What Does Our Past Tell Us About Our Future? The Essential Role of Psychologists in Fighting HIV

Since the early days of the HIV/AIDS epidemic, psychologists have been essential in the response to HIV:

• They offered mental health support for people living with, or at risk for, HIV—as well as for their families and communities, and those who provide HIV medical care and social services.
• Psychologists developed programs to educate people about HIV and motivate behavior change to reduce risk.
• They counseled and supported those who were diagnosed, and also played important roles in working to eliminate the stigma that attaches to HIV/AIDS, sexual minority status, gender identity, substance use, and other characteristics associated with HIV infection.
• They conducted research that gave us an understanding of cognitive, behavioral, and social determinants of health that create health disparities.

They continue to do all of these things, and they play a vital role as the response to HIV/AIDS continues to evolve.

This year, the professional organization for psychologists, the American Psychological AssociationExit Disclaimer (APA), celebrated its 125th anniversary. The APA has been deeply involved in the response to HIV/AIDS in the United States:

• From 1996-2014, the Centers for Disease Control and Prevention (CDC) funded APA’s Behavioral and Social Science Volunteer (BSSV) Program. The program established a national network of more than 300 psychologists, sociologists, anthropologists, and public health experts who provided capacity-building technical assistance to improve the delivery and effectiveness of HIV prevention services to more than 700 organizations.
• And from 1991-2014, the Substance Abuse and Mental Health Services Administration (SAMHSA) funded APA’s HIV Office for Psychology Education (HOPE) Program, which trained more than 36,500 psychologists and allied mental health providers about HIV, substance use, and mental health.

Today, the organization continues its mission to address the ongoing toll of HIV on the mental and physical health of people living with HIV. You can view information about activities, events, and resources on the APA’s HIV webpageExit Disclaimer.

Dr. Arthur C. Evans, Jr.Exit Disclaimer, Ph.D., APA’s Chief Executive Officer, expressed his support for APA’s role in this work. He shared with me that he sees psychology’s role in this way:

Given the organization’s commitment and long track record of service to the HIV community, I was honored when APA asked me to be a discussant as part of the 125th Anniversary Talk, Past, Present and Future of HIV/AIDS Science and Practice in Psychology. Under the skillful direction of co-chairs Dr. Fayth Parks and Dr. Sherry Wang, the panelists addressed a number of important topics:

• Eugene Farber, Ph.D., ABPP, Emory University School of Medicine, The Future of Psychology as a Health Service Discipline: Clinical Lessons from the HIV Epidemic
• Ramani Durvasula, Ph.D., California State University, Los Angeles: A History of HIV/AIDS in Women: Shifting Narrative and a Structural Call to Arms
• Karen Ingersoll, Ph.D., Professor of Psychiatry and Neurobehavioral Sciences at the Center for Behavioral Health & Technology, University of Virginia: Internet Intervention for HIV+ Substance Users to Improve ART Adherence and Addictive Behaviors
• Richard Jenkins, Ph.D., Health Scientist Administrator, Prevention Research Branch, National Institute on Drug Abuse: Roles for Psychologists in a World of Changing Epidemics and Policies

Each of the presentations drew attention to the ways that psychologists have contributed to the fight against HIV. A key point made by all the participants is that behavioral approaches to HIV prevention, care, and treatment optimize biomedical approaches—and that the two are inextricably linked.

Dr. Gene Farber set the frame for the session by reflecting on the essential role of behavioral health service providers in supporting a humanistic, culturally responsive, and patient-centered care experience for people living with HIV. He stressed that behavioral health services must encompass not only assessment and treatment of behavioral disorders but also interventions to prevent the onset of other health conditions and to optimize biopsychosocial well-being. He also noted that psychologists can make substantial contributions to patient care and evaluation in medical settings.

Dr. Karen Ingersoll took his points a step further to show how psychologists can help individuals even when in-person contact is impossible. She is working on finding better ways to support substance users who are living with HIV—particularly those in rural areas, where HIV and other types of care are not always available and may require time away from work. These individuals are at significantly higher risk for nonadherence to their HIV medications and disengaging from care—so Dr. Ingersoll and her colleagues have developed an interactive online video interventionExit Disclaimer that features peer role models offering advice and support to viewers. (Much like our own Positive Spin series, which takes a similar approach to supporting people living with HIV to achieve viral suppression.) This behavioral intervention is currently being tested to see if it can support substance users to take full advantage of biomedical treatment for their HIV disease.

