I had data and statistics in my talks, but that wasn’t telling the story that would move people to action

Chair of the National HPV Vaccination Roundtable, Dr. Noel Brewer has given hundreds of talks at scientific conferences and meetings across the globe. He’s advised the Centers for Disease Control and Prevention and the World Health Organization on vaccination.  He’s one of the most cited researchers in the world. His credentials are impeccable, yet much of the time when he starts a talk, he defers to the experts: patients.

His solution: “Always have people speak who have had the experience. When someone speaks who has had direct experience with cancer, it clears out the mental clutter. It makes you feel. It sets the stage for the important work that will follow.”

Dr. Noel Brewer has shared Lisa Moore’s Cervivor Story hundreds of times to “help people grasp the importance of preventing cancer.”

“To hear about the diagnosis and that awful waiting period. About what they have gone through – the symptoms, the damage caused by treatments, the possible loss of fertility.  These are key parts of the story that survivors can speak about in a personal way that doctors, scientists and other experts simply cannot.”

“As scientists, we often talk about cancer in abstract and technical terms. We convey a lot of important information that doesn’t connect with people’s feelings and imagination. But how can we help people grasp the importance of preventing cancer?” reflects Dr. Brewer.

Dr. Brewer regularly starts his talks with the voice of Lisa Moore. Lisa died of cervical cancer in October 2017, at age 31. Yet through her powerful Cervivor story video, she has educated and impacted thousands.

“I had data and statistics in my talks and trainings, but realized I wasn’t telling the full story. So now, I leave that to Lisa Moore. In her video, she tells the story of her fight with cervical cancer. It’s one minute. It’s powerful. It’s heartbreaking. Every time I show the video, I’m moved by it. And I’ve seen it more than 150 times.”

“At first, Lisa is sitting. She is sewing. She tells her story in very simple and concrete terms. We see her partner in the background, watching her. Every time I show it, people pause and struggle to collect themselves. We sit with Lisa. We feel her pain and her call to action. We take a deep breath together, then we get focused on the work of what we are going to do to prevent cervical cancer.”

Lisa was a true champion for prevention. She educated and advocated and was telling her story…until she could no longer. Lisa lives on in her Cevivor story and in her video, and her passion for prevention and call to action has been seen, heard and felt by researchers, healthcare providers and policy makers around the world. Not just through Dr. Brewer’s use of her video into his talks, but by many others.

“I do many ‘train the trainer’ sessions about HPV vaccination, and connections happen based on Lisa’s video. People often come up to me after, asking if they could also incorporate Lisa’s video in their own outreach. Working with Cervivor, we’ve shared the video many times and amplified the reach of Lisa’s message.”

In video or in person, “Cancer survivors speak with certain authority,” says Dr. Brewer. “You are a moral voice on cervical cancer and all of the ways it affects lives. I don’t know anyone who can speak as powerfully.”

“We’ve shared her video at Cervivor events, and it has been seen and shared many times via our social media platforms. But Dr. Brewer is the one who has really helped to get Lisa’s story to the masses and I am personally thankful to him for that,” said Tamika Felder, founder of Cervivor. “Lisa wanted her story to be shared. She wanted the world to see that not only what cervical cancer had done and taken from her; but also, that it in fact it was not an easy cancer. She wanted her story to help get people vaccinated against HPV so they would not have to suffer the same fate. Dr. Brewer has helped me keep my promise to Lisa. For that I am forever grateful.”

Are you sharing your story?

If you haven’t yet, add your story to our Cervivor Stories. Write a blog post about your experience or your advocacy or about a milestone or simply a memory or reflection and send it to info@cervivor.org. We can publish it and add it to the voice and reach of our Cervivor blog.

As Dr. Brewer reminds us, stories matter. Stories motivate. Stories change minds. Our community’s work sharing our stories is powerful.

A professor of Health Behavior at the University of North Carolina Gillings School of Global Public, Dr. Noel Brewer studies health behaviors. He examines ways to increase HPV vaccine uptake, and his research led to the development of “The Announcement Approach” to train providers to communicate more effectively about HPV vaccination and other vaccines for adolescents. Dr. Brewer chairs the National HPV Vaccination Roundtable, which brings a wide cross-section of stakeholders together to raise HPV vaccination rates and prevent HPV cancers.

