In the summer of 2013, I was diagnosed with breast cancer. Although I was able to lean on my faith for support during this time, cancer is never easy — and unfortunately, after my initial struggle with the disease, I was re-diagnosed the day before my birthday in 2017. To this day, I have regular CT scans and MRIs to monitor for any abnormalities.

Throughout my health struggles, it became clear that my body was not responding in the way a “typical” body is expected to react to treatments. Treatments and medications, that are successful for typical medical research participants, simply didn’t work for me.

Luckily, my family, friends and community at Southern Methodist University (SMU) — where I studied and now work — stood by me through my battle with breast cancer and has, ultimately, helped me win. Through my work at SMU and as a member of Zeta Phi Beta Sorority, I became president of the National Pan-Hellenic Council (NPHC), where I still serve on the leadership board. Through my work with NPHC, I learned about the National Institutes of Health Initiative's All of Us Research Program.

Photo: All of Us

All of Us is a national effort to enroll one million or more participants to create a living database that can be used by medical researchers to help facilitate their discoveries. The ultimate goal of the program is to help accelerate medical breakthroughs and eliminate health disparities in the United States.

Only when I learned about All of Us did I understand why exactly my body wasn’t responding in the ways doctors expected — their research wasn’t based on people like me.

Through All of Us, I learned that even though more than 13 percent of the American population is Black, we make up only 5 percent of clinical trial participants. If we’re not proportionately represented in medical research, our unique health needs won’t be taken into account in the treatments that are developed from the research.

According to Breastcancer.org, Black women are 40 percent more likely to die from breast cancer than white women, and researchers believe this is partially due to access to care—the remaining factors that can dictate life and death are still unclear. More research on disparities like this one is needed in order to determine what causes them, and discover how we can best tackle diseases that seem to harm some more than others. In order to share in the benefit of medical research, we need to be included from the start.

Photo: All of Us

NPHC is partnering with All of Us to help raise awareness so we can level the playing field and so that our children and grandchildren won’t have to live with the fear that the color of our skin might determine our fate. There is no reason Black women in 2019 should have to accept such inequality as the status quo.

To participate in the All of Us Research Program and change the future of health for all of us. Visit the All of Us website here.

More About NPHC President, Jennifer Jones

Jennifer “JJ” Jones is the 33rd President of the National Pan-Hellenic Council and the Executive Director of Student Development at the Southern Methodist University. She's worked in higher education for more than 30 years. She's a wife, mother, and breast cancer survivor. JJ is also the program lead for the Black Greek Letter Consortium, which is made up of seven traditionally African American Greek letter organizations. Her favorite quote leads to her favorite saying, which is “Service is the rent you owe for the space that you occupy.”

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