It’s time to stop leaving women behind when it comes to cervical cancer screening – USA Today

March has been a crazy busy month for Cervivor and for the visibility of cervical cancer prevention. An international awareness day! An editorial in a national newspaper! A piece of legislation introduced in Congress! As the month draws to a close, here is a recap:

An International Awareness Day

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The month kicked off with International HPV Awareness Day on March 4. The day featured online events, press conferences, webinars and more taking place around the world.

The awareness day may have come and gone, but the International Papillomavirus Society, the official sponsors of the day, have terrific posters and visuals you can download and share at any time. Their graphics can be be a great addition to your social media feeds!

An Editorial in a National Newspaper: USA Today

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Also in March, USA Today featured an editorial on the importance of cervical cancer prevention co-authored by Cervivor founder Tamika Felder and Anna Giuliano, Ph.D., the founding director of the Center for Immunization and Infection Research In Cancer at Moffitt Cancer Center. The editorial highlighted the need for more proactive screening in uninsured/underserved communities and expressed frustration at the lowering of cervical cancer screening goals in the recently-released “Healthy People 2030” national public health initiative. The editorial offered a strong call to action: 

“Decades of groundbreaking research have provided the tools to eliminate cervical cancer. Yet, every two hours a woman in the U.S. dies of this preventable cancer. It is time to stop leaving women behind and work collectively to get every woman, regardless of race, ethnicity, and socioeconomic status, up to date with cervical cancer screening. Let’s create a national goal to achieve cervical cancer elimination, a strategy for the U.S. to accomplish this goal and a revision of the Healthy People 2030 objectives.”

Share the article on your social media feeds. Make sure to highlight your personal passion for this issue and your involvement with Cervivor!

Legislation Introduced in Congress

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The “Promoting Resources to Expand Vaccination, Education and New Treatments for HPV (PREVENT HPV) Cancers Act”  was introduced in Congress in March.  Cervivor was quoted in the press release announcing the bill. This legislation would, if enacted in the future, address many of the education and health equity needs surrounding cervical cancer prevention.

Our voices and our stories and our advocacy will be important to move this bill forward. The introduction of a piece of legislation is only the start of a long chain of legislative steps that can ultimately lead to bill passage (or not). Bill passage can take years. Bills can get folded into other legislation. Bills can get debated by committee but never elevated to the House or Senate floor for a vote. In this case, the bill was sent to the U.S. House Energy and Commerce Committee, but so far, there is no companion measure over in the U.S. Senate. So there is a long road ahead… 

On the other hand, the introduction of a bill is itself a win! It means that members of Congress and their staff are paying attention to this issue, and Congressional attention can translate to media attention and enhanced media coverage. It means that there will be future conversations as the Congressional sponsors seek other co-signers and supporters. We at Cervivor, are in it for the long haul, advocating and  sharing our stories.

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.