WASHINGTON (Gray DC) - The National Institutes of Health is working to include African-Americans in its clinical studies. Right now, they say, participation in these studies is almost exclusively white.
Researchers say 15 people are diagnosed with ALS every single day. The disease affects nerve cells in the brain and spinal stem. The patient slowly loses control over their muscles and the ability to walk and talk. Once it's caught, a person typically lives an average of two to five years.
Dr. Janel Johnson spends her days looking for the cause of the disease and says many African-Americans she's spoken to are willing to participate in studies but simply don't know about them. She says race can be a factor when deciding how to treat a patient and worries without African-American involvement in clinical trials, the same tailor-made care won't be available for them.
"If we don’t participate in these studies, it has the potential to leave us out of the equation when these treatments are available," she added.
Dr. Johnson says there is a common misconception that patients don't believe they'll be eligible for trials. She says there are typically open trials at any stage of the disease, including pre-diagnosis. Trials can range from little involvement such as donation of blood or saliva to recurring meetings.
Former Baltimore Raven O.J. Brigance was diagnosed at the age of 37. Ten years later, Brigance and his wife Chanda cite progress in research as a main reason for his success. They encourage others in their community to participate in any study available.
"No matter how you feel, get up. Show up. Never give up," O.J. Brigance says.
The couple started the Brigance Brigade foundation almost immediately after Brigance's diagnosis. They work to provide wheelchairs, speaking monitors and wheelchair ramps for those in need.
"We want to be the couple, the two to help those people," Chanda Brigance says.
To learn how you can get involved with the Brigance Brigade Foundation, go to: http://www.brigancebrigade.org
To find out which trials you may be eligible for: https://clinicaltrials.gov or email firstname.lastname@example.org.