Three Years Ago, a Capitol Hill Visit Pushed Me Out of My Comfort Zone

This month marks three years since my first advocacy experience with Cervivor. Three years ago, in February 2018, I  jumped completely out of my comfort zone, boarded a plane alone, and flew to Washington DC to meet up with a group of women I’d never met to advocate for cervical cancer screening guidelines on Capitol Hill.

I had absolutely no idea what I was getting myself into, but I never could have imagined the empowering and validating journey the decision to take part in that “Cervivor’s Lobbying Day on the Hill” would mark the beginning of. 

Tracie meeting with legislators on Capitol Hill in 2018.

Despite never having met any of the other women in person, I was instantly at ease with each of them. Experiencing the positivity of the  relationships that can develop when you have a common goal, passion, and past is something I will forever be grateful for. I’ve never forgotten the feelings and emotions of my first Cervivor experience and the deep connections that so quickly evolved!

My “why” was formed as I realized our stories were being heard.

My “why” was fueled as I realized that our stories mattered and held the potential to evoke change. 

Prior to this trip, my experience with Cervivor was online chats and questions with our late lead ambassador, Erica, who actually introduced me to Cervivor. I’d read tons of the posts on the Cervivor groups on Facebook but had engaged in only limited interaction. That has since changed! This group was – and still is –  better than Google when something felt off or when I just needed advice on navigating my cancer journey. 

Prior to this first advocacy experience, I’d known deep down that I needed to tell my story. I knew enduring, and surviving, two battles with cervical cancer by age 31 was bound to have a greater purpose. I had tossed around the idea of blogging a little here and there, and I had  told parts of my story once at a local breast cancer event. What I had done the most of though, was question if my story was something anyone outside of my immediate family and friends would ever need or want to hear. I no longer question that.

Three years ago, during this quick trip to Washington, DC,  I learned the importance of sharing my story. Of sharing OUR  stories. I learned how much more impactful it is to advocate with others. The diverse paths of our cancer journeys spoke volumes to the ears they fell on. I learned firsthand how we truly are stronger together.

My fellow Cervivors at Lobby Day 2018, and my “Why” today.

I am personally stronger, bolder and more confident as a result of my connection with Cervivor. Today, I continue my mission for the women in this photo. Too many lost their lives to cervical cancer. Holly. Teolita. Brittany. Today, they are a core part of my “why” – why I’ll keep story sharing and educating and advocating. They were a lifeline for me that day on the Hill and beyond. I continue for them. I continue for me. I continue for women everywhere who we can protect from cervical cancer.

My kids are also a big part of my “why.” As a mom of two boys, I want to shout from the rooftops that the HPV vaccine is safe and effective not only for girls, but also that we should consider it our parental duty to vaccinate our BOYS, too! This is part of my story now, and how I use my voice and my story to make change.

Remember, there will always be someone that needs to hear your story. Someone somewhere will always find hope in reading or hearing your story. Someone will always find themselves being educated through your story. If you haven’t done so, take a leap outside of your comfort zone and share your story today at https://cervivor.org/stories/.

Tracie lives in Alabama with her husband and two boys. She was originally diagnosed with stage 1b cervical adenocarcinoma in November 2013 just before her 28th birthday and had a recurrence in 2016 at the age of 31. Tracie has been an active advocate, using her voice and her story to educate her community about cervical cancer prevention. Read some of the news articles that have resulted from her outreach.

Read Tracie’s Cervivor Story

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.