Patient Advocates

PRESS RELEASE: Cervivor Founder and Chief Visionary, Tamika Felder Invited to Share Opening Remarks for First Lady, Dr. Jill Biden and the American Cancer Society’s Launch of The National Breast and Cervical Cancer Roundtables

WASHINGTON, D.C. – In February 2022, the American Cancer Society announced they would be launching two national roundtables: one for cervical cancer and the other for breast cancer. This was a response to President Biden’s call to action in reducing cancer incidence and death rates faster. This initiative is to bring together leading organizations and experts in the cervical and breast cancer space to drive progress and improve the lives of cancer patients, as well as their families.

The objectives of the national roundtables align with the President’s Cancer Panel’s report Closing Gaps in Cancer Screening: Connecting People, Communities, and Systems to Improve Equity and Access. 

The report addresses the need to:

  • Improve and Align Communication: Develop effective communications about cancer screening that reach all populations; and expand and strengthen National Cancer Roundtables that include a focus on cancer screening.
  • Facilitate Equitable Access: Barriers contribute to lower rates of cancer screening initiation and the recommended follow-up observed among many populations in the United States; there is a need to provide and sustainably fund community-oriented outreach and support services to promote appropriate screening and follow-up care plus increase access to self-sampling for cancer screening.
  • Strengthen Workforce Collaborations: Team-based care has the potential to improve implementation of cancer screening but in order to accomplish this, supportive policies and a commitment to team-based care approaches are needed which include the empowerment of healthcare team members to support screening plus having the opportunity for training and residency programs; and expanding access to genetic testing and counseling for cancer risk assessments to catch cancer early.
  • Create effective health IT: Providers and patients alike are faced with more information than they can process in a reasonable amount of time. Health information technology (IT) has potential to help providers, patients, and healthcare systems quickly access and effectively use clinical knowledge and patient-specific data.

Cervivor Founder and Chief Visionary, Tamika Felder was invited to speak on behalf of cervical cancer patient advocates and their families to increase awareness, impact change, and work collectively towards eliminating cervical cancer. Tamika and Cervivor, Inc. have been long-standing influencers on the panel since 2003, helping to provide vision as well as patient stories. She shares, “For me it is personal. My legacy won’t be the lives that I bring into this world but the lives I will save.”

First Lady Jill Biden attends an American Cancer Society Roundtable event, Monday, October 24, 2022, in the State Dining Room of the White House. (Official White House Photo by Adam Schultz)

Recording artist and cancer prevention advocate, Mary J. Blige shared the personal impact cancer has had on her family in recent years and why she has dedicated so much time to awareness. She phrases a key message, “I’ve dedicated time to making people understand their health is their wealth and urging them to make it a priority.”

American Cancer Society CEO, Dr. Karen Knudsen states, “We at the American Cancer Society represent all 1.9 million Americans that hear each year that they will have cancer and we are absolutely resonating with the goal of the Cancer Moonshot to end cancer as we know it.”

Dr. Karen Knudsen, Tamika Felder, First Lady Dr. Jill Biden, and Mary J. Blige

Dr. Knudsen also brings to light that breast cancer still remains to be the second leading cause of cancer death for women in this country and number one for Black and Latina women. 14,000+ women are diagnosed with cervical cancer and over 4,000 will die from the disease. Black and Latina women are again, impacted at nearly twice the rate as their Caucasian peers.

First Lady, Dr. Biden emphasizes there should be no woman left behind. There is an absolute need for collaborative efforts including the patient advocate voice because this impacts us all. The focus is to put patients and their families at the center of their cancer – from diagnosis to survivorship and we are rewriting the narrative of cancer.

“We don’t have to be afraid of cancer anymore!” 

First Lady Jill Biden bids farewell to singer Mary J. Blige, American Cancer Society CEO Dr. Karen Knudsen and cancer survivor Tamika Felder after an American Cancer Society Roundtable event, Monday, October 24, 2022, in the Red Room of the White House. (Official White House Photo by Erin Scott)

We stand with the First Lady, the American Cancer Society, and so many more leading organizations. We are committed to this mission as we are reminded of the daily impact in our community of a cervical cancer diagnosis, the treatment and difficulties in survivorship, and of those lives that have been lost from a preventable disease.  

