GAP-Net site El Faro Health & Therapeutics was featured in the Houston Chronicle.
The disease took Noemi Fleming’s elderly mother slowly, the first hints in repeated anecdotes or phrases. Then misplaced keys and bills. Then, Fleming caught her mother walking outside in the middle of the night, looking for the newspaper.
“Mama, it’s 1 o’clock in the morning,” Fleming would tell her. “The newspaper doesn’t get here until 8.”
Fleming’s mother died at 91 in their hometown of Rio Grande City after a two-decade battle with Alzheimer’s, a brain disorder that slowly destroys memory and thinking skills. The family’s story is a familiar one in Starr County, a mostly rural, heavily Hispanic county of about 65,000 on the Texas-Mexico border, where about 26 percent of Medicare beneficiaries have been diagnosed with Alzheimer’s and related dementias. That rate is the second highest among all U.S. counties, according to Medicare data.
The Starr County figures underline a recent push in the Rio Grande Valley to better understand how and why the disease disproportionately affects Hispanics, who along with Black people are traditionally underrepresented in Alzheimer’s research. The county’s first private clinical research site, El Faro Health and Therapeutics Center, recently opened in Rio Grande City, and federal funds were awarded last month to the University of Texas Rio Grande Valley to investigate a wide spectrum of underlying causes.
The efforts are still in the early stages, but eventually, the researchers hope to identify ways to diagnose and treat the disease more effectively.
“One of the problems, because there’s no real cure, is that a lot of the focus has just been trying to prepare families for what lies ahead, and making sure families have things in order,” said Dr. James Falcon, the primary investigator at El Faro.
‘Profound effort’
Fleming, 69, jumped at the opportunity to join the first Alzheimer’s study at El Faro.
The research would help develop inexpensive tests to detect amyloid plaques, or sticky clumps of protein that build up around brain cells and disrupt brain activity.
In addition to watching her mother’s decline, Fleming had worked as a nurse for more than 30 years at Starr County Memorial Hospital. She understood the value of learning her diagnosis early and potentially helping others do the same. And she could easily drive to the three required appointments.
“I’m glad they did it in Starr County,” Fleming said. “Because (usually) when it comes to clinical trials, you’d probably have to go to a larger city.”
Studies from the National Institutes of Health have linked underrepresentation to the lack of research efforts within minority communities. Other barriers include a mistrust of the predominantly white research establishment and inadequate education about the purpose of the research. Studies also cite medical staffing that does not represent participants’ culture, and eligibility criteria that disproportionately excludes minorities.
The El Faro clinic was created as an “antidote” to those issues, said John Dwyer, president of the Global Alzheimer’s Platform Foundation, an advocacy group that opened the clinic in partnership with James Falcon and his father, Dr. Antonio Falcon. The elder Falcon, a longtime family practitioner, grew up in Rio Grande City.
“There is an appropriate and profound effort toward making sure that all clinical trials represent the population more broadly afflicted with disease,” said Dwyer, pointing to one common estimate: Black people are twice as likely to be diagnosed with Alzheimer’s compared with white people, and Hispanics are 1.5 times as likely.
Dwyer said the study is still in the recruiting phase. The group is aiming for at least 20 percent of participants to be either Black or Hispanic.
When Fleming enrolled in the El Faro study, she was not surprised to learn her community was disproportionately affected by Alzheimer’s. She frequently saw patients with the disease in the hospital. But she always wondered why it affected some people and not others.
At El Faro, a series of tests revealed that she faced a low risk of Alzheimer’s. Her mother’s siblings did not have Alzheimer’s, yet Fleming remembers at least one of her mother’s relatives hospitalized with dementia — a general term for a loss of thinking abilities severe enough to affect daily life.
New research may lead to possible answers.
A large-scale study published April 4 by the UK Dementia Research Institute found 42 genes that can serve as pathways for Alzheimer’s development, providing compelling evidence that inflammation and the immune system play a role in the disease.
“Lifestyle factors such as smoking, exercise and diet influence our development of Alzheimer’s, and acting to address these now is a positive way of reducing risk ourselves,” according to a statement from study co-author Julie Williams, center director at the UK Dementia Research Institute at Cardiff University. “However, 60 to 80 percent of disease risk is based on our genetics and therefore we must continue to seek out the biological causes and develop much-needed treatments for the millions of people affected worldwide.”
Dr. Gladys Maestre, director of the Rio Grande Valley Alzheimer’s Disease Resource Center for Minority Aging Research, has several theories for the high prevalence of Alzheimer’s in Starr County and the surrounding area.
Social isolation or chronic stress related to a heavy presence of border patrol might contribute, she said. It also could be related to the high number of uninsured residents — about 35 percent in Starr County alone — coupled with the low number of nonprofit health centers, she said.
Maestre, who also serves as a professor of neuroscience and human genetics at the University of Texas Rio Grande Valley, is working toward gathering 2,500 seniors with Alzheimer’s to participate in a study funded by a $2.9 million National Institute on Aging grant.
She will investigate a wide range of risk factors through in-person interviews and special technology, such as facial recognition software and memory tests using virtual reality. She is starting her work in Brownsville.
“Hopefully we can learn from that, and we can get to Zapata and to Starr counties,” she said.
‘Huge door that opened’
For Antonio Falcon, clearer answers cannot come soon enough.
After more than four decades caring for patients in the city where he grew up, he became used to telling Alzheimer’s patients and their families the difficult truth: He did not have any medications that treated the disease itself, only those that can prolong comfort and independence. Deterioration was inevitable.
So when the Food and Drug Administration last year granted accelerated approval of Aduhelm, a monoclonal antibody drug designed to slow the onset of the disease by targeting amyloid plaques, he was ecstatic. It was the first drug approved to treat Alzheimer’s in 18 years, and the only one designed to treat the underlying cause.
“It was a huge door that opened for us,” he said. “All of a sudden we were at the forefront of possibly getting medications for our patients.”
Doubt quickly surrounded the drug. Questions lingered about its benefits, and some patients reported serious brain swelling or bleeding. Public health officials strongly advised to limit its use.
The FDA is investigating its own approval of the drug. And last week, the Centers for Medicare and Medicaid Services dramatically limited coverage of Aduhelm, all but ensuring Alzheimer’s patients in Starr County would not access the medication, which is estimated to cost around $28,000 for a year of treatment.
The decision was applauded by Alzheimer’s experts who continue to urge caution around its use. Both Antonio and James Falcon remain disappointed the agency did not open up access to more vulnerable groups.
But they are hopeful for three new monoclonal antibodies therapies currently in clinical trials. In the immediate future, they are focused on drawing more interest to the El Faro study.
“People are developing (Alzheimer’s-related dementia) as we speak, and it’s not going to stop,” Antonio Falcon said. “That’s a one way street for them at this point.”
Originally posted by the Houston Chronicle on April 18, 2022.