HIV Cost and Services Utilization Study (HCSUS) Key Findings

The most influential research to emerge during this time was conducted by 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 infection 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.

HCSUS Key Findings

Portrait of the HIV+ Population

HCSUS participants were strikingly different from the general population. They were disproportionately young, male, black, poor, unemployed, and under-insured. Their educational level was roughly the same as that of the general population.

Extrapolating from the number of HIV+ individuals in HCSUS, researchers estimated that an average of 335,000 individuals received care in some setting in the United States during any typical six-month period in 1996. But one-half to two-thirds of all infected adults in the U.S. (official estimates range from 650,000 to 900,000) did not receive regular medical care. They were primarily in the early stages of the disease, but about 60 percent met the official definition of AIDS from the Centers for Disease Control.

"The presence of HIV+ community members on our work teams strongly influenced how the work evolved."

Martin Shapiro, M.D.
Co-Principal Investigator, HCSUS

Selected Publications


Drawing on information from HCSUS, researchers estimated that total spending for HIV-infected adults who received medical care at least once every six months in 1996 was about $6.7 billion, about $20,000 per patient.

These costs were not viewed as inordinate. At its peak, HIV accounted for about 7 percent of total potential years of life lost—more than pneumonia, influenza, heart disease, diabetes, and liver disease combined.

The fact that less than half of all HIV-infected adults received regular medical care was driven, in part, by the kind of insurance they had. Only one-third of all HIV+ Americans had private insurance, and one-fifth were uninsured. The rest were covered by Medicaid or Medicare.

Researchers estimated the cost effects if every state had the most generous coverage and eligibility available under the Ryan White program. They found that the more coverage and eligibility increased, the more treatment costs per case fell.

Costs of HIV care were commensurate with its social and clinical effects.

Selected Publications

Dental Care

In general, HIV+ individuals have poor dental health. Nearly 60 percent of HCSUS participants needed, but did not get, dental care. Being African American, having contracted HIV as a result of receiving blood for hemophilia or blood transfusions, having less than a college education, and having no dental insurance decreased the likelihood that an HIV+ individual had seen a dentist in the previous six months. The perception of unmet needs for dental care was greatest among participants who lacked dental insurance. Many of them were Medicaid recipients, but they lived in states where Medicaid did not provide dental benefits.

HIV+ patients were more likely to get dental care when it was provided by the clinic where they got their medical care.

Antiretroviral therapy (ART) improved oral health. Individuals who began using ART early in the course of their disease had better oral health: patients who got other treatments or got no ART were far more likely to report having had one particular HIV-related opportunistic infection of the oral cavity, which appears in the form of white patches. These white patches may be the earliest visible sign of HIV infection.

Many HIV+ patients did not get the dental care they needed.

Selected Publications

Inequality in Care

Not everyone who needed HIV treatment got it.

HCSUS demonstrated systemic socioeconomic differences in access to HIV care across all regions of America. African Americans and Hispanics, those without health insurance or with only public insurance, individuals with only a high school education, IV-drug users, and women all received sub-optimal care.

Nearly one-third of HCSUS participants—especially Hispanics, women, and those with low incomes—had a delay of three to six months between diagnosis and treatment: apparently many physicians thought these groups would be less likely to adhere to treatment. Minorities were also less likely to take part in clinical trials, perhaps in part because they mistrusted health care providers.

"Because of HCSUS, a whole group of minority communities received compensatory benefits available through the Ryan White HIV/AIDS program."

Sam Bozzette, M.D.
Co-Principal Investigator, HCSUS

Selected Publications

Access and Quality of Care: Clinical Context Mattered

Physician factors also influenced who received antiretroviral therapy (ART). Participants who received care from infectious disease specialists or from generalists with detailed knowledge of HIV were significantly more likely to receive ART than were patients treated by non-expert generalists. African American patients who had white physicians received ART later than African American or white patients who had physicians of the same race.

A broad clinical base seemed the most effective environment for providing ART: multidisciplinary clinics provided better quality care than single specialty clinics.

Selected Publications

Mental Health and Substance Abuse

At the beginning of HCSUS, half of participants screened positive for one or more of four psychiatric disorders—major depression, dysthymia, generalized anxiety disorder, and panic attacks. These individuals had significantly higher medical costs in the 12 months after screening because they used more inpatient and emergency services.

Nearly two-fifths of the HCSUS participants reported using an illicit drug other than marijuana, and more than 1 in 8 were addicted. About 13 percent of HCSUS participants had psychiatric symptoms and were either drug-dependent, heavy drinkers, or both.

Nearly half of HCSUS participants without a psychiatric disorder or drug use adhered to the ART treatment plan. But adherence declined to about one-third for those with a psychiatric disorder, and lower still for those who used drugs or alcohol. Adherence declined steadily with increasing alcohol use, even moderate use.

When asked what interfered most with adherence, people with mental health and substance use problems most often cited the time and effort required to get the medications and the challenges of integrating the complex treatment regimen into one's lifestyle.

Selected Publications