Celebrating the 2023 Solomon Carter Fuller Day: Creating a Community of Health
The Wisconsin Alzheimer’s Disease Research Center team at the Sheraton Hotel on April 15, 2023
By Jonathan Gramling
For the past 13 years, the Wisconsin Alzheimer’s Disease Research Center has cultivated a community of health with Madison’s African American community to both promote health and ensure that African Americans are represented in Alzheimer’s research so that the treatments and someday possible cures will benefit the African American community. It has become a model for the nation.
“We get singled out from 33 centers in the U.S.,” said Dr. Carey Gleason who heads WI ADRC. “Most are in big cities where there is a greater proportion of racially-minoritized groups. And we’re succeeding and they aren’t. I won’t tell you who, but a major institution on the West Coast — a top notch research institution — just aren’t recruiting BIPOC individuals. I hear this over and over again. They’ll say, ‘We just can’t get people to come in.’ The question that always comes back to them is, ‘What are you doing to improve inclusion instead of putting back on the community member to say why they won’t come in? Why are you excluding them?’ That is what is happening. People want to be part of research. But they want to be respected too. They don’t want to feel like they are a commodity or a lab rat. They want to be a part of this process. They don’t want to feel studied. They want to feel partnered. And they want access to things that will help them and their family. You really have to have this shift in how you think.”
The correct answer to the question is, “What are you doing to empower African Americans in the research that affects African Americans?
“It’s about making sure that their voices are heard and included,” Gleason said. “Another inflection point in our process was the Black Leadership on Brain Health. It really took off when we added that group. Someone said, ‘We want to be truth tellers. We want to influence the science. We want to influence the way that the science is done.’ Again, a huge part of this is the community truth tellers and then the people in the university who respond to that. It’s a model that clearly works and it is really working on a human level in terms of responding to what people are saying. It can’t be abstract. It has to be clearly tied to conversations and concrete actions.”
And it has also meant involving African Americans in all phases of the research. Gleason cited the work of Fabu Carter Ph.D., LaTonya Floyd, and James Bester as “truth-tellers” that has allowed the work to evolve to become more relevant to the African American community.
“Having Black Ph.D.s working on the research is a plus,” Gleason said. “But it is something that the community said. ‘What are you doing to bring people who look like us into this work?’ For me personally, I want to be a placeholder until we have people from the community to lead the science. I feel this way with my Oneida partnerships as well as the African American partnerships. That doesn’t mean you can’t have white scientists. But having leadership who has that lived experience is hugely different. I can go home at the end of the day and not think about this. Therefore it is my duty to make sure that I bring all of my energy to work to try to move systems because I can go home and fully disengage and rest from it. My colleagues can’t do that. If they have been minoritized in their life, they are also minoritized at work. But they need to be leaders in this because they bring to the work that unique lens. It’s optional to look at this data without considering its impact on a community. It’s so valuable. I can’t tell you how many times it’s influenced my thought process and my approach to the data. We’d like to think that being a scientist or looking at data is something that is agnostic; it’s something that is black and white. You just understand it. But you always bring a lens to this work.”
At the Solomon Carter Fuller Day event, there were over 200 in attendance and Gleason announced that approximately 450 people have become engaged in the research. As new therapies and treatments are discovered, this high level of engagement will ensure that the African American community will receive the benefits.
“What is really interesting right now is that we’re on the cusp of really effective therapies,” Gleason said. “Before, we basically only treated the symptoms. Now we can intervene and alter the disease pathology. But we need to intervene early. You wouldn’t wait until a person is in the advance stages to intervene. You would want to go early. It’s true that groups that are less trustful of medical centers are less likely to get identified early. And this is true for basically all BIPOC communities, people who are minoritized because they are transgender or sexual or gender minority and rural populations. You can imagine. The health care system, unfortunately, is moving towards these bimodal distribution of access where you have people with a lot of resources getting the most access and people with low resources who are cut out of these options. The only way that you are going to get the therapy is if you are identified early enough. And who gets identified? Those people who are in these university clinics.”
With top to bottom engagement, the WI ADRC and the African American community, in partnership, are on the cusp of turning centuries of neglect around to reduce if not eliminate disparities in the incidence and treatment of Alzheimer’s disease. This will pay off for generations to come.