Making a Choice With Your Adolescent: Next-Generation HIV Pre-Exposure Prophylaxis and Parents of Sexual and Gender Minority Adolescents in the United States

See Related Article on p. 625 See Related Article on p. 625 HIV continues to disproportionately impact adolescents and young adults (AYA) in the United States, and despite decreasing rates in some groups, progress has stalled among young adults, as well as Black and Latino men [[1]Centers for Disease Control and PreventionHIV surveillance report, 2019.http://www.cdc.gov/hiv/library/reports/hiv-surveillance.htmlDate: 2021Date accessed: April 30, 2023Google Scholar]. Concerningly, young transgender people have some of the highest rates of new HIV diagnoses, a trend that appears to be increasing substantially [[1]Centers for Disease Control and PreventionHIV surveillance report, 2019.http://www.cdc.gov/hiv/library/reports/hiv-surveillance.htmlDate: 2021Date accessed: April 30, 2023Google Scholar]. Pre-exposure prophylaxis (PrEP) for HIV prevention offers a potential approach to address HIV in these vulnerable populations, yet uptake has been slow among youth [[2]Barocas J.A. Gai M.J. Nurani A. et al.Initiation of HIV pre-exposure prophylaxis among youth in the United States, 2015–2018.AIDS Care. 2022; 35: 431-436Crossref Scopus (3) Google Scholar]. Different PrEP modalities, such as injectable and implantable formulations, have been in development for many years and have achieving strong efficacy and safety profiles in adults and adolescents [[3]Landovitz R.J. Donnell D. Clement M.E. et al.Cabotegravir for HIV prevention in cisgender men and transgender women.N Engl J Med. 2021; 385: 595-608Crossref PubMed Scopus (249) Google Scholar], with many other studies ongoing. These “next-generation” modalities go beyond the one pill, once a day option and show great promise as they take their place in the HIV prevention toolkit [[4]Ellison J. van den Berg J.J. Montgomery M.C. et al.Next-generation HIV pre-exposure prophylaxis preferences among men who have sex with men taking daily oral pre-exposure prophylaxis.AIDS Patient Care STDS. 2019; 33: 482-491Crossref PubMed Scopus (17) Google Scholar]. We will need all the tools we can get to dismantle the decades-long HIV epidemic, especially among young sexual and gender minority (SGM) people assigned male at birth (“males”), who bear the largest burden of HIV in the United States, and among whom progress in preventing HIV has stalled. In this issue of Journal of Adolescent Health, Owens et al. present an important study about parental perspectives on next-generation PrEP modalities for young SGM males [[5]Owens C. Carter K. Grant M.J. et al.An exploratory study of the PrEP modality preferences among a convenience sample of parents of sexual and gender minority adolescents.J Adolesc Health. 2023; 73: 625-631Google Scholar]. Parents are commonly cited as a barrier to PrEP uptake and adherence among youth [[6]Allen E. Gordon A. Krakower D. Hsu K. HIV preexposure prophylaxis for adolescents and young adults.Curr Opin Pediatr. 2017; 29: 399-406Crossref PubMed Scopus (22) Google Scholar]—and occasionally as a facilitator [[2]Barocas J.A. Gai M.J. Nurani A. et al.Initiation of HIV pre-exposure prophylaxis among youth in the United States, 2015–2018.AIDS Care. 2022; 35: 431-436Crossref Scopus (3) Google Scholar]—but there are surprisingly few studies of parents themselves related to HIV prevention among AYA, and a small number that include the topic of PrEP [[7]Rusley J.C. Durandeau E. Valente P.K. et al.HIV prevention studies among adolescents and young adults in the US: Where are parents and families?.in: Poster Presentation. Society of Adolescent Health and Medicine (SAHM) Annual Meeting (Virtual). 2022Abstract Full Text Full Text PDF Google Scholar]. This study adds to that growing literature and is a welcome addition, given evidence that parents generally remain key supports in the lives of most AYA, and most SGM males have their first sexual experience in adolescence [[8]Arrington-Sanders R. Morgan A. Oidtman J. et al.Context of first same-sex condom use and nonuse in young Black gay and bisexual males.J Res Adolesc. 2016; 26: 1009-1021Crossref PubMed Scopus (10) Google Scholar,[9]Glick S.N. Golden M.R. Early male partnership patterns, social support, and sexual risk behavior among young men who have sex with men.AIDS Behav. 