HIV/AIDS and Adolescents: From Prevention to Care

Adolescence is a time of intense transformation. No longer children but not yet adults, adolescents must navigate a multitude of emotional, cognitive, and physical changes, many of which can render them at risk for HIV infection. Youth require age-appropriate outreach and treatment services that address their unique needs.

It is estimated that one-fourth of all HIV infections occur in people under age 21—a segment of the population that is among the most medically underserved.1,2 Experts predict that only 11 percent of HIV-positive youth in the United States receive adequate medical care.3 Adolescents are also the most uninsured and underinsured group in the United States, and those at the highest risk for HIV are the least likely to be receiving office-based primary care services.4,5 One in 7 adolescents—and 1 in 2 minority adolescents—live in poverty, which can greatly impede access to health care.6 In addition, adolescents are often inexperienced and unfamiliar with the medical system and may distrust health care professionals.7,8

Most HIV-positive youth are asymptomatic, do not know they are infected, and are not enrolled in treatment.9,10 Often the very psychosocial and socioeconomic factors that place young people at high risk for acquiring HIV are the same ones that leave them at the margins of disease prevention and health care systems. A 2003 Henry J. Kaiser Family Foundation survey found that among sexually active young people who have not been tested for HIV, half do not consider themselves at risk.11

Most people who become HIV infected during adolescence are not diagnosed until they are in their twenties or beyond. Cumulatively through December 2001, only 3.8 percent of reported HIV infections (174,026)* and less than 1 percent of reported AIDS cases (816,149) were among people in ages 13 to 19. But 3.5 percent of reported AIDS cases have been among people ages 20 to 24, and an additional 14 percent among those ages 25 to 29. Time from HIV infection to progression to AIDS can exceed 10 years. Thus, it is certain that a large proportion of people with AIDS who are in their twenties became infected with HIV while in their teens; similarly, it is probable that a number of people with AIDS who are age 30 to 34 were infected during their teenage years.12

Females constitute a higher proportion of reported HIV infections (42.3 percent) and reported AIDS cases (57 percent) among youth ages 13 to 19 than among any other age group.13 Partly accounting for this phenomenon is the fact that, due to reproductive health concerns, females typically come into contact with the health care system—and HIV testing services—at an earlier age than do males.

Surveillance data also are clear that minority adolescents, like minority adults, shoulder a highly disproportionate burden of the AIDS epidemic in the United States. Together, African Americans and Hispanics account for 62.3 percent of cases among males and 83.5 percent of cases among females in this age group.14 Subpopulations at high risk include young males who have unprotected intercourse with other males; runaway youth and youth who exchange sex for shelter or money; and economically disadvantaged adolescent girls who have unprotected sex with older males.

Youth: Barriers to Testing and Care

Many communities lack age-appropriate HIV services—and when those services are available, they are often difficult to locate and navigate. Youth avoid accessing counseling and testing (C&T) services for many reasons. Like adults, some young people fear the testing process and the life-threatening implications of an HIV diagnosis,15 and many are ashamed, embarrassed, or afraid that they will be stigmatized if they get tested for HIV.16 Youth commonly perceive HIV testing sites to be hostile or fear legal restrictions, such as the need for parental authorization, that could restrict their rights to privacy should they test positive for infection.17

Young men who have sex with men, especially those who are not yet ready to disclose their sexual identity, face additional barriers to testing and care. They may believe that volunteering for an HIV/AIDS test would brand them as gay and leave them vulnerable to possible discrimination and harassment in the community. Stigma, low self-esteem, and the inability to have an honest relationship with a health care provider are obstacles to identifying cases among this subgroup.18

Not only do many adolescents delay or forego HIV testing, but those who test positive often delay treatment for the disease.19 It may take several months for an HIV-positive youth to accept his or her diagnosis and return for treatment.20 Despite the efforts of HRSA, Ryan White Comprehensive AIDS Resources (CARE) Act providers, and organizations and individuals across the country, an enormous disparity remains between the numbers of youth who are HIV positive and the numbers who are enrolled in care.21

Infected youth who have been successfully linked to care still face substantial barriers that impede their effective utilization of, and adherence, to treatment. Growing evidence demonstrates that young people are less likely than adults to adhere to complex HIV drug regimens.22 In a recent study published in the Archives of Pediatric and Adolescent Medicine, only 28 percent of HIV-infected adolescents reported taking all of their prescribed antiretroviral medications in the previous month.23

