For Sarah Franco, 49, a Hispanic resident of Kansas City, Kansas, COVID-19 vaccines are a blessing.
“Everything that is helpful to go through this pandemic should be welcome,” Franco said through a translator.
But while Franco plans to get vaccinated once it’s available to the general public, she says many people she knows are divided on the vaccine — and some are afraid.
To make sure the COVID-19 vaccine will work well for people in Latinx and other communities that have the highest risk of COVID-19 infection, Kansas City’s AstraZeneca vaccine trial is actively recruiting racially diverse volunteers.
But that effort is challenged by mistrust fueled partly from inaccurate information on social media and word-of-mouth, as well as the mistreatment of medical research participants from these communities in the past. In Kansas City, the principal investigators for the study are both Latinx, one with longstanding ties to the community.
“What we try to do is empower participants to make an informed decision, to overcome mistrust and to do what we believe is right for their community,” said Mario Castro, co-principal investigator of the Oxford-AstraZeneca vaccine trial in Kansas City.
While the COVID-19 vaccine made by Pfizer has received emergency approval from the FDA and is in stage one of administration in both Kansas and Missouri, the AstraZeneca vaccine has yet to receive emergency approval in the U.S. So far, it’s been approved for emergency use in the U.K., Argentina, India, and Mexico. It’s expected to roll out here in February, said Randall Williams, director of Missouri Department of Health and Senior Services.
The AstraZeneca vaccine trial in Kansas City hopes to get at least 20% Latinx and 25% adults over the age of 65 to participate, Castro said. With these numbers, it should be possible to know how effective the vaccine will be for these groups, he said.
Clinical trials have historically lacked diversity; the Food and Drug Administration only just published guidance encouraging diversity in clinical trials this year.
In June, before the trial started, the trial investigators started to involve local Kansas City community leaders, including Mariana Ramírez, director of the Juntos Center for Advancing Latino Health, which works to eliminate health disparities in underserved Latinx communities in Kansas, and Broderick Crawford, executive director of the NBC Community Development Corporation, which works to provide services to Wyandotte County residents.
The goal? For communities to get scientifically accurate information about the COVID-19 vaccine — and the trial — from people they trust. Castro said many people get misinformation about the COVID-19 vaccine from social media or word-of-mouth.
However, there are also historical reasons for why medically underserved populations distrust medical professionals and research in the U.S. When Black and indigenous communities participated in medical studies in the past, it was sometimes done unethically, like the Tuskegee syphilis study, where Black men with syphilis were studied without informed consent or treatment, or the Havasupai diabetes project, where an indigenous tribe agreed to provide blood samples for genetic testing related to diabetes, but instead their blood samples were used for research in areas they did not consent to.
“There is Tuskegee, there are other examples where they have been inappropriately asked to participate without adequate consent,” Castro said. “Where they have been misled by being told this is part of their treatment, when it is part of research. And unfortunately, that history has occurred in the U.S.”
This distrust is the greatest challenge in recruiting more diverse populations for the vaccine trial, Castro said.
In his own interactions with the potential volunteers, he wants to make sure they feel knowledgeable and comfortable with how the study works, including that not everyone receives the vaccine, and neither the study participants nor researchers know who has received the placebo. Also, that in this study, during a pandemic, everyone is learning as they go.
Another important step to building trust is gratitude.
“We always say to our volunteers, we really thank you, we thank you for your time, we thank you for contributing to helping us fight the pandemic,” Castro said. “Because without your contributions, we won’t know if this works in Hispanics, we won’t know if this works in African Americans. So we really need you to help us to know how this is going to be safe and effective in our communities.”
Giving back to the community
For Castro, his own background is a big motivator in his efforts to recruit trial participants from medically underserved communities.
Both Castro and Barbara Pahud, the other co-investigator of the AstraZeneca vaccine trial in Kansas City, are Latinx.
Castro immigrated to Kansas with his family from Cuba over 50 years ago. His family wasn’t able to bring anything with them from Cuba — even money. Others in his family’s community helped his parents to find jobs, learn English and become assimilated to the U.S.
“Being able to give a little bit back to that is very meaningful to me, because I appreciate when people were helping my parents out,” he said.
Castro said he also benefits from being bilingual, and that the ability to communicate with more patients is rewarding.
The pandemic has affected the Latinx community disproportionately. In Kansas, people who identified their ethnicity as Hispanic/Latino have had almost twice the COVID-19 case rate as people who have reported their ethnicity as not Hispanic/Latino. Nationwide, Latinx people are 2.7 times more likely to have died from COVID-19 than white people.
It’s devastating, Castro said.
“In our community, we are the frontline workers,” Castro said. “We are the ones in meatpacking plants, we are the ones in close quarters in the food industries, in cleaning industries, in all of these industries where we as a group are disadvantaged because we don’t have individual offices, and all of these different things that allow us to protect each other in the workplace.”
The AstraZeneca trial has a mobile van for recruiting vaccine participants and has visited meatpacking plants and other areas where there are frontline workers.
For now, vaccine distribution is still in its earliest stages.
“We still are going through some tough months now,” Castro said. “The exciting thing is, there is a light at the end of the tunnel.”
You can receive more information or register to volunteer for the trial through the COVID-19 Prevention network.