American Cancer Society seeking to enroll 100,000 Black women for 30-year study
Lilith Costa, of Rockaway Park, is helping to launch a new national survey of Black women to find out why they have such poor outcomes and survival from cancer. Credit: Debbie Egan-Chin
Lilith Costa, a 40-year-old married mother of two young children, wanted to be “proactive” about her health.
Costa, of Rockaway Park, Queens, is a “previvor,” someone who had not yet been diagnosed with cancer but took preventive steps to reduce her chances of developing it. Given her extensive family history of breast cancer, she underwent testing and found out she has a hereditary gene that predisposed her to getting the disease. That helped her make the decision to undergo a double mastectomy seven years ago.
Costa's grandmother died from breast cancer when Costa was very young. “A few aunts that I've never been able to meet” also had breast cancer and died before she was born. Her sister has breast cancer, an uncle had breast cancer, and her father is “at the moment” dealing with prostate cancer that has spread to his bones.
“It made sense,” Costa said, “to get tested” for the gene.
Now she wants other Black women to be educated about the cancer risks they may face.
She is serving as a “Voices Ambassador” for the American Cancer Society, which on Monday announced the launch of one of its largest population studies to find out why, a society researcher said, Black women have “some of the poorest outcomes and lowest survival of most types of cancer.”
The study is seeking to enroll 100,000 participants, including more than 6,000 in New York, to be monitored over several decades. The goal is to understand what propels the cancer risk in Black women and how to improve outcomes.
Women may not want to choose Costa's path of undergoing a prophylactic mastectomy. But she wants them to know about their options.
“So many people didn't know they had options in my family. It was something that just sort of happened to us instead of being warned. … I'm hoping to spread the word,” said Costa, who self-published a book about her experience, “The Beautiful Defect.”
“Perhaps if we're more educated [about cancer], if these societies can figure out what's happening with us, we'll have more information,” she said.
The American Cancer Society's population research study is called the “Voices of Black Women,” which will involve delving into the “unique lives” of Black women, assessing demographic information, such as their socio-economic status, and stressors in their lives over the course of 30 years.
Alpa V. Patel, senior vice president of the American Cancer Society's population science division, said in a virtual news conference: “The study is going to be truly transformative in helping us learn about why Black women have some of the highest death rates and shortest survival of any racial, ethnic group in the United States for most cancers.”
Black/African Americans have the highest mortality rate of any racial and ethnic group for all cancers combined and for most major cancers, according to the United States Department of Health and Human Services. From 2015 to 2019, Black/African American women were almost 40% more likely to die from breast cancer, compared to non-Hispanic white women.
The society is recruiting Black women from 20 states and the District of Columbia, a geographic swath of the nation that runs from the Northeast, portions of the Midwest to California and Texas, and across the South, which officials said captures 90% of the Black population. Officials are looking for 6,666 Black women who are cancer-free except for certain types of skin cancer, ranging in age from 25 to 55, across New York to participate. For more information, go to voices.cancer.org.
The researchers said the study has undergone ethical oversight by the society's review board, is pledging data privacy protections and is guided by a Black Women Scientific Review Board, reflecting a sensitivity to the “mistrust” some Black people may have of the medical establishment because of past mistreatment in health care and science research.
Lauren McCullough, the society's visiting scientific director of epidemiology and a study principal investigator along with Patel, said that as a Black woman herself, “The work that I do is very personal. You live and experience this and you know that it affects health. But you can't necessarily articulate how, until you have the data. And so the opportunity to work alongside other brown and Black women to think deeply about this and to engage with our focus groups and our community, really, to better understand what are the questions that haven't been asked?”
Lilith Costa, a 40-year-old married mother of two young children, wanted to be “proactive” about her health.
Costa, of Rockaway Park, Queens, is a “previvor,” someone who had not yet been diagnosed with cancer but took preventive steps to reduce her chances of developing it. Given her extensive family history of breast cancer, she underwent testing and found out she has a hereditary gene that predisposed her to getting the disease. That helped her make the decision to undergo a double mastectomy seven years ago.
Costa's grandmother died from breast cancer when Costa was very young. “A few aunts that I've never been able to meet” also had breast cancer and died before she was born. Her sister has breast cancer, an uncle had breast cancer, and her father is “at the moment” dealing with prostate cancer that has spread to his bones.
“It made sense,” Costa said, “to get tested” for the gene.
WHAT TO KNOW
- The American Cancer Society has launched a study, “Voices of Black Women,” to better understand why Black women tend to have poor cancer survival and outcomes.
- The study is seeking to enroll 100,000 Black women who are currently cancer-free and range in age from 25 to 55.
- The research is one of the largest population studies done on this topic and draws from 20 states, including New York, and the District of Columbia.
Now she wants other Black women to be educated about the cancer risks they may face.
She is serving as a “Voices Ambassador” for the American Cancer Society, which on Monday announced the launch of one of its largest population studies to find out why, a society researcher said, Black women have “some of the poorest outcomes and lowest survival of most types of cancer.”
The study is seeking to enroll 100,000 participants, including more than 6,000 in New York, to be monitored over several decades. The goal is to understand what propels the cancer risk in Black women and how to improve outcomes.
Women may not want to choose Costa's path of undergoing a prophylactic mastectomy. But she wants them to know about their options.
“So many people didn't know they had options in my family. It was something that just sort of happened to us instead of being warned. … I'm hoping to spread the word,” said Costa, who self-published a book about her experience, “The Beautiful Defect.”
“Perhaps if we're more educated [about cancer], if these societies can figure out what's happening with us, we'll have more information,” she said.
The American Cancer Society's population research study is called the “Voices of Black Women,” which will involve delving into the “unique lives” of Black women, assessing demographic information, such as their socio-economic status, and stressors in their lives over the course of 30 years.
Alpa V. Patel, senior vice president of the American Cancer Society's population science division, said in a virtual news conference: “The study is going to be truly transformative in helping us learn about why Black women have some of the highest death rates and shortest survival of any racial, ethnic group in the United States for most cancers.”
Black/African Americans have the highest mortality rate of any racial and ethnic group for all cancers combined and for most major cancers, according to the United States Department of Health and Human Services. From 2015 to 2019, Black/African American women were almost 40% more likely to die from breast cancer, compared to non-Hispanic white women.
The society is recruiting Black women from 20 states and the District of Columbia, a geographic swath of the nation that runs from the Northeast, portions of the Midwest to California and Texas, and across the South, which officials said captures 90% of the Black population. Officials are looking for 6,666 Black women who are cancer-free except for certain types of skin cancer, ranging in age from 25 to 55, across New York to participate. For more information, go to voices.cancer.org.
The researchers said the study has undergone ethical oversight by the society's review board, is pledging data privacy protections and is guided by a Black Women Scientific Review Board, reflecting a sensitivity to the “mistrust” some Black people may have of the medical establishment because of past mistreatment in health care and science research.
Lauren McCullough, the society's visiting scientific director of epidemiology and a study principal investigator along with Patel, said that as a Black woman herself, “The work that I do is very personal. You live and experience this and you know that it affects health. But you can't necessarily articulate how, until you have the data. And so the opportunity to work alongside other brown and Black women to think deeply about this and to engage with our focus groups and our community, really, to better understand what are the questions that haven't been asked?”