The low treatment adherence rate among HIV-positive youth represents an alarming lost opportunity: Several studies indicate that HIV-positive adolescents are more resilient and better equipped to fight the virus than are children or adults. For example, a study reported in the Archives of Pediatric and Adolescent Medicine in April 2000 found that HIV-positive adolescents responded well to early, aggressive treatment with anti-HIV medications due to their strong immune response system. Study co-author Steven Douglas, M.D., chief of immunology at The Children’s Hospital of Philadelphia, said that the study found a surprisingly higher number of CD8-naive T lymphocytes in HIV-positive adolescents than in uninfected adolescents.24 Douglas said that teenagers treated aggressively with highly active antiretroviral therapy (HAART), “may have the best chance of having their immune systems bounce back.”25 Another study, conducted in 2001 at the University of Alabama at Birmingham found that youth ages 13 to 18 regenerated higher counts of CD4 and CD8 immune-system cells than did younger children or adults.26

Special Projects of National Significance for Adolescents, Women and Children

Increasing enrollment of HIV-positive adolescents in care is an important priority for CARE Act providers, yet barriers to care for this population are often intractable.

Between 1996 and 2000, five projects focused on adolescents were funded through the CARE Act Special Projects of National Significance (SPNS) program and the U.S. Department of Housing and Urban Development (HUD) Housing Opportunities for People with AIDS Program (HOPWA). The collective experiences of these grantees—collectively referred to as the SPNS work group for Adolescents, Women and Children (AWAC)—were documented in the supplement to the August 2003 issue of the Journal of Adolescent Health. Readers are urged to refer to that issue of the journal for a more in-depth treatment of all topics summarized here.

The AWAC projects were shown to be effective at reaching disenfranchised youth populations at the local level. Although the projects differed in their organizational structure, each one attempted to create a seamless model of youth-specific, multiservice HIV/AIDS care comprising HIV outreach, testing, and treatment.

The collective AWAC experience generated the following recommendations for programs intending to engage hard-to-reach youth populations.

• Define the target population. Prevention and care providers must carefully define their target subgroup and tailor approaches accordingly.

• Provide age-appropriate care. Programs must address the unique developmental, cognitive, and emotional changes associated with adolescence. Service locations and hours of operation should accommodate school and social schedules, and care providers should be respectful of youth.
• Ensure seamlessly integrated and accessible services. Services are most effective when they are comprehensive and integrated and when they comprise multidisciplinary outreach, testing, and treatment, particularly for youth with co-occurring mental health and substance abuse disorders. When co-located services are not feasible, case management and interagency linkages are crucial.
• Establish and maintain trust. Programs must establish an atmosphere of trust, confidentiality, and respect. Peer-based outreach and counseling are effective strategies. Research suggests that HIV-positive youth who develop trusting relationships with their providers are more likely to be tested, return for test results, and transition into treatment.27
• Provide comprehensive care that addresses youth’s nonmedical needs. HIV-positive youth often require help with housing, transportation, financial assistance, job training and placement, and child care. Primary care for HIV-positive youth must be integrated with services that address factors such as mental health problems, sexual health, and substance abuse.28

Case Identification for a Special Population

Program Approaches

HIV C&T services are the gateway to care for HIV-positive youth and help reinforce HIV prevention strategies for uninfected youth.29 The AWAC programs developed youth-specific strategies for locating and engaging at-risk and infected young people through intensive outreach and C&T services. Each program approached case identification using three key steps:

1. Engagement and stabilization: Reaching out and establishing initial contact with a youth is a precursor to engagement and stabilization. By building rapport and trust, outreach workers can begin the process of encouraging HIV testing.
2. Moment of testing: Testing provides an opportunity to influence a youth’s future behavior significantly. Testing encounters that include a comprehensive, personalized sexual risk assessment have been shown to motivate youth to reduce HIV risk behaviors.
3. Posttest counseling: Posttest counseling provides an opportunity for individualized risk assessment and HIV education and is a critical stage for initiating a youth’s transition into the care continuum. If rapid-testing technology is unavailable, this period requires intensive follow-up and client tracking to ensure that youth return for results. Posttest counseling also provides an opportunity to reinforce incorporation of risk reduction behaviors, including abstinence and reduction in the incidence of risky behaviors. Individuals, whether HIV positive or HIV negative, should also be referred to appropriate prevention services.

