Researchers expand efforts to seek out persons with HIV/AIDS who are not taking medication and not engaged in care

July 17, 2014
NYU research on persons w/ HIV/AIDS not taking medication and not engaged in care

Regular attendance at HIV primary care visits and high adherence to antiretroviral therapy (ART) are vital for people living with HIV/AIDS (PLHA), as these health behaviors lead to lowered rates of morbidity and mortality, increased quality of life, and reducing the risk of HIV transmission to others. However, a large proportion of PLHA in the United States are not sufficiently engaged in care and not taking ART when it is medically necessary.

A new study, "HIV-infected individuals who delay, decline, or discontinue : Comparing clinic- and peer-recruited cohorts," published in the journal, Frontiers in Public Health, July 2014, describes factors believed to contribute to these critical public health issues, with a focus on African American and Latino/Hispanic PLHAs, the racial/ethnic groups most affected by HIV/AIDS.

Addressing these inter-related problems is a high priority, particularly for African Americans and Latino/Hispanic PLHAs, who tend to have worse health outcomes than their White peers. Research partners at New York University College of Nursing (NYUCN), the Peter Kruger Clinic at Mount Sinai Beth Israel Medical Center, and The Spencer Cox Center at St. Luke's-Roosevelt Hospital Center set out to understand how to locate and engage this vulnerable, and largely hidden, population.

"We found that African Americans and Latinos with HIV show great fear of antiretroviral therapy, particularly fear of side effects and the possibility that taking medication will reveal their HIV status to others, leading to stigma. They also report high levels of distrust of medications and the medical system. We know that these attitudes and feelings are partly grounded in the history of past abuses of racial and ethnic minority groups in medical research, by the medical establishment, and even, in some cases, larger society. These historical events appear to resonate with present-day exclusion, discrimination and structural racism to create barriers to antiretroviral therapy and HIV care," said lead author Marya Gwadz, PhD, a senior research scientist at NYUCN.

"On the other hand, African American and Latino individuals with HIV see the tremendous benefits that their peers gain from HIV care and antiretroviral therapy, and they, of course, want to thrive, stay out of the hospital, and live long, healthy lives. Our question as researchers is how to break that deadlock. How can we address fears and negative health beliefs and help patients make the best decisions for themselves with respect to HIV care and antiretroviral therapy?" said Elizabeth Applegate, MPH, the study's coordinator at NYUCN.

The researchers initially concentrated their recruitment efforts at hospital-based HIV specialty clinics. Yet they quickly found that the majority of PLHA in those settings were, in fact, taking ART, highlighting the success of these clinics in meeting that critical medical need. In response to this finding, the researchers implemented a peer-driven sampling method where contact is initiated by an acquaintance in the community or rather than by a physician or clinic. Based on the rapid and substantial number of responses to peer-recruitment, the researchers believe that large numbers of PLHA not in care and not on ART are socially networked with each other, supporting the promise of such engagement efforts for this largely hidden group.

"The results of the study suggest that PLHA who are not ready to initiate ART avoid formal clinic settings, such as those in hospitals, and those who are not well engaged in care are less likely to gain access to ART," said Dr. Gwadz. "We have to address the problems of poor engagement in care and delayed initiation of ART simultaneously."

The researchers compared the two groups on structural, social, and individual barriers to taking ART and attending HIV care, demographic and health characteristics, as well as their desire to begin or resume ART. PLHA who were not embedded in hospital clinics had poorer general health indicators and were further along in the course of their HIV disease compared to those recruited through the clinics. Importantly, the researchers found that PLHA who discontinued ART at some point did not report difficulties obtaining ART or refilling prescriptions but were unable to maintain the regimens due to contextual factors related to poverty, substance use, and a low level of initial emotional and cognitive readiness to adhere to the regimen of taking ART every day.

"Yet to achieve the goals of the National HIV/AIDS Strategy (NHAS), PLHA must attend regular health care appointments, initiate ART in a timely fashion, and remain on ART with high adherence through their lives," said Dr. Nadim Salomon, a Study Co-Investigator at Mount Sinai Beth Israel Medical Center.

This study furthers efforts to improve engagement along the HIV continuum of care by gaining a greater understanding of this highly vulnerable population of PLHA and informs the development of effective engagement and intervention techniques geared towards this substantial and vulnerable population.

"Future work is needed to articulate a more detailed HIV continuum of care with a focus on intermediate steps between linkage to care, engagement in care, ART initiation, and ART continuation with high adherence, and devise intervention strategies for improving outcomes along this more detailed care continuum," noted Dr. Hannah Wolfe, a Study Co-Investigator formerly at Mount Sinai St. Luke's-Roosevelt Hospital Center.

"We focus specifically on African American and Latino PLHA because barriers to ART and HIV care tend to vary across racial/ethnic groups. Understanding how barriers work for a certain group allows us to create interventions that are culturally targeted to the most relevant factors that affect them, which then increases how much participants engage with and benefit from the intervention," concluded Dr. Gwadz.

In process now is the field test of one such behavioral intervention strategy developed by this team which involves a multi-component intervention that includes video-based sessions that use a Motivational Interviewing approach, support groups led by "successful" peers who are engaged in care and benefiting from ART, and patient navigation to link participants to ancillary services to reduce depression and substance use problems, which often impede health for this population.

Explore further: Researchers tackle racial/ethnic disparities in HIV medical studies

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