HPV

Without Patient Stories, We Walk into a Firefight with a Calculator

Storytelling is powerful. Storytelling is compelling. In this age of social media, stories have evolved from words and pages to photos, memes and videos. Unfortunately, “anti-vaccination activists have weaponized stories and weaponized misinformation” and have used their stories to undermine the broader adoption of the HPV vaccine around the world.

Dr. Noel Brewer, chair of the National HPV Vaccination Roundtable, shares why patient stories are essential to combating the anti-vaccination movement.

“Antivaccine activists rely on story telling. We scientists come back with statistics and numbers. While our statistics and facts may be true, they have little power in this arena. We walk into this firefight with a calculator.”

“In the real world, statistics and data don’t hold power, except on pages of a medical journal. What matters is people and their lived experience. Having powerful stories cuts through to what matters.”

Cervivor stories can help fight against the anti-vaccination narrative.

The power of the story in the hands of Cervivor can be used to grow cervical cancer awareness and expand HPV vaccination.

“Vaccine hesitancy is one of the global threats of public health. Legislators and policymakers increasingly seem to think vaccination is waning. That isn’t true. It’s just that the few anti-vaccine people are so loud. They have an outsized voice that is dangerous to the public’s health and well-being.” Their voice can cause people to hesitate, rather than to move forward with HPV vaccinations for their daughters and sons.

In the U.S., HPV vaccination is in fact drifting upward – around 66% of teens have had at least a dose, if not the full course, Dr. Brewer reports. “This is a big accomplishment. But our goal at the National HPV Vaccination Roundtable is to reach 80% having all the recommended doses. This vaccine will save tens of thousands of lives. It’s remarkable that people say ‘no’ to a cancer vaccine. The antivaccine movement and the stories and falsehoods they share play a role in that.”

We have to make our stories as loud and compelling as the stories of the anti-vaccine activists.

Dr. Brewer’s Advice to Cervivors: Have an Elevator Speech

“One thing I would encourage survivors to do: have the elevator speech of your story. There will be many many opportunities to tell your one minute version. It is not so often you have 20 minutes, or even five minutes. But when you introduce yourself, when you meet someone, when the opportunity arises, have your one minute story. Have a few different one minute versions of the different parts of your story. Talking about your lived experience is powerful, and you can have huge impact even in a short time frame.”

In fact, Dr. Brewer many times shares some of the one minute Cervivor Story videos on the CervivorTV Youtube channel. He and his colleagues have shown Lisa Moore’s video hundreds of times, at meetings all around the world, to focus audiences on “what really matters” when they are discussing the HPV vaccine. Lisa lost her life to cervical cancer in 2017, but her story has lived on in a hugely impactful way. All of our stories can have this impact too.

Do you have your elevator speech?

What will you share?

Tap in to Cervivor’s videos, resources and trainings to shape your story, enhance your advocacy and use your voice to end cervical cancer.

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-related cancers.

Black History Month and the Disparities Still To Overcome

As we discussed in an earlier post, advancements in the understanding of cervical cancer and the invention of the HPV vaccine are inextricably intertwined with Black History Month (February). Why? Because the “HeLa cells” used in groundbreaking scientific research were from the cells of Henrietta Lacks, a young Black woman who lost her life to cervical cancer in 1951 and whose cell lines have transformed modern medicine.

While HeLa cells were critical to the science that led to the HPV vaccines that have the power to prevent cervical cancer, today Black women in the U.S. bear a disproportionate burden of cervical cancer. Although  cervical cancer occurs most often in Hispanic women, Black women have lower 5-year survival rates and die more often than any other race.  In fact, they have nearly twice the cervical cancer mortality rate compared to white women. 

Why?

Interestingly, while most women with cervical cancer were probably exposed to cancer-causing HPV types years before, on average, Black women do not receive a diagnosis until 51 years of age. That compares to white women who have a median age of cervical cancer diagnosis at 48. Those three crucial years could make the difference between a treatable versus terminal cancer.

Why?

Researchers have reported that due to social and economic disparities, many Black women do not have access to regular screenings. Screening programs often fail to reach women living in an inner city or rural areas because of lack of transportation, education, health insurance, primary care providers who can perform cervical cancer screenings, or availability of nearby specialists for follow-on care.

How can we make a meaningful difference? 

The underlying causes of health disparities are complex and are multi-layers with lifestyle factors (obesity, cigarette smoking, etc.), socioeconomic factors (access to health insurance, access to healthcare providers), representation in research (clinical trials), and much much more. Yet there are still meaningful ways to make a difference.

Help increase screening rates.

Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.

The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) has programs – and importantly, partnerships – in place across states, territories and tribal lands.

For example, in South Carolina, NBCCEDP has brought screening to underserved communities in collaboration with nonprofits and faith-based groups including The Best Chance Network and Catawba Indian Nation. In Nevada, programs with Women’s Health Connection increased screening numbers by 30%. Connect with your state’s screening programs. Share info about local screening programs and events. 

Encourage HPV vaccination

Encourage clinical trial participation

A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc. 

During this year’s Black History Month, let’s work together to change the history of cervical cancer.