Black women have a 40 percent higher death rate from breast cancer, are diagnosed at a later age, and their cancer is typically found at a later stage, when compared to other women.
For R.E.D. Alliance, located on Indianapolis’ westside, reducing those disparities is their mission.
“Our approach makes us different from other cancer organizations. We are very collaborative, we try to work with other groups to identify reasons for disparities and partner with them to implement interventions and solutions,” Executive Director Lisa Hayes said.
R.E.D. Alliance has a strong partnership with IUPUI, involving research in multiple areas, including side effects of chemotherapy drugs and the need for support groups for Black women and their families.
In their partnerships with researchers, R.E.D. Alliance promotes clinical trials with a goal of getting Black women to participate, since they are often underrepresented, Hayes said.
That work involves helping develop promotional materials that are culturally sensitive, providing guidance in the planning and implementation of those clinical trials, and helping distribute results of studies. R.E.D. Alliance has also provided letters of support for IU researchers for grants, and IU has done the same for R.E.D. Alliance, Hayes said.
Many of the studies they have been involved in are still in the investigative stage, but what they are learning is extremely useful in helping women undergoing treatment, Hayes said.
For example, the preliminary findings of one study focused on women experiencing neuropathy during treatment, which allowed R.E.D. Alliance to develop educational guidance for the women they serve, encouraging them to talk to their doctor about the side effects and request a change in their dosage or medication.
In another study that involved weekly surveys from women undergoing treatment, a pattern was found where women were feeling bombarded with information when receiving their diagnosis, being told to start treatment before they even had a chance to process information, Hayes said.
That study allowed R.E.D. Alliance to have internal conversations about how they could better serve their community, such as by coordinating with hospitals and providers to be more responsive to patients’ needs, she said.
Hayes can also use that information for the coalitions and committees she serves on, raising the issues they are uncovering in their research to help make decisions on policies, education, and training.
“It’s all about improving outcomes for Black women,” she said.