Isn’t it disturbing that African American women have a 31 percent breast cancer mortality rate—the highest of any U.S. racial or ethnic group? Isn’t it horrific that black women are 42 percent more likely to die of breast cancer than white women? Isn’t it outrageous that the breast cancer recurrence rate for black women is 39 percent? Isn’t it frightening that black women younger than 35 get breast cancer at twice the rate and die at three times the rate of their white counterparts?
Why is this happening? Why are so many black women dying of breast cancer? One key reason is that we don’t have therapies effective for our physiology. That is because African American participation in clinical research is extremely insufficient. Black women are reluctant to engage in clinical trials and may refuse treatment as a result of our own race-related biases and lack of trust in medical professionals. According to the FDA in eight recent clinical trials involving five drugs approved for breast cancer, just 2.5 percent of clinical trial participants were black.
“We need to look at these statistics and sound the alarm,” said Regina Hampton, M.D., president of Doctors Community Hospital, and co-founder and chief medical officer for Breast Care for Washington, D.C. “Black women need access, trials and answers to figure out why there is not more progress in breast cancer statistics. We need to find innovative ways to make clinical trials available to this community that has deep mistrust in research.”
I am on a personal mission to increase participation in clinical trials. Join me by checking out Ciitizen, an amazing new patient-focused platform to gather, digitize, organize and control your health records and provide an actionable health profile easily sharable with doctors and researchers conducting research that could save your life.
Ciitizen digitizes and stores your information. It is safely protected in accordance with HIPAA laws and always in your control. If a trial is appropriate, you will be notified and asked if you are interested. If you want to pursue it, the researcher will have instant access to your digital file, which will expedite the process and get you closer to the life-saving medications and therapies that could help you.
“There is nothing more painful to see than a loved one afflicted with cancer,” said Anil Sethi, Ciitizen’s founder and CEO, who started the company following the loss of his younger sister to metastatic breast cancer. “Ciitizen was founded to help patients and their loved ones control their data—something we believe unlocks better care and access to therapies.” Sethi is focusing the company’s efforts on breast cancer, so you’ll need to have your records to be on top of the latest breast cancer research opportunities.
I know you may have fear about getting the “placebo” drug, but all that means is you may get standard of care and not the trial drug. It’s what you would have taken anyway. There is no downside to participating in clinical research. Plus, you get great quality of care and more attention from your health professionals.
Ciitizen is so committed to helping people that their service is free. They built a website for me to sign people up, and they are paying $10 for each person I sign up to my non-profit organization of choice, which is Sisters Network Inc., the only national African American breast cancer organization.
I can’t stress enough how important it is to understand the science of breast cancer in black women. Help yourself; help your breasties. Take control of your health records. Give yourself access to medications that could save your life.
—Ricki Fairley
