"I'm HIV positive. I'm a teenage mother. I'm affected by my community. How do you expect me to live? Where is my future leading my 3-year old daughter?"
HIV/AIDS research, generally, has made great strides on many fronts. Physicians have a growing array of medications to treat and even prevent a variety of HIV-related opportunistic infections. As a result, HIV-positive people who have access to care usually aren't getting sick as often, their illnesses aren't as severe, and they are spending less time hospitalized than they did 10 years ago. But adolescents have not received the full benefit of recent research discoveries, and there is a significant unmet need for adolescent-specific treatment and behavioral research. We clearly do not know enough about adolescents in general, about how HIV affects them physiologically or behaviorally, and about the progress of HIV disease in young people.
HIV/AIDS research efforts have primarily focused on two specific populations: infants and adults. Funding for adolescent-related AIDS research has traditionally come from those pursuing pediatric research. But adolescents are biologically more like young adults than infants yet they are still not at the same developmental stage as most adults.
Adolescents are not considered central to the pediatric mission, and researchers who focus on adults usually are not funded to include adolescents in their research programs. The result has been that adolescents appear only peripherally on the radar screens of most AIDS researchers, and when they do, it's only to the extent that they share adults' physical or behavioral traits.
Additionally, a variety of developmental and behavioral factors challenge efforts to draw adolescents into the few adolescent-specific protocols that have been developed for their benefit. Adolescents can sometimes be particularly challenging subjects for research. Researchers have reported difficulty enrolling adolescents in protocols, keeping them enrolled and ensuring that they are following precisely the guidelines for protocol conduct.
Basic research sponsored by NIH has provided and will continue to provide a better understanding of the pathogenic mechanisms and course of the disease in adolescents.
In recognition of the fact that adolescent development is different from that of both adults and children, NIH is supporting studies on adolescents.
While NIH has opened pediatric clinical trials to adolescents up to age 18 and adults trials to those clinical trials to adolescents up to age 18 and adults trials to those who are as young as 13, adolescents continue to face barriers to their participation in clinical trials. This lack of participation has left significant gaps in the knowledge base about adolescents. Scientists are quick to acknowledge that a great deal of catching up remains to be done. Basic research on adolescent reproductive and immune system development is lacking. Data are just beginning to be gathered on how the adolescents' immune system differ from that of adults, an important issue consideration in defining the response of an adolescent's body to HIV. Further studies are needed on the effect HIV has on adolescent growth and puberty.
Additional studies are needed to understand the natural history of HIV in adolescents as well as expanded study of youth and their behaviors. The NIH currently sponsors natural history studies designed to track the shifting demographics and the changing manifestations of HIV/AIDS. But there are things we need to know about HIV-positive adolescents that we don't know, such as how they become infected, how they effectively resist infection, how long they live, and how quickly they die. We don't know enough about the factors that influence the behavior of young people, including why some use drugs or alcohol and others do not; and why certain sexual behaviors are chosen over others.
Surveillance of HIV infection among adolescents in the United States has not been comprehensive enough to accurately estimate the scope of the problem. The family of HIV seroprevalence surveys should be expanded to target and teach us more about the epidemic as it affects young people. Accurate data help to target HIV prevention efforts and to forecast the kinds of services needed. Such studies would help to indicate which communities are experiencing high infection rates, how HIV is being transmitted, how long HIV-infected adolescents are ill, and the general scope of the epidemic among this age group.
The inclusion of adolescents in clinical trials permits the identification of appropriate regiments of treatment for this age group. The development of clinical practice guidelines with correct dosages and times to start treatment can only be developed from such studies. Similarly, the rapid dissemination of information concerning clinical practice guidelines, results of clinical trials, and options for trials, as well as eligibility criteria for trial participation, must be a high priority for the NIH.
There is still not enough information about the optimum time to begin anti-retroviral treatment, which treatments to use, and the correct dosages for adolescents. The lack of a significant base of adolescents enrolled in trials has resulted in little dissemination of information. At this early period in the study of adolescent-related HIV issues, even anecdotal information is important to clinicians and researchers if they are to begin building a response to the epidemic among young people.
The National Institutes of Health (NIH) has recognized that current research efforts aimed at young people are few in number and much further behind than those for adults and children. The Adolescent HIV/AIDS Research Network, a collaborative effort between the NIH and the Health Resources and Services Administration (HRSA), has been launched to plan and conduct research on the medical, bio-behavioral, and psychosocial aspects of HIV and AIDS in young people. This network, combined with other youth-focused programs at NIH and CDC can reduce the barriers to young people participating in research and narrow the information gap. Working together the Federal government and its partners should achieve the goal of providing better treatments and health care to HIV-positive adolescents and crafting Federal responses that best meet their often changing needs.