Caring for HIV
Good News and Bad News
The good news about HIV care in the United
States is that treatment costs are not prohibitive--the average cost
per patient equals about $20,000 a year. Although these costs
represent a growing burden on the public sector, they are still
smaller than the costs of treating some other major diseases. The
bad news, however, is that one-half to two-thirds of American adults
infected with HIV do not get regular care, and even fewer receive
the most advanced anti-HIV therapy.
These are the main findings in the initial report from the HIV
Cost and Services Utilization Study (HCSUS), the first comprehensive
effort to collect information about a nationally representative
sample of people receiving care for HIV infection. Sponsored by the
Agency for Health Care Policy Research, the study is being led by
RAND in conjunction with a consortium of private and public research
The report is based on data from the study's opening round of
interviews with 2,864 patients randomly selected to accurately
represent the study's "reference population"--adults in the
contiguous 48 states with known HIV infection who received medical
care during the first two months of 1996. The study excluded adults
treated at military, prison, and emergency room facilities and also
excluded children. The interviews sought information primarily on
the nature and costs of care, as well as on patient characteristics.
Characteristics of HIV Care
The study team found that 231,400 adults were
treated during the first two months of 1996. Based on this figure,
the team estimated that about 335,000 HIV-infected American adults
saw a doctor at least once every six months in 1996. However, about
one-half to two-thirds of all infected adults (estimated to number
between 650,000 and 900,000) did not receive regular medical care.
These individuals were primarily in the early stages of the disease.
Fifty-nine percent of patients met the Centers for Disease Control
case definition for AIDS, the most advanced stage of HIV infection.
Care settings. Seventy percent of patients received care
from office-based physicians and community hospitals and clinics,
and the remaining 30 percent received care from major teaching
Costs. The cost of treating patients in the reference
population was about $5.1 billion annually. This figure is based on
data from the first two months of 1996. The authors extrapolated
from this figure to estimate that total spending for HIV-infected
adults who received medical care at least once every six months in
1996 was about $6.7 billion (approximately $20,000 per patient), or
less than 1 percent of all direct personal health care expenditures
in the United States. That number is "not inordinate," according to
the study, considering that HIV infection accounts for about 7
percent of the total potential years of life lost in the United
The most expensive cost component was hospital care, but the
costs of pharmaceuticals rose sharply during the course of the study
period and were more than double the amount spent on outpatient care
(see figure). The authors expect spending on pharmaceuticals to
increase further as care providers make more-extensive use of new
Pharmaceutical use. The study also found
that only about half of patients under care had used advanced,
highly active ("antiretroviral") HIV treatments, although their use
grew dramatically during the study reporting period.
Profile of HIV Patients
Patients receiving care for HIV infection
differ from the general U.S. population in several ways. They are
disproportionately young, male, black, poor, unemployed, and
- Eighty-nine percent of the sample were age
50 or younger.
- Seventy-seven percent were men.
- One-third were non-Hispanic blacks.
- Forty-six percent had annual incomes below
$10,000, and 72 percent had incomes of less than $25,000.
- Only 37 percent had jobs.
- Only 32 percent had private health
insurance, 29 percent were covered by Medicaid, 19 percent were
covered by Medicare (often in conjunction with Medicaid), and 20
percent had no coverage at all. Although the HIV patients surveyed
were only one-fifth more likely to be uninsured than the general
population, they were three times as likely to be insured by
Medicaid and nine times as likely to have Medicare coverage.
These characteristics prevailed despite the
fact that the educational level of HIV patients was roughly the same
as that of the general population, with slightly less than half
reporting some college education.
Policy Implications and Next Steps
The authors draw two basic implications from
their findings: Given that up to two-thirds of HIV patients are not
receiving regular treatment, the health care system needs to do a
better job of getting HIV-infected individuals into care. Second,
the system needs to provide more-effective means of financing that
care, particularly for the increasingly affected poor and minority
The next phases of the HCSUS study will examine in more detail
the issue of disparities in access to care across socioeconomic and
racial groups, as well as the impact of variations in insurance
coverage, the extent of mental health and substance abuse disorders
among HIV patients, and the extent to which HIV is becoming
resistant to the new antiretroviral drug therapies.
Selected Bibliography of RAND Health Research on HIV and AIDS
Asch, S. M., A. S. London, P. F. Barnes, and L.
Gelberg, "Testing for Human Immunodeficiency Virus Infection Among
Tuberculosis Patients in Los Angeles," American Journal of
Respiratory and Critical Care Medicine, Vol. 155, 1997, pp.
Bozzette, S. A., S. H. Berry, N. Duan, et al., "The Care of
HIV-Infected Adults in the United States," The New England
Journal of Medicine, Vol. 339, No. 26, 1998, pp. 1897-1904.
Bozzette, S. A., and S. M. Asch, "Developing Quality Review
Criteria from Standards of Care for HIV Disease: A Framework,"
Journal of Acquired Immune Deficiency Syndromes and Human
Retrovirology, Vol. 8, Suppl. 1, 1995, pp. S45-S52. (Also
available as RAND Reprint RP-427.)
Bozzette, S. A., D. E. Kanouse, S. Berry, and N. Duan, "Health
Status and Function with Zidovudine or Zalcitabine as Initial
Therapy for AIDS: A Randomized Controlled Trial," JAMA,
Vol. 273, No. 4, 1995, pp. 295-301. (Also available as RAND Reprint
Bozzette, S., R. D. Hays, S. H. Berry, et al., "A Perceived
Health Index for Use in Persons with Advanced HIV Disease:
Derivation, Reliability, and Validity," Medical Care,
Vol. 32, 1994, pp. 716-731.
