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"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
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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.
SHARED
RESPONSIBILITIES
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.
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