FREE NEJM E-TOC    HOME   |   SUBSCRIBE   |   CURRENT ISSUE   |   PAST ISSUES   |   COLLECTIONS   |   Search Term  Advanced Search

Sign in | Get NEJM's E-Mail Table of Contents — Free | Subscribe

Previous Volume 346:1373-1382 May 2, 2002 Number 18 Next

	Full Text PDF PDA Full Text Supplementary Material Editorial by King, T. E. Add to Personal Archive Add to Citation Manager Notify a Friend E-mail When Cited PubMed Citation

ABSTRACT

Background Although there is concern that minority groups and women are underrepresented in research involving patients with human immunodeficiency virus (HIV) infection, the available data are inconclusive.

Methods We used nationally representative data from the HIV Cost and Services Utilization Study to determine the characteristics of the participants and nonparticipants in trials of medications for HIV infection and whether or not patients had access to experimental treatments. A probability sample of 2864 persons, representing all 231,400 adults with known HIV infection who are cared for in the contiguous United States, were interviewed on three occasions between 1996 and 1998. They were asked about participation in clinical research studies of medications and past receipt of experimental medications for HIV.

Results We estimate that 14 percent of adults receiving care for HIV infection participated in a medication trial or study; 24 percent had received experimental medications; and 8 percent had tried and failed to obtain experimental treatments. According to multivariate models, non-Hispanic blacks and Hispanics were less likely to be participating in trials than non-Hispanic whites (odds ratio for participation among non-Hispanic blacks, 0.50 [95 percent confidence interval, 0.28 to 0.91]; odds ratio among Hispanics, 0.58 [95 percent confidence interval, 0.37 to 0.93]) and to have received experimental medications (odds ratios, 0.41 [95 percent confidence interval, 0.32 to 0.54] and 0.56 [95 percent confidence interval, 0.41 to 0.78], respectively). Patients who were cared for in private health maintenance organizations were less likely to participate in trials than those with fee-for-service insurance (odds ratio, 0.43 [95 percent confidence interval, 0.21 to 0.88]). Women were not underrepresented in research trials and had a similar likelihood of receiving experimental treatments.

Conclusions Among patients with HIV infection, participation in research trials and access to experimental treatment is influenced by race or ethnic group and type of health insurance.

Source Information

From the Center for Research in Patient-Oriented Care and the Quality Enhancement Research Initiative in HIV, Veterans Affairs San Diego Healthcare System, San Diego (A.L.G., D.K.L., S.A.B.); the University of California, San Diego, School of Medicine, La Jolla (A.L.G., D.K.L., S.A.B.); the University of California at Los Angeles, Los Angeles (W.E.C., K.C.H., R.M.A., T.N., M.F.S.); and RAND Health, Santa Monica (M.F.S., S.A.B.) — all in California.

Address reprint requests to Dr. Gifford at the Veterans Affairs San Diego Healthcare System and the University of California, San Diego, 3350 La Jolla Village Dr. (111N-1), San Diego, CA 92161, or at agifford{at}ucsd.edu.

Full Text of this Article

This article has been cited by other articles:

• Iltis, A. S. (2009). Payments to Normal Healthy Volunteers in Phase 1 Trials: Avoiding Undue Influence While Distributing Fairly the Burdens of Research Participation. J Med Philos 0: jhn036v1-jhn036 [Abstract] [Full Text]  
• Ding, E. L., Powe, N. R., Manson, J. E., Sherber, N. S., Braunstein, J. B. (2007). Sex Differences in Perceived Risks, Distrust, and Willingness to Participate in Clinical Trials: A Randomized Study of Cardiovascular Prevention Trials. Arch Intern Med 167: 905-912 [Abstract] [Full Text]  
• Silvestre, A. J., Hylton, J. B., Johnson, L. M., Houston, C., Witt, M., Jacobson, L., Ostrow, D. (2006). Recruiting Minority Men Who Have Sex With Men for HIV Research: Results From a 4-City Campaign. AJPH 96: 1020-1027 [Abstract] [Full Text]  
• Koehn, P. H. (2006). Transnational Migration, State Policy and Local Clinician Treatment of Asylum Seekers and Resettled Migrants: Comparative Perspectives on Reception Center and Community Health Care Practice in Finland. Global Social Policy 6: 21-56 [Abstract]  
• Mocroft, A, Neaton, J, Bebchuk, J, Staszewski, S, Antunes, F, Knysz, B, Law, M, Phillips, A N, Lundgren, J D (2006). The feasibility of clinical endpoint trials in HIV infection in the highly active antiretroviral treatment (HAART) era. Clin Trials 3: 119-132 [Abstract]  
• Gross, C.P., Krumholz, H.M. (2005). Impact of Managed Care on Cancer Trial Enrollment. JCO 23: 3811-3818 [Abstract] [Full Text]  
• van der Wouden, J C, Netuveli, G, Panesar, S S, Lasserson, T, Sheikh, A (2005). Recruitment of ethnic minorities to asthma studies * Authors' reply. Thorax 60: 257-257 [Full Text]  
• Hussain-Gambles, M. (2004). South Asian patients' views and experiences of clinical trial participation. Fam Pract 21: 636-642 [Abstract] [Full Text]  
• Lee, S J, Kavanaugh, A (2004). A need for greater reporting of socioeconomic status and race in clinical trials. Ann Rheum Dis 63: 1700-1701 [Full Text]  
• Moreno-John, G., Gachie, A., Fleming, C. M., NApoles-Springer, A., Mutran, E., Manson, S. M., PErez-Stable, E. J. (2004). Ethnic Minority Older Adults Participating in Clinical Research: Developing Trust. J Aging Health 16: 93S-123S [Abstract]  
• Moorman, P. G., Skinner, C. S., Evans, J. P., Newman, B., Sorenson, J. R., Calingaert, B., Susswein, L., Crankshaw, T. S., Hoyo, C., Schildkraut, J. M. (2004). Racial Differences in Enrolment in a Cancer Genetics Registry. Cancer Epidemiol. Biomarkers Prev. 13: 1349-1354 [Abstract] [Full Text]  
• Fitzpatrick, L., McCray, E., Smith, D. K. (2004). The Global HIV/AIDS Epidemic and Related Mental Health Issues: The Crisis for Africans and Black Americans. Journal of Black Psychology 30: 11-23 [Abstract]  
• Cargill, V. A., Stone, V. E., Robinson, M. R. (2004). HIV Treatment in African Americans: Challenges and Opportunities. Journal of Black Psychology 30: 24-39 [Abstract]  
• Sears, S. R., Stanton, A. L., Kwan, L., Krupnick, J. L., Rowland, J. H., Meyerowitz, B. E., Ganz, P. A. (2003). Recruitment and Retention Challenges in Breast Cancer Survivorship Research: Results from a Multisite, Randomized Intervention Trial in Women with Early Stage Breast Cancer. Cancer Epidemiol. Biomarkers Prev. 12: 1087-1090 [Abstract] [Full Text]  
• Walsh, C., Ross, L. F. (2003). Are Minority Children Under- or Overrepresented in Pediatric Research?. Pediatrics 112: 890-895 [Abstract] [Full Text]  
• Drukker, A., Feinstein, S., Rinat, C., Rotem-Braun, A., Frishberg, Y. (2003). Cadaver-Donor Renal Transplantation of Children in Israel (1990-2001): Racial Disparities in Health Care Delivery?. Pediatrics 112: 341-344 [Abstract] [Full Text]  
• Burchard, E. G., Ziv, E., Coyle, N., Gomez, S. L., Tang, H., Karter, A. J., Mountain, J. L., Perez-Stable, E. J., Sheppard, D., Risch, N. (2003). The Importance of Race and Ethnic Background in Biomedical Research and Clinical Practice. NEJM 348: 1170-1175 [Full Text]  
• Sung, N. S., Crowley, W. F. Jr, Genel, M., Salber, P., Sandy, L., Sherwood, L. M., Johnson, S. B., Catanese, V., Tilson, H., Getz, K., Larson, E. L., Scheinberg, D., Reece, E. A., Slavkin, H., Dobs, A., Grebb, J., Martinez, R. A., Korn, A., Rimoin, D. (2003). Central Challenges Facing the National Clinical Research Enterprise. JAMA 289: 1278-1287 [Abstract] [Full Text]  
• (2002). Research Participation Among U.S. HIV-Positive Patients. JWatch Infect. Diseases 2002: 9-9 [Full Text]  
• King, T. E. Jr. (2002). Racial Disparities in Clinical Trials. NEJM 346: 1400-1402 [Full Text]