Dr. Ramani Durvasula spoke about the need for holistic approaches to psychological care for women living with HIV. Her presentation focused on “the story of HIV in women,” which includes the multiple challenges women have faced in attempting to:

• Get information on HIV risk;
• Obtain an HIV diagnosis, care and treatment; and
• Participate in HIV clinical trials.

For many women, neither biomedical or behavioral interventions were available.

Dr. Durvasula then discussed the current need for psychologists to be aware of the multiple psychosocial stressors women with HIV face (e.g., economic and caregiving burdens, relational issues, stigma, intersectional discrimination) and how they affect women’s physical health. She also emphasized the need to focus on women’s resiliencies, strengths, and growth rather than just their HIV disease. She ended with the observation that, for the future, psychology training programs should be looking at social justice and advocacy training as key to producing psychologists with the skill sets necessary for the future.

Finally, Dr. Richard Jenkins took the audience through a history of the role of psychologists in the U.S. epidemic, including a look at the ways in which the advent of antiretroviral therapy (ART) and other biomedical approaches have pushed many behavioral interventions to the margins. However, he noted that many of issues that affected people living with HIV in the early days of the epidemic persist and have not been eliminated by effective biomedical treatment, including stigma, access to care, and racial/ethnic disparities. He ended his presentation with a series of questions about how to connect psychologists to opportunities in HIV work, and raise the value of psychology for workforce development related to HIV.

As I listened to these passionate, committed professionals, I thought about the long history of the HIV/AIDS epidemic in the United States. I thought about how our early efforts, which were based on the best information we had at the time, created systems and approaches that have sometimes hampered our efforts to respond to the realities of today’s epidemic.

For example, when the first HIV test became available, we created a standalone system for HIV testing that was supported with siloed funding (meaning the funds could only be used for HIV testing—not any follow-up care or treatment). This was necessary because of the large number of people who needed to be tested and the fact that many people were unwilling to be tested by their usual healthcare providers. They didn’t want their providers to know they were at risk for infection or did not want information about their risk and their HIV test results to be recorded.

So, we set up stand-alone systems for anonymous testing—meaning your name was never attached to your HIV test. You were given a number that matched the one on the vial of blood the worker at the testing site took from you, and you had to have that number to get your results. This approach was intended to alleviate the stigma of testing—but it also meant that we were not able to set up linkages to care and treatment for newly diagnosed people.

The lack of connection with health care was further reinforced—first, by the absence of effective treatment, and, then, for almost three decades, by guidelines indicating that ART was not needed until later in the course of the infection, when damage to the immune system became clear. This history—and the fact that funding streams were established for HIV testing separately from health care—have required substantial changes to facilitate immediate linkage to care, and establishing late in the epidemic coordinated prevention, care, and treatment plans.

Another way that our past response affects our future is in the way that surveillance systems were established. Initially we were focused on AIDS. We did not know what caused it, and we focused on documenting the cases when and where they were identified and when and where the person died. We did not need to gather data to support engagement in HIV care over a lifetime. We were focused on keeping people alive for the next year (or month) and preventing new cases. This changed as we learned what caused HIV, its effects on the body and how to treat it effectively. As changes occurred, we had to start playing catch-up on the surveillance front, and we continue to wrestle with how to collect data in ways that will help us end the epidemic.

We know now that being diagnosed and beginning HIV treatment as soon as possible are essential to the health of people living with HIV. We also know that good physical health and good mental health are closely connected, and that people who feel a sense of well-being are also more likely to feel motivated to care for their bodies. That’s particularly important for people living with HIV.

Our goal is to support every person to engage in care, remain on treatment, and achieve viral suppression—and that goal can only be reached if people feel empowered to take charge of their healthcare. That is where the contributions of my colleagues at APA come in.

Even though biomedical tools are clearly the way we will ultimately win this battle against the HIV epidemic, they will not work if people do not engage in the behaviors that are needed to use them effectively. Psychologists have the training and the skills to help them do just that.