Adolescents constitute one of the most invisible populations affected by HIV disease in the U.S. The difficulty categorizing adolescents into pediatric or adult systems of care, the lack of access of many teenagers to medical services, and the fact that the young people most likely to become HIV-infected are often those who are the most disenfranchised are but a few reasons. All of these factors contribute to a disturbing current trend in the epidemic, which is that adolescents comprise an increasing percentage of new HIV infections both in developing and in developed countries.
This article concentrates on adolescents from 12-17, who often share features with HIV-positive young adults from 18-25. While prevention in youth populations is certainly of immense importance, the care and treatment of HIV-positive adolescents is the focus of this article.
Exact statistics on HIV infection for any particular population are difficult to determine because of the ways the disease is tracked. For example, AIDS diagnoses may be reported while the number of HIV infections may not. Nevertheless, the estimates of HIV infection among adolescents are sobering. As many as 25% of the estimated 40,000 new HIV infections in the U.S. each year occur in 13- to 21-year-olds. Current estimates are that as many as 50% of infections worldwide occur in those between the ages of 15 and 24.
At least one teenager in the U.S. is infected with HIV each hour. Given that it takes an average of ten years or longer for AIDS symptoms to appear when HIV is left untreated, and that many people with an AIDS diagnosis are in their late twenties or early thirties, it is obvious that many young adults with AIDS were infected in their teens. As of December 1998, 3,373 AIDS cases were reported in the U.S. among those 13 to 19 years of age. An additional 24,437 cases were reported in the 20-24 age group, the majority of them almost certainly infected as adolescents.
Of HIV-infected adolescents, approximately two-thirds are African-American or Latino, though these two groups represent less than one-third of that age group in the population at large. Youth of color, young gay and bisexual males, and homeless or runaway youth are at increased risk of acquiring HIV. Recent years also have brought a dramatic increase in HIV among young women, particularly young women of color. Between 1988 and 1993, HIV prevalence is estimated to have increased 36% among women 18 to 22. Among black women 18 to 27, the increase is estimated to be 60% for the same time period.
Many adolescents with HIV are unaware of their infection because they have not been tested for it. Many who do test positive do not follow up for medical care due to lack of money, insurance, or access to appropriate care, or because of denial or mistrust of the medical system. Before discussing optimal treatment of adolescents with HIV, it is critical to consider the significant barriers to medical care that many adolescents encounter.
Barriers to Care
Even when they know of their HIV infection, many adolescents do not receive the care they need. Adolescents frequently lack resources to pay for their own medical care, including most notably insurance, which severely limits their access to many types of care. Uninsured adolescents in some areas are left with the option of public clinics -- not always youth-friendly environments in the best of circumstances -- and in other areas may have no access to any health services. In some places, adolescents may be unable by law to consent to medical services on their own.
Many HIV-positive adolescents experience denial about their HIV disease, sometimes as a coping mechanism. Overwhelmed with the demands of school, work, chaotic home lives, depression, substance use, or homelessness, young people may decide that they cannot focus on their HIV disease until some point in the future (e.g., when school is over, or after they move away from home, or after they find a home). Adolescents typically are inexperienced and unfamiliar with the medical system, and often have difficulty navigating the complex systems of care associated with HIV. In addition to a lack of skills, a significant fear and a mistrust of the medical system prevent many adolescents from seeking care.
To provide care to adolescents with HIV, the barriers that separate them from medical services must be overcome. Individual clinics and providers can make a difference by offering care that is as youth-sensitive as possible.
Once HIV-positive adolescents are actively receiving care, the question of how best to treat them must be addressed. Frequently, the central question is whether adolescents with HIV should be treated like their adult counterparts or like pediatric patients, or whether they are a unique group requiring their own treatment guidelines. Pediatric treatment guidelines differ from adult guidelines because the pathogenesis (disease development) of HIV and therapeutic (anti-HIV and opportunistic infection [OI] prophylaxis) drug metabolism are different in pediatric patients than in adults, and adolescents may be regarded as falling into a gray area somewhere in between the two (although use of the Tanner scale, discussed later, provides a clear method for evaluating individuals).
Unfortunately, the differences in pathogenesis and response to treatment in adolescents have not been extensively studied. It is generally believed that adolescents who are infected through sexual behaviors or needle-sharing experience a course of disease similar to that of adults, as reported in the 1998 Report of the National Institutes of Health (NIH) To Define Principles of Therapy of HIV Infection.
Although there is some information, less is known about the disease course in those who were infected perinatally (by, at, or near the time of birth) or through the use of blood products as children (some of whom have now survived into adolescence), although it is hoped that long-term observational studies of perinatally infected children may provide some clues. One such project, the NIH-funded Women and Infants Transmission Study (WITS), has the ability to follow children born to HIV-positive mothers over many years, and will provide data on HIV-positive children as they mature into adolescence.
