Youth & HIV/AIDS: An American Agenda A Report to the President

Prepared by the Office of National AIDS Policy. Sponsored by the
National AIDS Fund. Principally funded by The Until There's A Cure
Foundation.

The White House Washington March 5, 1996

Dear Mr. President,

Today, one-quarter of all new HIV infections in the United States are
estimated to occur in young people between the ages of 13 and 20. That
means two Americans under the age of 20 become infected with HIV every
hour of every day. The rate of infection among young people are growing
as the epidemic spreads into suburban communities and the nation's
heartland.

It is heartbreaking to see another generation of our Nation's young
people fall prey to this epidemic.

At your direction, the Office of National AIDS Policy has prepared this
report, "Youth and HIV/AIDS: An American Agenda," an examination of the
current state of the impact of HIV and AIDS on America's young people
and a series of actions that can be taken to reverse these very
troubling trends.

While progress has been made since this epidemic began, this report
underscores a crying need for public and private sector institutions to
work together even more vigorously on new prevention, treatment, and
care strategies for youth.

This report is the result of a unique collaborative effort of the public
and private sectors sponsored by the National AIDS Fund and underwritten
by the Until There's A Cure Foundation and James C. Hormel. This office
is especially grateful to a team of young people who played a critical
role in collecting information and ideas -- Miguel Bustos, Alex Danford,
Michele Kofman, and Mangierlett Williams.

I will be sharing these findings widely with national and community
leaders and with the thousands of young people who have already become
involved in AIDS prevention, treatment, and care.

As you said in your remarks to the White House Conference on HIV and
AIDS, we all have a responsibility to make sure that young people "know
we care about them and we want them to have a future."

It is my hope that this report will begin a process that helps us reach
that goal.

Sincerely,

Patricia S. Fleming Director, Office of National AIDS Policy

EXECUTIVE SUMMARY

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 20.

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 20 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,
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 and the Food and Drug
  Administration 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 effort.

PREFACE

We are four 25-year-old people who carry many labels: white, black and
Latino; male and female; straight and gay; HIV positive and HIV negative.
We are from different religious backgrounds and different parts of the
country. There are more things that distinguish us from one another than
make us similar. Yet, at our core, we are young people who have been
affected or infected by HIV and AIDS, and we are deeply troubled by what
the future may hold for us and our generation.

More than seven million people in the world between the ages of 15 and
24 have been infected with HIV. Many of them have already died. Our
generation has inherited an epidemic that is killing our parents,
friends, and loved ones, teachers, doctors, and role models.

In helping to prepare this report, we heard the voices of young people
who are living with HIV/AIDS. We heard from their friends, their
caregivers, their parents, and their families. Facts and figures help us
understand the scope of the epidemic, but it is these voices that help
all of us understand the pain, the frustration, and the suffering that
so many young people are experiencing due to HIV and AIDS.

We set out to examine the impact HIV and AIDS have had on America's
young people. We spoke with young people whose lives have been touched
by AIDS; with public health professionals engaged in HIV prevention,
treatment, care and research; and with activists advocating for change.
Each encounter brought us face-to-face with the realities of HIV and
AIDS in the lives of young people.

We have met young people who are fighting for their lives and dealing
with issues that most Americans cannot imagine at such an early age:
their own mortality. We have also seen the fear and helplessness in the
faces of young HIV-negative people who have grown up in the shadow of
AIDS. And we have seen the tremendous courage of those living with HIV
and AIDS who have used their own experiences to educate and protect
their peers.

Our experiences are not unique and these stories are not new. For more
than a decade, concerned professionals and policy makers have sought
ways to address the threat that HIV and AIDS present to our nation's
young people. Hearings and conferences have been held; reports have been
written and distributed; promises have been made.

But not all of those promises have been kept and it is time to sound an
alarm.

We are running out of time. HIV is cutting a deadly path through the
future of this nation. It does not respect nationality, social class, or
sexual orientation. It has invaded this nation's cities, suburbs, and
rural communities.

We cannot protect young people through ignorance. We cannot protect
young people by denying that they are inquisitive, sexually active, or
given to experimentation. They and we are all these things. Yet, with
education, information, and skills we can protect young people and
prevent the spread of HIV.

