In recent years, considerable progress has been made in the early detection and treatment of lung cancer. Unfortunately, this progress has not been shared equally. Lung cancer still places a disproportionate burden on underserved communities, including the Hispanic/ Latino community. The current lung cancer five-year survival rate of 20% or less is even lower for Hispanic patients compared with non-Hispanic whites, which may be because more Hispanic individuals are diagnosed at a later stage. This is a significant burden as the American Cancer Society estimates that while about 11,000 Hispanic men and women are expected to be diagnosed with lung cancer, about half are also expected to die from it.
Besides late diagnosis, Hispanic patients are also much less likely to participate in clinical trials, which can be a vital part of cancer treatment. In 2020, more than 32,000 people participated in clinical drug trials; 75% were white, but only 11% were Hispanic. In addition, according to the FDA, though Hispanic participants account for roughly 19% of the population in the US, they only make up 1% of clinical trial participants. But Hispanic people comprise the largest and youngest community of color in the United States, with a population of 60.6 million. This makes their participation in clinical trials more crucial than ever.
“Too often we don’t get the level of care we deserve,” says Ivis Febus, a Hispanic woman who was diagnosed with lung cancer over 30 years ago who has worked to educate people in her community about lifesaving medical changes. "Every person deserves the best care possible, which might be available to us in a clinical trial. But many eligible people from our community are not participating in clinical trials and therefore not gaining access to potentially lifesaving medicines. And if our community is not represented in research, then we won't know exactly how the medicines work for us,” she continued.
Researching Clinical Trial Misconceptions
To better understand the concerns of patients like Ivis, the Lung Association conducted several community and patient focus groups on clinical trial misconceptions. The findings from these interviews revealed that:
- There is a clear need for more clinical trial education in the Hispanic community. One participant said, "I feel like we [Hispanics] tend to respect physicians, so we will follow what they say. But because sometimes it's hard for Hispanics to access care and education, they may not go to the doctors often. But once we go to the doctor, we trust the physician."
- General information aimed at raising awareness of clinical trials and dispelling myths should use simple language.
- All clinical trial materials must be available in Spanish, and it is imperative that a Spanish-speaking clinical research staff member be present to answer questions.
- Patients are interested in what they will get from clinical trials and what they need to give up, risks vs. benefits and how they will be cared for while in the trial.
Concerns about immigration status have also influenced Hispanic/Latino clinical trial participation. "If they have to reveal whether they are legally here or not, or they don't feel safe regarding their immigration status then they won't participate in a clinical trial," one participant explained. Another participant remarked, "If there is not enough [in the process] that they [the patient] can trust, they're [scared they are] going to be sent back."
Changing the Lung Cancer Treatment Narrative for the Hispanic/Latino Community
Clinical trials are an essential part of cancer treatment, and there are many different types of clinical trials available depending on the type of cancer an individual is diagnosed with. Sometimes, the best treatment option for a cancer patient is a medicine that is in development. "Every medicine prescribed by your doctor was once tested in a clinical trial," one doctor said. "When I speak with my patients about clinical trials, I explain that any drug they receive has been initially tested in a clinical trial and then was adopted widely because it was the best treatment available. This next clinical trial is geared toward finding an even better treatment." The surveyed doctors also advocate working with your healthcare providers to ensure your comfort throughout the process.
“I'm passionate about improving cancer care for my community, and so what I have to say is open your mind to participating in a clinical trial and advocate for yourself by telling your doctor you want all of the information because you deserve it,” Ivis exclaimed.
The Lung Association's Awareness, Trust and Action program focuses on raising clinical trial awareness in the Hispanic/Latino community. Key messages discovered in focus groups for the campaign promote that clinical trials help to find better treatments for patients" or "treatments that extend lives or offer a better quality of life."
Learn more about Awareness, Trust, and Action: Lung Cancer Clinical Trials and Hispanic Americans.
Blog last updated: November 7, 2024
