Preparing for PrEP: Social and Economic Barriers to the Accessibility of Pre-Exposure Prophylaxis for HIV Prevention

Abstract

In July 2012, the Food and Drug Administration approved Truvada for use as preexposure prophylaxis (PrEP), a daily medication taken orally to protect individuals against HIV infection. Subsequently, the Centers for Disease Control and Prevention recommended that adults at substantial risk of HIV infection begin taking PrEP in addition to traditional risk reduction methods, such as consistently using condoms. This thesis poses the following research questions: What are the implications of PrEP for HIV prevention among gay and bisexual men in the U.S.? Additionally, in cases where PrEP has shown a protective effect against HIV and is covered by insurance, what has prevented gay and bisexual men, who stand to benefit most from PrEP, from accessing it in large numbers? This thesis hypothesizes that PrEP is another efficacious “arrow in the quiver” of HIV prevention with particular potential to mitigate HIV infection rates among black and Latino gay and bisexual men. However, for PrEP’s benefits to be realized among these groups several barriers to access must be addressed. This thesis adopts a qualitative methodology to answer these questions. First, it evaluates the scientific literature on PrEP for evidence of risk compensation, adherence, and drug resistance, three of the principal concerns of those who question the value of PrEP. After demonstrating the lack of evidence for these phenomena in clinical studies of PrEP, it turns to identifying the basis of the arguments against PrEP as the stigmatization of marginalized identities, according to the phenomenon that sociologist Erving Goffman terms the “spoiling of identity.” Next, it applies theories of decision-making from behavioral economics and cognitive psychology to argue a theoretical basis for PrEP’s effectiveness. This analysis was informed through semi-structured interviews with scientists and advocates who have led efforts to develop PrEP. A discussion of the economic barriers to accessing PrEP follows. To date, most private insurance companies, along with public insurance programs like Medicare and Medicaid, cover partially the cost of PrEP. However, there are reports of private insurance companies denying coverage for PrEP initially as well as requiring high rates of coinsurance from patients. As a result, this analysis concludes that PrEP may be unaffordable for many with private insurance and plans purchased on state exchanges, which feature lower premiums but high deductibles and co-payments for specialty drugs such as PrEP. Medicaid and Medicare offer less restricted coverage of PrEP, but in states that have not expanded Medicaid there are fewer options for low-income people to access PrEP. Gilead, the manufacturer of Truvada, offers to assist patients living up to 500% of the federal poverty level with the drug costs of PrEP. This thesis argues that more public funding is needed to facilitate access to PrEP. Finally, this thesis presents case studies of two recently launched programs intended to improve access to PrEP. The first is Washington State’s PrEP Drug Assistance Program, which pays the co-payment for people with insurance or the full price of Truvada for the uninsured. This program has already been reproduced in New York and Illinois and serves as a template for other states. The second is community-based organization Harlem United’s compendium of PrEP programming, which includes a PrEP task force and research partnership with Columbia University. Despite rising awareness of PrEP among gay and bisexual men, uptake remains low. The Patient Protection and Affordable Care Act will facilitate access in states that are expanding Medicaid but advocacy is needed to increase demand and to put pressure on private insurance companies, local and state health departments and governments to ensure PrEP is included in formularies and made affordable.