PrEP and our youth: implications in law and policy.

• Author: Burda, Jason Potter
• Position: Abstract through II. Ensuring PrEP Accessibility Without Parental Involvement A. State Consent Laws 1. Minor Consent Pursuant to STI Consent Statutes, p. 295-331

Abstract

Truvada[R] an antiretroviral medication originally approved to treat human immunodeficiency virus (HIV), is the first drug to receive FDA approval for use by HIV-negative individuals to actually prevent infection. The prophylactic use of an antiretroviral such as Truvada is a pharmacological prevention method called "HIV pre-exposure prophylaxis " (or "PrEP"). With an efficacy of over ninety percent when used as prescribed, Truvada as PrEP has been embraced by the public health community, and implementation is under way across the United States. Truvada as PrEP is currently indicated for adult use only, but it may also be prescribed off-label to at-risk youth.

In this Article, I draw upon public health, neurodevelopmental, and psychosocial research to argue that PrEP is a necessary tool in the fight against HIV among youth. Thus, exploring the challenges of delivering PrEP to at-risk youth is essential. As a general rule, states mandate the involvement of parental figures in the healthcare of minors. However, recognizing that parental involvement in sensitive matters such as sexually transmitted infection (STI) treatment is a barrier to reaching youth, legislators have crafted limited exceptions to this rule. With the goal of locating inroads to confidential PrEP access in these exceptions, I survey STI, emancipation, and emergency consent laws, develop frameworks for navigating them, and suggest that STI laws offer the most promise of offering confidential PrEP access. Further, I posit that providing PrEP at clinics receiving Title X family planning funds, which must offer confidential services to youth, may be a national means of achieving that end. Yet guaranteeing accessibility is only one piece of the delivery puzzle; guaranteeing acceptability is a second. As such, I propose the addition of PrEP to sexual education programming funded by grants from the ACA's Personal Responsibility Education Program, which would ensure that curricula include PrEP alongside more established prevention methods such as condoms. Overcoming these barriers will pave the way for rapid uptake of future HIV prevention innovations for and among the most vulnerable: our youth.

INTRODUCTION

Of the nearly 50,000 new HIV infections in the United States every year, the United States Centers for Disease Control and Prevention (CDC) estimates that, as of 2013, over twenty percent of those infections were among youth. (1) That year, the CDC estimated that 62,400 youth had HIV in the United States, and over half of those youth (n=32,000) were living with an undiagnosed infection. (2) These data reveal that the HIV crisis among youth is both significant and stealthy. Yet the obstacles to effective HIV prevention among youth are growing. Temporally removed from the AIDS crisis and less fearful of HIV because treatment has advanced so rapidly and so publicly, today's youth are increasingly resistant to traditional HIV prevention models rooted in behavioral modification, risk reduction, and condom education. In short, youth in the United States are on a collision course with HIV, and incorporating new, sustainable prevention modalities as part of a multifaceted HIV prevention approach will be necessary to avoid greater impact.

HIV pre-exposure prophylaxis (PrEP) has proved a necessary tool in the at-risk adult population, and implementation is underway on a broad scale. PrEP is a pharmacological HIV prevention modality (3) involving prescription of antiretroviral drugs (ARVs), traditionally used to treat those living with HIV, to at-risk HIV-negative individuals to avoid infection. The only ARV currently approved for a PrEP indication is a daily dose of Truvada, manufactured exclusively by Gilead Sciences and available by prescription. (4)

With an effectiveness of over ninety percent in the adult population when taken as prescribed, PrEP has received widespread federal and state endorsements. There is some indication that recent HIV prevention initiatives incorporating PrEP may be working to curb infections among adults. (5) However, given the significant rate of HIV infection among youth, attention has begun to shift to operationalizing PrEP for those youth whose behavior or circumstances puts them at high risk of contracting HIV (herein, "at risk" or "at-risk youth").

Experts are only beginning to understand the magnitude of the challenges facing those seeking to deliver PrEP to youth, (6) but the same base obstacles facing those seeking wider implementation of PrEP among adults also face those seeking to operationalize PrEP for youth. In my previous article, When Condoms Fail, I identified two hurdles to implementation of PrEP among adults: accessibility and acceptability. (7) PrEP must be accessible to those most at risk of HIV infection. As such, the therapy must be "procurable with little complication or delay." (8) Furthermore, PrEP must be acceptable to those who stand to benefit from it. This involves eliminating the stigma that attaches to those who use it. For youth, these challenges have added complexity and an unmistakably legal dimension.