2014; 18: 1466-1475Crossref PubMed Scopus (36) Google Scholar]. However, most parents in the United States engage in sexual health communication (SHC) with their adolescent that is focused on heterosexual behaviors, if it occurs at all [[10]Malacane M. Beckmeyer J.J. A review of parent-based barriers to parent–adolescent communication about sex and sexuality: Implications for sex and family educators.Am J Sex Educ. 2016; 11: 27-40Crossref Scopus (79) Google Scholar]. While there are very few studies about PrEP and parents of AYA, a few themes are emerging [[7]Rusley J.C. Durandeau E. Valente P.K. et al.HIV prevention studies among adolescents and young adults in the US: Where are parents and families?.in: Poster Presentation. Society of Adolescent Health and Medicine (SAHM) Annual Meeting (Virtual). 2022Abstract Full Text Full Text PDF Google Scholar]. First, parents can be both a facilitator and a barrier to PrEP uptake among AYA, and at least some parents are willing to support their adolescent using PrEP. How to determine where a specific parent is on the spectrum of PrEP “willingness” and how best to approach less willing parents is unclear. Second, SHC that is more “comprehensive” (open, honest, and frequent) seems to be at least somewhat related to increased PrEP awareness and willingness (with the opposite also being true, namely less comprehensive SHC is related to lower PrEP awareness and willingness). Finally, nearly all parents are interested in learning more about HIV prevention for their adolescent and PrEP in particular. Owens et al. are among the first to ask parents specifically about PrEP, to include parents of SGM male adolescents, and to gather both qualitative and quantitative data about parental perspectives. In addition to these insights about PrEP more generally, this is one of the very few studies to explore parents' perspectives on next-generation PrEP. As options for PrEP modalities expand to include injectables, implants, event-driven dosing (“2-1-1”), and more, the decision-making process around choosing a modality becomes complex. The authors note the similarities between PrEP and family planning (FP) modalities, where the data to inform the development of options counseling are quite robust. Less robust is the data around how best to involve parents in FP decision-making among AYA. For example, there is not a consensus on how and when to involve parents in FP decisions, much less how to counsel parents and AYA together on different FP modalities [[11]Guilamo-ramos V. Bowman A.S. Benzekri A. et al.Misalignment of sexual and reproductive health priorities among older Latino adolescents and their mothers.Contraception. 2019; 99: 179-183Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar,[12]Cheung E. Free C. Factors influencing young women’s decision making regarding hormonal contraceptives: A qualitative study.Contraception. 2005; 71: 426-431Abstract Full Text Full Text PDF PubMed Scopus (49) Google Scholar]. Because the vast majority of studies on parents and FP among AYA have been conducted with heterosexual and cisgender females, there are key factors affecting young SGM males that make the analogy between FP and PrEP imperfect at best. For example, there may be unique societal stigma and marginalization factors [[13]Saewyc E.M. Research on adolescent sexual orientation: Development, health disparities, stigma, and resilience.J Res Adolesc. 2011; 21: 256-272Crossref PubMed Scopus (297) Google Scholar] that impact SGM adolescents' ability to access health care and adhere to PrEP, and research in adults suggests masculinity and internalized homophobia play an important role in PrEP decision-making [14Jacques-Aviñó C. García de Olalla P. González Antelo A. et al.The theory of masculinity in studies on HIV. A systematic review.Glob Public Health. 2018; 14: 601-620Crossref Scopus (20) Google Scholar, 15Fields E.L. Bogart L.M. Smith K.C. et al.“I Always Felt I Had To Prove My Manhood”: Homosexuality, masculinity, gender role strain, and HIV risk among young black men who have sex with men.Am J Public Health. 2015; 105: 122-131Crossref PubMed Scopus (107) Google Scholar, 16Rivera D.B. Brady J.P. Blashill A.J. Traditional machismo, caballerismo, and the pre-exposure prophylaxis (PrEP) cascade among a sample of Latino sexual minority men.J Sex Res. 2021; 58: 21-28Crossref Scopus (11) Google Scholar]. At the same time, providers should have the flexibility and tools to provide PrEP in a confidential setting while also providing opportunities for youth to involve their parents in ways that facilitate health and safety, similar to how many of us use this approach with FP. One main finding of the study was that parents had a wide variety of PrEP modality preferences with a range of rationales. This underscores the complexity of decision-making by proxy but also suggests there is a risk of “choice overload” as has been seen in other products when consumers are faced with multiple options [[17]Chernev A. Böckenholt U. Goodman J. Choice overload: A conceptual review and meta-analysis.J Consum Psychol. 