Among the myriad of health disparities affecting African Americans, Hepatitis C Virus (HCV) boasts a high position on that list. Although we only make up 12% of the population, we account for 22% of HCV infections.
There are a lot of things that African Americans frequently do to combat HCV in our community. We take time to understand the risk factors associated with spreading the virus, educate our community about HCV symptoms, and we encourage one another to talk to our doctors about any liver-related suspicions that may arise.
But there is one thing we do not do to help advance HCV treatment and prevention: participate in clinical trials. The reason? Our deep-seated lack of trust.
We don't trust the news. We don't trust the "system". And then there's that cousin on our daddy's side who we love, but just don't trust.
In this same vein, when it comes to scientists, researchers and even our own doctors, we say, "I just don't trust 'em." And the proof is in the pudding. According to the Food and Drug Administration, only about 10% of clinical trial participants are African Americans.
This low number is not only concerning, but it also self-defeating. We know innately that when it comes to health information and treatment, what applies to the general population does not always apply to us. Hepatitis C is a great example of this.
African Americans are twice as likely to have been infected with HCV and more likely to suffer from chronic HCV than white people. Why? African Americans do not respond as favorably to HCV treatment as white people. Why not? Some studies suggest that African Americans with HCV progress to cirrhosis of the liver at a much slower rate than whites. But, why?
Why don't we have the answer to these questions? Part of the reason is because African Americans do not participate in clinical trials--largely due to a lack of trust in researchers.
African Americans are right to approach clinical trials with caution. We quickly cite the Tuskegee Syphilis Experiments and the cloning of Henrietta Lack's cells as our go-to arguments. We also note the severe lack of African American researchers in the field. But thanks to the National Research Act of 1974, we have better legal protections and an added assurance of the ethical standards of human research now in place.
Just as there are risks to participating in clinical trials, there are risks if we don't. Not participating means that researchers will continually make assumptions about how to treat us, apply what is learned in predominately white studies to African Americans, or worse, determine that the findings are inconclusive as it relates to African Americans. With a widening gap in HCV knowledge as it relates to African Americans, and only 5-10% of us participating in HCV clinical trials, it may be time to give some consideration to the benefits:
- Clinical trial participants get access to new treatments that aren't available to the public. This means that you're first in line if it works.
- Participants of clinical trials are closely observed by experts and always receive quality care, both standard and specialized.
- You'll learn more about your condition and how best to take care of yourself during a clinical trial.
- You'll help scientists and researchers understand how to better treat people who are similar to you (namely, other African Americans).
African Americans have always been champions for equality. Now is a good time to add health equity to the agenda. We have to work to break down barriers that create health gaps (such as poverty and access to quality healthcare). We've got to see more African American researchers heading clinical trials. But if we are going to see advancements in HCV prevention, we'll also need to trust researchers enough to contribute to the science that will help our community.