Millions of Americans are now living with HIV with the aid of a multitude of antiretroviral drugs. Fordham student Elizabeth Breen is one of many researchers working to make sure they get the neurological attention they need.

This fall, the Fordham College at Lincoln Center senior learned that the paper “Medical Outcomes Study HIV Health Survey (MOS-HIV) Subscales and Neurocognition Among Latinx People with HIV” has been accepted for presentation at the International Neuropsychological Society’s annual meeting, which takes place in February virtually.

The paper details the results of an analysis that Breen and nine others conducted of surveys on medical outcomes that 105 people with HIV took in 2014.

The group was 74% Latinx and had an average age of 46. The goal was to get a better understanding of what aspects of their mental health had the greatest effect on their neurological health. As part of the survey, they were asked to perform tasks such as listening to a list of words and then repeating them back to an interviewer or thinking of as many words as they could that started with the letter T in 60 seconds.

“Everyone that we work with does well in some areas and struggles in others. That’s just how our brains work. But overall, once we collect that data, we get a pretty good estimate of how good people’s psychological capabilities are at the time of testing,” she said.

“We really haven’t had the opportunity to investigate how a chronic condition like HIV could affect people as they age. Maybe it’s not even the HIV. Maybe it’s the medication they’re taking.”

Findings

The survey found that the Latinx participants had better physical health than the non-Latinx white participants, and there was a direct correlation between their neurocognitive abilities and their mental health. More specifically, when mental health was broken down into different categories, the categories of energy and social functioning were found to correlate the most with healthy neurocognition.

“These are the specific areas in which if you’re doing really well in, then you’re probably going to be doing better in your neurocognition as well,” she said.

Knowing that these areas are important to this demographic is important because like Black patients, the Latinx population has historically received treatment inferior to their non-Latinx white peers. Findings such as these can help researchers better tailor future treatments that are conscious of those differences.

“Brain health specifically has huge disparities in the rate of diagnosis, so it’s an important factor to be aware of when you have dementia or cognitive decline among these culturally diverse populations,” she said.

The research is being conducted under the supervision of Monica Rivera-Mindt, Ph.D., professor of psychology.

Although the pandemic interrupted the study and halted the collection of in-person survey data, Breen, who is majoring in neuroscience and theology and is on track to earn a master’s in ethics, has been able to return to research.

Under Rivera-Mindt’s supervision, researchers such as Breen are collecting similar data connected to neurological health from a wider set of participants. Black, white, and Latinx participants are being interviewed, as are patients both with and without HIV. Breen conducts interviews over the phone; for in-person aspects of the survey, participants visit Mount Sinai Hospital. It’s that personal interaction that drew Breen to the research.

“I’m a huge proponent of equitable health care in general and given the disparities that we’re seeing in the recent diagnoses among people of color for Alzheimer’s and other dementias, it’s just starting,” she said, adding that her work in this area has been very rewarding.

“To be able to get involved in clinical neuropsychology research, and to be able to meet new people and build these relationships has been so fulfilling for me.”

“It’s clear to see that there is very influential work being done right here at Fordham on COVID-19, from the beginning of the pandemic and following to its peak and now as we’re starting to enter the vaccination stage,” said Elizabeth Breen, a rising senior and integrative neuroscience student at Fordham College at Lincoln Center who moderated the research discussion.  

In an hour-long conversation, three Fordham faculty members—Monica Rivera-Mindt, Ph.D., professor of psychology and co-director of Fordham’s clinical neuropsychology program; Berish Y. Rubin, Ph.D., professor of biological sciences; and Troy Tassier, Ph.D., associate professor of economics—discussed their research over the past 14 months. 

Rivera-Mindt spoke about her research on brain health disparities in the U.S., especially during the pandemic. Rubin presented his ongoing research with colleague Sylvia Anderson, Ph.D., who co-leads their Laboratory for Familial Dysautonomia Research, on developing a biological method that reduces coronavirus infections in lung cells. Tassier spoke about his research featured in ABC News this past February on how geolocation data in our smartphones has revealed nationwide economic trends during the pandemic; his work was also featured in a Fordham News podcast from December 2020. 

