Participating in clinical trials key to medical advances

By TaLana Hughes

Guest columnist

My daughter was just two months old when doctors told me that she had sickle cell disease. At the time, I was a young mother, still in school and knew very little about the disease and what it meant in terms of caring for my little girl.

Now 13 years old, she is one of approximately 100,000 Americans who suffer from sickle cell disease - an inherited blood disorder caused by abnormally shaped red blood cells that can lead to organ damage and failure, stroke, anemia and severely chronic pain. The worst part? There is currently no cure for this disease.

Receiving the diagnosis was scary, and I wasn't connected with any type of support group or resources to help me navigate this new reality. Which is what drew me to work at the Sickle Cell Disease Association of Illinois.

While providing support to families is a big part of my job, making sure that advances are made to better treat the disease is just as important.

Right now, there is currently only one FDA-approved drug to treat the disease - and while it has worked for my daughter, I know all too well that it's not the case for everyone. One important way we can make advancements in providing better treatment for sickle cell disease is through clinical trials.

But, for clinical trials to be useful, people of diverse backgrounds, racial/ethnic groups, ages and locations need to participate.

We know that sickle cell disease is more common among certain ethnic groups, but we also know that many of these same ethnic groups are less likely to participate in clinical trials.

African Americans make up more than 13 percent of the U.S. population, but only 5 percent of clinical trials participation. Hispanics comprise 17 percent of the U.S. population, and only 7.6 percent participate in clinical trials.

I often hear of people talking about clinical trials in a negative light: "It won't effect me and my diagnosis" or "I don't want to be a guinea pig." However, participation in clinical trials gives you the opportunity to make a difference in the lives of others who suffer from disease.

Your participation is a gift to others. If we want more treatment options available for yourself and others, we must change the way we think about clinical trials.

We're proud to be partnering with other organizations to change the perception of clinical trials. Visit www.bigtencrc.org/beagift to learn more.

TaLana Hughes, MPH, of Chicago, is executive director of the Sickle Cell Disease Association of Illinois