Inaccessible Miracles? Women's access to HIV/AIDS medications.

Abstract

The Center for Women Policy Studies designed this study to learn about women's experiences with access to HIV/AIDS medications. Eighty-five women living with HIV/AIDS in the Washington, DC metropolitan area responded to an anonymous questionnaire. Women in the study were for the most part knowledgeable about various HIV/AIDS medications, including protease inhibitors, and about ways to gain access to these drugs. However, although most of the women in the study (77 percent) reported taking HIV/AIDS medications, women were far more likely to take single retroviral medications than combination drugs or protease inhibitors. Women also were most likely to be covered by Medicaid rather than by private insurance.

Introduction

As many recent media reports attest, HIV/AIDS medications in general and protease inhibitors in particular have been widely heralded as miracle drugs for people living with HIV/AIDS (Carton, 1996; Dunlap, 1996). Reports of treatment failures notwithstanding (Stolberg, 1997a), new HIV/AIDS medications have had a dramatic impact on the length and quality of life for many people living with HIV/AIDS. Indeed, the Centers for Disease Control and Prevention (CDC) (1997) credit much of the recent decline in AIDS mortality to "improvements in medical care, the use of combination therapy with antiretroviral agents, ... increasing use of prophylactic drugs to prevent secondary AIDS-OIS... and the widespread availability of protease inhibitors" (p. 172). Yet, a closer examination of the federal agency's statistics shows that these medications are not necessarily proving to be as miraculous for women as they have proven to be for men. While AIDS deaths declined among men by 15 percent in 1996, the death rate for women in creased by 3 percent during the same period (CDC, 1997).

In 1997, the Center for Women Policy Studies conducted a series of four focus groups with 29 women living with HIV/AIDS to learn about their health care needs and to include women's voices in HIV/AIDS policy discussions. Many of the women recounted barriers to various health care services, including access to medications, as a primary concern. Specifically, women reported that they often had to seek care from multiple sources, received unpleasant care from health care providers, and often interacted with health care providers who were ignorant about issues relevant to women living with HIV/AIDS (Center for Women Policy Studies, 1997a).

The focus group findings -- and the gender differences in HIV/AIDS mortality despite the promising effects of protease inhibitors -- prompted the Center to design this pilot study to examine more thoroughly women's experiences gaining access to HIV/AIDS medications, including protease inhibitors. Specifically, we wanted to learn what women knew about HIV/AIDS medications, how women's relationships with their health care providers influenced their access to and utilization of HIV/AIDS medications, how and where women received and paid for their medications, and the formal and informal networks that women used to secure their medications.

Although we were interested in learning of the financial impediments to HIV/AIDS medications, this was not the main focus of our study. Indeed, research has demonstrated that factors other than being able to pay for one's medication often influence access to drugs (Schecter et al., 1994; Weissman et al., 1994). Based on information that women provided in our focus groups, such as their problems with transportation to get medications, we hoped to learn about additional factors that prevent or limit women's ability to get their medications. Moreover, we wished to explore how factors such as race and gender may influence women's access to HIV/AIDS medications.