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.

“We’re In!”

I started treatment for cervical cancer in spring of 2016. One of the first things I did was start searching for those with my cancer. When I found Cervivor, I immediately knew it was special.  It was a sisterhood of survivors, but they were also advocates! Cervivor was dedicated to eradicating our cancer. It wasn’t just a group of women looking for support, but it was a group of women who had been through it and were DOING something! I like to say that joining Cervivor and being trained at Cervivor School has given me advocacy wings.  I have had many opportunities both in my community and on the national level to participate in events as a Cervivor Ambassador. Most recently I was asked to represent our organization at the National HPV Vaccination Roundtable, in Atlanta. I had interacted on the Roundtable’s Facebook page, and felt like I had working knowledge of the collaboration. They are about stopping HPV…sign me up!

The Roundtable meeting began with a lunch. I arrived alongside Tamika Felder, Cervivor’s founder. The first thing I noticed was that we could hardly get to a spot at a table because everyone was wanting to speak with Tamika. They would greet her, as lifelong friends. Many of them had questions about Cervivor and other projects Tamika has in the works. Attendees were quickly inquiring about me and my role. They were interested in me as a Cervivor Ambassador and very excited to meet an HPV cancer survivor. I began to realize what it meant to be at this meeting. These were the countries top doctors, healthcare professionals, and researchers who had worked in this space for years! These were representatives from other organizations, our (Cervivor’s) partners in eradicating HPV and HPV related cancers! Tamika and Cervivor had been part of this collaborative group since it’s inception! I was so proud to be a part of a cancer nonprofit that is so well respected in this space. It further affirmed my initial feeling that when I found Cervivor, I found something special.

“Empowering Parents and Allies” task group

The meeting was an exciting two days packed with a lot of information and a lot of work! Each organization that is part of the Roundtable sends at least one representative. Those representatives are broken into task groups of their choosing. The task groups are just that, groups with an assigned task to help advance vaccination rates in the U.S. and spread awareness, education, and facts about HPV and the vaccine. The public educator in me was drawn to the “Empowering Parents and Allies” task group, as reaching families with knowledge is at the heart of many things I do. Most of the first day was spent in our task groups, reviewing previous work and annual goals, as well as setting new goals and collaborating with other task teams that may be partner groups in reaching these milestones. Our first evening was full of dinner presentations with updates from each task group and a celebration of the hard work and victories achieved by the Roundtable throughout the year.

The second day of the meeting was just as full. Each moment was packed with presentations from medical teams who are on the front line of vaccinating in the family practice setting, to panel discussions from research scientists on how the social media statistics can work in favor of our messaging. We had a working “Jeffersonian Lunch,” ensuring that time was purposeful and well spent. Every second was full of collaboration, information, and getting to the center of how we can change the HPV vaccination narrative in our country and strive to significantly reduce HPV cancer rates.To be honest there was so much information, that I joked with one of the other attendees at our table about how absolutely full my brain was by the end of lunch on day two. It felt as though it could not hold one more piece of information, fact, or even tidbit. I had officially hit my limit and the “meeting glaze” took over. You know, the glaze you get when the presenter’s voice starts sounding like the Charlie Brown teacher?

It was an honor to work with such an amazing group of professionals. My eyes were opened and faces were given to the people who are diligently working to spread the truth about HPV and a vaccine that is cancer prevention. How exciting to see the position that Cervivor holds among the nations top scientists, doctors, and cancer organizations. We are part of that! We are on the front lines of eradicating HPV! Cervivor is right there, side by side, elbow to elbow! We are rolling up our sleeves and deep into the space of changing the narrative on this virus and educating the public on how acting now can impact generations to come! I was so proud to be a part of this National Roundtable, but I was even prouder to be representing Cervivor. We’re in!

 

Holly Lawson is a two year cervical cancer survivor. Cancer has left her with many challenges, including Chronic Kidney Disease, but she is fighting for her survivorship and currently training with the Ulman Cancer Fund in the Cancer to 5K Program. She is an active Cervivor Ambassdor, who is finding healing in advocacy and sharing her story.