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Empowering Communities of Color: A Recap of the Fall Virtual Advocacy Retreat

The Fall Virtual Cervical Cancer Patient Advocacy Retreat for Communities of Color, held on October 28th, was an inspiring and informative event that brought together cervical cancer survivors and speakers dedicated to closing the gap in cervical cancer disparities. The retreat aimed to provide a platform for empowering and educating communities of color across the globe to become advocates in the mission to end cervical cancer. With a dynamic lineup of speakers, engaging and impactful conversations, and a clear advocacy action list, the retreat left attendees feeling empowered and equipped to make a difference in their communities and beyond.

The retreat’s success was undoubtedly due to the incredible speakers who graced the virtual stage. Each speaker brought unique insights and experiences to the table, making the event an unforgettable experience for all who attended:

  • Kimberly Williams, Cervivor’s Chief Diversity Equity and Inclusion Officer gave the opening remarks, shared how her personal journey has progressed over the last several years, and discussed the unwavering commitment Cervivor, Inc. has to diversity, equity, and inclusion in the mission to end cervical cancer.
  • Tamika Felder, Founder and Chief Visionary of Cervivor, Inc. inspired attendees to define their ‘why’ while sharing her personal experience of building what she didn’t have, the vision turned into a reality with the creation of the Cervivor, Inc. organization of nearly 19 years ago.
  • Nancy Peña, ONP-CG, CMI, BS, Director and Founder of Navegación de Pacientes Internacional, Inc. (NPI), was our morning keynote to share the important work to end cancer disparities by identifying and providing cancer patients support resources throughout the continuum of their care.
  • A Cervivor-filled panel moderated by Tiera Wade included the voices of Joslyn Paguio, Kadiana Vegee, and Karla Chavez to show their journeys from cervical cancer survivors to Cervivors.
  • Chicago-based duo, Dr. Nita Karnik Lee and Dr. Paris Thomas teamed up to share the importance or representation in clinical trials, how to access the opportunities available, and advocate for others to seek the care they deserve.
  • Dr. Jennifer Cunningham Erves, PhD, MPH, MAEd, MS, CHES, Director of Community Engaged Research at Vanderbilt-Ingram Cancer Center shared what attendees needed to know about the human papillomavirus (HPV) and the importance of cancer prevention through vaccination.
  • Dr. Jane Montealegre, Baylor College of Medicine, was the closing keynote to address the unique opportunities and challenges we face in eliminating cervical cancer.

Throughout the retreat, attendees from across the globe engaged in meaningful conversations and breakout discussions that shed light on various aspects of cervical cancer and advocacy. Several survivors logged in from islands in the Caribbean and a large group of survivors gathered together in Milicent Kagonga’s home, a Cervivor Africa Ambassador, to learn more about patient advocacy. 

But the retreat didn’t just stop at discussions; it moved the speakers and empowered attendees with a clear action list to ensure that the knowledge gained translated into impactful change:

  • Advocate for Improved Access to Healthcare: Support initiatives to increase access to cervical cancer screenings and vaccinations within communities of color.
    • Attendees expressed the importance of holding workshops to share screening and vaccination information not only for the public but to bridge the gap between patients and providers.
  • Education and Awareness Campaigns: Join Cervivor, inc. and participate in community-driven awareness campaigns to educate individuals on the importance of cervical cancer prevention, early detection, and self-advocacy.
    • Attendees expressed the need to bring men into the discussion as cervical cancer impacts the entire family structure and the very virus that causes 5 more cancers.
  • Community Engagement: Strengthen partnerships within their communities and collaborate with local organizations to promote cervical cancer awareness and advocate for accessible healthcare services.
    • Community outreach days with mobile screening and vaccination clinics are necessary to communities who do not have regular access.

In closing, the Fall Cervical Cancer virtual retreat has been a powerful journey of connection, support, and empowerment. As we reflect on the stories, insights, and shared strength of our attendees, we are reminded of the urgency to end cervical cancer once and for all. Together, we can make a difference. Whether you’re a cervical cancer patient, survivor, caregiver, or an ally in this fight, your voice and your actions matter. Join us in raising awareness, advocating for regular screenings and vaccinations, and supporting research for better treatments. Let’s unite to ensure that one day, cervical cancer is a thing of the past. Together, we can make this vision a reality. Join us in our mission by visiting cervivor.org, and together, we can help end cervical cancer.

Lastly, Cervivor, Inc. would like to thank our generous sponsors for supporting our mission of educating and empowering individuals impacted by cervical cancer to take action and create change in their local communities and beyond. Thank you to Seagen, Genmab, Roche Diagnostics, St. Jude Children’s Research Hospital HPV Cancer Prevention Program, and Genentech.