“We need to keep this in our rearview mirror and know that we can learn from this experience to ensure that this doesn’t happen at the same scale to us again,” Rubin said. 

The full recording of the event can be seen here.

“Traditionally, researchers are trained to use a revolving door model where they go into vulnerable communities like conquistadors, they get the gold, and because we’re scientists the gold is data, put it in a sack over their shoulder and then go back to the ivory tower,” said Rivera-Mindt. “The communities never benefit from that work. There’s no positive feedback loop.”

The grant from Genentech, a subsidiary of the biotech giant Roche Group, is for a two-year study. She will be working with scientists who specialize in Alzheimer’s disease and health disparities research. The goal is to work with the community to develop a culturally-tailored digital platform and social media campaign to increase research participation and engagement of Black adults.

Though her research has shifted to cognitive aging, for years Rivera-Mindt’s academic career was dedicated to investigating the effects of HIV, substance use, and substance use treatment on the brain—particularly among Latinx and Afro-Caribbean populations. She published papers on how certain diverse ethnic groups are often researched as one whole, such as the Latinx population. This is problematic, she said, because being Mexican, for example, is a very different experience than being Puerto Rican, and even regions within Mexico are extremely diverse.

In 2010, The Clinical Neuropsychologist published her paper, “Increasing Culturally Competent Neuropsychological Services for Ethnic Minority Populations.” The paper represented a “call to action” for a discipline that she said was ill-equipped to handle the increasing diversity of the nation. The paper has been frequently cited for its recommendations to neuropsychologists on how to tailor their work in research, clinical services, and infrastructure for the communities they serve.

This January, the same journal published an article Rivera-Mindt wrote titled “White Privilege in Neuropsychology and Norms for Spanish Speakers of the US-Mexico Border Region” that reexamined the problem with a particular focus on the border region, though many of the themes were universal and drew from her earlier work, she said. The pandemic exposed stubborn issues of underrepresentation that she argued may be exacerbated by “white privilege and a lack of appropriate normative data.”

“There have been some gains from 2010 to 2021, and it’s still the case that a neuroscience and neuropsychology workforce is not well equipped to handle the country’s diversity and we continue to grapple with how best to prepare the workforce,” she said.

Over time, her research goals have changed with community needs. Such is the case with Alzheimer’s and dementia research, where the community has prompted Rivera-Mindt’s current focus. She noted that while the Black population is significantly overrepresented in terms of risk, they’re woefully underrepresented in the research—particularly Black men.

Rivera-Mindt said the community-based approach requires researchers to become involved in the communities they are studying. Over the years, this has meant that she has not only studied the Harlem and East Harlem communities, but she’s participated in neighborhood events.

“I took my kids to community meetings, I went to monthly meetings of the Harlem Community and Academic Partnership and the Manhattan HIV Care Network,” she said. “I needed to earn trust. So, I kept my mouth shut and kept my ears and eyes open.”

Once she gained the trust of the community, she was able to offer her services and knowledge. She was soon giving lectures on the importance of brain health, and it was there that her work with the aging population began.

She noted that Latinx and Black individuals are up to three times more likely to develop Alzheimer’s or related dementia than white people. At the same time the same populations are aging at a faster rate, the ripple effects of which are staggering, she said.

“Or workforce capacity will be affected by the health care and caregiving that’s needed for these older adults, and that’s just one of many issues,” she said.

Today, she lives in Harlem and her children grew up going to public school there. She wears multiple hats at the community meetings now, as a community member, a parent, and as a researcher.

“It brought the work to such a deeper level. It has so much more meaning,” she said.

Rivera-Mindt said the pandemic has exposed the challenges of conducting community-based research. People who are most affected by Alzheimer’s and dementia, namely older adults, are frequently less tech-savvy and can no longer attend the community health meetings which have moved online. Rivera-Mindt has had to rethink ways to connect with her community partners. The Genentech grant money has allowed her to convene a Community-Science Partnership Board (CSPB) composed of community members and stakeholders at the start of the study, thereby involving the community from the beginning.  The members of the board will use a large-scale digital resource called the Brain Health Registry to help examine and track the effects of Alzheimer’s and dementia in the Black community.

