KANSAS CITY, Mo. — African-Americans are much less likely than whites to participate in studies to find better treatments and cures for diseases. A campaign called “I’m In” is trying to change that.
Dr. Marjorie Williams has come a long way as she walks down the hall at Concord Fortress of Hope Church.
“From the point I was on a walker and in a wheelchair and people assisting me,” Dr. Williams said.
The former superintendent of the Hickman Mills School District didn’t know for a year why she had progressive weakness in her arms and legs. It turned out to be a disease called CIDP (chronic inflammatory demyelinating polyneuropathy) that can be treated with infusions of immune globulin. Dr. Williams is now part of a study to determine the best dosage for improving grip strength in those with CIDP.
“What would be the benefit for me and then also how can I benefit others?” were among the many questions she asked before enrolling in the study.
The hope with the “I’m In” is that more African-Americans will consider being part of research. Only five percent of clinical trial participants are African-American even though they make up thirteen percent of the population.
Trust is an issue, says the president of the Greater Kansas City Medical Society.
“There’s a history that’s deep-rooted in this country of using African-Americans kind of as guinea pigs,” Dr. Leslie Fields said.
Dr. Fields says much has changed.
“I think there’s a lot more regulation that insures patient safety, and I think it’s a good process we should be confident in,” she said.
She says participants can be part of the solution — finding better treatments.
“Making sure we have a health care system that provides excellent health care for everyone,” Dr. Fields said.
“The data collected from this study will prove beneficial to others who may come along this path,” said Dr. Williams.
With treatment, she says she’s eighty-five percent better.
The Black Health Care Coalition will soon start posting information on its website about studies being done locally. Dr. Fields says if you’re diagnosed with a disease, ask your doctor if you might benefit from participating in a study.