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Speaking awareness: Breast cancer support group reaching across cultures

Reyna Machado, seen on Dec. 19, will become

Reyna Machado, seen on Dec. 19, will become executive director of the Adelphi NY Statewide Breast Cancer Hotline & Support Program this month, with plans to expand its outreach, educational and support programs in both English and Spanish. Credit: Howard Schnapp

For years, many Spanish-speaking immigrants on Long Island who sought support from a key regional breast cancer organization after a diagnosis or wanted more information on the disease had to get past a language barrier.

Not so today, as half the full-time staffers in the Adelphi NY Statewide Breast Cancer Hotline & Support Program speak Spanish, and a Spanish-speaking Latina soon will take over leadership of the group. Previously, those diagnosed with breast cancer couldn’t share their stories in groups, talk with counselors or ask questions about the disease unless they could speak English.

“It shows the growth of the program and the growth of the needs of the community," said Reyna Machado, recently named executive director of the support program.

Machado will take on her new role Jan. 13, when Hillary Rutter retires after 23 years at the helm. Machado said she hopes to further expand programs in both Spanish and English.

The group, run out of Adelphi University in Garden City but funded primarily with state and private foundation money, operates a hotline for people diagnosed with breast cancer or are concerned about it. The program, which receives in-kind support from Adelphi, also helps people during and after a diagnosis, and runs prevention and education workshops.

Most of those Adelphi serves are English-speaking, non-Hispanic white people, who comprise the majority of Long Island's population and of women who develop breast cancer.

Rutter recalls that no employee or volunteer spoke Spanish when she was hired. The organization sought bilingual people, and today four of the program's full-time staff of eight speak Spanish.

Those changes reflect population trends. Nearly 370,000 Long Islanders — about 14% of the population of Nassau and Suffolk counties — speak Spanish at home, according to 2018 U.S. Census Bureau data. That’s up from 230,000 in 2000.

Yet, many health organizations that serve Long Island have no Spanish-speaking volunteers or staff, meaning many Latinos are not receiving critical services, said Osman Canales, director of Hispanic outreach services at the Long Island Center for Independent Living, a nonprofit in Levittown that serves people with disabilities and hosts Adelphi breast cancer workshops.

“It makes it difficult for our community to call [organizations] and ask them questions if there’s no one who understands and speaks their language,” Canales said.

Even Latin American immigrants who speak English relatively well usually are more comfortable with Spanish-language outreach workers, because they may not understand the meaning of all the medical terminology associated with cancer — and they are less likely to ask questions in English, he said.

Adelphi’s workers understand cultural nuances, he said. Canales said some religious people may not believe cancer screenings are necessary because “they say, ‘I know God is giving me good health,’ ” he said. Someone who understands the importance of religion in many Latinos’ lives can persuade the client to get screened in a way that respects their beliefs and culture, he said.

The organization runs a bimonthly Spanish-language support group for those with breast cancer and has Spanish-speaking volunteers available for people who call the hotline.

Elba Contreras, 69, an immigrant from Chile who helps with outreach to the Spanish-speaking community, recalled how she attended an English-language Adelphi support group in 2000 after she was diagnosed with breast cancer. The group “helped me a lot,” she said. 

Contreras’ English was good enough that she understood most of the discussion, but she also missed some of what was said.

“It would have been a greater help” if the group had been in Spanish, Contreras said in Spanish. “When you understand all that is being said, you can learn more.”

A non-English-speaker would have been lost in the group, she said.

Rutter said when she began as director in 1997, few Latina and African American women used the program’s services.

“We knew we had a problem,” she said. “All women of color were not accessing services and were being diagnosed later. But the Spanish-speaking women had the additional barrier of not being able to communicate and not understand what needed to be done.”

The organization in 1997 launched Sisters United in Health, an outreach targeted at women of color with culturally sensitive breast cancer education and referrals to free or low-cost mammograms and other services. The group hired its first Spanish-speaking outreach worker to go to churches, English classes, nonprofit groups and other sites, as well as a part-time African American employee who focused on places where black women gathered, Rutter said.

“You have to be part of the community — that’s one thing we learned early on,” Rutter said. “When I started, most of our volunteers were white middle- to upper-class women who couldn’t go into these communities to relate to people because the people couldn’t relate to them. So, when we hired a Spanish-speaking person who was part of the community, she was able to establish all these relationships and trust.”

Most of those who have attended the outreach sessions are low-income, uninsured, living in the country without legal status, or all three, so they may be afraid to access services and may not realize they can qualify for free or low-cost services, Rutter said.

The program has had only limited outreach to Asian communities because of a lack of funding to hire workers who speak their languages, she said. The group's budget for the fiscal year ending March 31 is $827,000, with about $383,000 coming from the state, Machado said.

Angela Papalia, a bilingual social worker with Adelphi, said it’s especially important that someone receiving a breast-cancer diagnosis or getting treatment be able to express herself in her native language.

Papalia or another bilingual social worker travel to Nassau University Medical Center two or three times a week to sit with women, and sometimes men, as they receive the results of their mammograms, biopsies or other tests, and for subsequent appointments.

The hospital provides Spanish interpretation via telephone, but, she said, “When you are in a moment of crisis, there’s a real comfort … to be able to sit next to someone and hear what she’s hearing, and to be able to hold her hand or give her a hug, to see the tears, to recognize the unbelievable emotions going through that person’s mind.”

BREAST CANCER HOTLINE AND SUPPORT PROGRAM

  • Volunteers, who are mostly breast cancer survivors, answer live calls from 9 a.m. to 9 p.m.: 800-877-8077. Outside those hours, leave a message.
  • For more information on services offered by the Adelphi NY Statewide Breast Cancer Hotline & Support Program, go to breast-cancer.adelphi.edu.
  • The organization began in 1980 as a post-mastectomy support group at Adelphi University’s School of Social Work. Women in the group established a hotline in 1982 that at first only was targeted to Nassau County, but in 1990, with state funding, expanded to the rest of the state. The organization began its Spanish-language outreach in 1997.

SOURCE: Adelphi NY Statewide Breast Cancer Hotline & Support Program

BREAST CANCER ON LONG ISLAND

The following figures represent the average number of annual cases among women from 2012-16. The numbers in parentheses represent the rate of cases for each group.

NASSAU COUNTY

  • Hispanics: 89 (96 cases per 100,000)
  • Non-Hispanic blacks: 122 (128 cases per 100,000)
  • Non-Hispanic whites: 999 (158 cases per 100,000)

SUFFOLK COUNTY

  • Hispanics: 87 (88 cases per 100,000)
  • Non-Hispanic blacks: 76 (127 per 100,000)
  • Non-Hispanic whites: 1,119 (147 per 100,000)

SOURCE: New York State Cancer Registry. Figures are rounded to the nearest whole number. Data are provisional and adjusted by age. The registry does not have Long Island data for Asians and Pacific Islanders or for breast cancer among men.

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