• Asthma diagnoses and asthma-related deaths are more common among Puerto Rican, American Indian, and Black people than white or Asian people.
• Participants in research studies for new asthma treatments tend to be disproportionately white.
• Researchers, health organizations, and government agencies are taking steps to improve the representation of people of color in clinical trials for asthma and other health conditions.

Research studies on asthma often lack racial, ethnic, socioeconomic, age, and gender diversity. This includes clinical trials, which study the potential benefits of new medications and treatments.

Here, we explain the importance of diversity in asthma research studies and why clinical trial participants should represent the people living with this condition.

Racial and Ethnic Differences in Asthma

Past research has found that asthma is most prevalent among Black, American Indian, and Puerto Rican people compared to other ethnic and racial groups. The American Lung Association analyzed 2018 data to find the lifetime prevalence of asthma for several racial and ethnic groups in the U.S. (In this case, prevalence measures the number of people in a specific group who have asthma.) The breakdown is as follows:

• Puerto Rican — 14 percent
• American Indian — 12 percent
• Black — 11 percent
• White — 8 percent
• Hispanic — 6.4 percent
• Asian — 4 percent

Mortality in Asthma Based on Racial and Ethnic Differences

The Asthma and Allergy Foundation of America analyzed how likely it is for people in different ethnic and racial groups to die from asthma. The organization found that Black and Puerto Rican individuals are nearly three times more likely to die of asthma than white people with asthma.

Despite the increased risk of asthma for several racial groups, the number of nonwhite participants in asthma research studies remains disproportionately low.

The Importance of Clinical Trial Diversity

The types of people enrolled in asthma clinical trials should be similar to the demographics of people living with asthma, but they aren’t. Although Puerto Rican, American Indian, and Black individuals are more likely to have asthma, most participants in asthma clinical trials are white.

Black, American Indian, and Puerto Rican people are more likely to have severe asthma, and they have also been shown to have poorer responses to some asthma medications. This is especially important for Black people who may not respond to traditional inhaler therapy as expected. This difference in medicine effectiveness proves the need for more diverse testing in clinical trials.

The New England Journal of Medicine noted, “Although Blacks and Hispanics (or Latinos) make up 13.4 percent and 18.1 percent of the U.S. population, respectively, they represent only 5 percent and less than 1 percent of trial participants.” This data emphasizes the fact that the populations most in need of new and effective asthma therapies are the least represented in clinical trials to study emerging treatments for asthma management.

By safely and respectfully including more people of color in research studies, scientists will better understand why different treatment needs among racial and ethnic groups exist — and how to improve the health of all people. While there is increasing research into how sociocultural and racial differences contribute to asthma diagnoses, there is less research into treatment options to improve outcomes. A more balanced representation of racial groups can help researchers better identify risks for asthma development and interventions for individuals based on their backgrounds. In addition, disparities in health care can be addressed to improve quality of life for high-risk populations.

Why Join a Clinical Trial?

Participating in a clinical trial may benefit you as well as society. If you join, you may have potential access to asthma control therapies that aren’t currently available to the public. Keep in mind this isn’t guaranteed, as there is a chance of being in the placebo (control) group of a clinical trial.

There is also a benefit to your community if you join a clinical trial. Your data can increase representation for people with backgrounds similar to yours, helping scientists and doctors to better understand and treat asthma across racial and ethnic groups.

Barriers to Clinical Trial Diversity

One reason for a lack of diversity in clinical trials is the lack of trusting relationships among academic research groups and people of color. This distrust in the health care system stems in part from historical wrongdoings by the medical field against people of color. This includes the U.S. Public Health Service Syphilis Study at Tuskegee and the extraction of extraordinary cancer cells from Henrietta Lacks. Although national organizations and academic institutions have worked toward reconciling these and other historic violations, there is still a complex relationship between people of color and clinical trials.

Even when diverse populations do participate in asthma clinical trials, study authors often fail to report race and ethnicity differences among participants.

Other major barriers to increasing diversity in clinical trials include:

• Distrust in or confusion about the clinical trial process
• A lack of awareness of the potential benefits of such research
• Fear of side effects or health issues
• Lack of money, time, and transportation
• Desire for more clinical trials about alternative treatment options beyond traditional Western medicine

These barriers must be overcome to advance asthma research and improve health outcomes for everyone living with asthma.

The Future of Clinical Trial Diversity

Many researchers, advocacy groups, and government agencies are working to improve clinical trial diversity for asthma and other health conditions.

In April 2022, the U.S. Food and Drug Administration (FDA) announced a commitment to increase clinical trial diversity. “The U.S. population has become increasingly diverse, and ensuring meaningful representation of racial and ethnic minorities in clinical trials for regulated medical products is fundamental to public health,” said Dr. Robert M. Califf, an FDA commissioner, in a press release. “Going forward, achieving greater diversity will be a key focus throughout the FDA to facilitate the development of better treatments and better ways to fight diseases that often disproportionately impact diverse communities.” Several subcommittees in the FDA and other major medical administrations are working on increasing diverse representation in research trials.

In addition, the Asthma and Allergy Foundation of America has laid out several strategies as part of its effort to improve asthma health among people in underserved populations. These include plans to:

• Promote and provide incentives for medication studies of asthma in people of color
• Address cultural stigmas and myths about clinical trials to build trust in the research process
• Evaluate whether environmental factors are responsible for the higher asthma rate in some racial groups
• Research asthma risk factors in underrepresented populations to create more informative public health interventions
• Streamline data collection standards so racial and ethnic data coming from different agencies is uniformly reported
• Evaluate medication adherence trends to better ensure people in underserved populations can continue their asthma treatment plans
• Improve the ethnic and racial diversity of the scientists and clinicians who study asthma
• Ensure research review boards include people from a diverse range of backgrounds

The foundation notes there is no simple solution to this issue. A multipart strategy may improve clinical trial diversity, which could ultimately help asthma outcomes for everyone.

If you’re interested in participating in a clinical trial for asthma research, ask your doctor about which studies may be available to you.

Talk With Others Who Understand

MyAsthmaTeam is the social network for people with asthma and their loved ones. On MyAsthmaTeam, members come together to ask questions, give advice, and share their stories with others who understand life with asthma.

Have you ever been involved in asthma research? Would you consider participating in a clinical trial? Why or why not? Share your experience in the comments below, or start a conversation by posting on your Activities page.