NEW YORK – A program at the UC Davis Comprehensive Cancer Center is educating Hispanic and Latina women in California about their genetic risk for breast cancer and the importance of genomic profiling for family members.

Through an effort called Tu Historia Cuenta, which translates to “your story matters,” UC Davis has discussed breast cancer genetic risks with 1,000 Hispanic women and Latinas, according to Laura Fejerman, leader of the program and codirector of the cancer center’s Women’s Cancer Care and Research Program (WeCARE). Encouraged by the interest in the educational sessions offered by Tu Historia Cuenta, Fejerman and her colleagues now want to expand the program’s reach and make it easier for women with a family history of breast cancer to get genetic counseling and testing.

For now, the program administers a survey to the women who attend the educational sessions and, based on their answers, identifies those who might benefit from genomic profiling. Session attendees are asked to fill out the survey by their community health educator, called promotores in Spanish. The surveys are scrubbed of identifying information and shared with the researchers, who flag the women who have a family history of cancer and should receive genomic testing.

The promotores then reach out to the high-risk women about getting tested for mutations in genes such as BRCA1/2 that confer a higher risk of breast, ovarian, and other cancers. The promotores continue to follow up with these high-risk women every three months.

In this way, the researchers and promotores have identified 62 high-risk women and recommended they undergo further screening, which is consistent with the rate of pathogenic variants seen among Hispanic and Latina breast cancer patients in the population, according to Fejerman, who also codirects the Latinos United for Cancer Health Advancement initiative at UC Davis. Research that Fejerman coauthored this year found that about 7 percent of Latinas with breast cancer harbor pathogenic variants in ATM, BARD1, BRCA1, BRCA2, CHEK2, PALB2, PTEN, RAD51C, and TP53.

Additionally, Fejerman and colleagues from the University of Texas, National Institute on Minority Health and Health Disparities, University of California, and University of Southern California published research this month that shed more light on the types of breast tumors Hispanic and Latina women tend to develop. They found, for example, that Hispanic and Latina women have higher rates of aggressive breast cancer like HER2-positive and triple-negative disease. Hispanic women with Indigenous American ancestry in particular are more likely to have HER2-positive tumors, their research showed. However, compared to their white and Black counterparts, Hispanic and Latina women are at lower risk of developing breast cancer overall.

Tu Historia Cuenta design

Fejerman and her colleagues started planning the Tu Historia Cuenta program in 2020. They developed two sets of educational materials, in partnership with nonprofit The Latino Cancer Institute: one set for training promotores on hereditary breast cancer risk and another set that is the basis of hour-long education sessions that the promotores host with Latina and Hispanic women at community-based education sessions.

To be part of the program, promotores do not need formal health education training, but they must attend the eight-hour workshop the researchers have developed about breast cancer, genetic risk, and genetic counseling. After completing the workshop, promotores go out into the community to conduct hour-long sessions about hereditary breast cancer risk and genetic screening.

According to Fejerman, the promotores‘ training and community education sessions have largely taken place online due to the COVID-19 pandemic. The educational sessions include an eight-minute video showing the journey of a fictional patient who goes to her doctor after finding a lump in her breast and undergoes medical exams and genomic profiling to discover she carries a BRCA1 mutation. The session attendees also hear a presentation about breast cancer and receive a brochure that explains breast cancer and hereditary cancer risks and provides resources for additional information. The information is presented in plain language for an audience with low health literacy, and all sessions and materials are in Spanish.

After the session, the attendees receive a questionnaire to complete that asks about their sociodemographic status; general cancer screening history, such as a mammogram or cervical cancer screening; prior exposure to genetic testing, like prenatal screening or previous cancer risk assessment; and their family history of breast cancer.

“The rationale for the program was that Hispanic Latinas are doing genetic testing at lower rates than non-Hispanic white women. They’re about four times less likely to get genetic testing,” Fejerman said. “We felt like this was a group where there is a lack of information and lack of understanding of … what it means to carry a mutation that increases your risk.”