Erica is not physically here, but she is entirely present in the very fiber of what we do at Cervivor

Today marks what should have been Cervivor Ambassador Erica Frazier Stum’s 35th birthday. 

She died December 27th, 2018 from cervical cancer. Yet her passion, her fight, and her spirit live on in Cervivor. Her zest for life, and her never backing down when things get tough, live on in me and in so many of us in the Cervivor community. 

Erica told me many times that she did not believe in an afterlife. She believed in THIS life. Even when she was losing hers. Even when cancer was taking her away from us bit by bit, she was living her life and sharing her story. In fact, she created for herself a “living life list” – deliberately not calling it a “bucket list” but rather an active, living and breathing list of experiences she wanted to have and things she wanted to do in what she knew would be a final chapter in her young life.

She did not get to complete all of the items on her living life list. But in me, in you and in Cervivor, her work continues. Her story, her heart and her passion are in the very fiber of what we do at Cervivor each time we support each other, each time we educate, and each time we share our stories. For me, Erica is not physically here…but she is entirely present.

I wrote Erica a birthday letter today and decided to share it with our Cervivor community. Those of you who knew her may share in my thoughts and reflections. Those who are  dealing with cervical cancer or its aftermath can, I hope, take comfort in her story. Those of you who have lost a loved one can I hope share in the appreciation that our loved ones are still with us, even when they are gone. 

Erica would not like the use of terms like “battle” and “lost.” She would not tell you that she was a “fighter.” In her mind, she was simply a “life liver.” She lived with purpose and meaning and passion. ” I tried to do my best to honor her in that way. This is for you, Erica.

Dear Erica,

I remember meeting you. We were in touch via email at first. You were preparing to head to our Cervivor School in San Diego in September 2015. You were sick. I told you not to come, as I was concerned about you getting on a plane. You came anyway. You couldn’t stay away – despite or because of everything, you wanted to more directly engage in our work and our mission. You challenged me. You challenged yourself. You challenged the world. And you changed it. By the end of 2016, you’d attended four Cervivor Schools – to not only keep honing your own advocacy and story-sharing skills, but to serve as a mentor to other Cervivors. In the midst of  dealing with this disease, you became our Lead Cervivor Ambassador. You became one of our most dedicated patient advocates. 

While fighting to end cervical cancer, you were losing your life to it. Yet, even when your diagnosis was clear that the cancer was terminal, you shared, you educated and you advocated. You did this from home, from your hospital bed and then ultimately, from your hospice bed. In your life and in death, you are a testament to why our work matters.

Erica, you would be so proud of Cervivor and all of the work we are doing as a community. Despite this pandemic, we’ve creatively found new ways to connect, educate and support each other. (You would have been all over the virtual scavenger hunts!) You would be so proud of your family. Your husband JR has shared  your story and motivated so many to get the HPV vaccine for themselves and their children. Your parents and siblings remain actively engaged with us, hosting fundraisers and  donning teal and white on Tuesdays then sharing posts on social media to inspire and educate. Your closest friends have shown up in so many ways. Gretchen even got the HPV vaccine. And, yes, they are on message! Mallory makes sure of that. And Wylee. Your son. He’s so big now. You would be so proud. 

Erica, you would be devastated to know that cervical cancer still takes its toll. That women here in the U.S. and around the world are still losing their fertility – and their lives – to this entirely preventable cancer. I know you would be angry as hell. And I know that frustration would fuel you to action. I know you would remind all of us to keep going, and keep educating, sharing and advocating and never give up, no matter how sick and tired (literally and figuratively) we might be. 

You’d be proud of our recent Cervivor School graduates, our Cervivor Ambassadors, our story-sharers, and the members of our online communities who post and share and support in an ongoing conversation that serves as a lifeline for so many of us. There is so much of you in each of them. In all of us.

You are not physically here, but your story, your words, and your message is still comforting people, educating people, changing hearts and saving lives. We miss you.

I miss you. 

Join me in honoring Erica today by creating – or adding to – your own living life list. She’d want us to live fully, embrace new experiences, tackle challenges, support each other, and plug into our skills and passions to end cervical cancer.

Happy Birthday, Erica. 

xo Tamika