Kisteneff AV, O’Connell KA, Caves K, . Addressing disparities in HIV among adolescents and young adults in the united states. HPHR. 2021:38.
Sexual and ethnic minority adolescents and young adults (AYA) continue to carry a disproportionate burden of new HIV diagnoses. To mitigate this burden, targeted interventions are needed. Comprehensive, medically accurate sex education should replace abstinence-only education. Primary care physicians and pediatricians can identify more AYA in need of increased HIV testing by incorporating routine discussions about sex with every patient. To improve medication adherence and retention in care, HIV positive AYA need access to supplemental services. Dedicated HIV prophylaxis services and emergency departments stocked with HIV post-exposure prophylaxis will improve access and prevent HIV seroconversion. More can be done to prevent HIV in vulnerable AYA populations.
In the United States (US), as of 2019, adolescents and young adults (AYA) ages 13-24 account for the highest rate of new Human Immunodeficiency Virus (HIV) infections among all age groups.1,2 AYA have poorer outcomes on each step of the HIV care continuum when compared to adults over 25.1 Approximately 60% of AYA are unaware of their HIV infection and AYA continue to be the least likely of any age group to be retained in care and achieve viral suppression.1
Per the Centers for Disease Control and Prevention (CDC), populations at greatest risk for HIV include men who have sex with men (MSM), African Americans, Latinos, and transgender individuals.3 In 2018, among all AYA, transmissions via sexual contact were highest among Black and Hispanic males compared to other racial/ethnic groups.1,2The majority of new diagnoses in this age group are among males (87%), with almost all (92%) reporting male to male sexual contact as the mode of transmission.2 Among transgender individuals, approximately 1 in 3 new HIV diagnoses are in AYA and from 2015 to 2019 the number of HIV diagnoses increased for transgender persons aged 20-24; the highest compared to all other age groups.1,2 Among transgender AYA, the largest percentage of diagnoses are within the Black and Hispanic population (46% and 35%, respectively) compared to 13% among white AYA .1
It is clear HIV remains an issue in the above populations, likely a direct result of a combination of factors including structural racism, stigma, poverty, prejudice, and youth-specific cultural challenges.4 This article discusses racial and sexual minority disparities in HIV education, testing, treatment, and prophylaxis and explores ways to address these disparities. Interventions are urgently needed to reduce the disproportionate burden of HIV within these populations.
Sex education in the US is inconsistent and inadequate. Currently, only 18 states require “medically accurate” content and among them, definitions of medically accurate content vary widely.5 One definition from the Public Leadership Institute is “information supported by the weight of research conducted in compliance with accepted scientific methods and recognized as accurate and objective by leading professional organizations/agencies with relevant expertise such as the American College of Obstetricians and Gynecologists or the CDC,” but their standard is not uniformly reflected in US sex education programs.6 Only 27 states and the District of Columbia (DC) require both sex education and HIV education.7 Only 19 states require information on condoms as part of sex education, and it is not known if the information is enough to ensure effective condom use.7 Only 10 states and DC require inclusive education about sexual orientation.7 Most US states (28 total) require that abstinence be emphasized .7
Sexual education has a variety of influences that act via federal, state, and local levels. Education is largely a state and local responsibility as state governments arbitrate sex education and have the right to create their own mandates on whether sex education is required, set guidelines for content, choose curricula, and approve textbooks. Therefore, the accuracy and effectiveness of an adolescent’s sex education is determined largely by where youth live. The federal government does not have a direct role in sexual education, but the Department of Health and Human Services allocates grant money to fund various sex education programs including abstinence-only sex education programs. Although abstinence-only programs have been found to be largely ineffective, $50 million is spent every year to fund abstinence-only sex education.8
Abstinence-only programs emphasize the advantage of refraining from nonmarital sexual activity to improve prospects and avoid poverty.9 It is often specified that the education should not include demonstrations, simulations, or distribution of contraceptive devices. Historically, abstinence-only education withholds information necessary to reduce HIV risk.10-12 Black students are more likely to receive abstinence-only education when compared to their white counterparts, leaving them ill-prepared to prevent new HIV infections.11 This is especially troubling because, in 2017, Black youth accounted for 51% of new HIV infections.13
Programs focused on abstinence may emphasize heterosexual relationships as the expected societal norm. Thus, abstinence-only education does not consider the educational needs of lesbian, gay, bisexual, transgender, and questioning (LGBTQ) youth and Black MSM continue to experience higher HIV incidence than their white peers.11,14 For sexual minority youth to experience comparable health outcomes to their non-LGBTQ peers, learning environments must be medically accurate and inclusive of their experiences. Restricting sex education to abstinence-only programs contributes to misinformation and stigma, preventing AYA from seeking information, guidance, and care on these topics.9 Education that fails to prepare young people, particularly those shown to be most vulnerable, is ethically concerning.