It is our hope that this report will open the hearts and minds of
policymakers, parents, leaders, and young people. With strong leadership,
a shared commitment to action and personal responsibility, and a
compassionate nation we can -- once and for all -- stop this epidemic in
its tracks.

We thank President Clinton for is leadership in the battle against AIDS
and his willingness to focus on this controversial subject. We also
thank Patsy Fleming for reaching out to young people for their ideas,
their voices, and their leadership.

Miguel Bustos, San Francisco, CA Alex Danford, Dayton, OH Michele Kofman,
New York, NY Mangierlett Williams, Washington, DC

Part I - A GENERATION AT RISK

Today's youth are tomorrow's future. Yet, every year in the United
States half of all new HIV infections occur among people under the age
of 25 and one-quarter of new infections occurs among people between the
ages of 13 and 21. Based on current trends, that means that an average
of two young people are infected with HIV every hour of every day.

While the number of cases of AIDS among teenagers is relatively low, it
has grown rapidly from one case in 1981 to 417 cases in 1994. The rate
of HIV infection among teenagers becomes more apparent when you examine
the number of AIDS cases among people in their 20s. According to the
Centers for Disease Control and Prevention (CDC), one in five AIDS cases
in the U.S. is diagnosed in the 20-29 year age group. Looking at AIDS
cases alone obscures the extent of the epidemic among young people.
Since a majority of AIDS cases are likely to have resulted from HIV
infections acquired 10 years before, most of these individuals are
likely to have been infected as teenagers.

Among adolescents (13-19 years of age), HIV infection is more prevalent
among those in their late teens, males, and racial and ethnic minorities.
But recent trends also point to a rise in infection and diagnosis among
adolescent females -- increasing from 14 percent of diagnosed cases of
AIDS among adolescents in 1987 to 43 percent in 1994.

What is also clear is that American adolescents are engaging in
behaviors that put them at risk for acquiring HIV infection as well as
other sexually transmitted diseases, unintended pregnancy, and
infections associated with drug injection. According to the CDC,
approximately three-quarters of high school students have had sexual
intercourse by the time they complete the twelfth grade. About 50
percent of sexually-active high school seniors report consistent use of
latex condoms and surveys indicate that condom use declines with age. In
a recent survey, one in 62 high school students reported having injected
an illegal drug. Recent reports indicate an increase in the use of
non-injectable drugs, including marijuana, cocaine, and alcohol. The use
of alcohol and other drugs impairs judgment and can lead to risky sexual
behaviors and practices, particularly for young people in the stage of
experimentation.

Also according to the CDC, about 12 million cases of sexually
transmitted diseases (STDs) are reported in the U.S. each year. Roughly
two-thirds of those cases are reported in individuals under the age of
25 and one-quarter are among teenagers. About 3 million teens contract
an STD each year, and many of these young people will suffer long-term
health consequences as a result.

Without forceful and focused action, these already troubling trends may
worsen. This is a particularly complex challenge. Adolescents are
neither large children nor small adults, yet they often are treated as
one or the other and their unique characteristics and needs are often
overlooked. Adolescents are in a developmental stage that can make them
particularly vulnerable -- both physiologically and emotionally -- to
activities that put them at risk of becoming infected with HIV.

Young people are at greatest risk of HIV infection if they have
unprotected sex outside of a mutually monogamous relationship between
two HIV-negative individuals, use injection drugs, or use alcohol or
other drugs that impair their decision-making abilities.

Adolescents often do not have the maturity, experience, or range of
options that adults usually bring to their decision-making processes.
Adolescents are engaged in a developmental process that includes
development of decision-making skills, sexual maturation and
experimentation, emotional and cognitive changes, and the molding of
identity and self-worth.

Adolescents live in a world in which their families, cultural
institutions, religious institutions, media, and peers compete to
instill values, dictate actions, and impart positive and negative
messages to them. The mass media often glamorizes youth and sex at the
same time that parents and schools are encouraging abstinence. Attempts
to turn young people into sex symbols are particularly troublesome
because of the message that sends to both young people and adults.