For the most part, pathogenesis and response to treatment among adolescents seem not to differ dramatically from those of adults. Subtle yet potentially important differences, however, such as the effects of HIV disease or medications on adolescent development, may be overlooked. The Reaching for Excellence in Adolescent Care and Health (REACH) study, a multisite, natural history cohort study of adolescent HIV infection, may provide some answers. Funded by the NIH, and a project of the Adolescent Medicine HIV/AIDS Research Network (AMHARN), the REACH study has recruited 300 HIV-positive adolescent participants and 150 high-risk HIV-negative participants between 12 and 19 in 13 cities nationally.
One preliminary finding suggests that there may be an increased potential for immune reconstitution among adolescents due to the presence of residual thymic tissue. The thymus gland is a necessary component of the immune system. Research reveals that the thymus becomes much smaller as humans age, beginning in the teenage years. While traditionally thought not to be active in the adult years, very recent research indicates the presence of some thymus activity even into late adulthood. This would provide a strong argument for treating HIV infected adolescents early, as their prospects for sustaining a strong immune response following treatment would likely be good.
Currently, adolescent treatment is addressed in both the adult and pediatric guidelines for treating HIV disease (published by the Centers for Disease Control [CDC] in their Morbidity and Mortality Weekly Report), and by the Health Resources and Services Administration and NIH, respectively. While the adult guidelines are called Adult and Adolescent Guidelines, it should be noted that adolescent is intended to refer to those in late puberty who could be considered adults developmentally. (Guidelines are also available online at the HIV/AIDS Treatment Information Service's Web site at www.hivatis.org.)
The pediatric guidelines break down treatment recommendations for adolescents based on stages of development called Tanner stages, which are a means of determining where along the spectrum of sexual development an adolescent stands, regardless of chronological age. For females, Tanner stages evaluate breast and pubic hair development. For males, genital and pubic hair development are rated. Each variable is rated on a scale of 1 to 5, 1 representing prepubertal development and 5 representing an adult level of development. The pediatric guidelines recommend that dosages for anti-HIV and anti-OI medications follow pediatric schedules for persons in Tanner stages 1 and 2, and adult schedules for those in stages 3 through 5, with particularly close monitoring for those in stage 3.
Many adolescents living with HIV in the U.S. today were infected as older children or teenagers and likely have been HIV positive for a relatively short period of time. The pediatric guidelines note that this makes them "ideal candidates for early intervention." It should be noted, however, that initiating HIV therapy in adolescents must be done by including the individual as part of the decision-making process.
Another, increasingly large group of adolescents living with HIV is composed of children who were perinatally infected; as more and more of these children enter adolescence, a host of new concerns present themselves, including adherence and treatment decision-making, which involve unique issues for children who have already been on life-long HIV-suppressive therapy and are now becoming more directly and authoritatively involved in their own care. If a teenager is not ready to begin therapy due to internal or external factors, he or she almost certainly will not adhere to a prescribed medication regimen. Increasingly, this applies to all HIV-positive people regardless of age, but it is especially true for adolescents and always must be kept in mind. This is in keeping with the trend toward a more conservative consideration of when to initiate therapy that recognizes the importance of beginning therapy when the patient is ready and when the regimen has the greatest chance for success.
A 1997 report produced by Special Programs for Youth, a service of the San Francisco Department of Public Health (SFDPH), iterated the main reasons adolescents and young adults in their clinics decided to start, or not start, antiretroviral therapy. The main reasons for not starting therapy included stable health and/or lab work, an unstable living situation, a lack of support, heavy drug use, a fatalistic attitude toward death, mental health issues, a lack of readiness, and simple refusal.
The main reasons for starting or considering therapy included adequate support, stability in one's life, a change in health status and/or lab work, familiarity with people responding well to similar therapies, familiarity with someone who is sick or who has died recently, and access to a clinician who repeatedly discusses options and is supportive and nonjudgmental about the adolescent's decision.
Clearly, once the decision has been made by both the HIV-positive adolescent and the provider to begin therapy, selection of a regimen that will fit as seamlessly as possible into the adolescent's life is of critical importance. Simplicity is key for younger persons; in general, twice-daily regimens are likely to work best.
Considerations that apply to adults about tailoring a regimen to the individual and encouraging adherence also apply to adolescents, only more so: adolescents are more likely to discontinue a regimen on their own if they encounter any difficulties, especially unexpected ones. In a survey conducted by the Community Prescription Service, 34% of people over age 35 were not adherent to their regimens, while 58% of those under 35 were not adherent. (Some preliminary evidence also suggests that older persons with HIV -- defined as those over 65 years of age -- also have poor adherence.) Regarding youth, the observed tendency underscores the need to explain to young people what to expect while on therapy and how to manage side effects and adherence problems.
Reflecting their lack of visibility in the epidemic as a whole, adolescents are one of the most underrepresented populations participating in HIV medical research. The result of this lack of representation in the research process is an overall dearth of information on HIV disease in adolescents, including whether disease progression or response to HIV medications differs in adolescents. While many research studies sponsored by the federal government through the AIDS Clinical Trials Group (ACTG) and Community Programs for Clinical Research on AIDS (CPCRA) allow enrollment of those age 13 and older, many clinical trials still exclude anyone under 18. Occasionally, such exclusions have some scientific merit, but adolescent minors are often excluded simply because of the perception that they are too unreliable or problematic (i.e., their attitudes may increase the risk of nonadherence) to make good research participants. Also, because of potential legal complexities of including adolescent minors in research, many study sponsors choose to exclude them categorically rather than learn about the local, state, or Institutional Review Board (IRB) rules that govern inclusion of minors in their particular field of inquiry. In some areas, adolescent minors may be able to provide informed consent to participate in HIV research on their own, while other areas may require a parent's or guardian's consent.
