#Screen4Me

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.

Remembering Gina Yong Lee Gossett

Last week, we lost Gina Yong Lee-Gossett, a courageous cervical cancer patient and advocate whose Cervivor spirit inspired countless lives. As we come to terms with her passing, we take a moment to reflect on the profound impact Gina had on our community and the lasting legacy she leaves behind. 

Cervivor’s Founder and Chief Visionary Tamika Felder shares in our collective grief:“Gina was a beacon of strength, charisma, and humor. Despite the challenges she faced – initially beating cervical cancer, enduring its return, and navigating all the emotions and struggles that come with it – she remained determined to move forward and stay positive. Her final Instagram post, where she shared her decision to enter hospice, was a stark reminder of the devastating effects of this disease. This loss underscores the fragility of life and the importance of our work to prevent cervical cancer. Gina leaves an indelible mark on our organization. Her contributions – from expressing her gratitude for caregivers in a Cervivor blog to her uplifting presence in every interaction will our community – will never be forgotten.”

Gina faced cervical cancer for over seven years, a testament to her extraordinary determination, positivity, and self-advocacy. Her selfless sharing of experiences, advice, and support has left a lasting mark on the Cervivor community.

Cervivor Ambassador and Podcast Host Joslyn Chaiprasert-Paguio shares cherished memories of Gina: “Over two years ago, I had the honor of meeting Gina, a woman whose smile and spirit could instantly brighten any room. We bonded quickly over our shared experiences with cervical cancer, and from that moment on, Gina became a source of inspiration in my life. Her optimism was contagious, and she faced her diagnosis with an unwavering grace that left a lasting impact on everyone who knew her. Gina was passionate about ensuring that everyone, especially for those in the Asian community, had access to adequate healthcare. She was a fierce advocate, driven by her belief in the importance of equal treatment and care for all. Even in the face of her own challenges, Gina never wavered in her mission to make a difference. Though Gina has passed, her legacy lives on in the those she touched and the fight she championed. I promise, Gina, that we will continue this fight together, honoring the spirit and strength you showed us every day.”

Cervivor Ambassador and Community Engagement Liaison Morgan Newman expresses the depth of this loss: “I will forever cherish the memory of Gina’s presence at the 2021 Cervivor Brand Day, which was my first in-person event post-pandemic. Amidst the hustle and bustle, Gina’s bright humor and incredible smile were a breath of fresh air, making everyone feel welcome and at ease. Her positivity was infectious, and I was deeply moved by her kindness and compassion. In a room full of strangers, Gina had a way of making each person feel seen and valued. I will never forget her spark.”.

Gina was driven by a deep passion to inspire others to take control of their health. Her commitment to eradicating cervical cancer led her to engage in various initiatives, from participating in an informative Surrogacy Q&A session to attending the 2021 Cervivor Brand Day. Cervivor Ambassador and fellow surrogate mom Ginny Marable shares: “I think what stands out most is her grit and grace through it all – she showed us what truly living with cancer looks like and she never stopped cheering others on around her. She made a positive impact on my life and I will forever do my best to honor her legacy. She holds a special place in my heart.”

Gina’s journey resonated deeply with the Cervivor community, but her impact extended far beyond, as she shared her story with numerous media outlets, including news interviews and articles. Through these platforms, Gina amplified her message of empowerment, urging individuals to prioritize their health and take the crucial step of getting regular cancer screenings. By speaking openly about her experiences, Gina humanized the statistics and reminded everyone that cervical cancer affects real people, loved ones, and communities. 

Chief Diversity Equity and Inclusion Officer Kimberly Williams remembers how Gina made an immediate impression on her: “I only met Gina once, but her radiant smile and strength left an indelible mark on me. Despite the challenges she faced, she refused to give up, choosing instead to share her story and be a guiding light for others. Her spirit will continue to inspire all who were fortunate enough to meet her.”.

Long-time Cervivor Makeup Artist Jessica Winchell offers fond remembrances of Gina, “Sweet Gina, such a gentle soul. I remember meeting her for the first time at Cervivor’s Brand Day. She was so happy to be there that weekend. It was my greatest honor to do her hair and makeup that day – we laughed and shared stories like we had known each other forever. I remember her smiling big when she saw herself. From being nervous to sit in the chair, she left confident to share her story, she reminded me what bravery looked like one big smile at a time. Gina will be sorely missed and not easily forgotten.”.

To honor her legacy, let’s commit to sharing her story, reminding our friends and loved ones of the importance of regular screenings, and educating others about the importance of the HPV vaccine. By taking action and spreading awareness, we can keep her memory alive. Please #Screen4Gina and help protect others.