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Opinion
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Guest Column
To beat Alzheimer’s, Tampa seniors from underserved communities can get involved in clinical trials | Column
How can study findings apply to our community when the volunteers pool doesn’t represent our community’s demographics?
Black Americans and Latinos are underrepresented in trials for diagnosing and treating Alzheimer's disease.
Black Americans and Latinos are underrepresented in trials for diagnosing and treating Alzheimer's disease.
Published Oct. 1

We need an accessible means of diagnosing Alzheimer’s disease and research that demonstrates that new therapies and diagnostic tools work for all people. As a neurological researcher and an Alzheimer’s patient advocate here in Tampa, I work on the front lines of the Alzheimer’s public health crisis.

The only way forward is to focus our efforts on clinical trials and research. For that research to be effective, we must enroll a diverse group of patients so that new discoveries are relevant to all people.

Dr. Susan J. Steen
Dr. Susan J. Steen [ Provided ]

One of the biggest challenges we face in medical research is in clinical trial recruitment. Not enough people are aware of trials they might benefit from, and many primary care doctors don’t point their patients in the direction of studies for which they are eligible. The Alzheimer’s disease field is suffering from this problem at heightened levels. Upwards of 90 percent of research studies are delayed due to slow recruitment. Further, 99 percent of potential volunteers for Alzheimer’s studies are never referred to or never consider participating in a clinical trial.

Recruiting volunteers from Black and Latino communities has proven to be even more of a challenge. Black people are as much as three times more likely, and Latinos are 1.5 times more likely to develop Alzheimer’s in their lifetimes than whites. Yet, these populations traditionally account for only 5 percent of clinical trial volunteers in Alzheimer’s-related research. For a city like Tampa, in which 24 percent of residents are Black and 26 percent are Latino, these statistics are alarming. How can study findings apply to our community when the volunteer pool doesn’t represent our community’s demographics?

The good news is that we are making progress: Right here in Tampa we are addressing the racial disparities in Alzheimer’s research and working to ensure that future study findings are applicable to everyone in our community.

At Axiom Clinical Research of Florida, we are now enrolling volunteers in the Global Alzheimer’s Platform Foundation’s (GAP) Bio-Hermes Study, which sets out to determine which cost-effective Alzheimer’s disease biomarker test (or combination of tests) best foretells the presence of Alzheimer’s. These biomarker tests include blood tests, speech analysis, a gait test and more. And, using the results of Bio-Hermes, providers in community settings will be able to screen for the signs of Alzheimer’s disease, make referrals to brain specialists and even diagnose the disease directly — something that is currently impossible without an expensive PET scan or an invasive lumbar puncture.

People over age 60 with concerns about their memory, a family history of Alzheimer’s, or a diagnosis of early Alzheimer’s are especially invited to learn more. We also are enrolling healthy older people.

Bio-Hermes is one of the first Alzheimer’s studies to prioritize diversity in recruitment — we have committed to enrolling at least 20 percent Black and Latino study participants. By committing to enroll a demographic that is more representative of the population living with Alzheimer’s, we are working to ensure that future Alzheimer’s assessment tools are sensitive and specific to everyone.

Bio-Hermes study participants will receive a study-related PET scan — the very expensive brain imaging test for an Alzheimer’s diagnosis which is often not covered by insurance — at no cost which will provide them with information about their brain health. This is especially valuable for people in Black and Latino communities in Tampa who may be less likely than those in white communities to receive timely Alzheimer’s diagnoses.

Volunteers for the Bio-Hermes study must be between 60 and 85 years old and have someone who can participate with them as a study partner. The study includes two visits with Axiom staff and one visit to a local imaging site over the course of three months, with the potential for a follow-up phone call (if needed). Free transportation will also be offered to all study participants.

In Bio-Hermes, we are on the right path to ensuring that all clinical trials enroll volunteers from all walks of life. However, this is not something that we can do without the help of our community. We will fall short if people from underserved communities don’t join us. The only way to find a cure for Alzheimer’s and improve the quality of Tampa residents is for our seniors to get involved in medical research. Join Bio-Hermes, and you can play a vital role in beating this disease once and for all.

Dr. Susan J. Steen, a neurologist in Tampa and a graduate of the University of Florida College of Medicine, is particularly interested in dementia-related diseases and memory loss. She is president of Axiom Clinical Research of Florida and oversees a variety of studies of medicines in development for neurologic conditions, especially Alzheimer’s disease. She is currently leading the Bio-Hermes Study at Axiom. Those interested in learning more about the Bio-Hermes study and volunteering for clinical studies should call (813) 353-9613.