Friday, October 21st, 2022

Contact: Venusgines@gmail.com

 “Breast Cancer is A White Women’s Disease…”: One Latina’s Mission to Advocate for Equity in Breast  Cancer Prevention

By Venus Ginés

When a slip and fall landed me in the emergency room in 1992, a young doctor asked me, among other  things, if I had had a mammogram. I told him that I didn’t need a mammogram because “I’m Latina,” we  get cervical cancer, “Breast cancer is a white women’s disease.” The reason being that everything I’d  seen about breast cancer featured white women, not Latinas- like me. 

Breast cancer does not discriminate, he told me. 

My mother had been one of the victims of the sterilization abuse of Puerto Rican women. So, I had  reservations about this conversation. However, after getting a phone call that one of the lab tests  resulted in a diagnosis of lupus, I decided to get a mammogram, a subsequent ultrasound, a biopsy and  then the bad news. The nurse’s words will be forever ingrained in my memory, “Venus, I wish I could say  it was benign.” I dropped the phone. 

In 30 years, I have not seen Latinas in general market media, openly discussing their breast cancer and  encouraging other Latinas to get screened. That changes with me. Despite being the largest minority group, Latinos still take a back seat in many DEI discussions, perhaps it is because there has been  more advocacy toward racial diversity and not much for ethnic discrimination.

The Making of an Advocate

My first bout with breast cancer led me to become a passionate advocate for Latinas with breast cancer.  In the wake of my diagnosis, I launched “Una Nueva Esperanza” (A New Hope), a bilingual fotonovela  describing a single mother’s plight with breast cancer, followed by a fotonovela on prostate cancer.  Soon after, I founded Día de la Mujer Latina (DML), a nonprofit organization that held our inaugural  signature health fiesta in 1997, in conjunction with a new program to train Promotoras and Community  Health Workers (P/CHW). Together, we’ve dedicated the past 25 years to providing Latinas with  accessible and affordable breast and cervical cancer screenings, in partnership with local community based organizations in 39 states, Puerto Rico, Dominican Republic, and Mexico. 

In 2017, I felt a lump and requested a mammogram and ultrasound, but nothing showed. So, the nurse  practitioner ordered an MRI. Luckily, the infiltrating lobular & ductal breast cancer was caught early. 

This summer, while celebrating my 5-year survivorship, I once again felt a mass on my left breast and  again, nothing showed up in the mammogram or ultrasound but this time I requested the MRI, then the  biopsy confirmed my suspicion

My current diagnosis is triple negative-invasive lobular carcinoma, an aggressive form of breast cancer.  This time I will document my journey, including my pursuit of a clinical study, to offer our Brown and  Black communities a step-by-step guide on how to advocate for themselves and how to enroll in clinical  trials. 

As I begin my third battle with breast cancer, I’m reflecting on what progress has been made in the past  30 years to treat breast cancer. I am hopeful. I am more emotionally and spiritually equipped to take

this fight for my life. I then reflect on the lack of progress that has been made in improving breast  cancer outcomes as it relates to women of color as patients. 

Health care stakeholders and government agencies spend millions for institutions to study what we  already know: Latina women are getting left behind when it comes to cancer screenings and clinical  trials. One in six people in the U.S. identify as Hispanic or Latino, yet only 2% are clinical trial participants  — a figure that’s barely moved in decades. Clinical trials can save lives, but they are not “accessible” to  everyone, especially Latinos, since the clinicaltrials.gov does not even have a Spanish translation feature. 

To narrow this gap, those holding the purse need to do more than spend money on researching the  issue. We need significant, systems-level changes to address the barriers keeping Latinas from getting  the information, screenings, and treatment they need and deserve.

An easy lift is to make sure that medical information is both accessible and culturally and linguistically  appropriate. This is one of the many social determinants of health that we’ve invested time to provide.

Health care stakeholders and government agencies often contract 3rd party vendors to translate  information and health education in Spanish, but these vendors may not understand that some graphics  or wording may connote the wrong message. Cultural competency is glossed over. One example is a  series of infographics related to COVID and subsequent variants pushed out earlier in the pandemic. The  images had featureless faces — a serious issue as many Latin Americans immigrants view such  illustrations as a symbol for domestic violence. 

Likewise, government websites and other sources of health information often use a direct, word-for word translation into Spanish that can backfire. Content can be as high as a 12th-grade reading level,  and translations — while technically accurate — can be counterproductive. For example, type in “clinical  trial” into Google translate, and you’ll get the word “ensayo” in Spanish, which for many of our Latino  community means “experiments.” Not the appropriate word to use for a community whose living  memory includes families like mine who were impacted by medical abuse. As a result, many CBOs can’t  rely on “authoritative” websites to share appropriate health information with their communities. 

But while necessary, the right information in the right hands is only the first step. 

In the last 25 years, while DML and other CBOs continue providing many women of color the  opportunity to receive free clinical breast exams and cervical cancer screening, the government has not  adequately funded grassroots initiatives to provide many of our Black, Indigenous, and People of Color  (BIPOC) these important early detection screening opportunities. Systemic issues, such as a lack of  sustainable employment, transportation, unconscious bias, and access to health insurance, including  screening programs, are perceived by many Latinas as barriers that they can’t control. 

As we celebrated Latino/Hispanic Heritage Month, our food, our music, our celebrities, and our history,  let’s also encourage our friends and family to seek cancer screenings and push our government and  healthcare leaders to address the barriers keeping Latinas and other BIPOC from protecting their health  and saving lives.