2012; 25: 333-358Crossref Scopus (355) Google Scholar]. It is also clear from this study that cost is a key factor in parents' PrEP decision-making, which makes sense given PrEP and the associated visits and testing can be prohibitively expensive for a variety of people in the United States, even those with health insurance [[18]Moore K. Dell S. Oliva M. et al.Does parental insurance impact willingness to take prep in adolescents & young adults?.J Adolesc Health. 2018; 62: S23-S24Abstract Full Text Full Text PDF Google Scholar,[19]Patel R.R. Mena L. Nunn A. et al.Impact of insurance coverage on utilization of pre-exposure prophylaxis for HIV prevention.PLoS One. 2017; 12e0178737Crossref Scopus (66) Google Scholar]. Also, most parents identified adherence a key factor in their decision-making around PrEP, which is consistent with many prior studies that cite adherence as the main barrier to PrEP effectiveness among AYA [[20]Wood S. Gross R. Shea J.A. et al.Barriers and facilitators of PrEP adherence for young men and transgender women of color.AIDS Behav. 2019; 23: 2719-2729Crossref PubMed Scopus (63) Google Scholar]. There are real developmental challenges around starting and continuing a routine like taking a daily medication at a time when life is chaotic and ever-changing. Despite the shortcomings of the FP analogy described above, we are hopeful that future interventions will evaluate the role of switching between PrEP modalities—such as from daily oral to event-driven dosing—which is similar to how many AYA on birth control toggle between daily oral and emergency contraception. There are many important caveats to this study, most of which the authors address and are related to the exploratory nature of their work. A less discussed factor is the study's focus on Texas and the structural barriers to health care for SGM adolescents in the state. The authors are based there, and they note the state contains many counties that are targets for the Centers for Disease Control and Prevention's End the HIV Epidemic initiative due to high rates of HIV transmission. However, it is also important to consider the political and social context of the state at this moment in history, especially for LGBTQ+ youth and their families. Perhaps more than any state in the United States, Texas has long been a place where conservative policymakers have worked to instill their values into public policy [[21]Texas A&M; Can’t Ban Gay Group, High court says - Los Angeles times.https://www.latimes.com/archives/la-xpm-1985-04-01-mn-28242-story.htmlDate accessed: April 24, 2023Google Scholar,[22]Lawrence V. Texas | Wex | US Law | LII/Legal information institute.https://www.law.cornell.edu/wex/lawrence_v._texasDate accessed: April 24, 2023Google Scholar] and especially health care policy; a recent example was a federal court judge who ruled that requirements put in place by the Affordable Care Act to protect access to PrEP [[23]Judge rules against required coverage of HIV prevention drug | AP News.https://apnews.com/article/us-supreme-court-health-religion-texas-fort-worth-2c23f0c2b62082e9308963018fc018fbDate accessed: April 23, 2023Google Scholar] violated employers first amendment rights to act in accordance with their religious beliefs. More recently, Texas policymakers at multiple levels have attacked gender-affirming care for adolescents, including a directive of the governor to prosecute parents who allow their adolescent to receive such care [[24]American Civil Liberties Union (ACLU)Texas Wants to take trans kids from their supportive parents. We’re suing.https://www.aclu.org/news/lgbtq-rights/texas-wants-to-take-trans-kids-from-their-supportive-parents-were-suingDate accessed: April 23, 2023Google Scholar,[25]Texas lawmakers are going after gender-affirming care in 2023 session | TPR.https://www.tpr.org/government-politics/2023-01-21/texas-lawmakers-are-going-after-gender-affirming-care-in-2023-sessionDate accessed: April 23, 2023Google Scholar]. A variety of groups have condemned the politicization of gender-affirming care in the United States, including the Society, and we enthusiastically agree with these statements [[26]AMA reinforces opposition to restrictions on transgender medical care | American Medical Association.https://www.ama-assn.org/press-center/press-releases/ama-reinforces-opposition-restrictions-transgender-medical-careDate accessed: June 1, 2023Google Scholar,[27]Statement on the politicization of gender-affirming care and threats of violence against clinicians – SAHM.https://www.adolescenthealth.org/SAHM-News/SAHM-Statement-about-the-Politicization-of-Gender.aspxDate accessed: June 1, 2023Google Scholar]. Unfortunately, the targeting