This report is neither a set of new recommendations nor a list of new ideas. It is intended as a catalyst of change in the way Americans view the threat of HIV and AIDS to the next generation.
This report was requested by President Clinton and written after numerous interviews were conducted with young people who are affected by this epidemic as well as professionals who are engaged in HIV research, prevention, and care. What they said, and what is outlined in this report, is that even though progress has been made, this nation must increase its commitment to greater understanding, education, communication, research, and care to bring an end to this tragic disease among America's youth. Until then, adolescents across America will continue to be infected and affected by HIV and AIDS at troubling rates.
One in four new HIV infections in the U.S. are estimated to occur among people under the age of 21.
An estimated 40,000 to 80,000 Americans become infected with HIV each year, or an average of 110 to 220 a day. Under current trends, that means that between 27 and 54 young people in the United States under the age of 21 are infected by HIV each day, or more than two young people every hour. A significant number of young people are engaging in sexual intercourse as well as drug and alcohol use at earlier stages in their lives. This fact, coupled with the disturbing number of adolescents who are prone to high risk behavior due to homelessness, sexual abuse, and other circumstances, places young Americans in a situation that leaves them extremely vulnerable to HIV infection. Experts expect this high rate of infection to continue unless a greater commitment to HIV prevention is made by young people themselves, their families, their educational and cultural institutions, their religious institutions, and their peers.
HIV/AIDS does not discriminate by gender, geography, or sexual orientation.
In the nearly 15 years since the first cases of AIDS were reported in the U.S., the epidemic has spread across the country. Cases have been reported in every state, Puerto Rico, the District of Columbia, and the American territories. Earlier concentrations in urban centers have given way to waves of cases in suburban and rural communities. Young gay men -- especially young gay men of color - remain at very high risk for HIV. Young women are also at an increased risk both biologically and behaviorally.
A concerted effort must be made by parents, community leaders, policy makers, schools, and young people to communicate to America's youth that they have worth and that the decisions they make now can affect them for the rest of their lives.
Reaching out to those who are most at-risk -- gay and lesbian youth, homeless and runaway youth, those in families with lower socioeconomic status, those who have lost a parent to AIDS, those born HIV positive, and illiterate adolescents -- and communicating these important messages can mean the difference between life and death. Homophobia in the design and implementation of AIDS prevention programs drives away many gay and bisexual adolescents from needed information and care.
Unless education and prevention programs are made available and accessible to young people they will continue to be at risk for HIV.
While many adolescents are aware of HIV/AIDS, enough information is not available to them on how to prevent infection and spread of the disease. Education on HIV/AIDS prevention should begin at an early age and be continually reinforced both in and beyond the classroom. Educational programs and preventive messages need to be developed and delivered by parents, teachers, religious leaders, youth leaders, and professionals working with adolescents, peers, media, and role models. Young people themselves -- serving as peer educators -- need to be enlisted and relied on as an important part of the prevention effort.
The lack of access to HIV counseling and voluntary testing for young people is a major barrier to prevention and treatment.
In some areas, there is a clear lack of access to voluntary and confidential HIV counseling and testing for young people. Lack of insurance, parental consent laws, personal finances, and transportation logistics are all barriers to access. Enhanced education programs need to include information on how a young person can receive appropriate counseling and testing for HIV. The nation's health care system needs to incorporate HIV prevention information for young people into consumer education programs and provide adequate financial coverage for young people who test positive for HIV.
Adolescents must become a bigger part of the research process.
Adolescent treatment approaches may vary from those used for adults or infants. Because little definitive research has been conducted to date with HIV-positive adolescents, the specific impact of puberty on the course of HIV infection has not yet been determined. Behavioral trends that play a key factor in treatment and prevention have also not been sufficiently studied. Barriers to more age-appropriate treatment research include the difficulties in enrolling young people in research programs and insufficient long-term funding for this research.
Young people are an important resource in the Nation's response to this epidemic.
Government, medical, and community leaders can learn a great deal by listening to the voices of young people as they articulate their needs for understanding, education, communication, and research. Young people must become more involved in our response to the epidemic and help each other understand the scope of this epidemic. They must work together with the nation's leaders to overcome a disease that threatens all our futures and the future of our country.
The goals the Federal government has established to address the epidemic of HIV/AIDS affecting the youth population, and the methods that have been set forth to achieve them, can serve as an example for states, regions, and communities across the nation.
The Federal government can further address the needs of adolescents affected by HIV/AIDS in the following ways:
- Prevention programs increasingly address the needs of young people. The Centers for Disease Control and Prevention has established the Prevention Marketing Initiative and an ambitious broadcast and print public service effort focused on HIV infection in young adults. Young people and their advocates should be included in all HIV prevention community planning councils to provide their perspective on how to best address their needs for prevention programs at the local level.
- The Department of Health and Human Services should create a forum of young people who are infected or affected by HIV as well as their parents, advocates, and health care providers to report to Federal officials and help identify and articulate the needs of adolescents in fashioning Federal responses to HIV and AIDS.
- The Health Resources and Services Administration should encourage the inclusion of young people and their advocates on AIDS care planning councils to help identify local needs and ways to target Federal funds to help meet the distinct developmental and comprehensive care needs of youth.
- The Centers for Disease Control and Prevention (CDC) should encourage the inclusion of young people and their advocates in AIDS prevention planning councils to provide their unique perspective of the needs of youth in prevention efforts.
- The Federal government should continue to help the nation's schools and other youth serving agencies implement comprehensive programs to prevent the spread of HIV among young people.
- The National Institutes of Health (NIH) and the Food and Drug Administration (FDA) should continue to encourage the enrollment of adolescents in government and industry sponsored HIV/AIDS clinical trials.
- The Public Health Service should work with the researchers, clinicians, medical community, and patients to develop appropriate clinical practice guidelines for adolescents with HIV/AIDS.
- In releasing data from clinical trials, NIH and FDA should include specific data related to adolescents. In those cases where the number of adolescents participating in a trial is too small, anecdotal data should be released on a limited basis to allow clinicians an opportunity to begin building a base of information for their use in treatment.
- The Federal government should support expanded access to testing and counseling for young people. The CDC guidelines for testing and counseling should address the special needs of adolescents, such as developmental issues, processes for consent, confidentiality, and payment for services. As part of a grant application for counseling and testing funding, states should demonstrate the availability of testing and counseling services for young people.
- The Substance Abuse and Mental Health Services Administration (SAMHSA), the Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA) should collaborate on substance abuse treatment and prevention strategies affecting adolescents to ensure a coordinated response.