Evolution of an Epidemic

20 Years of HIV Research at RAND

RAND has been in the vanguard of HIV research since the virus emerged on the national scene in the mid 1980s. Since then, as policy and clinical issues have evolved, RAND has adapted its focus and methods to address new issues.

Unmasking a Public Health Menace

  • In the mid 1980s the U.S. Centers for Disease Control and Prevention were tracking an unknown disease that was ravaging the population.
  • 90% of those infected died.
  • Public health officials did not know how to respond.

RAND Led the Way

Magnified HIV cell and bacterium in blood.

RAND used its own resources to model the disease, revealing its dynamics and transmissibility. This work prompted the Office of Science and Technology Policy to assemble leading experts to share their knowledge and experiences. The subsequent level and sophistication of research targeting HIV rose significantly.

HIV Cost & Services Utilization Study

The most influential research to emerge was the RAND-led HIV Cost and Services Utilization Study (HCSUS). It was the first major research effort to collect information on a nationally representative sample of people in care for HIV in the contiguous United States.

Active from September 1994 to October 2000, HCSUS provided reliable, actionable information about who received HIV care, where and when they received it, what the care cost, and how good it was. Since 2000, a steady stream of RAND work continues to expand our understanding of HIV and how it affects people’s lives, both in the United States and abroad.

What made HCSUS special?

First, a nationally representative sample was incredibly powerful. HCSUS staff could describe study outcomes with confidence to decisionmakers (e.g., the Surgeon General, the Congressional Black Caucus, provider organizations, advocacy groups, and clinicians). Policymakers have cited RAND's work as a key data source for reauthorization of the Ryan White HIV/AIDS program, a federally funded healthcare system benefiting low-income HIV patients.

Second, HCSUS engaged the HIV community at every stage of the work. Sustained community participation changed the context in which the study was designed and conducted and the way that study findings were interpreted and communicated.

3,700 HIV+ individuals
participated in HCSUS

At RAND, we challenge ourselves to be both responsive and visionary. RAND's early work in HIV brought reliable evidence and rigorous analysis to a major issue the policy world was only beginning to grapple with seriously.

Michael Rich President and Chief Executive Officer, RAND (2011—2022)

This image of the AIDS Memorial Quilt is derived from an original photo by Elvert Barnes, and is used and licensed under CC BY-SA 2.0.

HCSUS Key Findings

HCSUS provided essential information on the costs of care, barriers to access, and the effects of HIV on quality of life and ability to function.

Living with HIV

Understanding the Patient Experience

Today, experts understand much more about HIV and how to prevent transmission, but pressing questions about the illness remain. HCSUS laid the groundwork by engaging the HIV community in the first large-scale study of its kind. Now, more recent RAND work continues that legacy by addressing patient issues like stigma, family difficulties, and obstacles to treatment adherence.

  • Stigma

    "My coworkers will avoid me if I tell them I'm HIV+."

    HIV+ individuals must weigh the risks of disclosing their status at work versus the stress of maintaining secrecy.

  • Mental Health

    "I feel depressed, but I'm not sure how to get help."

    People with HIV are more likely to have mental health or substance abuse problems than individuals in the general population.

  • Family Issues

    "If I say I'm HIV+, my partner will leave me."

    It was not uncommon for individuals in treatment to have risky sex without telling their partner that they were HIV+.

  • Patient Engagement

    "There are lots of things that get in the way of my treatment."

    Women were more likely than men to put off receiving care because they had competing demands on their time (e.g., caring for children or aging parents).

  • Medical Mistrust

    "I don't think my doctor is doing everything he can for me."

    1/3 of HIV+ individuals waited 3 to 6 months after diagnosis before receiving antiretroviral therapy (ART), in part because they did not trust their provider.

  • Misconceptions

    "I'm afraid to hug or kiss my baby because I could give her HIV."

    1/4 of HIV-infected parents avoided physical interaction with their children because they did not understand how HIV is transmitted.

Looking Ahead: Focus on Adherence

Connecting HIV+ individuals to treatment and motivating them to stay connected are public health priorities because treatment reduces viral load (a measure of the amount of HIV in the blood), thereby reducing the risk of transmitting the disease.

RAND experts are exploring innovative ways to promote adherence, focusing on at-risk populations both in the United States and abroad, especially in Africa, which bears a disproportionate burden of HIV.

  • A "Positive Deviance" Approach to HIV Prevention

    Exploring adaptive behaviors that may reduce HIV risk among substance-using, HIV-negative black men who have sex with men

  • Lottery in Uganda

    Awarding small prizes, allocated by a lottery drawing, to motivate individuals to adhere to treatment

  • Social Networks in Botswana

    Examining social networks to identify treatment partners—someone who goes to appointments with patients and reminds them about medications

  • Targeting Vulnerable Populations in the United States

    Taking HIV risk-reduction efforts for homeless youth and women to drop-in centers and emergency shelters

  • Food and Nutrition in the Dominican Republic

    Using collective urban gardening and nutritional counseling from community members to help reduce food insecurity and HIV stigma

HIV is now a chronic disease that is manageable. But 'managing' it isn't easy. The current era demands innovative approaches to HIV testing, linking people to care, and keeping them engaged in treatment over the long haul.

David E. Kanouse
Social Scientist

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