Alma Zuniga kept her cancer a secret for as long as she could. She hid the evidence under wigs and makeup, and with eyebrow pencils she’d use to draw on facial hair every morning before work.
“When people start talking about cancer, they’re going to say, ‘Well, what kind of cancer do you have?’” she said.
Her answer — that she’d been diagnosed with human papillomavirus, and the HPV had turned to cervical cancer — felt too intimate to share. When she received her late-stage diagnosis in 2013, Zuniga was in her late 40s. She remembers her oncologist in Fort Worth saying her uterus was “very, very angry.”
When she looks back, Zuniga blames her ignorance. Back then, she didn’t know much about cervical cancer, a disease that disproportionately affects Hispanic women in Tarrant County, Texas and the country.
The disparities deepen across county lines. Although their incidence rates are similar, Hispanic women in Tarrant County are more likely to die from cervical cancer than Hispanic women in Dallas County, according to a recent study funded by the American Cancer Society.
The differences stem, in part, from a lack of education about cervical cancer and a lack of access to care, according to Marcela Nava, a health equity researcher and assistant professor at The University of Texas at Arlington. For some women, local and state policies make that access even harder.
Cervical cancer could be eliminated ‘in our lifetime’
Cervical cancer is almost always caused by HPV, a virus that can pass from person to person through sex, and is typically preventable. “We can eliminate it in our lifetime,” said Erika Thompson, an assistant professor at the University of North Texas Health Science Center.
The U.S. Food and Drug Administration approved the HPV vaccine in 2006. Texas almost mandated the vaccine when Rick Perry was governor.
“A lot of our other cancers, it’s hard to pinpoint: What do you need to do to prevent this cancer? For cervical cancer, we know. It’s pretty straightforward,” Thompson said. Much of her research centers HPV prevention.
But not everyone knows about or accesses vaccines or preventive screening like Pap smears and HPV tests. Disparities along the “spectrum of prevention” contribute to disparities in cervical cancer incidence or death rates, Thompson said.
When it comes to preventive care, Hispanic women are less likely to get screened for cervical cancer or follow-up after screening than non-Hispanic women. Consequently, they’re more likely to receive a late-stage diagnosis, said Nava, with UT-Arlington.
When Zuniga first learned she had HPV in 2011, she didn’t know much about the virus, or what it could become. After her appointment that day, she didn’t know much more, she remembers. Her doctor told her to return for a check-up in six months. She didn’t. She was an independent contractor and busy traveling for work. “And in the back of my head, I kept saying, ‘I need to go to the doctor,’” she said.
When she started bleeding two years later, she did. By then, she had stage three cervical cancer.
“That’s like being hit with like a Mack truck, because you’re living your life one day, and then all of a sudden you’re told, ‘OK, you have cancer,’” she said. “And I really didn’t even know. I just didn’t even know anything.”
Zuniga grew up near Saginaw. When she was diagnosed, she had a good job and good health insurance. But hard conversations about the body weren’t part of Zuniga’s life before her diagnosis. She thinks it’s common for Hispanic families to avoid discussing sexual health.
“Sexuality is something that is not spoken of in our households,” she said. “It’s just not. And I know that, if we’re not speaking of sex, we certainly aren’t speaking of ways to protect ourselves.”
Public policy as a barrier to cancer care
Beyond cultural preferences, barriers like language differences and immigration status can complicate a person’s knowledge about and access to care, Nava said.
Undocumented Hispanic women in Tarrant County may be uniquely vulnerable to poor cervical cancer outcomes. The American Cancer Society-funded study, which hasn’t yet been published in full, identified a lack of access to cancer treatments for undocumented women as a contributor to cervical cancer deaths. That lack of access stems in part from local and state “policy levers,” Nava said.
For years, JPS Health Network, the county’s public hospital district, has declined to allow undocumented immigrants into JPS Connection, its charitable care program. Although state law permits the choice, the longstanding policy has provoked ample discussion by the system’s board of managers, as well as national news coverage.
Policies like this one leave “an entire group of women unable to access life-saving or potentially life-saving treatment based on nothing but their immigration status when they would otherwise be eligible,” Nava said.
The 11-person board of managers at JPS Health Network can approve hospital policy with a majority vote at any of their monthly meetings, according to Steve Montgomery, a longtime member of the board. The board has voted to include undocumented immigrants in JPS Connection in the past and could do it again. “Given the political environment, I don’t believe it is likely to occur any time soon,” Montgomery said.
Members of the board who voted to exclude undocumented immigrants in the past said they did so because they couldn’t justify subsidizing care for people who were undocumented when they turned away citizens who were poor but didn’t meet the income requirements for JPS Connection, according to Fort Worth Star-Telegram coverage.
JPS Health Network does offer discounted pelvic exams and cervical cancer screenings to eligible women regardless of immigration status through its family planning program. Also, anyone who is uninsured, including undocumented women, qualify for a 40% discount for cancer treatment, said Michelle Haynes, the system’s director of eligibility and enrollment. Some people may even get an 80% discount, depending on their income level.
People in JPS Connection only pay a copayment, so their discount is higher, she said.
At the state level, undocumented women who live in Texas and meet certain income requirements can also access subsidized screening and diagnostic services through the Breast and Cervical Cancer Services program. If those women receive a cancer diagnosis from the screening, however, they’re not eligible for subsidized treatment from the state’s Medicaid Breast and Cervical Cancer program.