Watch the full livestream recording here.

We’re Part of the Process

Kimberly Williams, Cervical Cancer Survivor

In July 2022, I was invited to my first NRG Oncology semi-annual conference as a newly appointed Patient Advocate. Many of you might be wondering, who NRG Oncology is and what they do?

NRG Oncology comprises the National Surgical Adjuvant Breast and Bowel Project (NSABP), the Radiation Therapy Oncology Group (RTOG), and the Gynecologic Oncology Group (GOG). Together they have more than 150 years of cumulative experience in conducting practice-defining, multi-institutional phase II and III trials sponsored primarily by the National Cancer Institute (NCI).

I’ve never had the opportunity to attend a large oncology conference like this before. There were so many emotions that ran through my head as my colleague and I rushed hurriedly through the building to locate our next sessions to attend. One thought that came to mind was “the why,” like why am I here? After attending the Patient Advocates forum I found that my why never changed. It was for the patients and for our community.

Sitting in the meeting encouraged me and helped me realize that all the patient advocates desire the same thing: we want change. We are equipped with the knowledge to make a difference. We have lived through this experience personally. This meeting was easy (at least easier than I anticipated) as I spoke about my cervical cancer story and my “why” for patient advocacy.

Just as I thought, “This is simple,” the next morning I sat on the panel for the Cervix and Vulva Sub-Committee with physicians, researchers, and so many more experts. I sat down next to the committee chair, Dr. Charles Leath. It was at that moment I said, “This is not simple.”

I was overwhelmed with emotion but soon felt confident because I understood the presentations as they related to clinical trials because I went through treatment as a patient. This one moment shifted my thoughts from ordinary to extraordinary. I realized that my voice mattered and it was important. The NRG Oncology semi-annual meeting was an opportunity I will never forget because it was a reminder that your “why” should be at the forefront of your patient advocacy.

Morgan Newman, Community Engagement Liaison

I was a patient advocate that was chosen on the other side of the NRG Conference with the GOG Foundation patient advocacy efforts. To understand their organization, let’s look at the history behind the Gynecologic Oncology Group:

  • It was founded in 1970 at the American College of Obstetricians and Gynecologists.
  • In 1993, the GOG Quality of Life Committee was formed and patient-reported effects of chemotherapy was the main protocol for their clinical trial development to continue to improve patient quality of life. 
  • And in 2014, their trial GOG-240 showed improved survival rates when bevacizumab was added to chemotherapy for advanced cervical cancer.

Now, this is only a brief glimpse into what this group has accomplished. I was incredibly fortunate to have the opportunity to be one of two Mary “Dicey” Scroggins Patient Advocacy Travel Award recipients. Through this scholarship, I was honored at the GOG Foundation dinner, attended working committee meetings, and learned from the dedicated professionals leading the work in developing clinical trials.

What I learned during this conference was that the GOG has set the standards for cervical, endometrial, and ovarian cancers. They continue in partnership with NRG Oncology to strive for a better future for patient care and outcomes in clinical trials. This experience has made me feel like I was truly part of that process.

When I was diagnosed with a metastatic recurrence of cervical cancer in 2016, I never would have imagined being where I am today as a patient advocate. I really didn’t understand or know how my voice could help make a difference but every time I have an opportunity to attend and interact with experts in the field, I am quickly reminded just how important it truly is and how far I have come since then. Sometimes these feelings are hard to put into words. It can be overwhelming to experience this as a survivor and a patient advocate but it’s something I appreciate and I am forever grateful for.

Kimberly Williams and Morgan Newman are both cervical cancer survivors turned patient advocates. Kimberly represents her state of Texas while Morgan is in Iowa. They are both passionate about making sure the patient voice is heard.