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 institutions.
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 hospitals.
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 States.
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 HIV treatments.
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 underinsured:
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 communities.
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. 378–381.
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 RP-428.)
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, pp. 327–335.
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.
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.
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.)
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Bozzette, Samuel A., Sandra H. Berry, Naihua Duan, Martin Frankel, Arleen Leibowitz, Doris Lefkowitz, Carol-Ann Emmons, J. Walton Senterfitt, Marc L. Berk, Sally C. Morton, and Martin F. Shapiro, Caring for HIV Patients: Good News and Bad News. Santa Monica, CA: RAND Corporation, 1999. https://www.rand.org/pubs/research_briefs/RB4525.html.
Bozzette, Samuel A., Sandra H. Berry, Naihua Duan, Martin Frankel, Arleen Leibowitz, Doris Lefkowitz, Carol-Ann Emmons, J. Walton Senterfitt, Marc L. Berk, Sally C. Morton, and Martin F. Shapiro, Caring for HIV Patients: Good News and Bad News, Santa Monica, Calif.: RAND Corporation, RB-4525, 1999. As of May 19, 2022: https://www.rand.org/pubs/research_briefs/RB4525.html