Living with HIV: Understanding the Patient Experience

HIV is now considered a chronic, rather than fatal, disease. Experts understand much more about managing HIV than they did 30 years ago. But patients living with HIV still face multiple challenges. Some of these are persistent issues, first highlighted in the historic HIV Cost and Services Utilization Study (HCSUS). For example, patients may still face discrimination due to misconceptions about how HIV is transmitted. Individuals who have psychiatric conditions or who abuse drugs or alcohol are still the least likely to adhere to treatment.

But those living with HIV may also face new challenges. For example, should HIV+ individuals plan a family? Should they even tell their partners that they are HIV+? How can patients find the time and the motivation to commit themselves to a medication plan for life?

Ongoing RAND work focuses on problems that HIV+ individuals struggle with every day—stigma, medical mistrust, and patient engagement, among others.

Patient Experience


HIV is an epidemic fueled, in part, by stigma. Fear of HIV-related stigma and associated discrimination can discourage individuals from HIV testing and subsequent treatment. This is especially true among African Americans and Latino populations. Biases related to race/ethnicity, HIV serostatus, and sexual orientation can negatively affect adherence to treatment, especially when the biases are expressed by an individual's social network.

The stigma associated with HIV poses special challenges to the families of HIV+ individuals. For example, parents are reluctant to tell their children they are HIV+ because they are afraid others will treat the children unfairly. It may also be especially difficult to take medications when children or other family members are not aware that a parent is HIV+.

A series of studies demonstrated the feasibility of engaging urban congregations serving racial and ethnic minority populations in efforts to reduce stigma and promote testing. Programs designed in collaboration with church and community leaders reduced the stigma associated with HIV and increased testing, among other results. Because testing was integrated with other church-based health activities, HIV seemed to become viewed more as a health issue than a moral issue. Efforts to reduce stigma and HIV testing appear to interact in positive ways.

"Latino and African American churches that implemented the HIV stigma reduction program had increased HIV testing among congregation members."

Katie DeRose, Senior Policy Researcher

Selected Publications

Mental Health: Treating Depression and Substance Abuse

Individuals with HIV are much more likely to have mental health or substance abuse problems than individuals in the general population. Among HCSUS participants, most HIV+ people got the care they need for these conditions. But more than half of those receiving ART didn't take their medications as directed; compliance was even lower for those suffering from depression or addiction.

Depression and substance abuse remain barriers to treatment adherence, and eliminating them has remained a research priority. Depression undercuts the prevention benefits of ART, highlighting the need to integrate mental health services into HIV care. HIV providers can screen for psychiatric symptoms and for both drug dependence or heavy drinking and provide appropriate early treatment, improving patients' quality of life and decreasing overall treatment costs.

Selected Publications

Family Issues

The transformation of HIV from death sentence to chronic disease raises many family-related issues. Should HIV+ individuals tell their partners about the disease? Should they tell their children? Should they plan a family?

Recent work reveals that sex without disclosing HIV status is relatively common among individuals living with HIV. About half of HIV+ parents don't tell their children about their condition+, in part because they don't know how; about one-quarter avoid common physical contact with their children due to misconceptions about how HIV is transmitted. Misconceptions also influence children’s fear of sharing food or hugging and kissing their parents.

Despite such concerns, more than 25 percent of HIV+ men and women receiving care in the U.S. want children, and about two-thirds expect to have them. The challenge is to help them make informed decisions about childbearing, then offer either contraception or safer conception counseling based on their decision.

"We want to help HIV+ clients/couples make informed decisions about childbearing and offer contraception or safer conception counseling based on their decision."

Glenn Wagner, Senior Behavioral Scientist

Selected Publications

Patient Engagement

Living with HIV means making a life-long commitment to consistent treatment. But individuals with other demands on their time, attention, or resources—such as parents caring for young children or an aging parent or individuals having difficulty paying for food, clothing, and housing—were less likely to avail themselves of antiretroviral treatment. Women were more likely than men to report putting off seeking care because of responsibilities for the care of others. African Americans and Hispanics were more likely than whites to report being hampered by competing economic demands.

With the emerging emphasis on Treatment as Prevention pushing patients to start ART earlier than ever, the public health risks related to non-adherence may be greater than ever. Patients with earlier stage disease may be less adherent because they have not yet experienced serious symptoms. Starting patients on treatment before they are really ready to adhere increases the risk for an expanding "community pool" of resistance.

Most interventions to increase adherence target patients once they are on antiretroviral therapy. A current study, based on successes of a small pilot, is testing whether a skills model of behavior change can help providers know when an individual is ready to adhere before they start treatment. The model includes practice pill-taking sessions and a dose regulation mechanism to tailor the amount of counseling (from pre-treatment through the full course of treatment) to the individual needs of the patients.

"HIV is a lifelong chronic disease that requires behavior change."

Sebastian Linnemayr, Senior Economist

Selected Publications

Medical Mistrust

One of the culturally relevant factors that may contribute to riskier sexual behavior among African Americans is medical mistrust—both in general and mistrust specific to HIV. For example, HIV conspiracy beliefs in African American communities, especially those related to treatment mistrust (e.g., people who take antiretroviral treatments are human guinea pigs for the government), can contribute to health disparities by discouraging appropriate treatment behavior.

Medical mistrust among African-American males with HIV predicts lower medication adherence over time and may help to explain disparities in medication adherence rates (as well as related HIV health outcomes) between African-Americans and other racial/ethnic groups.

Selected Publications


Some family issues for HIV+ individuals stem from misconceptions about the disease. For example, both HIV+ parents and their children have fears about transmitting HIV. Parents worry that normal physical expressions of affection for their children such as hugging or kissing put the children at risk for transmission. They also worry about catching some opportunistic infection from a child.

For their part, children may also have concerns about physical contact, as well as fears about other aspects of daily family living, including eating the food their HIV+ mother prepares or sharing bathrooms.

Most of these fears are based on misconceptions about how HIV is transmitted, although worry about contracting an infection from a sick child is a legitimate concern for an HIV+ adult, whose immune system is compromised.

To allay these fears, parents can educate their children about HIV and how it is transmitted, take precautions at home, and set rules to reduce the risk for all concerned. Pediatricians can offer advice to HIV+ mothers about how to care for a sick child without endangering their own health.

Selected Publications