Clinical trials offer HIV-positive adolescents the opportunity to access potentially effective treatments and to take a more active role in their health care while contributing to the existing knowledge about HIV. The Ryan White Title IV Program of the Health Resources and Services Administration (HRSA), which oversees funding for programs serving women, children, adolescents, and families affected by HIV, has instituted a requirement that programs funded by Title IV expand efforts to connect their clients with research opportunities.
An Integrated Approach
To be truly successful, care for HIV-positive adolescents must entail a holistic, or multidisciplinary, approach that addresses young people's emotional and social needs, in addition to providing medical treatment. Adolescence is a unique and vulnerable time in the lives of most people. Many adolescents with HIV are dually or triply diagnosed with substance abuse and mental health problems that may need to be treated before their HIV disease can be dealt with adequately. (While reliable statistics on dual and triple diagnoses among HIV-positive adolescents are not available, 7% of females and 20% of males in the REACH study reported using "hard drugs" in the three months prior to questioning.) Referrals to youth-specific or youth-friendly support services must be made, either by clinicians or social service providers.
Information should be given proactively, as adolescents may not ask questions on their own. Such information also should be delivered to adolescents in appropriate language, and followed up with written information when possible. Instructions regarding medications and other services need to be given as specifically as possible, using real-life examples, as adolescents often think in concrete terms. For example, an adolescent on a three-times-daily drug regimen, who is told that he or she must carry pills during the day, may end up toting around three large pill bottles from the pharmacy, unless a specific suggestion is given to count out the day's pills in the morning and transport them in a smaller pill box.
In addition to involvement from medical and social service providers, peer counseling from other HIV-positive youth, who can give practical and emotional support, can be extremely valuable to the adolescent dealing with the enormous stress of being young and positive. Finally, consideration must be given to matriculating an adolescent with HIV into adult services when the young person approaches "aging out" of youth-specific programs, to ensure that a smooth transition is made.
Ideally, adolescents with HIV would be able to access facilities where appropriate medical care, social and preventive services, and research opportunities are available in one location. Comprehensive centers with youth-oriented HIV expertise already exist in some cities, two examples being the Adolescent AIDS Program at Montefiore Medical Center in New York City and the Larkin Street Youth Clinic in San Francisco. Where such facilities are not available, clinicians should take the initiative to ensure that the medical care of adolescents is well integrated into other social, mental health, and research programs.
Coping with a life-threatening illness during adolescence, a tumultuous and difficult period in life, can be overwhelming. As many of the young people most at risk of acquiring HIV also confront issues of poverty, sexual orientation, sexually transmitted disease (STD) co-infection, abuse, mental health, and substance use, the optimal management of HIV disease becomes extremely complicated for many teenagers and their providers. Adolescents with HIV should have the right to expect high-quality medical care provided with sensitivity to their needs, so that they may make the transition to healthy adulthood.
Greg Szekeres is the medical producer for HIV InSite (http://hivinsite.ucsf.edu), a Web site of the UCSF Positive Health Program, Center for AIDS Prevention Studies, and AIDS Research Institute.
Chabon, B. and Futterman, D. Adolescents and HIV. AIDS Clinical Care 11(2): 1. February 1999.
Grubman, S. and others. Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatrics 95(5): 657-663. May 1995.
Health Resources and Services Administration, National Institutes of Health, and National Pediatric and Family HIV Resource Center. Guidelines for the use of antiretroviral agents in pediatric HIV infection. Morbidity and Mortality Weekly Report 47(RR-4): 1-31. April 17, 1998, revised April 15, 1999.
Hoffman, N.D. and others. Treatment issues for HIV-positive adolescents. AIDS Clinical Care 11(3): 1. March 1999.
Rogers, A. and others. A profile of human immunodeficiency virus-infected adolescents receiving health care services at selected sites in the United States. Journal of Adolescent Health 19(6): 401-408. December 1996.
Rogers, A. and others. The REACH Project of Adolescent Medicine HIV/AIDS Research Network. Journal of Adolescent Health 22(4): 300-311. April 1998.
Rosenberg, P. and Biggar, R. Trends in incidence among young adults in the United States. Journal of the American Medical Association 279(23): 1894-1899. June 17, 1998.
U.S. Department of Health and Human Services. Guidelines for the use of antiretroviral agents in HIV-infected adults and adolescents. Morbidity and Mortality Weekly Report 47(RR-5): 42-82. April 24, 1998, revised May 5, 1999.
U.S. Department of Health and Human Services. Report of the NIH panel to define principles of therapy of HIV infection. Morbidity and Mortality Weekly Report 47(RR-5): 1-41. April 24, 1998, revised June 17, 1998.
Back to the SFAF BETA Winter 2000 contents page.