Despite abstinence-only education, young people are having sex. Two-thirds of teenagers have had sex by the time they graduate high school, and of those, nearly 40% did not use a condom at their last sexual encounter.15 The 2019 US Youth Risk Behavior Survey found prevalence of condom use was lowest among Black students when compared with Hispanic and white students.16,17A complex mix of socio-economic factors accounts for this difference.10 Among these, inadequate sex education and low prevalence of condom use put Black and Hispanic AYA at higher risk than their white peers for HIV. Additionally, teaching abstinence as the only means of pregnancy and sexually transmitted infections (STI) prevention is more common in the South than in the Northeast (30% vs. 17%).18 Unsurprisingly, in 2019, the highest rates of new HIV diagnoses were reported in the South indicating that adolescents in areas most in need of comprehensive sex education are not receiving it.13,18 Sex education programs should include accurate information addressing prevention, transmission, symptoms, and treatment of sexually transmitted infections (STIs). This information should be inclusive of cultural backgrounds, sexual orientations, and gender identities to prevent transmission of STIs in those most at risk.9
Medical professionals support comprehensive sex education, offering complete and accurate information to mitigate HIV transmission.2,11 Beginning in 2010, two sources of federal funding for comprehensive sex education became available, the Personal Responsibility Education Program and the President’s Teen Pregnancy Prevention Initiative.8 Both programs provide funding to schools and public agencies that implement medically accurate, evidence-based programming that covers both abstinence and contraception.8 Despite funding opportunities that may encourage schools to teach comprehensive sexual education, inconsistency of implementation within each state is problematic.
The medical community, HIV prevention advocates, and parents should consider lobbying lawmakers for more inclusive, comprehensive sex education programs. In addition to expanding the federally supported programs above, we support the implementation of consensus programming to replace abstinence-only education; one such program is the Professional Learning Standards for Sex Education.19 It is a comprehensive program that advocates uniform sexual health education including anatomy and physiology, gender identity, interpersonal relationships, consent, and tools to minimize HIV risk.19
Homelessness is the greatest predictor of youth entry into the juvenile justice system.20 Among homeless AYA, the estimated HIV prevalence ranges from 3-16%.2 LGBTQ youth represent 40% of the homeless youth population.21 Increasing their risk for both criminalization and HIV, homeless LGBTQ youth experience higher rates of trafficking and sex work.22,23
Racial disparities in homeless LGBTQ youth contribute to the overrepresentation of AYA of color in juvenile facilities. One survey found 31% identified as Black, more than twice the Black youth population at the time. In 2015, 2 out of 3 youths in juvenile facilities were either Black, Hispanic or American Indian.24,25 Given the established disproportionate HIV burden among Black LGBTQ youth, the intersection of HIV and law enforcement is apparent.
There is global recognition of law enforcement’s role in HIV prevention.26-28 Though recognized as necessary, data on law enforcement’s role in HIV prevention in the US is sparse. The American Civil Liberties Union has argued for decriminalizing sex work to reduce HIV transmission.29 The issue of decriminalizing sex work is complex but should be explored as a means to reduce HIV transmission among certain populations, including racial and sexual minority AYA. Among the circumstances worsened by the illegality of sex work, high rates of violence against sex workers, police harassment in the form of using possession of condoms as evidence of sex work, poor working conditions, and a lack of access to HIV prevention and care contribute to increasing the risk of infection among sex workers.30 Fear of arrest and stigma often prevent this population from seeking medical care.31 It is possible law enforcement may help mitigate HIV among gender-minority AYA and AYA of color by eliminating arrest quotas for sex work. Pilot programs could be initiated in which incarcerated AYA have access to social workers and healthcare providers for HIV education, screening, and condom distribution.
