In Memoriam

We have to talk about the other side of cervical cancer. The side of loss.

These are just some from our community and beyond who have died from cervical cancer. Their stories not only matter, they need to be perpetually in motion. Everything we do as an organization includes their footprint — their hope for a different future.

We met some of them from attending Cervivor Schools together, and others we got to know in virtual settings like Creating Connections and through our Facebook group I’m A Cervivor!. Some people come into our community seeking support from others who truly understand the burden of cervical cancer and others decide that patient advocacy is their calling.

It is truly our stories that connect us. These stories that we read and reread, often finding an intersection with so many of them. These stories continue to fuel us, inspire us and give us our wings, as Holly Lawson would often say.

Many of these women never hesitated in offering support to others. Each brought their own strength, humor and honesty to so many inside and outside of Cervivor. Like Grace, who found Cervivor in 2020 and was a huge presence within our virtual community. Many were also dedicated advocates who were shame resilient and knew they wanted to transform the narrative of cervical cancer.

Nothing about having or living with cervical cancer is easy and dying from it brings a great sadness that ripples through our community, leaving us devastated yet profoundly grateful for the experiences we shared. Together we find comfort and the strength to move forward with purpose.

The fact that our sisters, mothers, daughters, partners and friends continue to die from cervical cancer means our work and support is crucial. We will always remember those who sought connection, an understanding of their disease or the willingness to shine a light on cervical cancer.

Cervical cancer is the fourth most common cancer in women. In 2018, there were approximately 570,000 new cases of cervical cancer diagnosed globally and about 311,000 died from the disease. Cervivor wants to change these statistics.

By honoring these and so many other women, we make a promise to carry on their legacies in the work we do every day. Together. We will not stop.

Jeanette Acosta… We will not stop.

Grace Chantiam Bracci… We will not stop.

Laura Brennan… We will not stop.

Curtissa Clay… We will not stop.

Amanda Filkins… We will not stop.

Kristen Forbes… We will not stop.

Debbie Jane Forsyth… We will not stop.

Rebekah Elizabeth Fowler Griffin… We will not stop.

Dawn Fraga-Mejia… We will not stop.

Lisa Riebersal Moore… We will not stop.

Alissa Gores… We will not stop.

Elizabeth (Lizzi) Marie Haas… We will not stop.

Princess Ruth Joanna Howard… We will not stop.

Dr. Tessa Maria Klein… We will not stop.

Holly Latrelle Lawson… We will not stop.

Christine Lerch… We will not stop.

Heather Lyn Martin… We will not stop.

Angela Mckibben… We will not stop.

Catherine “Cat” Odderstol… We will not stop.

Iona Pierre… We will not stop.

Kelly Pozzoli… We will not stop.

Brittaini Qadri… We will not stop.

Nanette Quitanilla… We will not stop.

Teolita Rickenbacker… We will not stop.

Jillian Scalfani… We will not stop.

Erica Frazier Stum… We will not stop.

Brittany Wagner… We will not stop.

Mary Lucille Fuller Walker… We will not stop.

Becky Wallace… We will not stop.

Carneese J. Williams-Ackles… We will not stop.

If you would like to honor a loved one who has passed from cervical cancer, please fill out this form.

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.