“We’re starting out at the ground level, but we’re acutely aware of the digital divide and thinking deeply about how to address it by not necessarily focusing all of the digital engagement towards older adults, but instead reaching out to their children and their grandchildren and taking a multigenerational approach,” she said. “We could really make it a family affair and educate everybody about the importance of getting involved.”

The award is given annually to one APA member psychologist that is no more than ten years post doctoral degree, who has made a distinguished contribution to neuropsychology in research, scholarship, and clinical work.

Rivera Mindt is co-investigator of a study funded by the National Institute of Mental Health (NIMH) to gauge the cognitive functions in HIV-positive Latinos in New York who are on anti-retroviral therapies. The $1 million study will help identify cognitive and sociocultural barriers that may interfere with the ability of the cohort to adhere to their medication regimens.

As an award recipient, Rivera Mindt has been invited to present her research at the 119th Annual APA convention, to be held in Washington D.C. on Aug. 4 to 7.

Rivera Mindt teaches in the graduate program in clinical psychology and at the Mount Sinai School of Medicine. She has been a member of the Fordham faculty since 2002.

This is Rivera Mindt’s second national award; last October she received the 2010 Early Career Service Award from the National Academy of Neuropsychology. That award was given to her for her professional service, her service to the community, and her outstanding teaching/mentoring of her students.

Monica Rivera-Mindt, Ph.D., an associate professor of psychology, is doing just that as she works on a five-year study conducted at the Mount Sinai School of Medicine and funded by the National Institute of Mental Health.

The grant, which was awarded in 2007, involves recruiting 150 volunteers to take part in a pilot study of an intervention that is culturally tailored specifically toward Latinos. Rivera-Mindt said they’ve successfully recruited 110 volunteers, and hopes to hit the goal by February.

“Any time you engage in research with people, there are always bumps and surprises along the way, and my study is no exception in that regard,” she said. Recruitment was slow initially, and I had this desire to get involved in the community, but I didn’t know exactly how to approach the community in a meaningful way.”

Part of the challenge, she said, has been earning the trust of the community, so as to understand the needs of a disenfranchised population. Working with groups like Harlem Community Academic Partnership, the Manhattan HIV Care Network has helped.

“It’s not only about how my research can help them, but also how their perspective can inform my research. Because of their input, my research has evolved, and questions are emerging in ways that I didn’t expect and could not have known had I not been involved in the community,” she said.

“It turns out that broader social issues are also rally important to medication adherence in a way that I hadn’t thought about things like housing, and child care in order to go to the pharmacy or to see the doctor in order to get your medication.”

“Part of the population that I’m working with is somewhat transient, and sometimes they’re living with family or with friends, wherever, and they can’t disclose their HIV status, for issues of safety and other things, or being ostracized. So they hide their medications; they might not be able to take them into where they’re living.”

Rivera-Mindt is also working on a grant from the National Institute on Drug Abuse with a team at Albert Einstein College of Medicine examining the neurocognitive effects of bupenorphine (an opioid addiction therapy) among HIV-positive and HIV-negative opioid dependent adults.

Rivera-Mindt’s work has not gone unnoticed. When it meets for its annual conference in Vancouver on Oct. 13, The National Academy of Neuropsychology will present her with its 2010 Early Career Service Award, for her service to the profession, service to the community, and teaching, including supervision and mentoring. It’s the first national award she’s won for her work, and one she’s extremely grateful for.

“My research, teaching and supervision are all inter-connected. For me, the ultimate goal is to improve services and outcomes in terms of neuro-psychological functioning for all kinds of people, but especially for ethnically diverse, disenfranchised populations who tend to be underrepresented or under served,” she said. “So I feel this is part of that greater mission for me.”

Research conducted by a Fordham neuropsychologist shows that HIV may be affecting the cognitive deterioration of Latinos in New York City more severely than Latinos elsewhere.

Monica Rivera Mindt, Ph.D., assistant professor of psychology, is a co-investigator on an eight-year study, funded by the National Institute of Mental Health (NIMH), designed to gauge how HIV is affecting the long-term brain processes of Latinos on anti-retroviral drugs.

