Hi, I’m Anne Charity Hudley, Ph.D., the North Hall Endowed Chair in the Linguistics of African America and the former Director of Undergraduate Research for the Office of Undergraduate Education at the University of California, Santa Barbara. I study the relationship between language variation and educational practices. I’m also a 44-year-old married African-American woman who grew up just outside of Richmond, Virginia. My ride home from school each evening through Richmond’s Shockoe Bottom area smelled like the sweet drying of leaf tobacco. Many people of the generation before me were offered tobacco as children, before they ever even knew the word addiction. Tobacco smoke has always been nasty to me; this nasty thing around me that I had to live around.

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 one lobe of one lung. Shortly afterward, I found out that the cancer was Stage IIIa (3a) and needed chemotherapy. I saw my medical oncologist that same day. In September, I began four rounds of intravenous chemotherapy. I began the ALCHEMIST Lung Cancer Trials in January 2018 after I was found to have an EGFR positive lung cancer mutation. I was randomly selected to receive Tarceva (erlotinib) as part of the study. I completed the study and seven months later I had a reoccurrence in the form of metastasis to my brain. I’m now on Tagrisso and doing well. I will have lung and brain scans every three to four months for the rest of my life.

I am lucky to have a fantastic team of doctors that includes a magnificent Black woman surgeon. And I’m particularly lucky to have such supportive family and friends, including my niece Emma Charity who helped me write this spotlight. Now I will next share some key things I learned from my entire experience, especially the clinical trial.

Research clinical trials when you are diagnosed. If you are overwhelmed, ask for help.

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 when diagnosed. But the Stage IIIa (3a) diagnosis made me think harder about what I could do to make sure that the cancer didn’t progress or return. Luckily, I found out that the Alchemist Trials were open to patients with lung cancer Stages I-IIIa (1-3a). Diagnosis is a time when you’re overwhelmed, so I encourage you to reach out to your medical team as well as 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 getting treated at a major cancer center.

Black women, clinical trials, and trust

You don’t know what the outcome will be when you join a clinical trial, but one of my doctors is a Black woman, and she helped build my trust. And yet, for an entire month, I was undecided. My parents helped me sift through the medical research, and I decided to join in the end, thanks to them. And thanks to the GO2 for Lung Cancer, I was able to talk to other people who were enrolled in the trial. These individuals helped me realize that I was willing to take a chance for a longer life, especially if the side effects allowed me to have some quality of life in the process, which has been true.

Once trust is there, side effects hit. And they are 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) is a measure of how well the kidneys remove wastes and excess fluid from the blood. It is calculated from the serum creatinine level using age and gender with adjustment 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. Ask questions.

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

But there are many benefits associated with clinical trials. You can get potentially life-saving treatments for free, you can get treatments that help you feel better, and you can help others and help scientific research. For example, Black people’s participation in clinical trials has been essential to helping scientists understand how drugs benefit and present risks and side effects for Black people. This information has been instrumental in developing 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 through their participation in clinical trials that directly help other Black people.

Key questions to ask your doctor about clinical trials.

I leave you here 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 the clinical trial medicine?
  • What are the costs for prescription medicines, over the counter medicines, 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 takes care of my various medical needs while I’m participating in the trial?
  • Who will be coordinating and scheduling my treatments and keeping me notified about the trial progression?
  • Are there particular findings about the risks and benefits of this trial for Black people?

It is important to have participation from Black and other under-represented individuals in lung cancer clinical trials so that we understand what treatments work best and what the side effects may be in different groups of people. Learn more about clinical trials on our website and through recent online articles on biomarker testing, clinical trial FAQs, and advancing inclusive research.  To learn more about treatment options, including clinical trials, contact our LungMATCH specialists at 1-800-298-2436 or support@go2.org.