Lessons Learned

• Outreach efforts should be tailored—and regularly readjusted—to target the highest risk subgroups. Programs must define the high-risk youth subpopulation to be targeted, and C&T services must be available in areas known to be frequented or inhabited by those adolescents. Providers should not expect young people to seek out services for themselves; rather, providers must bring HIV services to youth, whether on the street or through existing community agencies.
• Youth peer worker involvement is critical in planning and delivering services. The most important ingredient to successful case finding was the involvement of youth peer workers, especially those who were most familiar with the specific subcultures being targeted.
• Early and frequent contact with staff facilitates HIV testing and counseling. The AWAC programs found that youth often required multiple low-level contacts with a specific staff worker to build rapport and establish trust before they would agree to participate in C&T services. This pattern was especially true for homeless or runaway youth.
• C&T services are most effective when provided in an unthreatening, youth-friendly environment. AWAC programs that operated within institutional settings found that young people were less intimidated when C&T services were integrated into a standard medical routine. Young people may be especially reluctant to approach a clinic known to be associated with sexually transmitted infections (STIs) or HIV/AIDS. In addition, AWAC programs that operated through shelters or on the street discovered they were more likely to engage youth if they had established a distinct presence in the target area. It helped for programs with mobile vans to maintain a consistent presence at key locations and to participate in community events.
• Rapid testing may improve testing rates and the likelihood that youth return for results. Some programs found that switching from the blood-draw procedure to Orasure increased adolescents’ willingness to undergo HIV testing. Division of Adolescent and Young Adult Medicine (DAYAM) saw an increase in testing after discontinuing the needle test.30 One study in the 2001 issue of the Archives of Pediatric and Adolescent Medicine found that youth often prefer noninvasive, rapid-result, saliva-based HIV tests over blood and urine tests.31

Challenges

Each AWAC program encountered unique challenges in providing HIV C&T. For example, programs that used mobile vans required consistent scheduling, the flexibility to move as the population moved, unusual operating hours, and contingency plans in case of mechanical failure. Client confidentiality was also an important consideration for mobile sites: one program found that many adolescents were eager to be tested but were nervous about friends and neighbors seeing them entering or leaving the van.

Some programs found it unexpectedly difficult to find qualified outreach workers who were sensitive to the unique needs of young people. To address this challenge, Chicago Risk Reduction Partnership for Youth (CHRPPY) provided an intensive training program for its workers. The Teen Outreach Project University of Miami (TOP-UM) learned that young peer outreach workers required especially intensive training and close monitoring by staff professionals. Moreover, young peer outreach workers often had risk profiles that mirrored the target group and were therefore vulnerable to risk themselves. Both TOP-UM and DAYAM developed intensive interventions and mentoring to ensure that youth workers could resist engaging in risky behaviors prior to venturing into the community.

Transitioning Youth into Care

The AWAC programs were able to reduce the time required to transition HIV-infected youth to care from years to days.32 Simply providing young clients with a list of referrals is insufficient to ensure transition to care; rather, clients must be linked to care providers in the immediate aftermath of diagnosis, and transportation assistance or escorts must be available.

Program Approaches

In each AWAC program, youths who tested positive for HIV received “transitional case management.” Even before broaching the topic of clinic appointments, case managers asked youth about their current support systems, finances, food needs, and living situations, all of which are factors that could directly affect adherence. Transitional case management was especially important for runaway or homeless youth, who often required basic services—such as help with housing, food, or serious psychosocial problems—before agreeing to seek medical treatment.

Lessons Learned

Youth who had developed relationships with outreach workers prior to diagnosis were more amenable to initiating medical treatment. In many cases, youth required intensive involvement of the staff—through phone calls and face-to-face meetings—before they would come for their first clinic appointment.

Challenges

Perhaps the most significant obstacle in transitioning youth to care is the tendency for young people to deny the consequences of a severe diagnosis and the need for immediate treatment and behavior change. Some youth did not believe or accept their positive diagnosis and asked to be retested.

Some youth distrust adults in general, whereas others specifically distrust adults who work in health care settings. CHRRPY, DAYAM, and TOP-UM all found that young peer workers or buddies often succeeded in linking such youth to care and keeping them in care.

Treatment and Case Management for HIV-Positive Youth

Youth who have been successfully linked to care still face many barriers that can impede utilization of treatment services.33 Treatment adherence can be especially challenging for adolescents, who struggle with a range of developmental tasks that require them to balance dependence with increasing autonomy.34

Program Approaches

Each of the 107 youths who were enrolled in AWAC treatment programs underwent a thorough intake evaluation, including assessments of medical, nutritional, mental health, and social services needs, including substance abuse counseling or treatment.

