Part 5: Further Steps
"The great burden we have as Americans is that when we have to deal with something new, too often we can't deal with it from imagination and empathy, we have to actually experience it first. I do not want to wait until every single family has somebody die before we have a good policy on HIV and AIDS."
-- President Clinton, December 6, 1995
to the White House Conference
on HIV and AIDS
This examination of youth and HIV revealed five common themes that require action at all levels of American society, including the Federal government. There is strong consensus among scientists, health care providers, community leaders, and young people themselves on these matters. They are:
- Young people, parents, schools, and communities must be integral partners in developing, delivering, and evaluating, HIV prevention approaches for adolescents;
- Innovative, creative prevention programs aimed at young people must be encouraged, adequately funded, and -- when found to be successful -- broadly distributed;
- Comprehensive HIV/AIDS education--as part of comprehensive health education--should be available to all young people in all 50 states and U.S. territories;
- Routine counseling and voluntary HIV testing should be made more accessible, developmentally appropriate, and affordable to young people;
- HIV-positive adolescents should be linked to a continuum of care and services that will extend their life span and provide them with the information and skills they need to reduce the likelihood of further transmission;
- Adolescent-specific treatment and behavioral research must be increased to enhance our knowledge of the progress of HIV disease in adolescents and of effective AIDS prevention approaches.
THE FEDERAL ROLE
The Federal Government has three central responsibilities in leading our country's battle against HIV and AIDS:
- Seeking a cure for HIV /AIDS and a preventive vaccine to protect those who are uninfected;
- Helping communities cope with the financial costs of caring for those who are living with HIV/AIDS; and
- Working with communities to foster behaviors that prevent the spread of HIV.
During the past three years, the Clinton Administration has sought to fulfill these obligations by submitting budgets that would increase overall funding for AIDS-related research by 40 percent. Funding for AIDS-related research has been increased by 26 percent and the Office of AIDS Research at the National Institutes of Health has been strengthened. Funding for AIDS prevention efforts has been increased by and a new community planning process has directly involved local organizations in the design of prevention programs. Funding for AIDS-related care has increased by 90 percent, including a 108 percent increase in money going to the Ryan White CARE Act. New efforts have been made to involve young people in each of these areas. The government has vigorously enforced provisions of the Americans with Disabilities Act prohibiting discrimination against people living with HIV and approval time for AIDS-related drugs has been cut in half.
In conjunction with this report, the following new initiatives are should be undertaken:
Listening to the Voices of Youth. Young people should be encouraged and empowered to have a voice in the development and implementation of HIV/AIDS research prevention, and care efforts. The Federal government should take the following steps to assure that voice is heard:
- The Department of Health and Human Services should create a forum of young people who are infected or affected by HIV along with their advocates and providers. This group should work with relevant federal agencies to help identify and articulate the needs of adolescents in fashioning Federal responses to HIV and AIDS;
- The Health Resources and Services Administration (HRSA) 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; and
- 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;
Examining the Impact of HIV on Youth. Sufficient scientific information exists to indicate that HIV may behave differently in infected adolescents and that there are adolescent-specific health-care needs and treatment protocols that must be identified in order to respond effectively. The following steps are being taken to assure that this occurs:
- The National Institutes of Health (NIH) and the Food and Drug Administration (FDA) should continue to encourage sponsors to enroll young people, when feasible and appropriate, in HIV/AIDS clinical trials;
- In releasing data from clinical trials, NIH and FDA will include specific data related to adolescents. When the number of adolescents participating in a trial is too small, anecdotal data will be released on a limited basis to allow clinicians an opportunity to begin building a base of information for their use in treatment; and
- The Public Health Service should continue to develop in collaboration with researchers, clinicians, and the infected and affected community, clinical practice guidelines and expeditiously disseminate the latest information on state-of-the-art therapies, options for trials and eligibility criteria or entry into them, and health care and prevention techniques to U.S. and international communities affected by HIV/AIDS;
Making Informed Decisions. HIV counseling and voluntary testing provide an important bridge between HIV prevention and care. To assure that young people have access to such services, the following steps are being taken:
- CDC's counseling and testing guidelines should acknowledge and address the special youth seeking such services. This guidance should address such processes for consent, confidentiality, and payment for services. The guidance should be integrated into the training of all personnel at CDC-funded counseling and testing sites; and
- CDC should require that, as part of the state grant application for counseling and testing funds, states demonstrate the availability of counseling and testing for young people.
Any effort to protect young Americans from the threat of HIV and AIDS cannot begin and end with the Federal government. These Federal should serve as the catalyst for action on all levels of society. Throughout the history of the epidemic, states, localities, communities, schools, churches, synagogues, private foundations, and voluntary charitable organizations have been actively committed to combating the spread of HIV. These efforts should continue and be expanded. The Federal government seeks and looks forward to a closer partnership with communities involved in this effort and pledges its continuing support for the critical work being done.