Pre-Exposure Prophylaxis for Homeless Youth: A Rights-Based Perspective

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Journal of Adolescent Health
May 2019 Volume 64, Issue 5, p547-672
Pre-Exposure Prophylaxis for Homeless Youth: A Rights-Based Perspective
Diane M. Straub, M.D., M.P.H.
Department of Pediatrics, University of South Florida College of Medicine, Tampa, Florida

Franklin Delano Roosevelt’s words come to mind when we consider the marked health inequities in access to and use of HIV pre-exposure prophylaxis (PrEP) among youth experiencing homeless (YEH). Delivered over 80 years ago in his inaugural address, Franklin Delano Roosevelt reminds us of the obligations of providers and healthcare systems and states to address these types of extreme health inequities.

YEH are simultaneously one of the populations most at risk for HIV infection and, as demonstrated by Santa Maria et al. in this issue of the Journal of Adolescent Health, one of the least likely to have access to, or to use, PrEP. Adolescent and young adults (AYA) aged 13–24 years comprised 25% of the approximately 32,300 new infections diagnosed in the U.S. in 2017 [2, 3]. Internationally, approximately 590,000 AYA aged 15–24 years were newly infected with HIV in 2017 [4]. In the U.S., many of the highest risk groups—young men who have sex with men; youth of color; heterosexually active black young women; young adults who inject drugs, engage in transactional sex, or are sexually exploited; and transgender young women who have sex with men—disproportionately experience homeless [3, 5, 6]. Indeed, the associated overlapping vulnerabilities likely contribute to estimates that YEH may be upward of 10 times more likely to be HIV infected than their housed peers [7, 8].

For populations at risk for HIV, PrEP is potentially lifesaving. Clinical trials of PrEP have demonstrated efficacy in subpopulations of over 90% when taken daily [9]. Yet, those at highest risk are not getting it. In 2015, only 1% of the estimated approximately 500,000 African Americans who could potentially benefit were prescribed PrEP [10], and in 2016, only 11% of PrEP users in the U.S. were aged <25 years, but that age group constituted 21% of all new infections [11]; this begs the question of how much worse access to PrEP may be in populations with overlapping vulnerabilities such as YEH? Santa Maria evaluated HIV risk, HIV risk perception, and knowledge of and willingness to use PrEP among a sample of 1,427 YEH in seven U.S. cities. Unsurprisingly, risk for HIV acquisition was high, with 84% of participants meeting the study group’s measure of PrEP eligibility. Although knowledge of PrEP was low (29%), 59% of the sample reported that they would be willing to take PrEP. This study demonstrates a staggering unmet need and clear health inequity.

Human rights frameworks provide an ethical approach to addressing the inequities in access to HIV prevention interventions for YEH. The Convention on the Rights of the Child identifies adolescent access to sexual health information and services as a basic human right, advocating that States have an obligation to ensure “access to HIV testing and counseling, evidence-based HIV prevention and treatment programs, and sexual and reproductive health services” [12].

But how do we, as researchers, policymakers, and medical and service providers, begin to address this obligation to address HIV health inequities for YEH? Barriers to PrEP are daunting [11]; in YEH, they seem insurmountable. Compared with their housed peers, YEH experience loss of identification, lack of health insurance and access to consistent healthcare, unstable or nonexistent income, inadequate transportation, and elevated levels of stigma [13, 14]. Our first step is to explicitly recognize the critical importance of homelessness as a social determinant of health driving risk and access. This requires recognition of and investment in addressing the multiple vulnerabilities of YEH, including substance abuse, mental health disorders, and education and vocational needs. Clinical and public health approaches will need to explicitly consider these social determinants to address issues such as funding for medications, legal obstacles to confidential care for minors, transportation, and colocation of mental health services.

A frequent criticism of the human rights–based approach is that individuals should take personal responsibility for their own health, particularly if they are co-responsible for their risk for disease, which is a pervasive attitude toward HIV infection [15]. Santa Maria’s data are less than encouraging [2]. Although 84% of participants were deemed at risk for HIV acquisition, only 66% had a similar perception of risk, only 47% were worried about getting HIV, only 14% were actively trying to protect themselves from HIV infection, and only about half reported that they would take a daily pill if they knew it would greatly reduce their chance of getting HIV. Why the disconnect? The authors suggest that issues related to adolescent brain development and the impact of high levels of trauma in this population play a role, and other literature supports this [16]. Yet functional magnetic resonance imaging is not needed to understand this. In 1943, Maslow described a hierarchy of needs, which theorized that higher level needs such as prevention and medical care are only addressed after basic physiological (food, shelter, clothing) and safety are addressed [17]. By definition, YEH are not able to meet even these most basic and immediate needs. It is not surprising that they have difficulty with prevention, a future-oriented behavior. Here, we as a society fail from a human rights perspective. Youth have a basic human right to housing and food, as well as protection from violence [12], and we are unlikely to increase uptake of PrEP until we address these larger social determinants of health.

In its 2018 position statement on PrEP, the Society for Adolescent Health and Medicine recommends [18]:
1.Increased access to PrEP for AYAs through youth-focused PrEP research and legislative advocacy on minors’ consent, confidentiality, and healthcare financing.
2.Incorporation of PrEP information into comprehensive sexual health educational and screening tools coupled with developmentally appropriate, PrEP skills–building interventions to increase AYA adherence.
3.The development of evidence-based, developmentally appropriate, culturally sensitive, and accessible PrEP service delivery models as part of routine care offered to AYAs.

Drawing on human rights frameworks and Maslow’s work, we would like to take this a few steps forward. First, these same standards should apply equally for additional biomedical prevention interventions, specifically nonoccupational postexposure prophylaxis for HIV. Individuals seek nonoccupational postexposure prophylaxis due to acute events that may dramatically increase their risk for HIV. This is certainly a likely scenario in the life of a YEH and one which may open the door to additional services, potentially allowing them to address basic needs such as homelessness, access to food, and safety, and, in so doing, increase their ability to engage in prevention such as PrEP [19]. Second, in our attempts to increase the overall uptake of PrEP, we need to focus on YEH and other AYA at highest risk. Clearly, there is a mountain of obstacles to providing “enough” for this population that has “too little.” To borrow again from FDR, perhaps we need a new New Deal for our YEH.
References at title link above


Original Articles
Knowledge and Attitudes About Pre-Exposure Prophylaxis Among Young Adults Experiencing Homelessness in Seven U.S. Cities
Diane Santa Maria, Charlene A. Flash, Sarah Narendorf, Anamika Barman-Adhikari, Robin Petering, Hsun-Ta Hsu, Jama Shelton, Kimberly Bender, Kristin Ferguson
Published online: September 22, 2018