“As a Black woman, I definitely advocate for other Black women to become a part cancer research, and here is why,” says Bridgette Hempstead, a Black woman with metastatic breast cancer. “Medications are developed and they are mainly developed for middle-aged White women, because the research for Black women is not there.”
Hempstead is founder of Cierra Sisters, a support organization for African-American breast cancer survivors, and knows well the barriers for African-American women to engage in breast cancer research and the consequences if they are not included.
The Metastatic Breast Cancer (MBC) Project at the Broad Institute and the Dana Farber Cancer Institute are working to break down these barriers and give black women a seat at the breast cancer research table. According to the MBC Project website, it is a nationwide movement of patients, doctors, and scientists seeking to recruit women with metastatic breast cancer and, with their permission, access their tissue samples from the hospitals that care for them. The goal is to use those samples to transform their understanding of metastatic breast cancer to aid in the development of future therapies.
“We initially knew that we would probably skew young and White just based on who we had reach to in social media,” said Dr. Corrie Painter, associate director of operations and scientific outreach for the MBC Project.
But when they realized that less than three percent of their participants were from Black women – even though Black women are estimated to account for more than 20 percent of metastatic breast cancer cases in the United States under the age of 50 – they knew they had to actively work to engage Black women in their research. Dr. Painter knew that her team needed to learn about the barriers to participate in research and address them in their study.
Far too often, Black women are underrepresented in clinical trials and medical research, including research that has led to new treatments. This fact contributes to higher rates of death and poorer outcomes in Black women with breast cancer. In one major study showing the efficacy of using a drug called Herceptin after surgery and chemotherapy in women with HER2-positive breast cancer, of 3,387 women only 20 were Black women—that is less than one percent of the study participants.
Factors That Contribute to Blacks Not Participating In Trials
The MBC Project is determined not to contribute to this problem in breast cancer research. They aim to engage Black women in the hopes of finding new treatments. The MBC project is interested in more than just their samples, they are interested in hearing their voices. To lead this effort, they enlisted Shawn Johnson, a researcher at Dana Farber Cancer Institute and now first-year student at Harvard Medical School.
When Johnson joined the project, he was keen on diving deeper into the barriers to participation in medical research. He began by inviting five Black women that are metastatic breast cancer advocates to the Broad Institute to begin a dialogue.
He wanted to address the well-documented history of abuse of Black bodies in medical research. Whether it was the Tuskegee syphilis study or gynecologic surgeries practiced on Black women without anesthesia by the man known as the father of gynecology, James Marion Sims, the history of abuse and lack of faith in medical researchers’ motives has been passed down from generation to generation in Black families.
“If you told people the history of this abuse and exploitation, would this be liberating and build trust between the people that are asking them to participate and themselves?” Johnson asked. He found that it did just that.
A study by the Komen Tissue Bank on the perspectives of African-American women in donating healthy breast tissue also found…this to be true. Some participants in the study echoed Johnson’s thoughts. One participant commented on the need to “be honest about the bad history surrounding their past ‘participation’ in research to dispel the myths, be honest about the truths, and explain the differences.”
In addition to this history that might prevent participation, another study reviewed factors that influence African-Americans participation in cancer clinical trials. That study confirmed that part of the challenge is the lack of knowledge about these trials. When clinical trials are run out of major academic hospitals and not in the community, awareness is only one challenge. The financial burden of traveling, missing work and finding childcare in order to participate may limit who can become involved.
Dr. Karen Winkfield, a radiation oncologist and former chair of the health disparities committee for the American Society of Clinical Oncology, adds that physician bias can play a role in underrepresentation of breast cancer research. She has studied perceptions of cancer and clinical trials in the black community and some women have shared that, “if they were asked, they would consider participation.” If physicians are not asking black women, then this is another hindrance to participation.
But even if African-American women are approached to enroll and are willing to participate, Dr. Winkfield laments that, “comorbidities like obesity, diabetes, and hypertension may restrict access to clinical trials.”
Dr. Winkfield says that what she appreciates about the MBC Project is that “it does not make a difference who you are, where you come from, or what your health issues are, you can participate.”
MBC’s Approach to Inclusion
The MBC Project is taking a different approach. The project’s direct-to-patient strategy allows researchers to…circumvent a system that may be fraught with bias by reaching out directly to potential participants through social media.
To continue giving Black women a voice in their research efforts and outreach, Johnson recruited three Black women who attend Howard University to collaborate with the MBC Project. These women have enlisted a team of students at Howard to raise awareness on their campus and get students to sign up to post, share and like information about the MBC Project and be social media amplifiers to get the message out through their social networks.
It is estimated that there are more than 150,000 women living with metastatic breast cancer in the United States. The MBC Project is working to use social media to find those women and be sure that black women are not left behind in research efforts yet again.
Dr. Painter was elated to report that the MBC Project just surpassed 4,000 enrollees since they begin their work in October of 2015. She also shared their plans to prioritize communities that have been underrepresented in research. Any samples that they receive from African-American men or women, or Latino men or women will be prioritized for sequencing.
Participants will find that it only takes three steps.
Step 1. Tell them about yourself. Click “Count Me In” and complete a simple online form to tell them about yourself and your cancer.
Step 2. Give them permission to collect your samples and data. After you fill out the online survey, they will ask you to fill out an online consent form that requests your permission to obtain copies of your medical records and some of your stored tumor tissue. They’ll also send you a simple kit to collect a saliva sample. They will do the rest.
Step 3. Learn with them along the way. Throughout the project, they will provide you with regular updates about the status of the project and share any discoveries that you have enabled them to make.
Mary Tate is an MD/MPH candidate at Harvard. She is deeply invested in improving the health of women and children. Following completion of her medical school training in 2018, she will be pursuing obstetrics and gynecology residency.