Helping save the lives of Latinas

In a small house on a working-class street, 10 women gathered one recent weeknight for what might have been a Tupperware party. There were door prizes, refreshments, a hostess who received an incentive gift to hold the party in her home and pep talks in Spanish, the language of the guests.

But instead of selling plastic home accessories, these party planners were marketing matters of life and death. This Casa a Casa (House to House) event was focused on raising awareness about breast cancer, a disease that remains mysterious, terrifying -- and disproportionately fatal -- to many low-income Latinas.

“I never thought I could get breast cancer because I had a family, because I was devoted to my husband and because I led a good life,” said Damiana Flores Perez, who underwent a mastectomy three years ago at age 48. “I thought it only happened to women who were dissolute, women who led bad lives.”

Barriers to detection

As an educator for Las Isabelas, a fledgling nonprofit whose budget has grown from zero to $250,000 in just over two years, Perez hopes to help dispel for other women the types of myths and misinformation that she herself held. Fewer than 40% of Latinas older than 40 seek regular mammograms, the group’s statistics show, with language, culture and income barriers leading in many cases to late detection.

“Latinas also have the lowest rates of health insurance in the country,” said Lisa Navarrete, a vice president of the National Council of La Raza, a civil rights organization in Washington, D.C.

Coupled with limited access to health care are deep religious and cultural constraints that make many Latinas uncomfortable about examining their bodies, Navarrete said. Family often comes first for these women, so their health concerns may be sidelined, she said. Moral complexities also can cloud Latina attitudes about breast cancer, she noted. For example, a popular Spanish-language television soap opera depicted one character’s breast cancer as a castigo de dios -- punishment from God -- because the character had an extramarital affair.

“These are generalizations, even stereotypes,” Navarrete said. “But just because something can be considered a stereotype doesn’t mean it isn’t true.”

The same consciousness about cancer care and ethnicity dawned on television newscaster Ysabel Duron five years ago when she underwent successful treatment for Hodgkin’s disease.

“I looked around the infusion treatment area and I didn’t see any Latinos,” said Duron, a Bay Area reporter and anchor for more than 30 years. “I thought, ‘Where are they? Why are they not getting treatment?’ ”

Already well-known as the Bay Area’s senior Latina journalist, Duron became more recognizable when her once-dark hair turned white after chemotherapy. Eschewing her TV pouf hairdo, she cropped it short and kept it white.

Her coiffure was not all that changed.

“I remember thinking that I wasn’t ready to die. So I said, ‘OK, God, what’s the point?’ ” said Duron, 55. The answer, she said, “was like God yanking my tail,” telling her: “This industry, TV, is killing you. You want to do something that has a payoff for you but that also has an impact for others.”

Some months later, a friend asked her to speak to a small grass-roots group that held meetings in a park in San Jose, where Duron has lived for many years. She was intrigued by a volunteer organization named for a woman who shared her first name, if not the same spelling. She also admired the idea of bringing bilingual, bicultural services centered on breast cancer to low-income Latinas. But after working with other philanthropies, she knew the group had set its sights too low.

First she warned Las Isabelas that it would go nowhere unless it grew. Then she signed on as executive director.

Working weekends at KRON-TV, Duron put in 60-hour weeks as she broadened Las Isabelas into a full-fledged nonprofit, expanding its client base tenfold. She launched gala fund-raisers and attracted prominent supporters, such as Latina singer Soraya, herself a breast cancer survivor. California Lt. Gov. Cruz Bustamante was an early champion of Las Isabelas, as were state Sen. Liz Figueroa (D-Fremont) and Assemblyman Manny Diaz (D-San Jose). From a few women who assembled outdoors at a picnic table, Duron steered Las Isabelas into a multilevel agency offering rides to mammogram appointments, wigs, support groups, Casa a Casa parties and a Web site (www.lasisabelas.org) that seeks to provide breast-cancer education for low-income Latinas globally.

Supporters say that what also distinguishes Las Isabelas is its emphasis on “cultural competence” with low-income Latinas. “A lot of times people will take an existing program and simply translate it into Spanish and consider it a done deal,” La Raza’s Navarrete said.

Inquiries pour into Las Isabelas from around the country, suggesting to Duron and others that the need for the group’s services exceeds its ability to deliver. “Our only really big problem is that we have not been able to serve as many people as we would like,” Duron said.

At the county hospital, Damiana Perez came across a brochure about Las Isabelas -- the first group to explain to her, she said, that she might be able to live with cancer. She contacted the organization and soon learned that breast cancer was not, as she and others in her community sometimes feared, contagious. While it is known that Latinas already have a higher breast cancer mortality rate than white women, it is difficult to get a precise figure because so many death certificates list Latino victims as white.

In the last three years, about 12% of Las Isabelas’ clients have died of breast cancer.

One day, Perez visited the group’s headquarters in a defunct mortuary in downtown San Jose and said she would like to meet “Ysabel.” As it happened, Duron was the only one working in the office that day.

“So much for my famous face,” she said wryly.

There is so much to do that Duron recently turned over the administrative reins to Mary Rose Delgadillo, a nurse and longtime women’s health activist. Duron will remain as chief fund-raiser, communications director and cheerleader-in-chief, intent on bringing the message of Las Isabelas to as many Latinas as possible.

The energy of the organization is palpable, filling up the offices that Duron has painted in wild, Frida Kahlo colors. The mortuary owner loves his property’s transformation. His mother died of breast cancer, he told Duron, and she knew nothing about the disease.