“This labor cannot just be on the backs of Black, brown and indigenous people. It needs to be shared by everybody, because this is our shared challenge.” –Jason Resendez
Black Americans are twice as likely to develop Alzheimer’s compared to non-hispanic whites. Latinos’ Alzheimer’s risk is about one and a half times higher than non-hispanic whites. And it is known that Black and brown Americans are more exposed to dementia risk factors than white Americans. Yet, looking at the more than 100 drug trials underway and the billions of dollars worth of ongoing research studies globally, a disconnect becomes clear: Study participants are overwhelmingly white.
LatinosAgainstAlzheimer’s coalition head Jason Resendez, who was recently appointed executive director of UsAgainstAlzheimer’s new Center for Brain Health Equity, which will help expand access to Alzheimer’s care to women and communities of color. Being Patient spoke to Resendez about why people of color are still underrepresented in Alzheimer’s studies — and what can be done to diversify research.
Geographic Distribution of Resources
“In the coming decades, the Alzheimer’s patient population will reach 15 million individuals, and by 2030, nearly 40 percent of that population will be Black and brown,” Resendez told Being Patient. “So, there is a huge need for this research to be diverse.”
But for minority communities, Resendez said, access to the places that conduct Alzheimer’s research is disproportionately limited.
“What we found is in states like Texas, where we see the highest rates of Alzheimer’s among Latino Americans, there are zero federally funded Alzheimer’s Disease Research Centers (ADRCs),” he said.
“That goes to show that there’s no access. I grew up in a county called Jim Wells, which has one of the highest rates of Alzheimer’s among Latinos in the U.S. I would have to travel to another state to access a federally funded ADRC.”
Plus, Resendez added, many of these trials are taking place in academic medical centers that are often “ivory tower institutions who are serving their immediate community, which tend to be higher-resourced individuals who are predominantly white.”
“There isn’t a lot of work that’s happening to build infrastructure outside of these institutions,” he said.
Accordingly, he said the Center for Brain Health Equity — which recently received a $1.5 million grant from the Centers for Disease Control and Prevention — will focus on developing effective messaging strategies to help build brain health infrastructure beyond the academic medical center, and investing in community-based organizations such as Black churches and religious groups.
The Center for Brain Health Equity will also leverage data to map the impact of dementia at the county and zip-code levels to better understand the inequities of brain health in communities of color.
Unequal Opportunity Cost
Even if federal funding supports Alzheimer’s research sites in areas with large communities of color, another barrier to diversify participants in research studies is the cost.
“The cost of participating in research for a white woman in her seventies is a lot different than for a Latino in their sixties,” he said. “We’re talking about issues related to childcare: Latinos are more likely to live in intergenerational households, so there are issues related to transportation, balancing work and participating in research, etcetera. So cost becomes a really key issue as well.”
A Lack of Trust in Biomedical Research
According to Resendez, bio-medical research enterprise in the U.S. has a legacy of exploiting minorities, and mistrust in research remains among Black and brown communities.
“From Tuskegee to the army testing mustard gas on Puerto Ricans without their consent, so there’s a long history of the research community exploiting under-resourced people of color,” Resendez said. “That has created a lot of mistrust, and we have to address that mistrust.”
One obstacle to building trust in clinical trials, he said, are consent forms.
“You have to gain consent from participants so that you are protecting their rights: They understand their rights, they understand the risks,” he explained, “but some of these consent processes are 25 pages of scientific jargon. Some of them are not really at the literacy level of the community.”
“We can do a better job, as a research enterprise, to streamline the consent process, and make it more relatable.”
Lack of Effective Outreach
Resendez said the disproportionate lack of research presence and funding in the most needed communities, disproportionate cost to people of color to participate and mistrust among communities of color are three key reasons why we see that underrepresentation. He adds to that one more factor: researchers’ lack of effort to address these barriers and diversify their studies.
“The last thing is asking — really asking — people of color to participate in your research. Asking minority serving providers to be a part of the research process. Again, it goes back to infrastructure,” Resendez said.
“There needs to be better ways of connecting community-based providers — family practices, nurses, primary care practices — into the research system because those are the folks that are seeing more diverse clients and patients [than the academic institutions].”
“No one is holding institutions accountable for these low levels of representation of people of color in research. If there is no accountability, if there are no consequences for continuing business as usual with the lack of diversity, then it’s harder to change the status quo. It really takes having a commitment to wanting to do better science and being more ethical.”
This lack of accountability, he said, extends upwards to the federal and industry level.
Earning Back Trust
Resendez said it is not a lost cause, but to add accountability and earn back trust, he believes the industry needs to invest in communities beyond their research trials.
“Given the way that Alzheimer’s research is conducted by academic medical institutions that have a lot of resources, we need to bring those resources into communities to serve those communities,” he said. “Not just to recruit for a single trial, but also to improve community health. How can we look beyond specific trials to ensure that communities are supported?”
According to Resendez, there are examples of this model already in play at the University of Kansas and at the Massachusetts General Hospital, which he said engages in community projects beyond recruiting.
“It’s this dedication to the long-term health of a community that is really critical to building trust over generations. Right now, the way research happens, it’s trial by trial. It’s very short-term. In order to develop long lasting trust, we need a more comprehensive approach.”
New funding mechanisms, hiring diverse staff reflective of the communities being served, investing in diverse employees and ensuring there are community representatives, including local patients and caregivers on community advising boards, should all be in order if diversity in clinical research is to improve, he said.
Change will be slow to come without top-level buy-in, he said: “At the end of the day, I don’t think researchers will make changes at that scale unless there’s federal-level change and a system for accountability.” As the epidemic of Alzheimer’s grows, he hopes leaders recognize the need and act soon.
“I need more people to care about health equity that don’t look like me. That’s the only way we’re going to address this issue in a sustainable, long-term way,” Resendez said. “This labor cannot just be on the backs of the community, on the backs of Black, brown and indigenous people. It needs to be shared by everybody, because this is our shared challenge.”
Additional reporting by Hanna Nelson