No randomized clinical trials have compared clinical outcomes between AYA screened and not screened for HIV infection, however 40% of new HIV infections are transmitted by people undiagnosed and unaware they have HIV.32 Research shows that once people learn they are infected, they take steps to protect their health and prevent transmission to others.3 Early diagnosis of HIV can allow for rapid initiation of antiretroviral therapy (ART), reduction of HIV-associated morbidity and mortality, and reduction of HIV transmission to others once virally suppressed.33
Only 9% of high school students have been tested for HIV.34 A 2018 analysis found Black MSM comprised 36% of new HIV diagnoses but received only 6% of tests.35 From 2015 to 2019, the percentage of high school LGBTQ students tested for HIV has consistently fallen, with only 13% tested in 2019.36 Among the Black MSM population, young MSM accounted for 60% of new HIV infections and among Latino MSM, young MSM accounted for 45% of new HIV infections.36
The CDC recommends all persons 13 to 64-years be screened for HIV at least once and annually if at higher risk, with high-risk individuals including sexually active MSM.37 The United States Preventive Services Task Force (USPSTF) recommends HIV screening for all 15 to 65-year-olds with additional screening for people at increased risk.32 Individuals who fall under the umbrella of “increased risk” are those with new partners, those who engage in condomless anal intercourse, individuals with a sex partner in a high-risk category for HIV or with unknown HIV status, and intravenous drug users. Increases in HIV diagnoses at age 15 account for the difference in screening recommendation initiation at age 13 versus age 15 between the CDC and USPSTF, respectively.32,38
As cited above: (1) two-thirds of teenagers have had sex by the time they graduate high school; (2) 40% of them did not use a condom at their last encounter; (3) most new HIV diagnoses occur in Black AYA; but (4) only 9% of high school students have ever been tested for HIV. There appears to be a disconnect in the implementation of HIV testing recommendations. Not identifying AYA at increased risk of HIV may be responsible.
Studies show primary care physicians and pediatricians may be unaware of HIV testing guidelines and unlikely to address same-sex sexual behaviors and HIV testing. Predictably, 75% of patients who discussed these topics with their doctor had been tested for HIV, while only 11% of patients who did not discuss sex were tested.39,40
Racial and sexual minority youth are at higher risk of STIs, often because they do not receive sufficient education and are not screened appropriately as described above. Thus, healthcare professionals (HCP) have an additional opportunity to provide and support longitudinal sex education.41 When sexuality is discussed routinely and openly during well-child visits for AYA, these conversations are easier to initiate, more comfortable, and more effective and informative.42 Professional organizations recommend routine conversations with AYA, starting at age 11 or 12. Sexual health topics to discuss include sexuality and gender identity, consent, relationships, sexual decision making, consistent condom use, contraception, and STI screening and prevention strategies.43
To stay current on the needs of this patient population, clinicians should regularly revisit American Academy of Pediatrics recommendations on HIV testing and sexual health screening in adolescents.44,45 To increase testing in this population, HCPs should standardize routine discussions about sex. Although there are no risk assessment tools to identify youth at increased risk of HIV,32 clinicians can identify AYA who require more frequent testing with open conversations about sex practices and subsequently individualize prevention approaches.
For AYA at risk of HIV, in addition to increasing condom use, improving access to HIV pre- and post-exposure prophylaxis (PrEP, PEP) is critical.46
Evidence suggests that many AYA are unaware of PrEP and do not know how to access PrEP should they need it.47 Factors associated with reduced PrEP uptake among youth in the US are complex, involving a combination of patient-level barriers, structural barriers, and provider-level barriers.47
Largely, data are limited on PrEP safety and efficacy in adolescents under eighteen, however research is underway. Although sparse, data overall supports the safety of PrEP for adolescents.48 One study showed PrEP efficacy in half of 15- to 17-year-old MSM participants at monthly visits but reduced adherence with quarterly follow-up.49 This aligns with other studies consistently identifying both lower adherence and persistence rates in AYA prescribed daily PrEP, especially among Black young MSM.50
In 2019, the USPSTF expanded PrEP recommendations to include AYA at risk for HIV.32 Although deficiencies in data restrict understanding of barriers contributing to the underutilization of PrEP in this population, addressing apparent barriers to PrEP access like provider knowledge, finances, transportation, and stigma are direct and essential tactics to HIV prevention.51 For example, supportive counseling and interventions such as phone apps have been proven to be effective in helping adolescents with adherence.50 Authors Tanner et. al published a useful clinical approach HCPs can reference for enhancing patient-provider communication related to PrEP and other sensitive topics.48 More frequent clinical follow-up is another approach.48 Finally, in combination with better youth education about PrEP, willing HCPs could establish mobile or dedicated PrEP services in HIV endemic areas to study safety, efficacy, and factors contributing to low adherence. Of note, physicians considering prescribing PrEP for minors should consult local policies regarding PrEP-related services for minors.50
According to the CDC, PEP should be considered following isolated sexual, injection drug use, or other HIV exposure to prevent the transmission of HIV. One pooled analysis of more than 8000 sexually assaulted youth revealed that only 8% were offered PEP and only 1.5% completed treatment.52
No national data are available on whether emergency departments (ED) and pharmacies consistently stock PEP, how frequently people request it, and how often it is prescribed. In Virginia, local health department processes are convoluted and threaten the 72-hour window for administration. Health department instructions to obtain access to PEP require multiple phone calls, access to a fax machine and internet, and shipment from a central pharmacy.53 Some EDs may prescribe initial PEP doses, but few have clear links to follow-up care.54,55 New York state has had more success in this area; the majority of New York EDs have implemented protocols for managing PEP, with 78% having an established link to follow-up care.55 This can serve as a model for the implementation of pilot programs in endemic areas across the country. More research is needed to assess the impact of standardized requirements to stock PEP starter packs in EDs. Additional measures to increase timely access to PEP encourage relationships between 24-hour pharmacies and after-hours and urgent care centers.52 Clinicians should familiarize themselves with the options for obtaining PEP in their area and share this information with patients.