Challenges

In addition to the challenges normally associated with adolescence, youth in all AWAC programs were found to have numerous socioeconomic and psychosocial problems that posed a threat to treatment adherence. Mental health needs were especially common. Poverty, school and family issues, substance abuse, fear of death, and stigma all may detract from the consistent attention an HIV patient must give the disease. Moreover, frequent and inconvenient medical appointments, complex medication regimens, side effects, and opportunistic infections can be overwhelming and result in inconsistent or nonexistent adherence. Finally, unstable housing, which has been linked to reduced access to and compliance with medical care, can also be an issue for youth. CHRRPY clients with unstable housing were found to be the least likely to adhere to treatment.

Lessons Learned

Simply treating the medical needs of youth is insufficient. HIV care must be part of a comprehensive, multidisciplinary approach that is coordinated through case management.

Whole Life found that quality and continuity in the provider–patient relationship were the most powerful elements in promoting adherence. Retention and adherence also are impeded when treatment is offered in an inconvenient location or when appointment scheduling is inflexible or overwhelming. Moreover, the care environment must be responsive to the youth’s psychosocial needs and school schedules.35

DAYAM found that compliance with appointments was inversely related to the number of appointments young people were expected to attend. The AWAC programs found that walk-ins must be welcome. The entire clinical team should be available during clinic hours to promote one-stop shopping, and at least one team member should be available at all times to offer reassurance and provide emergency assistance. According to DAYAM, appointment-keeping compliance may not be an indicator of medication adherence, underscoring the need for ongoing, intensive case management.

The AWAC experience illustrates the need to provide youth with the least complicated and onerous medication regimens in an environment conducive to adherence. The number of pills required and the frequency of dosing can be a burden on young people and interfere with daily routines. For example, some youth in the DAYAM program chose not to take medications at school or work out of concern that peers would realize their HIV status. DAYAM found that using Combivir helped limit the number of pills per dose and that reducing the frequency of dosing for Viracept improved clients’ quality of life. Whole Life observed an improvement in adherence when staff counted pills and organized medications for clients.

Special Needs of HIV-Positive Adolescent Girls and Young Women

All HIV-positive adolescents face numerous challenges, but young infected women must contend with additional, gender-specific risk factors and barriers to retention in and adherence to care.

The Whole Life SPNS program improved the quality of life of adolescent females it served and illuminated program characteristics essential for serving this population effectively. Whole Life was implemented in HIV clinics providing specialty prenatal and postpartum services for approximately 160 HIV-positive pregnant women as well as primary HIV care for approximately 400 HIV-positive women who were not pregnant.36

For the young women enrolled in the Whole Life program, mental health problems and psychological distress created serious challenges to retention and adherence. About one-third of the women tested positive for a mental health problem, and the group reported frequent exposure to violence and other potentially traumatic events. After training by Whole Life staff, OB/GYN and psychosocial staff were thus able to identify and reach out to young patients prior to their initial HIV clinic visit. During these pre-entry contacts, a case manager or social worker was assigned to ensure that the patient followed through with her appointment. Various tactics were used to increase the likelihood that women would return, including giving clients case managers’ pager numbers, arranging for taxicabs, or providing bus tokens.

Whole Life used various developmentally appropriate strategies for empowering their clients to become active participants in their care:

• Staff augmented explanations of HIV disease with visual presentations.
• The staff were encouraged to focus on the “here and now.” The fears of HIV-positive women who are overly preoccupied with how sick they might become may keep them from engaging in proper care.
• First-time patients were greeted immediately and invited into a separate waiting room—apart from late-stage patients—where they were able to relax in private. Staff found that if first-time patients were left with patients at later stages of the disease they were more likely to experience a self-defeating “flash forward” of their future.
• OB/GYN staff had realistic expectations about the social and emotional maturity of their young clients. Staff were trained to work with patients who may exhibit underdeveloped problem-solving skills, impatience, or a low tolerance for frustration. When instructions were needed, OB/GYN staff made sure to be clear and concise, and they provided explicit options instead of vague, open-ended questions. Staff were also prepared to answer repetitious questions.
• Staff ensured that young HIV-positive women had a place where they could vent frustration and express fears and emotions.37

Of course, some clients required more intense interventions than other clients. Mental health issues, substance abuse, and a fear of stigma, for example, interfered with engagement and retention in care. While maintaining a position of unconditional acceptance, staff persisted in their efforts to provide support and education, and they constantly reassessed and mobilized ancillary and support service needs.

