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.

Honors in Advocacy for our Leaders in the Mission to End Cervical Cancer

In the relentless mission to end cervical cancer, every victory, every recognition, is a puzzle piece of hope, a testament to the dedication of those who tirelessly advocate for progress. Today, we are honored and humbled to celebrate the remarkable achievements of three extraordinary individuals who have devoted their lives to championing the cause of cancer patients, survivors, and advocates.

Tamika Felder, Founder & Chief Visionary

At the forefront of our celebration is Tamika Felder, our Founder and Chief Visionary, whose journey from patient to nonprofit founder has been nothing short of inspiring. In 2001, Tamika faced a daunting diagnosis of cervical cancer, a moment that would change her life forever. Determined to turn her personal struggle into a source of strength for others, Tamika founded Cervivor in 2005, an organization dedicated to educating and empowering cervical cancer patients and survivors to share their stories and make a difference.

For the past 19 years, Tamika has been a trailblazer in the mission to end cervical cancer, always advocating for the voices of patients and survivors to be heard. Her commitment and relentless efforts have earned her the incredible honor of being appointed to the National Cancer Advisory Board by President Joe Biden. This appointment is not only a testament to Tamika’s extraordinary leadership but also a recognition of the vital role that she and Cervivor play in shaping the future of cancer research, treatment, and prevention.

The National Cancer Advisory Board plays a crucial role in guiding the Director of the National Cancer Institute in setting the course for the national cancer research program. As we work towards President Biden’s ambitious goal of ending cancer as we know it through initiatives like the Cancer Moonshot, Tamika’s appointment ensures that the voices of cervical cancer patients and survivors will be heard loud and clear at the highest levels of decision-making.

Morgan Newman, MSW, Community Engagement Liaison

We are also thrilled to celebrate the achievements of Morgan Newman, our Community Engagement Liaison, who has been selected as a patient advocate member for the National Cancer Institute (NCI) Gynecologic Cancer Steering Committee (GCSC) Cervical Task Force (CTF). Morgan’s dedication to ensuring that patient voices are integrated into the development and evaluation of clinical trials is truly commendable. Through her involvement in these committees, Morgan is helping to shape the future of gynecologic cancer research and treatment, ensuring that the needs and perspectives of patients are always front and center.

Kimberly Williams, MHCM, Chief Diversity Equity & Inclusion Officer

Last but certainly not least, we extend our heartfelt congratulations to Kimberly Williams, our Chief Diversity Equity and Inclusion Officer, for her continuous role as a patient advocate member for the Cervix/Vulva Cancer Committee for NRG Oncology. Kimberly’s tireless advocacy efforts have been instrumental in improving the clinical research process and ensuring that patient perspectives are always prioritized. Her recent appointment to the Diversity, Equity, and Inclusion Committee further underscores her commitment to advancing equity and inclusion in cancer research and treatment for all.

As we celebrate these remarkable achievements, we are reminded of the power of advocacy and the incredible impact that individuals like Tamika, Morgan, and Kimberly can have in the mission to end cervical cancer. Their dedication, passion, and advocacy serve as an inspiration to us all, and we are proud to stand alongside them in the quest for a world free from cervical cancer.

To learn more about Tamika Felder’s appointment to the National Cancer Advisory Board, please see the official press release from the White House [here].