Early initiation of and adherence to ART reduces viral load, HIV transmission, and the risk of clinical progression to AIDS.40,56 Among Black adolescents living with HIV, ART adherence and viral suppression are lower than other groups.57 Contributing factors include systemic social and environmental factors like poverty, comorbid psychiatric conditions, and drug use.57 A review of clinical outcomes of Black youth living with HIV between 2009 and 2014 revealed ART prescription and durable viral suppression were significantly higher among those receiving Ryan White HIV/AIDS Program assistance.57
Transgender AYA report high rates of structural and logistical barriers affecting access to HIV treatment services.2,58 For example, transgender individuals report concerns over adverse interactions between ART and gender-affirming hormone therapy.58 One study found that 40% of participants did not take their medication as directed due to these concerns and 49% did not discuss their concern with their clinician.58 To optimize outcomes for transgender AYA, HCPs must increase their understanding of this population and take steps to integrate HIV care with gender care.2 Care integration has been shown to minimize the potential for stressful clinical interactions and facilitate improved viral suppression.59
For AYA living with HIV, HCPs should provide rapid treatment or treatment upon diagnosis congruent with the HIV Care Continuum.57 Because AYA are a historically challenging population to treat,49,60 referral to adolescent medicine or infectious disease for improved retention in care may help. Supplemental services like case managers, mental health sessions, drug abuse treatment, and subsistence aid are necessary to improve treatment disparities.57
Lack of prevention information, low testing rates and viral suppression, and increased risk of homelessness and sex work significantly affect both gender and racial minority AYA. As a result, these populations of young people are disproportionately burdened with a chronic disease before their adult lives even begin. More can be done to address disparities among AYA at risk of HIV.
HCPs can advocate comprehensive sexual education in their communities to include inclusive programming that teaches abstinence as a choice, contraceptive options, and other lifelong skills needed to ensure optimal sexual health outcomes. More research is needed to address the complex factors contributing to the propagation of HIV as these AYA engage with other public services like law enforcement. Disparities in HIV testing, condom use, PrEP uptake, and viral suppression of adolescents living with HIV predominately affect racial and sexual minorities. To counter this, we suggest standardization of confidential time with AYA and regular discussion about sexual health topics at annual health prevention visits. Incorporating this practice will reduce missed opportunities for prevention counseling, increase risk-based HIV screening, allow for longitudinal surveillance of sexual health behaviors, and give clinicians the opportunity to provide guidance for risk reduction.
The authors have no relevant financial disclosures or conflicts of interest.
Dr. Alice Kisteneff, MD is a psychiatry resident at Naval Medical Center, San Diego. Her research areas include Human Immunodeficiency Virus prevention and patient’s rights. She received her formal training at Eastern Virginia Medical School.
Katie O’Connell, MS is a medical student at Eastern Virginia Medical School. Her research areas include Human Immunodeficiency Virus prevention and cutaneous oncology.
Dr. Kyzwana Caves, MD is an assistant professor in Adolescent and Young Adult Medicine at Eastern Virginia Medical School. Her research areas include reproductive health and pre-exposure prophylaxis (PrEP) among adolescents and young adults. She received her formal training at Virginia Commonwealth University School of Medicine and Children’s National Medical Center.