Racial Inequities in Clinical Trials: Anne’s Advice

Anne Charity Hudley, PhD, is associate dean of educational affairs and professor of education at Stanford University. She grew up just outside of Richmond, VA, and her ride home from school each evening through Richmond’s Shockoe Bottom area smelled like the sweet drying of leaf tobacco. Many people in the generation before her were offered tobacco as children before they even knew the word addiction.  

On August 2, 2018, I was diagnosed with adenocarcinoma, the most common cancer of the lung. Twenty-two days later, I had surgery to remove 1 lobe of 1 lung. Shortly afterward, I found out I was stage 3A (IIIA) and needed chemotherapy. I saw my medical oncologist that same day. In September, I began 4 rounds of intravenous (IV) chemotherapy. I joined the ALCHEMIST Lung Cancer Trials in January 2018 after I was diagnosed with the EGFR-positive lung cancer mutation. I was randomly selected to receive Tarceva (erlotinib) as part of the study. I completed the study, and 7 months later, I had a recurrence in the form of metastasis to my brain.  

I am lucky to have a fantastic team of doctors, including my magnificent surgeon, who is a Black woman. I will share some key things I learned from my entire experience, especially being involved in a clinical trial. 

Research clinical trials when you are diagnosed  

When I was first diagnosed, I went into surgery thinking that my cancer was not very advanced. Because I thought surgery would cure me, I did not take the time to research clinical trials early on. However, the stage 3A (IIIA) diagnosis made me think harder about what I could do to make sure that the cancer didn’t progress or return. Luckily, I discovered that the ALCHEMIST trials were open to patients with lung cancer stages 1-3A (I-IIIA).  

You’re overwhelmed when you’re first diagnosed. I encourage you to contact your medical team and other cancer patients who have participated in clinical trials and ask your doctors about possible clinical trial opportunities. Asking about clinical trials is particularly important if you’re not being treated at a major cancer center. 

Black women, clinical trials, and trust  

You don’t know the outcome when you join a clinical trial, but one of my doctors is a Black woman who helped build my trust. Despite building that trust for an entire month, I was still undecided. My parents helped me sift through the medical research, and thanks to them, I decided to join. And thanks to GO2 for Lung Cancer, I was able to talk to other people who were enrolled in the trial.  

Side effects can be impacted by race

Race even plays a role in the manifestations of side effects. The oral therapy I took, Tarceva (erlotinib), often produces fewer rashes in Black people than in White people due to differences in the skin that aren’t yet fully understood. Race also plays a role in how kidney function is monitored. According to the National Kidney Foundation, glomerular filtration rate (GFR) measures how well the kidneys remove waste and excess fluid from the blood. It is calculated from the serum creatinine level using age and gender, with adjustments for those of African American descent (National Kidney Foundation, 2017). My creatinine levels consistently run high. 

If my clinician didn’t know I was Black, my labs could be misread. The realities of my multiracial genetic makeup often left doctors waiting with me to see what side effects would occur.   

Pros and cons of clinical trial participation, especially for a Black person 

There are risks associated with clinical trials, so you want to be sure you know all potential health dangers. While doing so, note any ignorance of racial or economic strains your participation may cause, as they are indicators of bias you may experience while in the trial. Ask about the study’s preliminary data on Black people and how your participation will impact the results.  

However, there are also many benefits associated with clinical trials. You can get potentially lifesaving treatments for free that help you feel better, and you can help others by advancing research. Black Americans are underrepresented in clinical trials, yet their participation is crucial for scientists to understand how drugs affect them, including benefits, risks, and side effects. This information has been instrumental in developing a treatment for diseases that Black people are particularly susceptible to, or that present more commonly in Black populations, including sickle cell disease. Black patients have the power to help make groundbreaking changes in the field of medicine by participating in clinical trials that directly help other Black people. 

Key questions to ask your doctor about clinical trials 

I leave you with the questions that I recommend you ask when considering a clinical trial: 

• What are my clinical trial options? Do I need to travel to reach them?
• What are the side effects of clinical trial medicine?
• What are the costs for prescription medicines, over-the-counter medicines, and materials that you may need in addition to the clinical trial medicine? Will my insurance cover it, and are there programs to help me cover it? Are there other unexpected costs that may come up?
• Who do I see, call, and talk to if I have issues? What do I do if I have an emergency medical issue?
• Who will handle my various medical needs while I participate in the trial?
• Who will coordinate and schedule my treatments and notify me about the trial progression?
• Are there particular findings about the risks and benefits of this trial for Black people?