The Big Trust Factor

The Big Trust Factor

How African Americans can help improve treatment for hepatitis C

Among myriad health disparities affecting African Americans, hepatitis C virus (HCV) boasts a high position on that list. Although we make up only 12 percent of the population, we account for 22 percent of HCV infections.

There are a lot of things 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 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 percent of clinical trial participants are African Americans.

This low number is not only concerning, but it is 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? Researchers don’t have concrete answers, but they speculate that African Americans are at greater risk for contracting the virus through blood transfusions, higher incidence of IV drug use and occupational exposure. They also cite studies that found African Americans didn’t respond as favorably to older HCV treatments containing interferon as white people due to a genetic variation of the IL28B gene, making them more likely to have chronic HCV. (Newer non-interferon therapies have been on the market since 2013, and they have higher cure rates for people of all races.)

Why don’t we have a better 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 Lacks’ cells as our go-to arguments for why we don’t trust medical research. 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.

But just as there are risks to participating in clinical trials, there are risks if we don’t. Not participating means researchers will continually make assumptions about how to treat us, apply what is learned in predominately white studies to African Americans or, worse, determine 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 percent to 10 percent 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 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 health care). 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.

LaTroya Hester is communications director of NAATPN.

LaTroya Hester