February 3, 2023

This month, we celebrate lupus warrior Kaamilah Gilyard who is determined to change the lives of future generations by working hard to ensure equal representation of African Americans in lupus clinical studies.

Having suffered greatly as a teenager to get a diagnosis of her lupus symptoms, Kaamilah is determined that today’s teens and those of the future should never go through anything similar.  Her journey has not been easy with serious complications and several hospital stays over the years. But she sees having lupus as her call to inspire others to take action from getting diagnosed, seeking proper care, advocating for lupus federal funding, and supporting lupus research.

Kaamilah views clinical trial participation as a moral obligation, particularly as an African American woman.  “Lupus is not a black disease, but people who look like me are at greater risk and have a higher rate of its most severe forms.  If we don’t feel obligated to support research for our community, then who is supposed to do it? And if we don’t, how can we know if the drugs being tested will work for us?”

To Kaamilah, encouraging her community to take part in lupus research is her way of furthering efforts to overcome the lack of diversity in trials and the lack of equity in healthcare among populations of color.

Following her conscience, Kaamliah already has been in four clinical trials.  Her first trial looked at the genetic links to lupus, and she joined with her sister who has another autoimmune disease.  Next, she began to join clinical trials that tested potential new treatments. Not all have proven successful, but Kaamilah values them as an opportunity to keep fighting for a better life.

“I can’t afford to stop fighting, not just for myself but for family members and people I love. Even as we are getting better medications, the end goal is a cure. You may not reap the benefits in your lifetime. But maybe your daughter, your granddaughter will.

Her words are so moving, they speak for themselves.  “We have to show up in the research process. By participating in clinical studies, you get to speak up for yourself, family members and even those who aren’t born yet.  Imagine how good it will feel if you’re in a trial and it works! You’ll be part of better treatments, part of the cure!”