The sample of 1,556 HIV-positive patients from six locations across the nation has thus far produced some surprising results.
Initially, much of the HIV/AIDS research focused on the disease’s effect on patients’ immune function, despite the virus’ equally negative effect on their brain function, Rivera Mindt explained.

The advent of combined anti-retroviral therapies (CART) in the mid-1990s have significantly helped extend the lives of HIV-positive individuals. But according to the study, HIV’s effect on the brain is unchanged despite CART, and is becoming more noticeable thanks to patients’ longer lives.

“You can have HIV replicating in your brain uncontrollably even though you look perfectly healthy outside,” Rivera Mindt said.

Additionally, symptoms of cognitive deterioration, such as dementia, were more pronounced in New York Latinos.

“Of all HIV-positive populations across the country, Latinos in New York City appear to be the most cognitively impaired demographic in the whole consortium,” she said.

These results run counter to the encouraging outlook on the HIV/AIDS epidemic that has taken hold since the advent of CART. While the general public has stepped down from the panic that accompanied the discovery of the virus in the early 1980s, researchers fear that advances in HIV medications are being mistaken as a cure, when there remains much work to be done.

“When the anti-retroviral therapies improved, people started living longer,” Rivera Mindt said. “But you generally only get that outcome when you take your medications religiously.”

So why did Latinos from the New York City region fare worse than their counterparts in other areas, including Galveston, Texas and San Diego, Calif.?

Rivera Mindt said there are many possible explanations, including genetic differences between subpopulations and potential bias in the research process. However, she suspects that an even more plausible explanation is that there may be problems with how New York Latinos are taking their anti-retroviral medications.

Last October, Rivera Mindt received an almost $1 million grant from the NIMH to identify potential cognitive and sociocultural barriers that may interfere with the ability of HIV-positive Latinos in New York City to adhere to their medication regimens.

“We’re taking a look at cognitive factors, like problems with learning and memory,” she said. “We’re also looking at the socio-cultural factors, like acculturation, health beliefs and language barriers.”

Participants in Rivera Mindt’s study thus far have been recruited from Mount Sinai Hospital in Manhattan. The grant will allow her and her assistants to recruit from parts of Harlem and the surrounding area by collaborating with community organizations.

“I’m putting in sweat equity with the community by providing neuropsychological evaluations pro bono and working with the community on various initiatives,” she said. “Once we start getting results, I’ll communicate those results back to patients and their communities so they can benefit from their participation.”

Rivera Mindt said she initially became interested in investigating adherence by watching how her mother took routine antibiotics.

“She would try to ‘save’ them rather than take them as prescribed. That’s bad,” Rivera Mindt said. “So here we are talking about a population [of Latinos]that is having health problems because of HIV and might not have a lot of support—there are all kinds of challenges that might make it harder to adhere to meds regularly.

“Our preliminary research shows that HIV-positive Latinos are significantly less adherent compared to non-Hispanic whites,” she added.

So far, the failure to adhere to the regimens does not appear related to access to medication, since the study participants are often receiving the drugs from Mount Sinai. But that could change as the study ventures outside of the community.

Rivera Mindt is resolved to make a difference in a community that is growing by leaps and bounds.

“Here we have people disproportionately impacted by the HIV/AIDS epidemic, having worse outcomes once they get sick and nobody has really looked at why,” she said. “Latinos are the largest minority and they’re going to be 25 percent of the United States population by 2050. There are major public health implications for what is going on with this population.”

Rivera Mindt hasn’t found language to be a major factor impeding the adherence of anti-retroviral therapy within her patient population.

“It’s still early, but it’s looking like this population is highly acculturated and English language dominant,” she said of the study sample, which includes many American-born, Caribbean New Yorkers. “Part of the problem might be more of a health literacy issue. They may be having difficulties understanding prescriptions or how the medical system works.”

The larger part of Rivera Mindt’s research, she explained, “is dedicated to NeuroAIDS and reducing health disparities among Latinos to improve their long-term health and mental health outcomes.”

In the end, she would like to develop “culturally tailored interventions” that will bring Latino health statistics more in line with the general population. “My goal is for this work to ultimately reduce health disparities, as well as inform policy and interventions on a large scale. That’s my hope.”