of LGBTQ+ individuals by policymakers in Texas is unlikely to change in the near future. We call on brave leaders in Texas and elsewhere to put the health of young people at the center of policies that impact them, and also to address the structural barriers to care with evidence-based policy-level solutions, not harmful rhetoric and actions that further marginalize SGM youth and their parents. One silver lining of this moment is that thoughtful researchers like Owens and colleagues are developing interventions that can successfully engage parents in helping protect their AYA from HIV in these states with hostile environments, and which are likely to be broadly successful elsewhere, including states where sexuality and gender are less politicized. Indeed, strong parent-adolescent relationships and sexual health communication are both even more vital where local and state policies create barriers to health information and evidence-based health care. Some unanswered questions for future study include: how do we reach parents whose adolescent may benefit from PrEP but are having little or no SHC? How do we support SGM adolescents in starting PrEP if they are not out to their parents about their sexual orientation and/or gender identity? How might parent preferences for different PrEP modalities be modified by the strength of the relationship and SHC with their adolescent? As with other health-related behavior changes, the answer to these questions lies in a developmentally tailored approach that meet parents and AYA where they are, builds motivation to engage in healthier and lower risk behaviors, and provides clear and concise information about the key factors that influence PrEP decision-making such as side effects and adherence. In this vein, we acknowledge that younger adolescents who are at very high risk for HIV may be a unique population requiring a more intensive and multidisciplinary approach [[28]Fitch C. Haberer J.E. Serrano P.A. et al.Individual and structural-level correlates of pre-exposure prophylaxis (PrEP) lifetime and current use in a nationwide sample of young sexual and gender minorities.AIDS Behav. 2022; 26: 3365-3377Crossref Scopus (2) Google Scholar]. For example, adolescents involved in sex trafficking, those who are housing unstable or homeless, and those with a history of sexual or physical abuse may be at high risk for HIV given their sexual and substance use behaviors [[29]Tanner M.R. Miele P. Wendy C. et al.Preexposure prophylaxis for prevention of HIV Acquisition among adolescents: Clinical considerations, 2020.MMWR Recomm Rep. 2020; 69: 1-12Crossref PubMed Google Scholar]. These adolescents also often face intersecting barriers to PrEP adherence, including lack of trusted adult and social support [[30]Bonett S. Bauermeister J. Meanley S. Social identity support, descriptive norms, and economic instability in PrEP engagement for emerging adult MSM in the United States.AIDS Care. 2022; 34: 1452-1460Crossref Scopus (3) Google Scholar]. Finally, we need interventions that can be implemented and scaled up in real-world settings, which will require us to invest in implementation models and approaches to providing PrEP that include next-generation PrEP. At the same time, we must continue to apply a health equity lens [[31]Woodward EN Sonia Singh R Ndebele-Ngwenya P et al.A more practical guide to incorporating health equity domains in implementation determinant frameworks.Implement Sci Commun. 2021; 2: 61Crossref PubMed Scopus (25) Google Scholar] to our work so that next-generation PrEP implementation does not widen the PrEP uptake gap among poor, young, Black, and/or Latinx populations [[32]Pilgrim N.A. Evans T.M. Czarnogorski M. A layer plus approach to implementation research and collaboration for long-acting injectable pre-exposure prophylaxis for HIV prevention.Health Promot Pract. 2022; 23: 912-915Crossref Scopus (7) Google Scholar,[33]Valente P.K. Operario D. Rusley J. et al.The need for a health equity framework in next-generation pre-exposure prophylaxis implementation.Lancet HIV. 2023; 10: e266-e268Abstract Full Text Full Text PDF Scopus (3) Google Scholar]. To end the HIV epidemic in the United States, we must grow our prevention efforts among AYA using a health equity approach to implementation of evidence-based interventions. As biomedical advances continue to make PrEP modalities safer and easier to adhere to, and technological advances make it easier for adolescents to learn about PrEP and adhere to it, we must also engage parents in supporting their youth and policymakers in removing structural barriers to PrEP. J.C.R. is supported by the NIMH (1K23MH123335); and Bradley Hospital/Hasbro Children's Hospital (#20425).