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.
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