My Legacy, My Cervivor Footprint…In my Community

Cervivor is committed to closing the disparity gaps that have plagued communities of color for decades. In an effort to close those gaps, Cervivor invited cervical cancer patients and survivors from around the United States to participate in the Cervical Cancer Patient Advocacy Retreat for Communities of Color in our nation’s capitol, Washington D.C.

Why is this so important to our mission?
Research shows that while the rate of cervical cancer has been declining for decades in the U.S., health disparities persist. Hispanic women have the highest incidence rate of cervical cancer, followed by non-Hispanic Black women. Additionally, Black women are more likely to die from the disease than women of any other race or ethnicity. 

So, what is the consistent theme with these health disparities?
The consistent theme for these health disparities are health literacy and trust within the communities of color. As we navigated these themes, Cervivor ensured that each attendee:

  • Had a safe place to share their struggles, hurdles, and concerns in reference to their community and cervical cancer.
  • Was provided with information concerning cervical cancer, treatments, and screening. 
  • Understood their role as a trustworthy change agent in their community.
  • Embraced the opportunity to learn from various speakers and their fellow survivors about how they could utilize their voices to end cervical cancer in their community.
  • Developed a strategic plan to impact their communities specifically.
  • Made a commitment to assist in closing the cervical cancer disparity gap in their community.

It’s imperative that those impacted by cervical cancer have the knowledge and empowerment to lead the charge in changing the narrative for communities of color. Read the personal testimonies from a few of the attendees and the progress they have made since the retreat below.

Gwendolyn shares her thoughts on what this retreat meant to her:

“The Community of Color Retreat had great impact on my life and I have not been the same since. The moment I arrived at the retreat, I noticed everything was planned with so much love and hope, and personalized for us as a collective but also individually as well. We cried, we laughed, we learned, we inspired each other, we listened, and we gained confidence and much knowledge to not only advocate for ourselves but for others as well – within our families, jobs, and communities.“

Since the retreat, Gwendolyn has been instrumental in planning the National Patient Advocacy Awareness Day event with other Houston Cervivors and in co-leading an upcoming health fair for cervical cancer awareness.

Rosalinda shares her insights:

“For many of us, conversations easily continued into dinner, late evening, and early morning coffee meet-ups! We were clearly vibing and opening up to be vulnerable, witnessing and holding space for each other. Native American, African American, Asian, and Latina cervical cancer survivor’s coming together to listen, share, teach, and support each other was a powerful experience! My heart is filled with gratitude for how effortlessly this all unfolded. My most precious take away? Tamika’s loving challenge that following the retreat we step up and use our talents, abilities, gifts, unique perspectives to Do Something small or big, to end cervical cancer.“

After her retreat experience, Rosalinda has jumped in on National Patient Advocacy Day planning, joined as a Cervivor Español Outreach Committee Member, and continues to set goals for reaching low-income populations to ensure they have access to education, screening, and cancer prevention resources.

Janice gave us her thoughts too:

“Hope – grounds for believing that something good will happen. This retreat provided a breadth of information about studies on cervical cancer, as well as how to raise awareness in our communities. Discussing the health disparities across the nation opened my eyes that more needs to be done and that we need to be able to have open, sometimes uncomfortable dialogue to inform others so that they do not have to go through the same things that we did.”

Following the retreat, Janice has been spreading awareness about HPV and cervical cancer through various tabling events at her local college campus and by helping Cervivor raise funds during an early 2023 Kendra Scott Gives Back event.

Although the retreat has ended, the work does not stop. Each attendee made the commitment as a Cervivor Patient Advocate to assist in closing the cervical cancer disparity gap; by creating a culture of diversity, equity, and inclusion which includes supporting, educating, and motivating their communities that have been affected by cervical cancer.

It’s a great reminder that each day we all have an opportunity to provoke change by elevating our voices. We hold the power to save lives for generations to come. Help us continue to shine a light on these disparities by sharing our content with your networks.

Cervivor, as an organization, authentically embraces diversity, equity, and inclusion across all aspects, ensuring that individuals from various backgrounds feel valued, respected, and represented. The organization recognizes that diversity encompasses a wide range of identities and experiences, including persons with disabilities, religious or ethnic minorities, people of color, native/Indigenous peoples, women, gender identity, and sexual orientation.

Interested in learning more about future Cervical Cancer Patient Advocacy Retreats for Communities of Color? Connect with us at [email protected]!