A key difference between the programs, Nava said, is who controls the eligibility requirements. The Centers for Disease Control and Prevention funds the first, so “Texas doesn’t get the choice to impose its own eligibility requirements,” she said. Because both state and federal grants fund Medicaid, she said, the Texas Legislature could choose to extend Medicaid coverage for undocumented immigrants.
‘More than just what we do on the front lines’
In the meantime, help that extends to people who are undocumented exists in local pockets. Until last year, Tarrant County Public Health administered a program called For Her Health, which provided free and discounted cervical cancer screenings to women who, regardless of immigration status, met certain income requirements in the county.
The program closed after losing staff in the early months of the pandemic, according to Dr. Kenton Murthy, the assistant medical director of the county health department. The county still offers free HPV vaccines and discounted pelvic exams, which can identify cervical cancer.
Murthy redirects some people to a local federally qualified health center like Northside Community Health Center, which offers women’s health services and can provide discounted cervical cancer screening and diagnostic services for qualifying patients regardless of immigration status. The center had a waitlist earlier this year but doesn’t right now.
Nonprofits in the area help fill some gaps. Cancer Care Services provides free assistance, including financial support, to cancer patients, survivors and their caretakers. The organization also serves people who are undocumented, according to James Earl, director of outreach and health equity.
Because subsidized care options can be difficult to find for undocumented cancer patients, the nonprofit works to “alleviate the burden of having to pay for treatment” by helping offset other costs like rent, he said.
“We are doing the best we can with the resources we have,” he said. “But realistically, the wide-sweeping change that we are looking for in our community is going to take more than just what we do on the front lines. Even on the policy level, that is not just a one-shot deal.”
“We are doing the best we can with the resources we have.”– James Earl, director of outreach and health equity at Cancer Care Services
Expanding access for undocumented people also requires the creation of something less tangible than policy: a sense of inclusion, according to Nolan Kline, an assistant professor at the University of North Texas Health Science Center. Kline’s research often involves the intersection of immigration and health care policies.
Immigration policies across the country, regardless of their connection to health care, create a pervasive “fear of detection that limits people’s willingness to seek health services,” Kline said. So even if one policy lever changes, people still may be too afraid to seek health care until their health becomes an emergency.
Earl, along with researchers like Nava at UT-Arlington and the University of North Texas Health Science Center, meet regularly to discuss what widespread reform could look like. They plan to discuss “shared accountability” when it comes to cervical cancer care at a community roundtable this spring. In the meantime, Cancer Care Services has hired a community health worker to focus specifically on cancer within the Hispanic community.
‘Cancer is not pink — it’s red’
A vital posture for that work is “cultural humility,” according to Aideé Granados, the founder and CEO of Rosa es Rojo, a nonprofit that provides cancer education for Hispanic women in North Texas. Granados was diagnosed with breast cancer not long after she immigrated to the U.S. from Mexico. Navigating the American health care system was daunting, she remembers.
“I didn’t understand the medical terms,” she said, “but also I just found that the way that the health system was trying to advise me and even prescribe me was not a good fit for me.”
Granados began blogging about her journey, sharing research and strategies she found helpful as she passed through chemotherapy and radiation. She called the blog Rosa es Rojo, or “pink is red.” Pink, the symbol for breast cancer, is a soft color — quite unlike her experience of cancer, she realized. Red, however, is strong, a symbol of faith and energy.
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Tarrant County encompasses the metropolitan area of Fort Worth and has a population of almost 2 million people. Almost 30% of these people identify as Hispanic or Latino/a. The women in these communities are dying…
“Cancer is not pink — it’s red,” she said. “I needed a red.”
As her strength returned, Granados turned the blog into a nonprofit that educates Hispanic women on wellness and cancer prevention. The curriculum uses culturally relevant content in Spanish. For example, the women who sign up for the nonprofit’s programs learn about healthy foods like beans, tortillas and cactus and physical activity like zumba.
The intent, Granados said, is to teach Hispanic women how to pass on their knowledge to someone else.
“We are interpreting the wellness and wellbeing topics in a way that is relevant and in a way that connects with us, with our roots,” she said. “And then we can definitely learn, but most importantly, create a ripple effect.”
Zuniga’s own cancer journey reshaped the way she speaks to her family and friends. Her faith not only helped her survive, she said — it convicted her to no longer keep her cancer a secret.
“I have made it a point not to keep those things in the dark. I think that’s the starting point.”– Alma Zuniga, cervical cancer survivor
“I have forced myself to step out of the comfort zone, when it came to cancer, when it came to talking about sexuality with my children, my grandchildren — about those personal matters,” she said. “I have made it a point not to keep those things in the dark. I think that’s the starting point.”
After two rounds of chemotherapy and a hysterectomy, Zuniga has been cancer-free since 2016. She speaks and posts publicly about what she’s been through. She encourages her nieces, nephews and granddaughters to get the HPV vaccine. Discomfort in those discussions isn’t a problem solely for Hispanic families, she said — it’s a problem everyone must grapple with.
“We’re more than just the color of our skin,” she said. “We are what makes this world come together. The better self care that we have, the better off we all are.”
Alexis Allison is the health reporter at the Fort Worth Report. Her position is supported by a grant from Texas Health Resources. Contact her by email or via Twitter. At the Fort Worth Report, news decisions are made independently of our board members and financial supporters. Read more about our editorial independence policy here.