The first of October marked the beginning of Breast Cancer Awareness Month, which means the beginning of pinked-out programs and events aimed at shedding light on the disease that affects over 300,000 American women (and men) each year.
But for some patients — specifically those whose cancer has metastasized, or spread to other parts of their bodies — the frilly ribbons and overall pink glory that comes with Breast Cancer Awareness Month is just too much.
Metastatic breast cancer survivor Sheila Johnson-Glover said the annual all-pink walks and such are nice for simply raising awareness about the disease. However, they fail to do much when it comes to raising funds for research into the effects and treatment of metastatic breast cancer in African-American patients.
“We’re aware of breast cancer. Everyone is aware of breast cancer,” Glover told Atlanta Black Star. “It’s not so much about the pink and the walks. It’s about what are they (breast cancer organizations) doing with the money from the walks?”
“Don’t buy the ‘pink’ without understanding what you’re buying into,” she added, noting that just 7 percent of research money goes toward the study of metastatic breast cancer. “Don’t walk without the understanding of what you’re walking for.”
For Glover, a newly launched initiative called the Metastatic Breast Cancer Project is the key to bridging the gap between breast cancer awareness and discovering effective therapies for patients whose cancer has spread to other organs, like the lungs or brain. The breast cancer survivor and project participant asserted that the program is especially important for African-American patients, who are 45 percent more likely to die from the disease than their white counterparts.
The Metastatic Breast Cancer Project, led by the Broad Institute of MIT and Harvard, is a crowd-sourced study aimed at gaining a better understanding of metastatic breast cancer and how to treat it through the analysis of data provided by real-life cancer patients.
The project encourages those suffering from the disease to share their DNA (saliva) and tumor samples with researchers, who then study them to draw collective conclusions about the disease itself and future methods of treating it.
“This project was designed and has been implemented collaboratively with metastatic breast cancer patients, patient advocates, cancer researchers, physicians, and clinical specialists,” the project’s website states. “We leverage the power of the Broad Institute’s resources and the voice of the metastatic breast cancer community in order to focus cutting edge genomic science squarely on people living with metastatic breast cancer.”
Researchers also analyze patients’ medical records, which helps them determine why some metastatic breast cancer treatments work in some patients but not in others. Medical history may also play a part in how a patient’s cancer spreads or behaves.
So what happens after project participants send in their samples? Every so often, the MBCP provides patients with updates regarding its collective analysis of patient data, along with any breakthrough findings about the treatment of metastatic breast cancer. Glover said those findings may then be published in a medical journal.
So far, roughly 2,600 metastatic breast cancer patients have signed up for the project. Only 68 of the participants are African-American, which is why the MBCP is pouring more time and money into marketing the project to Black patients.
“We [Black people] need to get away from the mentality that ‘Hey, they’re gonna use me as a guinea pig,’ ” Glover said, noting that if no one had volunteered to participate in the clinical trial of the drug that sent her cancer into remission, she wouldn’t be alive today.
Glover also said the Breast Cancer Research Foundation has donated over $30,000 specifically for African-American outreach in the MBCP. That’s how important it is — seeing as the rate of breast cancer in African-Americans has increased in recent years, according to the American Cancer Society.
“Patient lives matter. Patient voices matter,” she said. “…The MBC Project is patient-driven, so it’ll only work if people sign up.”
The unique project is mainly driven by social media and word of mouth, but leaders of the project are looking for new, effective ways to sell African-American patients on the initiative.
Glover said the key to grabbing the attention of Black patients is to market the project using MBCP participants who look like them. She asserted that when Black patients hear the testimonies of those who’ve already given the project a shot, potential participants will be encouraged to do the same.
“Something, I believe, is gonna come out of it,” Glover said of the novel research project. “Even if it’s a small thing. But I think it’s gonna be big because this is patient-driven, which means that people have to listen.”
Glover remains passionate about metastatic breast cancer advocacy efforts and said she hopes the MBCP will result in new findings about the invasive disease in African-Americans in the next few years.
For more information about the Metastatic Breast Cancer Project, please visit: https://www.mbcproject.org/
This article was originally published at the “Article” source noted above and distributed by The Tutu Project for informational purposes only.