Financially strapped Latino immigrants participate time and again in clinical trials to earn money. The risks to their health are not always explained to them, and when something goes wrong, seeking justice can be agonizing.
Maria Elisa Rangel died after ingesting an experimental drug and her family claims researchers failed to warn her of the more serious risks. Blue Fronteraz lost her hair after enrolling in three consecutive clinical trials to multiply her income. And Roberto Lamelo suspects that the diarrhea he suffers from may be a consequence of having participated in medical trials for years to earn a living.
Salud de Alquiler, a five-month investigation by Telemundo News, found that clinics conducting healthy human trials, known as Phase 1 experiments, employ the same immigrants over and over again. In need of money, many ignore the rules, which provide for at least 30 days of detoxification between trials, and submit to multiple, serial experiments, jumping from clinic to clinic undetected.
These shenanigans not only risk individual health but also public health because, according to experts, they affect the data the FDA receives to approve or not a new treatment.
More than 14,000 private and academic clinics in the United States were recruiting volunteers for Phase 1 trials through March 2022, according to the National Library of Medicine, but experts estimate that about 60 are the most active in the country. Immigrants interviewed for this research confirmed that they regularly return to about ten of these clinics, in different cities in Florida, Texas, Kansas, Arizona, Wisconsin and Missouri, where the Hispanic population is already established or growing.
Participation in these trials does not require proof of legal status, so many volunteers are undocumented and do not have health insurance to back them up in case of injury or fatality.
Before beginning a trial, volunteers must sign informed consent, a document that details the risks of ingesting the drug under investigation, and agree to report any side effects. Some say they sometimes hide these reactions for fear of being withdrawn from the trials and not receiving full payment.
It is common for private clinics to recruit volunteers using “unethical” methods such as advertising compensation over risks, according to Dr. Olveen Carrasquillo, chief of General Medicine at the University of Miami. “The clinics want the participants and the participants want the money. So, that creates a system conducive to abuse.”
“We’ve traditionally had a hard time getting minorities to participate,” Carrasquillo explains, referring to the challenges in recruiting people from the Latino and black community in all phases of medical research. “If the reason [private clinics] are getting more Latinos into Phase 1 trials is because of the money, that’s not the right way to do research.”
Those who say they make a living participating in clinical trials do so in this phase of research, where they seek to know how toxic new drugs are, so they are more willing to ingest drugs that make them sick than to test drugs with the potential to cure them. The states with the most Latinos – Florida, California, Texas – are where most of these studies are conducted.
There is no national mechanism to force clinics to detect who took what, when and where, or to find out if participants violate the rules.