Hispanics left out of medical trials
Promising findings bypass large portion of population
Two decades ago, Luis Antonio Cabrera received devastating news: He probably had only three months to live.
The Puerto Rican truck driver, then 50, had attributed his growing leg pain to spending so many hours on the road. The real culprit was a malignant tumor in his left kidney that was pressing on nerves from his lower spine.
His initial treatment involved removing the organ, a complex surgery that by itself proved insufficient as the cancerous cells had already spread to his lungs. His primary care physician in Puerto Rico contacted doctors at the National Institutes of Health in Bethesda, Md., and enrolled Cabrera in a medical study to test an innovative therapy: transplanting blood stem cells to destroy the cancer cells.
Today, at 70, Cabrera, a father of five and grandparent who moved to West Virginia with his wife to be closer to the NIH, feels strong and healthy. “I come to do tests every six months — I’m like a patient at large,” he said.
Cabrera is one of a relatively small number of Hispanics who participate in clinical trials. “Only less than 8% of enrollees are Hispanic, even though Hispanics comprise 17% of the population,” said Eliseo Pérez- Stable, director of the NIH’s National Institute on Minority Health and Health Disparities.
That means not only do Hispanics have less access to experimental, cutting-edge treatments, but researchers have less data on how a drug works in that population. Studies have shown that different ethnic groups might respond differently to treatments. The lack of patients from minority groups is an endemic problem in clinical trials; minorities typically are represented at a very low rate.
“Studies should represent the demographics of the country,” said Jonca Bull, an assistant commissioner on minority health at the Food and Drug Administration. “We need to close that gap, so we can better understand how a particular drug or therapy works in different communities.”
There are many reasons Latinos do not enroll in these studies, Perez-Stable said: lack of information, disparities in access to health care and not being fluent in English are main factors. Otis Brawley, chief medical officer with the American Cancer Society (ACS), said Latino families are open to participating in clinical trials, especially to help treat a sick son or daughter, but they need advice from a doctor to navigate the process.
In March, the FDA launched a campaign to educate Hispanics about medical studies. “Primary care physicians have to be the champions. … In addition, the community health centers can help, because they are places of care that people trust,” Bull said.
As of July 5, there were 94,545 clinical trials in the USA, according to the NIH’s official website, clinicaltrials.gov. As in Cabrera’s case, the primary physician usually helps a patient find a medical study, although the Internet has meant a growing number of patients discover trials themselves online.
To participate, the person must meet the researchers’ criteria for eligibility: age, gender or condition. Often, the center conducting the study covers related costs of drugs, treatments and tests.
For Brenda Aldana, receiving care at Holy Cross Hospital in Silver Spring, Md., made all the difference.
Aldana, 34, arrived in the USA from Zacatecoluca, El Salvador, nine years ago. During her first year in the USA, she felt tired, and her hair began to fall out.
She had a pulmonary embolism. Within two weeks of tests, she was diagnosed with lupus, a debilitating chronic condition with a high incidence among Latinas.
“At Holy Cross, the doctors told me that they were going to help me get into a medical program for a medication to treat arthritis [caused by her lupus],” said Aldana, who has three children, ages 17, 6 and 5.
Aldana travels from Olney, Md., to the NIH Clinical Center once a month to receive intravenous medication.
“Hispanics receive less quality medical care, so it’s important for them to be more involved in clinical trials,” Brawley said, noting that enrolling in a clinical trial gives patients access to a highquality physician they might not otherwise see.
The American Cancer Society has an information service to help patients find clinical trials that match their medical condition. This service is available in Spanish.
John Vasquez, 21, of San Antonio needed only Internet access and a cellphone to find the medical study that could change his life.
Aplastic anemia, a potentially deadly rare blood disorder, destroys his red and white cells and platelets, which aid the body’s clotting mechanism.
In a Facebook group for people with severe blood conditions, he was advised to contact the NIH, which sent him a kit for blood tests.
He was eligible to participate in a medical study, which opened the gates to an innovative transplant. He is scheduled for a bone marrow transplant Aug. 1. His donor: his 14-year-old brother.