Pursuant to laws in every United States jurisdiction, the majority of youth in the United States from ages thirteen to eighteen, a critical population in the fight against HIV, are unable to operate independently of their parents, guardians, and other adult caregivers (9) in most healthcare decisions. Parental involvement and consent, though appropriate in many circumstances, can result in delays in care, breaches of confidentiality, and the eschewing of care entirely in the context of sexual healthcare. For example, approximately half of all female adolescents would prefer to forego sexual healthcare services than permit their providers (10) to notify a parent of their decision to take birth control. (11) Moreover, youth whose circumstances put them at risk of HIV infection--such as detained youth, homeless or unstably housed youth, young men who have sex with men, serodiscordant youth couples, and youth who share syringes--tend to eschew healthcare at a higher rate than average. (12) Thus, in the area of HIV prevention advocacy and policy, developing sustainable solutions to reach at-risk youth without compromising their privacy has become a priority. Developing such solutions will require not just clever public health advocacy and policymaking, but also clever lawyering and lawmaking.

In this Article, I study PrEP as a vehicle for exploring the major challenges to operationalizing pharmacological HIV prevention for at-risk youth. In Part I, I review adolescent (13) psychosocial and neurodevelopmental science to argue that traditional models of HIV prevention, without the incorporation of new, sustainable solutions, have a high likelihood of failure among the youth population and have, in fact, failed to curb HIV incidence among youth. As such, PrEP is a much-needed addition to the youth HIV prevention toolbox. In Part II, I focus on the accessibility challenge of operationalizing PrEP for youth presented by parental consent and notification requirements, and review state exceptions to the general rule that minors may not consent to their own healthcare. I argue that the surest avenue to operationalizing PrEP for unaccompanied, self- consenting minors without breaching confidentiality is by concentrating on STI consent laws at the state level, for which I conduct a comprehensive survey, and on clinics receiving Title X funding, at the federal level. In Part III, I focus on the acceptability challenge. I argue that local, state, and federal governments play a role in ensuring that sexual education curricula address the complete spectrum of available HIV prevention methods--including PrEP--so that, in their providers' offices, at-risk minors are familiar with PrEP therapy, view it as a legitimate prevention modality, and have the knowledge to make reasoned decisions about which prevention options work for them.

1. The Necessity of PrEP

   "If there is anything that can be safely said about what is new in the minds of adolescents, it is that they ... have sex on their minds."

   --Carol Gilligan and Lawrence Kohlberg (14)

   Adolescence, life's second stage marked by the onset of puberty, (15) is a "transitional social category," (16) a time of significant physiological, neurological, and psychosocial development. (17) Alongside the physical maturation of secondary sex characteristics, adolescents experience increased "neurological plasticity," where the mind develops increased cognitive abilities. Adolescence is also marked by vigorous behavioral changes, (18) including an increase in awareness of--indeed, fixation on--peer relationships, and in particular the sexual aspect of those relationships. (19) At the same time, adolescents grow more removed from parents and other authority figures. (20) At its crux, adolescence is a drive toward autonomy replete with personal and inter-personal growth. (21)

   This drive toward autonomy during adolescence can engender life-threatening consequences. (22) Mortality rates drastically increase during adolescence, (23) and the behavior causally related to this mortality increase is risk-taking. (24) Concentrating primarily on adolescent sexual risk-taking, the most concerning period for such behavior is mid-adolescence, specifically between the ages of fifteen and seventeen. (25) This age span is an especially important time for preventive sexual healthcare and harm reduction. According to Dr. Laurence Steinberg:

   [R]eward sensitivity, preference for immediate rewards, sensation-seeking, and a greater focus on the rewards of a risky choice all increase between pre-adolescence and mid-adolescence, peak between ages 15 and 17, and then decline. In contrast, controlling impulses, planning ahead, and resisting peer influence all increase gradually from pre-adolescence through late adolescence, and in some instances, into early adulthood. (26) As...