Conclusion

The severe lack of parity between the number of adolescents believed to be HIV-infected and the number who are actually in care is cause for great concern. The experience of the AWAC grantees clearly demonstrates that adolescents can be reached. It also reveals that adolescents need nurturing, and that reaching those who need services the most is a difficult, time-intensive endeavor requiring grantees to commit to the task over the long haul.

The Institute of Medicine recently noted that “’limited documentation’ exists on exemplary health care delivery systems. The need for more demonstration projects is important for designing future projects for disenfranchised populations. Quality health care can be made available if models are constructed following those proven to work. The five projects discussed here worked. Like many other HRSA/SPNS projects, they successfully identified a population in need and creatively found ways to reach them. They not only can be looked upon as models for future projects but also must be recognized for their work that, for many, altered the course of a deadly disease.

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Did You Know?

• Only 11 percent of HIV-positive youth in the United States receive adequate medical care.1
• In a national youth survey, less than half of the participants knew “for sure” where to go to be tested for HIV. Among sexually active respondents, one-third of adolescents and two-thirds of young adults reported having had sex without a condom at least once.2
• Adolescents and young adults are among the most uninsured populations in the United States. People age 18 are the most likely to be uninsured (18.5 percent). The rate is nearly twice as high for 18 year-olds who live in poverty (36.2 percent).
• Minority youth under age 18—a group disproportionately affected by HIV/AIDS—are more likely than white youth to be uninsured. In 2001, the uninsured rate was 24.9 percent for Hispanics, 23 percent for American Indian/Aleutian Eskimos, and 14.2 percent for blacks, compared with 7.6 percent for whites. Among youth living in poverty, the figures are even higher (45.4 percent, 35.5 percent, 28.3 percent, and 26.2 percent respectively).3

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AWAC Programs

Chicago Risk Reduction Partnership for Youth (CHRRPY)

Cook County Hospital, Chicago, Illinois

CHRRPY developed an HIV case-identification system through community and school adolescent service agencies. Using counseling and testing (C&T) services and risk-reduction educational sessions, CHRRPY aimed to

• increase the number of youth receiving (C&T) services,
• use HIV testing as opportunity for personalized risk-reduction­ ­education, and
• increase the number of HIV-positive youth receiving comprehensive medical and mental health care services.

Teen Outreach Project University of Miami (TOP-UM)

Miami, Florida

TOP-UM reached out to at-risk youth populations by offering free family planning and prevention services in the community via a mobile van. ­TOP-UM conducted outreach in venues where adolescents were known to congregate, enabling adolescents to be confidentially screened for HIV and other sexually transmitted infections as well as for mental health problems.

Whole Life Project

University of Miami Department of Psychiatry and Behavioral Sciences, Miami, Florida

Whole Life’s goal was to offer a one-stop program for HIV-positive women and girls that integrated primary and OB/GYN care, mental health and substance abuse treatment services, and other supportive services.

Division of Adolescent and Young Adult Medicine (DAYAM) HIV/AIDS Project

UMDNJ, University of Medicine and Dentistry of New Jersey, Newark, New Jersey

Designed to overcome common barriers to early diagnosis and treatment among adolescents at risk for or infected with HIV/AIDS, DAYAM had three components: peer outreach; a mobile HIV-testing van; and a comprehensive program involving treatment, medical monitoring, and case management.

SafeSpace, Center for Children and Families

New York, New York

SafeSpace’s programs are designed to meet the complex needs of street youth through a mobile unit, a drop-in center in Times Square open on a 24-hour basis, and emergency and transitional housing.

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Newly Available: A Resource to Help Clinicians and Health Care Organizations Identify Costs in Providing HIV/AIDS Care

The Health Resources and Services Administration (HRSA) is pleased to announce the availability of a new costing tool for HIV/AIDS providers. The Technical Assistance Costing Tool (TACT) is an Excel-based software tool developed in response to the needs of many providers who would like assistance in identifying the underlying costs of the services they provide. Based on basic patient information, the Costing Tool calculates patient care expenses and provides grantees with information on the costs of their own clinical services for billing and reimbursement with managed care organizations and other third-party payors. The TACT software is intended for internal use and can complement the other tools organizations have in their practice management resource libraries.

Go to http://www.hrsa.gov/TACT to learn more about the TACT and to obtain a copy of the software and user manual. Information is also available at that website on a February 25, 2004, webcast training event for grantees/subgrantees of HRSA’s HIV/AIDS Bureau on the specifics of how to use the TACT.

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