Why Don’t Latinos Enroll in Clinical Trials?

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Clinical trials are the most safe, rigorous way of testing for new and more effective disease treatments.

Although Latinos comprise 18.9% of the US population, they make up just 10% of participants in clinical trials run by the National Cancer Institute and 4% of drug trials run by the FDA.

This non-reflective representation in clinical trials makes it hard for researchers to develop new treatments for this group, which suffers a heavy burden of cancer, Alzheimer’s, and other diseases.

Further, diseases present differently in different groups.

For example, Latinos on average present symptoms of Alzheimer’s approximately seven years earlier than other groups, and are 1.5 times more likely to develop Alzheimer’s than their White peers. Latinos also struggle with higher rates of certain cancers.

Therefore, to provide the most effective treatments for Latinos, who are expected to make up more than a quarter of the US population by 2050, we must prioritize a participant group in clinical trials that reflects the US population, which will benefit all people.

However, there are many reasons people are hesitate to join clinical trials.

What are these reasons? And what can we do to help?

Lack of Clinical Trial Awareness

Communication between patients and medical providers is at the heart of effective healthcare and clinical trial participation.

Studies show that Latinos may be more receptive to participating in clinical trials when information is presented by promotoras de salud and through culturally tailored educational videos.

Framing clinical trial participation in terms of altruism, contributing to the advancement of science, and helping one’s familia may also positively influence participation.

However, many healthcare providers lack the knowledge necessary to talk to these patients about clinical trials.

This problem is partially due to alack of healthcare providers who can speak Spanish and relate to people who are of this background.

Another problem is time.

Healthcare providers often have limited time to spend with patients. And if they aren’t already equipped to effectively talk with patients about clinical trials, it’s easy to see how this topic slips through the cracks.

“A lot of [our people] have never heard of a clinical trial or been asked to participate in one,” Jason Resendez, Chief of Staff at Us Against Alzheimer’s, told UnidosUS.

Lack of Clinical Trial Access

For many, clinical trials may not be affordable due to travel costs, time off work for clinic visits, and lack of health insurance.

“An estimated 19% of US Latinos are uninsured, which is a huge barrier to enrollment,” said Dr. Amelie Ramirez, director of Salud America! at UT Health San Antonio.

Some clinical trials will compensate participants, and even offer childcare services to make participation more convenient, but these accommodations are not always available.

Certain comorbidities that are prevalent in the community, such as diabetes and obesity, can also exclude someone from participating in a clinical trial.

These exclusions exist because researchers are testing outcomes in a groups of people, or because having these comorbidities is a safety issue with the treatment being tested.

Fear and Distrust of Clinical Trials

Many fear that they will be “guinea pigs” for a new treatment if they participate in a clinical trial.

Distrust of medical professionals is also an issue. In history, clinical trials in which ethical standards were violated, such as the Tuskegee syphilis experiment.

While these feelings of fear and distrust are understandable, many people benefit from clinical trials.

Take Willie Heard, for example.

When he was diagnosed with cancer, he didn’t hesitate to consider a clinical trial – even though he had heard some of the negative stigma around trials.

Heard and his doctor had an informative discussion about a specific clinical trial in which everything was explained to him clearly.

He viewed participating in a clinical trial as an opportunity to help others, and his health improved.

Alma Lopez also had a positive experience participating in a clinical trial.

About 15 years ago, Lopez was diagnosed with breast cancer and began weighing her treatment options.

At first, she had doubts about whether to volunteer for a clinical trial. She thought it might take too much time, or cause side effects.

But after giving a clinical trial a chance, she is now cancer-free and healthy.

“If we don’t participate, it won’t help the doctors to understand our problems,” Lopez said.

Clinical Trials FAQ

There are many other concerns people have about participating in clinical trials.

Here are a few frequently asked questions and answers:

What steps are taken to keep volunteers safe? Researchers are required to ensure the safety of study participants and to tell potential participants about any known risks. There is never any obligation to participate in a study and you have the right to ask questions about the trial.

If I join a trial and change my mind, can I withdraw from the study? Clinical research participation is 100% voluntary. You may quit a study at any time, for any reason, without penalty.

Does the research team keep my identity private? Federal law ensures that researchers keep health and personal information private. Most studies only share results not linked to specific individuals. However, some studies may share data with other qualified researchers for use in their investigations. Talk to the study coordinator to find out what information is shared.

Does it cost money to join a clinical trial? Most clinical trials are free for participants. Some trials also offer participants a payment for participation, and may even pay for travel, lodging, and other expenses associated with participating in the study.

Building Confidence in Latinos to Participate in Clinical Trials

Government agencies, medical centers, and nonprofits are striving for research participation that reflects the US population.

Ramirez of Salud America! at UT Health San Antonio is one of those people helping tackle this issue. She’s creating new ways to encourage people to volunteer for cancer and Alzheimer’s clinical trials, with help from Genentech, a member of the Roche Group.

Ramirez is showcasing open clinical trials and uplifting the stories of clinical trial participants on her Salud America! website.

She’s also raising awareness through social media events and webinars.

“Volunteers who participate in clinical trials have the potential to help themselves, and contribute to the development of new treatments for people in the future,” said Dr. Amelie Ramirez, director of Salud America! and the Institute of Health Promote Research at UT Health San Antonio.

Those looking for opportunities based in San Antonio can search the Mays Cancer Center at UT Health San Antonio’s Find a Clinical Trial database to learn more about available clinical trials and eligibility requirements.

On a national level, visit clinicaltrials.gov to find a clinical trial near you.

Read more clinical trial stories!