. Cervivor encourages individuals to take charge of their health by understanding the importance of preventive measures. Through our community, we provide a platform for sharing experiences, asking questions, and cultivating a supportive environment for those navigating the journey of cervical cancer.

Empowerment begins with knowledge. Cervivor equips individuals with the information needed to make informed decisions about their health. We believe that by understanding the risks associated with HPV and cervical cancer, individuals can take proactive steps toward prevention, leading to better outcomes and improved overall well-being.

Every year, Cervivor recognizes individuals who have shown exceptional dedication to raising awareness about cervical cancer, supporting those affected by cervical cancer, and advocating for HPV vaccination and routine screenings. The 2024 Cervivor Champions are shining examples of resilience, courage, and commitment to making a difference. Let’s take a moment to celebrate and honor these extraordinary individuals:

  • Ambassador Nancy G. Brinker, CEO Susan G. Komen & now The Promise Fund
  • Gilma Pereda, Cervical Cancer Survivor
  • Jennifer Young Pierce, M.D., M.P.H., F.A.C.O.G., Professor of Gynecologic Oncology at University of South Alabama

  • Jonny Imerman, Co-Founder Imerman Angels & ClozTalk
  • Karen North, Breast and Cervical Cancer Survivor, Cervivor LGBTQIA+ Lead
  • Linda Eckert, MD, Board-Certified Obstetrician and Gynecologist and an Internationally Recognized Expert in Immunizations and Cervical Cancer Prevention

  • Lorie Wallace, Cervical Cancer Survivor
  • Michelle Whitlock, Cervical Cancer Survivor & Award-Winning Author

Empowerment through knowledge is the cornerstone of Cervivor’s mission. By understanding HPV and cervical cancer prevention, individuals can take control of their health and contribute to the broader effort to eliminate cervical cancer. As we celebrate the 2024 Cervivor Champions, we are inspired by their passion and dedication, reinforcing our belief that together, we can create a world where cervical cancer is a thing of the past. Join us in our mission to educate, support, and empower – because knowledge is the key to a healthier future.