Medicines can affect people differently and must be tested among each potential patient group— by race, gender, age, and ethnic background— so doctors can know how to use them safely and effectively. This is especially important for Black Americans, who are underrepresented in clinical trials and more likely to die from lupus than Caucasians.
Aside from the history Blacks have with clinical trials, the myths surrounding how clinical trials work often keep Blacks from participating.
Here are 7 myths you should ignore when it comes to clinical trials, according to the Lupus Research Alliance:
Myth: If I want to join a trial, I will not be told anything about the trial or treatments I might take.
Fact: Researchers are not allowed to give you treatment in a trial unless you fully understand what is going to happen.
Before agreeing to be in a trial, the trial team will walk you through the process. You can ask questions about anything you want, like what treatment you might get, what happens during visits, what the potential risks and benefits are, and how long the trial might last. This process is called “informed consent.”
Information about the trial will be provided in a printed or digital document called an informed consent form. You can take as much time as you need before deciding. It is very important to understand a clinical trial and to be comfortable with what is planned to happen before you agree to participate.
Myth: I can join any trial.
Fact: Each clinical trial has a list of requirements about who can be in the trial.
For example, the researchers might need to test people of a certain age, gender, or health condition. These requirements can be found in the informed consent form you will get before agreeing to join a trial. These requirements are in place to make sure each trial gets the most accurate results and is as safe as possible.
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Myth: Trials are scary. I don’t know how I’m protected.
Fact: While there are some risks, every clinical trial has a detailed plan reviewed by many experts to make sure it is as safe as possible. As a participant, you are protected from unnecessary risk.
Experts from federal health agencies, such as the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA), review and approve trial plans. Institutional review boards (IRBs), which are comprised of doctors, scientists, and community members, also review the trial plan to make sure the potential risks to participants are not too high.
These experts continue to monitor safety throughout the trial. The potential risks for every trial are different. These can range from mild discomfort to long-lasting side effects or death. All the potential risks must be explained to you before you agree to be in a trial. Doctors will monitor your health throughout a trial, and you can leave a trial at any time for any reason.
Myth: If there is a clinical trial that could help me, my doctor will tell me about it.
Fact: Your doctor may not know about all available clinical trials.
Patient advocacy groups like the Lupus Research Alliance can help you find trials and provide resources to help you decide if you should