Asthma hits communities of color the hardest. Black, Indigenous, and certain groups of Hispanic/Latino people have the highest rates of asthma, as well as hospitalizations and deaths due to the condition. Yet these groups are often left out of asthma research.
Black and Hispanic people, for instance, make up about 13% and 18% of the U.S. population, respectively, but represent 5% or less of people in clinical trials for new drugs. This lack of diversity means treatments are mostly tested on White people, overlooking the unique needs of different communities.
It’s important to note that asthma inequalities aren’t the result of biological differences between races.
“There are certainly diseases that are more prevalent in people that have a specific genetic ancestry,” says Isabel Bazan, MD, a pulmonologist and critical care specialist with Yale Medicine in New Haven, Conn. “But that’s very different from someone’s self-reported race.”
Bazan wants to see researchers dig deeper into the social determinants of health that drive asthma disparities. These include things like income, housing conditions, access to health care, and the impact of systemic racism and chronic stress.
“Getting to the bottom of where these differences come from is hugely important,” she says. “Ask yourself: How are we going to address why those disparities exist?”
The Problem With Race-Based Medicine
While researchers should make sure more diverse groups are included in clinical trials, it’s just as important to avoid treating all people of color as if they’re the same. “Which they are not,” Bazan says.
For instance, Puerto Rican people have the highest rates of asthma, while Mexican-American people have much lower rates. Grouping them all together as “Hispanics” ignores these differences, she says.
For more context, here’s a breakdown of asthma rates among U.S. adults by race and ethnicity:
- Puerto Rican (14%)
- Indigenous (13%)
- Non-Hispanic Black (10.3%)
- Non-Hispanic White (8.4%)
- Mexican American (6.4%)
- Central or South American (5.3%)
- Mexican (4.4%)
- Asian (4.4%)
Asthma is more common in certain racial and ethnic groups, but that’s not because of DNA differences. Instead, Bazan says, it’s about “genetic ancestry.” Those are health traits passed down from your ancestors that are shaped by living conditions.
Think about it this way: Family members may share health problems if multiple generations live in polluted areas, can’t get good health care, or deal with long-term stress. Over time, these things in the environment can even affect how genes work. This is called epigenetics.
Have certain groups been disadvantaged long enough that we’re starting to see changes in epigenetics that add to poor asthma control? “That’s possible,” Bazan says. “But it’s really about the environment and where the social determinants of health started.”
The Need for Diversity in Asthma Research and Targeted Treatment
Jonathan Witonsky, MD, is an allergist, immunologist, and researcher at the University of California, San Francisco.
At UCSF’s Asthma Collaboratory, he and his colleagues study how genes and the environment combine to create asthma disparities – and how understanding these things can lead to better, more tailored treatments.
A key area of study is biomarkers, substances in the blood that help doctors diagnose specific types of asthma. Two common asthma biomarkers are:
- Immunoglobulin E (IgE): An antibody linked to allergic asthma
- Eosinophils: White blood cells that cause inflammation in the airways
IgE levels and eosinophil counts act as signals in the blood that help guide treatment decisions, like who qualifies for advanced medicines like biologics. There’s growing evidence that biomarker patterns differ across racial and ethnic groups.
For example, Black children and Latino children often show distinct patterns, and even within Latino groups, Puerto Rican and Mexican American kids tend to have different profiles, Witonsky says.
But there’s limited research on asthma biomarkers in people of color. This gap means underrepresented groups may not qualify for biologics, he says, since current data is largely based on studies of White people.
While biomarker differences likely stem from a complex mix of genetics and environmental exposures, more research is needed to fully understand the link. “Diversity in clinical trials is essential if we want to find clear answers and develop better treatments for everyone,” Witonsky says.
Building Trust With Communities
America has a long history of medical mistreatment of people of color, and there’s a growing push for researchers to build trust with the communities they want to help.
Bazan points to the PREPARE trial as a good example. It enrolled 1,200 Black and Hispanic/Latino adults with asthma. Researchers partnered with local leaders, provided easy-to-understand materials, and asked what would encourage community members to join.
As a result, they recruited enough people within these underserved and underrepresented populations to power the clinical trial. More than 90% of people in the trial said they’d do it again.
“That really tells you that this population is there and willing to participate if you meet them where they are and make your clinical trial a good experience for them,” Bazan says.
Overcoming Barriers to Joining Clinical Trials
Hannah Jaffee, research manager at the Asthma and Allergy Foundation of America, regularly asks people with asthma what they think about clinical trials. She’s found that people of color want to take part in research but aren’t sure how to get involved.
To simplify this process, she and her team created resources to explain what clinical trials are and how to join them. The goal? To bring in more people in marginalized groups, who are more likely to have serious asthma and benefit from better control of their symptoms.
“Diversity in clinical trials is critical to ensure treatments are safe and effective for the people who are most likely to use them,” Jaffee says. “It also boosts confidence in using these treatments.”
Jaffee also points out that people of color often face more barriers to clinical trials, even if they want to join one. To help fix this, she suggests researchers:
- Pay for transportation, child care, or lost wages due to the study
- Hire more people of color, including Black, Hispanic, and Indigenous researchers
- Recruit community members to help run the study
- Offer clinical trials in areas without big hospitals or research centers
If you join a research study, it’s important to know that you’ll get treatment that doctors believe will help you and that your medical information is kept private. But always feel free to speak up if something feels unclear or unsafe.
“There’s still a lot of mistrust on what goes into the clinical trial process and a lack of awareness about how data is being used,” Jaffee says. “So, I like to drive home the point that they’re protected and it’s OK to ask questions.”
How to Find Asthma Clinical Trials
Start by talking to the doctor who treats your asthma. If they’re not connected to a research study, ask if they can refer you to a nurse educator or clinical trial coordinator who can help find opportunities.
Find more information about asthma clinical trials through:
- ClinicalTrials.gov
- Asthma and Allergy Foundation of America
- American Lung Association
- Allergy & Asthma Network
- National Institute of Allergy and Infectious Diseases
If you don’t want to join a study to test a treatment, you can get involved in other ways. For instance, you may be able to offer feedback on how to make the trial more patient-friendly.
“The onus on improving diversity is on the researchers themselves,” Jaffee says. “But there’s a growing trend to incorporate the patient voice into the clinical trial development process.”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Isabel Bazan, MD, pulmonologist and critical care specialist, Yale Medicine; assistant professor of medicine (pulmonary, critical care, and sleep medicine), Yale School of Medicine.
Jonathan Witonsky, MD, assistant professor, Department of Pediatrics, University of California, San Francisco.
Hannah Jaffee, research manager, Asthma and Allergy Foundation of America.
Asthma and Allergy Foundation of America: “Asthma Disparities in America: A Roadmap to Reducing Burden on Racial and Ethnic Minorities.”
KFF: “Racial and Ethnic Disparities in Access to Medical Advancements and Technologies.”
National Institute on Minority Health and Health Disparities: “Diversity and Inclusion in Clinical Trials.”
Contemporary Clinical Trials: “A randomized, open-label, pragmatic study to assess reliever-triggered inhaled corticosteroid in African American/Black and Hispanic/Latinx adults with asthma: Design and methods of the PREPARE trial.”
