Edelmira and Juan Ramos were teenagers when they met in the early 1970s. Juan was visiting his grandmother in Mexicali, Mexico, when he noticed Edelmira living across the street. He spoke only English, she only Spanish, and yet they both felt a spark. “My eyesight just…I liked what I saw,” he says, giggling. A moment later, he corrects himself. “Love at first sight. I should’ve said that,” he says, to belly laughs from Edelmira.
Today, the two have been married for almost 50 years and own a home in the unincorporated Tulare County community of Goshen. They’ve raised five kids, he’s learned Spanish, and they’ve weathered the ups and downs of marriage well enough that they renewed their wedding vows in 2003.
And so when Edelmira was diagnosed with breast cancer in 2007, Juan says there was no question he’d stay by her side. “Men, a lot of times, when things happen like that, they take off,” he says. “If you really love someone, you’re going to stay with them, whatever the outcome may be.”
Edelmira needed the support. Doctors informed her the tumor was stage four, the size of a golf ball and growing fast. “To me it felt like death, when I was told it was cancer,” she says in Spanish.
Within a week of her diagnosis, she’d had a mastectomy, then began months of chemotherapy. Juan and their children shaved their heads in solidarity. Still, even after the cancer was wiped out, she struggled to heal emotionally. “When I lost my breast, I felt like a monster,” she says. For years, she couldn’t look at herself in a mirror.
In the United States, breast cancer is the leading cause of cancer-related death among Latina women. And although other ethnic groups have higher incidences of breast cancer, Latinas tend to be diagnosed at later stages, and some studies have found that Latinas are less likely to survive to five years after their diagnosis. Latina breast cancer survivors also typically report more anxiety, stress, and depression during their recovery.
All these disparities made Edelmira a prime candidate for a scientific study called Nuevo Amanecer, or “New Dawn”. Led by UC San Francisco, in partnership with Kaweah Delta Healthcare District in Visalia and other rural health centers, the goal was to learn how to improve the emotional recovery of Spanish-speaking breast cancer survivors.
Rather than focus on medical interventions and the role of physicians, the researchers evaluated the psychological effects of peer support. The study, which enrolled roughly 50 women from the Visalia area from 2016-2017, involved weekly 1-on-1 meetings between participants like Edelmira and trained breast cancer survivors referred to as compañeras, or “companions”.
Edelmira’s compañera was Josie Mejia, a bilingual survivor in Visalia. “I was diagnosed in 2013, and like all women, we kind of know, we have an idea, but we're in denial,” she says. She too received a mastectomy and many rounds of chemotherapy.
At the time, she found a support group to help her work through her denial. She says the dozen or so women she met with, many of whom were much further into their recovery, infused her with hope and encouragement.
But Mejia’s support group was held in English. Edelmira, on the other hand, despite the love and warmth offered by her family, never found support groups of survivors in Spanish. And so even though Edelmira was years into recovery when she enrolled in Nuevo Amanecer in 2016, she says her first conversation with Mejia was a revelation. “I found out I wasn’t the only one who had gone through something like that,” she says.
As for why she wasn’t aware of the same support services offered to Mejia, Edelmira has a simple guess: “Because I don’t know English very well,” she says. Although precise data are lacking, research suggests culturally competent cancer support groups can be difficult to access for minority groups, particularly in languages other than English, and that fewer breast cancer survivors of color take advantage of support groups than whites do.
During their weekly visits, Edelmira and Mejia discussed the biology of cancer, treatment, and the body, but also relaxation techniques, breathing exercises, and tips for talking about cancer with loved ones. Edelmira particularly enjoyed a guided meditation involving walking along a beach. “The program is very helpful,” she says. “I wish it had been available when I was going through my treatments.”
Mejia, who worked with 25 participants in addition to Edelmira, also says she learned more about cancer from the program, and appreciated hearing the experiences of so many other survivors.
Those appear to be common sentiments among Nuevo Amanecer participants. Though the final results haven’t yet been published, researchers shared preliminary data over the summer from the roughly 150 women enrolled from three rural areas in California. “The main measures were that anxiety went down, and that their sense of control improved over the situation, and that their stress levels also went down,” says co-investigator Anna Napoles, formerly of UCSF and now a scientific director with the National Institutes of Health. “They also had a better understanding of what they needed to do to take of themselves.”
Studies like this are necessary for understanding minority health and health disparities, which are so prominent they’re the focus of the entire department at NIH where Napoles works. The group studies measures like life expectancy, diabetes rates, and access to cancer screenings among understudied communities including Latinos, Asian and Pacific Islanders, African Americans, and poor whites. “Those are all populations that deserve focused attention because those are the ones that need interventions the most,” Napoles says.
“Health is not one-size-fits-all,” agrees Ninez Ponce, a health policy researcher at UCLA and the leader of the California Health Interview Survey, or CHIS, the largest statewide health survey in the United States.
Ponce says we’re all shaped by culture, traditions, and lived experience, which in turn influence how we access care and respond to it. “Our system is inefficient, so there’s going to be segments of the population that’re going to be left behind," she says. "Not just because of their beliefs, or the information that they get, but also because of the opportunities that they have.”
In a recent study, for example, Ponce and a team of researchers used data from CHIS on diabetes prevalence and access to preventive diabetes screenings as a proxy for health and health care access across the state. The authors found that disparities in both health and access are widest in more urban, wealthy regions such as the Northern Bay Area, which align with some of the state’s widest gaps in income and access to private insurance. Although disparities are narrower in more rural areas such as the Central Valley, however, these regions tend to display worse health measures in general.
In many cases, researchers are aware of disparities in health outcomes, but not enough studies exist to reveal the underlying causes. That’s why both Ponce and Napoles argue for more diversity in clinical trials—and more studies like Nuevo Amanecer that target specific populations in need. “If most of the scientific evidence is based upon middle class white populations, who’re the populations that tend to volunteer for clinical studies, then all the evidence is based on those populations,” says Napoles. “There may be important social, economic and biological factors that differ.”
Edelmira Ramos has been able to watch her 15 grandchildren and two great-grandchildren grow. She survived cancer without Nuevo Amanecer, but her husband Juan says the program changed her. She can talk about cancer more easily now, and says she’s more optimistic, less afraid. She and Mejia remain good friends, too, meeting together occasionally for lunch dates. “Everybody needs some kind of help,” says Juan. “Just a word from somebody. Especially a word from someone that has been through it.”
Now, Edelmira is trying to be that someone. The Visalia restaurant where she works as a hostess is just down the street from Kaweah Delta, and she occasionally meets cancer patients coming in for lunch. When she does, she says she makes it a point to talk to them and tell them they’ll be okay.