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Access to Life-sustaining Anti-HIV Drugs Slow for Poor and Uninsured Patients, but Disparities Are Narrowing

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Press Release Date: June 22, 1999

In 1996, when the "AIDS cocktail drugs"—protease inhibitors—were first approved, uninsured people with HIV disease waited up to four and one-half months longer, on average, than privately insured patients to begin life-sustaining medication, according to a new nationwide study sponsored by the Federal government's Agency for Health Care Policy and Research (AHCPR). The study also found that HIV patients covered by Medicaid waited three months longer than privately insured people to start protease inhibitor therapy, blacks started nearly three months after whites, and women began about two months later than men, on average.

But the findings published in Wednesday's Journal of the American Medical Association also contain some encouraging news—the glaring disparities uncovered at the beginning of 1996 have narrowed considerably. By the beginning of 1998, Latinos no longer lagged behind white Anglo HIV patients in five of six indicators used to determine the adequacy, or inadequacy of care, and although Medicaid, uninsured and African-American patients continued to lag behind their counterparts in several of the measures, the differences were not as pronounced as before. The disparity between female and male HIV patients, however, remained essentially unchanged.

AHCPR Administrator John M. Eisenberg, M.D., said, "This study gives policymakers and health officials evidence, on a national scale, that the quality of care for people with HIV too often falls short of what is considered adequate and can vary dramatically by the race, ethnicity or gender of the patient. The challenge now is to eliminate these disparities."

Claude Earl Fox, M.D., M.P.H., Administrator of HHS' Health Resources and Services Administration (HRSA), a primary contributor to the project that resulted in today's study, said, "HRSA places a high priority on eliminating health care disparities due to a person's race, gender, lack of insurance, income or location. And through the Ryan White CARE Act, with a network of some 500 grantees and 2,500 providers, we have significantly expanded our ability to improve access and eliminate disparities for people living with HIV. This study reinforces the importance of our efforts."

The findings from the HIV Cost and Services Utilization Study (HCSUS)—conducted by RAND of Santa Monica, Calif., through a cooperative agreement with AHCPR—are based on data from a national sample of patients representing the nation's 231,400 HIV-infected people under care for their disease, who were interviewed in 1996, 1997 and early 1998. The interviews focused on six indicators of access to quality care—receipt of any anti-retroviral therapy ever; initiating, by the end of 1996, treatment with the recently developed "AIDS cocktails," which incorporate protease inhibitor or non-nucleoside reverse transcriptase inhibitor drugs; taking drugs to prevent Pneumocystis carinii pneumonia—a major killer of HIV-weakened patients; making at least two outpatient visits; not being hospitalized; and not visiting the emergency room for a problem that did not result in hospitalization.

In early 1996, seven of every 10 HIV patients failed to meet at least one of the six standards of access to quality care for which they were eligible. Within the six months prior to that first interview, 15 percent of the sample had seen their doctors fewer than two times—the number of visits considered adequate for good continuity of care; 23 percent made at least one emergency room visit for a problem not leading directly to hospitalization, and 19 percent had been hospitalized at least once.

Also in 1996, Medicaid and uninsured patients, along with African-Americans and Latinos, were found to be less likely than other HIV patients to visit the doctors managing their disease often enough for good continuity of care, and they were more likely to have gone to an emergency room for problems not leading directly to hospitalization. African-American, female and Medicaid patients were more likely than other patients to have been admitted to a hospital for HIV-related reasons. Although appropriate ambulatory care does not guarantee that HIV patients will never need to use emergency rooms or be hospitalized for their condition, it reduces the likelihood significantly.

In addition, 30 percent of patients with CD4 cell counts of less than 200 cells/mm3 had not taken drugs to prevent Pneumocystis carinii pneumonia, and 41 percent whose CD4 cell counts were less than 500 cells/mm3 had not started either protease inhibitor or non-nucleoside reverse transcriptase inhibitor therapy by the end of 1996.

According to Martin F. Shapiro, M.D., the lead author of the study and co-project director of HCSUS, the overall proportion of HIV patients in compliance with all six standards for which they were eligible had risen to 47 percent by January 1998. Also by early 1998, the percentage who had started either protease inhibitor or non-nucleoside reverse transcriptase inhibitor therapy had climbed to 85 percent among those with CD4 counts of less than 500. In addition, emergency room use and hospitalization rates fell. The percentage of patients not taking medication to prevent Pneumocystis carinii pneumonia declined, although only moderately—from 30 percent to 26 percent.

Moreover, the disparity between African-American and white patients in initiating use of newly developed HIV medications decreased from 24 percent to 8 percent, while the gulf between uninsured and Medicaid patients on the one hand and privately insured patients on the other, declined by about half.

"But any disparity, no matter how small, can be of life or death importance if you're in the group that doesn't get as good or timely care as other patients," said Dr. Shapiro, who is with RAND and the University of California, Los Angeles. "Certainly new state-of-the art therapies for HIV will be developed in the future; any lag in obtaining these may well place patients at risk of death or other serious complications. Therefore, it's very important that we monitor the population under care to see if these recur. We also need to make sure that patients not yet in care get access to treatment," said Dr. Shapiro.

Fellow co-project director Samuel A. Bozzette, M.D., of RAND, the University of California, San Diego, and the Veterans Affairs San Diego Healthcare System, said, "AIDS has been a focus of much public attention and of many special government, private and charitable efforts. Yet this first national study shows that deficient care is not uncommon in the United States. Clearly, we need to look at other diseases this way."

For details, see "Variations in the Care of HIV-Infected Adults in the United States: Results from the HIV Cost and Services Utilization Study," by Dr. Shapiro, Dr. Bozzette, and others, in the June 23, 1999 issue of the Journal of the American Medical Association. HCSUS is also supported by the 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.

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

For additional information, contact the AHCPR Press Office (301) 427-1364: Karen Migdail (301) 427-1855 (

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