Lung Cancer Clinical Trials and the US Black Community

*Please note: This slide show is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your doctor about any questions you may have regarding a medical condition.

How lung cancer affects the US Black community

More than 46 million people in the United States identify themselves as Black or African American.¹ In this video, we will use the word Black, as many people use it to describe a community as well as a specific ancestry.

For Black men in the US, lung cancer is the leading cause of death from cancer. It is the second for Black women.²

More US Black men die from lung cancer each year than men from any other group.² More Black women die of lung cancer than Asian and Pacific Islander or Hispanic and Latina women.

Disparities affecting Black people with lung cancer in the US

Black people with lung cancer tend to do as well as those from other groups when they receive the same treatments.

However, they often have less access to lung cancer treatment. They tend to have surgery (an effective treatment for early stage lung cancer) less often. Early diagnosis and effective treatment are important for survival and quality of life.³

Why the Black community is needed in lung cancer clinical trials

Researchers are working hard to develop new ways to screen for, diagnose, and treat lung cancer for everyone. However, they need more Black people to join lung cancer research studies, called clinical trials.

Right now, few Black people volunteer for clinical trials, therefore researchers cannot gather important information about the best screening and most effective treatment options for Blacks.

Why is the lack of diversity in cancer clinical trials a problem for the Black community?

Black people are 12 to 14 percent of the US population, but make up just 5 percent of those in cancer clinical trials.⁴ This is not enough to truly represent Black people and develop treatments that work well for their genetic makeup.⁵

Importance of developing treatments for specific genetics

Too few Black people in clinical trials means tests and treatments may not be optimal for people with this genetic makeup.

For example, a test to measure a woman's risk of breast cancer was only checked for accuracy with White volunteers. If Black women had been available and included, the test would be more accurate for all women, including Black women.⁵

Why are Black people less likely to take part in clinical trials? Historical abuses

Lack of trust in the medical system is one reason few Black people join clinical trials.

Many remember the US Public Health Service's study of syphilis in Black men who did not give consent or receive effective treatment.⁶ They also know about cases where research has profited by taking Black people's tissue without their consent.⁷

Why are Black people less likely to take part in clinical trials? Unclear process, too far away, don’t qualify

Other reasons include Black people not qualifying because of physical characteristics or health problems, and living far from trial sites that going there is inconvenient or expensive.⁸

The need for more clinical trial information for Black people

Many Black people's doctors do not tell them about trials or ask if they want to join.^1,8 This is sometimes because the doctors do not have enough information.^8,9

Why Black people should advocate to take part in cancer clinical trials

It is important to ask your doctor or healthcare team about joining clinical trials. Participants of clinical trials may receive many potential benefits:

• A trial may allow you to try a treatment that is not yet available to the public.
• You benefit the Black community by helping researchers learn how treatments work for people with your genetic makeup.
• The treatment may be helpful or extend your life.
• You will receive medical care even if you do not get the trial treatment, so there is no risk of going without treatment.

Questions to ask about trial participation

The US Food and Drug Administration (FDA) has a list of questions to ask before joining a clinical trial.

Questions include: "What is the purpose of this clinical trial?", "Will I be paid?", and "Can I leave at any time?"

Important things to know about cancer clinical trials

Today, US research laws require researchers to explain trials completely, answer your questions, and get written consent before you join. You can leave the trial at any time.

Potential clinical trial risks

Trials involve some risk for everyone. You may not receive the treatment you hope for, or it may not work as well as you would like. You may also experience discomfort or pain during treatment.

Ask your cancer specialist about the risks and benefits of a clinical trial. You may want to talk with your primary care doctor if you have a closer relationship.⁸

Making your decision about a clinical trial

Research shows many potential benefits for Black people who take part in clinical trials.

Feel free to talk with family members, friends, people in your community, or perhaps your pastor before deciding to join a trial.⁸

Where can I find a lung cancer clinical trial?

In the United States, you can search for a trial that makes sense for your specific case at ResearchMatch.org funded by the NCI or at abreathofhope.org/clinical-trials.

References

1. Jones N, Marks R, Ramirez R, Rios-Vargas M. United States Census Bureau. 2020 Census illuminates racial and ethnic composition of the country. August 12, 2021. Available at: https://www.census.gov/library/stories/2021/08/improved-race-ethnicity-measures-reveal-united-states-population-much-more-multiracial.html. Accessed June 6, 2022.
2. Giaquinto AN, Miller KD, Tossas KY, Winn RA, Jemal A, Siegel RL. Cancer statistics for African American/Black People 2022 [published online ahead of print, 2022 Feb 10]. CA Cancer J Clin. 2022;10.3322/caac.21718. doi:10.3322/caac.21718
3. Siegel RL, Miller KD, Fuchs HE, Jemal A. Cancer statistics, 2022. CA Cancer J Clin. 2022;72(1):7-33. doi:10.3322/caac.21708
4. American Lung Association. New campaign strives to increase access to lifesaving lung cancer clinical trials for black Americans. Available at: https://www.lung.org/media/press-releases/lifesaving-lung-cancer-clinical-trials. Accessed February 14, 2022.
5. McCarthy M, Fadiran E, Parrish L, et al. Dialogues on diversifying clinical trials: successful strategies for engaging women and minorities in clinical trials. Journal of Women's Health. 2012;21:713-716. 10.1089/jwh.2012.3733
6. Swaby J, Kaninjing E, Ogunsanya M. African American participation in cancer clinical trials. Ecancermedicalscience. 2021;15:1307. Published 2021 Oct 25. doi:10.3332/ecancer.2021.1307
7. US Centers for Disease Control and Prevention. The Tuskegee Timeline. Last reviewed April 20, 2021. Available at: https://www.cdc.gov/tuskegee/timeline.htm. Accessed February 14, 2022.
8. Pazanowski MA. Henrietta Lacks’ estate sues for profits derived from tissue. Bloomberg Law. October 5, 2021. Available at: https://news.bloomberglaw.com/health-law-and-business/henrietta-lacks-estate-sues-for-profits-derived-from-tissue?context=article-related. Accessed February 15, 2022.
9. Swaby J, Kaninjing E, Ogunsanya M. African American participation in cancer clinical trials. Ecancermedicalscience. 2021;15:1307. Published 2021 Oct 25. doi:10.3332/ecancer.2021.1307
10. Jones BL, Vyhlidal CA, Bradley-Ewing A, Sherman A, Goggin K. If We Would Only Ask: How Henrietta Lacks continues to teach us about perceptions of research and genetic research among African Americans today. J Racial Ethn Health Disparities. 2017;4(4):735-745.