Cunningham, W. E., R. D. Hays, M. K. Ettl, W. J. Dixon, R. C.
Liu, C. K. Beck, and M. F. Shapiro, "The Prospective Effect of
Access to Medical Care on Health-Related Quality-of-Life Outcomes in
Patients with Symptomatic HIV Disease," Medical Care,
Vol. 36, No. 3, 1998, pp. 295-306.
Cunningham, W. E., M. F. Shapiro, R. D. Hays, W. J. Dixon, B. R.
Visscher, W. L. George, M. K. Ettl, and C. K. Beck, "Constitutional
Symptoms and Health-Related Quality of Life in Patients with
Symptomatic HIV Disease," American Journal of Medicine,
Vol. 104, 1998, pp. 129-136.
Cunningham, W. E., D. M. Mosen, R. D. Hays, R. M. Andersen, and
M. F. Shapiro, "Access to Community-Based Medical Services and
Number of Hospitalizations Among Patients with HIV Disease: Are They
Related?" Human Retrovirology, Vol. 13, No. 4, 1996,
Cunningham, W. E., R. D. Hays, K. W. Williams, K. C. Beck, W. J.
Dixon, and M. F. Shapiro, "Access to Medical Care and Health-Related
Quality of Life for Low-Income Persons with Symptomatic Human
Immunodeficiency Virus," Medical Care, Vol. 33, No. 7,
1995, pp. 739-754.
Hays, R. D., W. E. Cunningham, C. K. Beck, M. F. Shapiro, and M.
K. Ettl, "Health-Related Quality of Life in HIV Disease,"
Assessment, Vol. 2, No. 4, 1995, pp. 363-380.
Kanouse, D. E., S. H. Berry, E. M. Gorman, E. M. Yano, S. Carson,
and A. F. Abrahamse, AIDS-Related Knowledge, Attitudes,
Beliefs, and Behaviors in Los Angeles County, Santa Monica,
Calif.: RAND, R-4054-LACH, 1991.
Kanouse, D. E., S. H. Berry, E. M. Gorman, E. M. Yano, and S.
Carson, Response to the AIDS Epidemic: A Survey of Homosexual
and Bisexual Men in Los Angeles County, Santa Monica,
Calif.: RAND, R-4031-LACH, 1991.
Lever, J., D. E. Kanouse, W. H. Rogers, S. Carson, and R. Hertz,
"Behavior Patterns and Sexual Identity of Bisexual Males,"
Journal of Sex Research, Vol. 29, No. 2, May 1992, pp.
141-167. (Also available as RAND Reprint RP-136, 1992.)
Longshore, D., J. A. Stein, and M. D. Anglin, "Psychosocial
Antecedents of Needle/Syringe Disinfection by Drug Users: A
Theory-Based Prospective Analysis," AIDS Education and
Prevention, Vol. 9, No. 5, 1997, pp. 442-459.
Longshore, D., M. D. Anglin, and S.-C. Hsieh, "Intended Sex with
Fewer Partners: An Empirical Test of the AIDS Risk Reduction Model
Among Injection Drug Users," Journal of Applied Social
Psychology, Vol. 27, No. 3, 1997, pp. 187-208.
Mathews, W. C., and D. E. Kanouse, "Treatment Adequacy for
HIV-Related Pneumocystis Pneumonia: Quality Measures for Inpatient
Care," International Journal for Quality in Health Care,
Vol. 9, No. 5, 1997, pp. 349-359.
Pascal, A. H., C. L. Bennett, M. Cvitanic, E. M. Gorman, and C.
Serrato, The Costs and Financing of Care for AIDS Patients:
Results of a Cohort Study in Los Angeles, Santa Monica,
Calif.: RAND, N-3060-HCFA, 1990.
Pascal, A. H., P. D. Jacobson, P. A. Lindsey, J. Duncan, and J.
E. DiNardo, The Effects of the AIDS Epidemic on Traditional
Medicaid Populations, Santa Monica, Calif.:
RAND, R-4148-HCFA, 1992.
Schuster, M. A., R. M. Bell, and D. E. Kanouse, "The Sexual
Practices of Adolescent Virgins: Genital Sexual Activities of High
School Students Who Have Never Had Vaginal Intercourse,"
American Journal of Public Health, Vol. 86, No. 11, 1996,
pp. 1570-1576. (Also available as RAND Reprint RP-601, 1996.)
Schuster, M. A., R. M. Bell, L. Petersen, and D. E. Kanouse,
"Communication Between Adolescents and Physicians About Sexual
Behavior and Risk Prevention," Archives of Pediatrics and
Adolescent Medicine, Vol. 150, No. 9, 1996, pp. 906-913.
(Also available as RAND Reprint RP-569, 1996.)
This research highlight summarizes work more
fully documented in: Samuel A. Bozzette, Sandra H. Berry, Naihu Duan,
et al., "The Care of HIV-Infected Adults in the United States,"
New England Journal of Medicine, Vol. 339, No. 26, December
1998, pp. 1897-1904. Abstracts of all RAND® Health
documents may be viewed on the World Wide Web (http://www.rand.org/health).
RAND is a nonprofit institution that helps improve policy and
decisionmaking through research and analysis; RAND Health furthers
this mission by working to improve health care systems and advance
understanding of how the organization and financing of care affect
costs, quality, and access.