After the first three classes, Fejerman and her colleagues published a study detailing the participants’ demographics, insurance status, family history of cancer, and knowledge of cancer and genetics. Of 33 session attendees, 30 percent had no insurance and only 12 percent said they were fluent in English, highlighting some key barriers to healthcare access in this community.

In this study, 15 percent said they had a family history of ovarian cancer and 21 percent said they had at least three members on the same side of the family with breast, prostate, or pancreatic cancer.

The researchers also administered a knowledge assessment questionnaire before the educational sessions, which the attendees filled out. Based on their answers, 47 percent of participants (7 participants) were not able to correctly answer a multiple-choice question to define what a gene is, and 27 percent (4 participants) answered incorrectly, or didn’t know, whether genetic tests could be performed with either a blood or saliva test. The participants took the same test after the session and the number of incorrect or don’t know answers dropped to 7 percent (1 participant) for the same questions about genes and genetic testing.

While the program has reached more than 1,000 Hispanic and Latina women to date, there are still barriers to receiving genetic counseling after the education program. The promotores follow up regularly with session participants who said in the survey that they have a family history of cancer, but beyond that the onus is on the patient to reach out to their doctor or find a clinic and set up an appointment.

“The promotores call regularly to check in [with the high-risk women], but most of them are now asking for help to access services,” Fejerman said. “We thought many of them would have some sort of clinic where they can go and talk to a doctor about their strong family history of cancer, based on what they learned from participating in the program, but that hasn’t happened for most of them. That follow through is hard. Now, I’m writing grants now to include genetic counseling and testing as part of the program.”

Barriers remain

The next iteration of the Tu Historia Cuenta may make it even easier for high-risk Hispanic and Latina women to access genetic counseling to assess their family risk for breast cancer. The program is currently funded through the University of California, San Francisco Mount Zion Funds and the California Breast Cancer Research Program, but Fejerman hopes to secure more funding this year to continue the education effort and potentially expand the program.

She is exploring grants that could potentially support the integration of a clinical trial within the program, through which eligible women could get genetic testing, and reaching out to nonprofits that provide support for cancer screening in underserved populations. Fejerman is also looking for support among her colleagues at the UC Davis Women’s Cancer Care and Research Program in expanding the program.

Lack of insurance coverage is a major barrier to healthcare access in the Hispanic community. Many have no insurance or rely on Medicaid, which may not cover genetic testing. The language barrier presents challenges, as well. While many clinics have some Spanish speakers, Fejerman noted that there are far fewer genetic counselors who are bilingual and speak Spanish.

“There were people in the classes who already knew they had mutations, but they still felt like they needed a class to understand,” Fejerman said. “They saw the opportunity to take the class in Spanish, and they took it. That means this person had gone through breast cancer or had gone through testing and still didn’t feel like they understood it.”

This population may also not know their family’s history with cancer because they came to the US from other countries, where close relatives still reside. In the study conducted on participants of the first three educational sessions, none of the surveyed individuals were born in the US, and these women had lived in the US for an average of 17 years.

That presents several challenges, Fejerman said. Families may lose touch after many years apart in different countries, and someone may not know if their grandmothers or aunts also had breast cancer. The distance also affects the utility of cascade testing. If a Latina in the US is found to carry a BRCA1/2 mutation, she may be able to get more regular screening, but a family member in Mexico may not have the same access, Fejerman said.

“If you’re an immigrant, sometimes you lose contact with family or you may only have a phone call every once in a while,” Fejerman explained. “You probably don’t want to use that short time to ask family members about cancer.”

Fejerman noted that programs to educate Hispanic and Latina women work best when paired with other efforts to improve access, like assistance navigating the healthcare system and more robust efforts to include Hispanic and Latino patients in clinical research.

“When precision medicine became more common, that’s when we started thinking that Latinos were going to be left behind in the conversations about precision medicine because of the lack of awareness and knowledge on genetics,” Fejerman said. “They wouldn’t be able to make informed decisions about cancer care because they were already behind on regular prevention information like mammograms or colonoscopies, and then we added the complexity of genetics and genomics.”