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Many HIV-infected Americans Are Not Receiving Medical Care Regularly

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Press Release Date: December 23, 1998

According to a major new study sponsored by HHS' Agency for Health Care Policy and Research (AHCPR), and led by RAND, the Santa Monica, California-based think-tank, roughly 335,000 adults in the United States infected by HIV see a doctor on a regular basis. However, in conjunction with the estimate by HHS' Centers for Disease Control and Prevention (CDC) that 650,000 to 900,000 Americans have the virus, which causes AIDS, the study also implies that a significant proportion of HIV-infected adults do not receive medical care on a regular basis. Furthermore, most infected adults who do not receive medical care on a regular basis are in the early stages of the disease. These findings are from the HIV Cost and Service Utilization Study (HCSUS), which provides the first comprehensive picture on a national scale of who gets care for HIV illness, the kinds of health services used, the costs of these services, and who pays for them.

The study, which appears in today's New England of Journal of Medicine, also found that HIV care amounted to $6.7 billion in 1996, or an average of $20,000 per HIV patient, which is less than what is commonly believed and represents less than one percent of all direct personal health expenditures in the United States.

Findings also indicate that 85 percent of patients treated for the virus used at least one HIV medication, and 79 percent used an antiretroviral drug during the six months prior to being interviewed. The pattern of use of protease inhibitors and non-nucleoside reverse transcriptase inhibitors—recently developed drugs that are highly effective in suppressing HIV infection—changed rapidly in 1996. At the beginning of the year, 16 percent of patients had used one of the newer drugs. By December of 1996, that proportion had shot up to 55 percent.

"This unique study will help public health planners and legislators make data-based critical decisions that will affect HIV care into the new century," said AHCPR Administrator John M. Eisenberg, M.D.

Dr. Eisenberg said that HCSUS will address many additional questions including disparities in access to care, the impact of variation in insurance coverage, the extent of mental health and substance abuse disorders, oral health, rural care and the extent to which HIV is becoming resistant to antiretroviral drugs.

Claude Earl Fox, M.D., administrator of HHS' Health Resources and Services Administration (HRSA), which is a primary sponsor of HCSUS, said, "The data clearly underscore the critical issues HRSA has faced for the past decade as we administered the network of HIV care providers supported under the Ryan White CARE Act, and as we integrated the growing need for HIV/AIDS care into all our programs for low-income and medically underserved individuals. Our continuing challenge is to improve access to care by effectively reaching out to people as early in their infection as possible, and by getting them into high-quality care."

"It is deeply disturbing that up to two-thirds of persons with HIV infection are not getting regular care and that even fewer are getting the new multi-drug therapy," said lead author Samuel A. Bozzette, M.D., Ph.D., an infectious disease specialist and HIV expert who serves as co-director of HCSUS, along with Martin F. Shapiro, M.D., Ph.D., of the University of California, Los Angeles.

Dr. Bozzette, who is also affiliated with the University of California, San Diego, and the Veterans Affairs San Diego Healthcare System, further said, "The data explode the widespread belief that care for the HIV infected is extraordinarily costly. Although it is a large and growing burden on the public sector, HIV care is less expensive than care for many other serious diseases. The real crisis in paying for HIV care is not its cost, but rather how to finance it."

The study found that 231,400 persons received medical care for HIV infection in January and February 1996. From this, the researchers estimated that 292,000 to 372,000 adults with known HIV infection saw a doctor at least once during any six-month period (the definition of regular medical care) in 1996, with the best point estimate being 335,000. Other findings include that:

  • Fifty-nine percent of adults under care because of the virus meet the CDC definition of AIDS—the most advanced stage of HIV disease. They represent about 85 percent of all adults thought to be living with "full-blown" AIDS.
  • The demographic and socioeconomic characteristics of the population under care for HIV infection are strikingly different from those of the U.S. population as a whole. Americans under care for HIV are disproportionately male, black, unemployed, poor and do not have private health insurance to pay for medical care.
  • Thirty percent of patients received care at major teaching hospitals; the balance received their care from office-based physicians and community hospitals and clinics. One-third made at least one visit to an emergency room and 20 percent were hospitalized every six months. Their stays accounted for about one percent of all hospital days in the United States.
  • Hospital care accounted for 43 percent of patients' direct medical care costs, pharmaceuticals for 39 percent, emergency department care for 2 percent, and other outpatient care and associated costs for 15 percent.
  • Seventy-seven percent of HIV-infected patients were men and 89 percent were less than 50 years old. About half were non-Hispanic whites, one-third were non-Hispanic blacks and one-sixth were Hispanics. Women with HIV were more likely than men to be young, black, less educated, unemployed, impoverished and under-insured. But they were also less likely to have "full-blown" AIDS.
  • The percentage of HIV patients who depend exclusively on Medicaid (29 percent) is three times greater than the percentage of Medicaid patients in the general population. A surprisingly large 19 percent of the population had coverage through Medicare.
  • Nearly half the patients were men who said they had sex with other men but no injection drug use; 24 percent reported injection-drug use with or without other risk behaviors; 18 percent said they only engaged in heterosexual sex; and 9 percent reported no known risk factors.

The findings are based on data from the opening round of HCSUS interviews with 2,864 patients randomly selected to accurately represent the study's "reference population"—adults with known HIV infection who received medical care during the first two months of 1996 in the contiguous 48 states. The sample did not include adults treated only at military, prison and emergency room facilities.

In addition to AHCPR and HRSA, other HHS components contributing to HCSUS include the department's Office of the Assistant Secretary for Planning and Evaluation, the National Institute of Mental Health, National Institute on Drug Abuse, National Institute on Aging and the Office of Research on Minority Health of the National Institutes of Health. Additional support was provided by the Robert Wood Johnson Foundation, Merck and Company, Glaxo-Wellcome, Inc. and Quest Diagnostics.

For more information about the study, see "The Care of HIV-Infected Adults in the United States," by Dr. Bozzette and others, published in the December 24, 1998 issue of The New England Journal of Medicine. For more information about HCSUS, select to access the HCSUS Fact Sheet at: http://www.ahrq.gov/data/hcsus.htm.

Note to Editors: For interviews with Dr. Bozzette or fellow HCSUS co-director, Dr. Martin F. Shapiro, contact Jess Cook, director of RAND's public information office, at (310) 451-6913.

For additional information, contact AHCPR Public Affairs: Karen Migdail, (301) 427-1855 (KMigdail@ahrq.gov).

The information on this page is archived and provided for reference purposes only.

 

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