Adolescents, particularly those in their early teens, tend to be
short-term thinkers. To many, the present is all important and the
future often is perceived in very vague terms. Some adolescents, then,
feel invulnerable to harm and often make decisions based on immediate
desires rather than after consideration of the long-term consequences of
their decisions.

Many young people have an enhanced sense of invincibility and may be
unprepared to respond to situations that place them at risk. They may
not perceive a need to avoid the risk or be aware that certain behaviors
can place them at risk for contracting HIV. At the same time, many young
people experience stigmatization and discrimination because of their
race, ethnicity, gender, sexual orientation, HIV status, or economic
status. Such discrimination hampers their ability to navigate
successfully the many challenges and complex situations that they
confront.

Set against this backdrop is the fact that young Americans are beginning
the physiological and emotional process of puberty earlier in their
lives than did previous generations. Yet they are also postponing many
traditional adult responsibilities including full-time employment,
marriage, or a committed monogamous relationship.

All young people need thoughtful guidance and loving care. The role of
parents has never been more important in the successful development of
adolescents. But it is a job that has also become much tougher. Parents,
too, need assistance in learning how to best communicate with their
children about the often difficult subjects of sex, drug use, and death.
Many adolescents do not have adults in their lives who can effectively
provide the nurturing and guidance that they need.

Some young people are at particular risk of HIV infection due to
circumstances that are often beyond their control. Adolescents who are
victims of sexual abuse are at risk for direct transmission from their
sexual partners and may also suffer emotional problems that lead them to
later engage in high-risk behavior that can lead to HIV infection.

There are also those youth who have left or been kicked out of their
homes or who have fled abusive family relationships. They are highly
susceptible to risky behavior just to survive. Their sense of self-worth
is usually low or non-existent. They may trade sex for food, housing,
drugs, and affection. Adolescents challenged with homelessness rarely
view reducing their risk factors for HIV as a high priority in
comparison with their daily struggle for survival.

Gay, lesbian, and bisexual youth often are isolated from positive adult
role models and peers. Personal, institutional, and societal homophobia
can often deny them access to opportunities to address their developing
sexuality and contribute to a feeling of worthlessness.

Adolescents need the tools to successfully navigate an increasingly
dangerous world. Young people need to hear from parents and other adults
that they are loved, valued, and have worth as individuals so they will
internalize those feelings and believe they are worth protecting. They
must be shown the dangers they may encounter and taught negotiation and
decision-making skills. They need to be engaged in activities that will
allow them and their peers to practice those skills. And they need to
exert personal responsibility to protect both themselves and others from
infection.

Adolescent HIV prevention is a job too big for any one segment of
society. All parents, adults, leaders, policy-makers, young people, and
institutions must become constructively engaged in the important work of
preventing HIV infection among our nation's most precious resource.

Part II - PREVENTION

Until a vaccine is found, the only way to prevent new HIV infections is
through education. Adolescents can protect themselves if they are given
comprehensive information and the tools, skills, and reasons to use them.
It is incumbent on all adolescents to demonstrate personal
responsibility by protecting themselves and others. Communities
promoting the close cooperation of parents, teachers, coaches, clergy,
physicians, and other adults interacting with youth can ensure that
every young person has access to this information. Every adult who
touches a young person's life should be equipped to impart this
knowledge in a clear, accurate, sensitive manner.

Parents can be the best teachers for their children and HIV prevention
approaches for adolescents should ideally start with parents. Parents
should be key participants in HIV prevention efforts. If parents aren't
convinced of the risk to their children, they may fail to recognize
their child's risk-taking behavior. More must be done to educate the
parents of adolescents about the risks their children face and about the
means that are available to protect their children from this disease.

Efforts to encourage sexual abstinence should continue to be supported.
Teens who are thinking about becoming sexually active should be
encouraged to consider the implications of their decision and to examine
whether they are prepared to deal responsibly with these behaviors
(including taking personal responsibility for the consequences of these
behaviors and protecting themselves and their partners against disease
and unintended pregnancy). It is important that young people make
healthy and safe choices about sex. To help them make those decisions,
families and communities should help their young citizens to grow and
develop to their full potential and provide them with a safe environment
to accomplish that growth through schools, role models, and other
opportunities. Without community support and reinforcement, even the
best HIV prevention approaches will falter or fail.

Effective HIV prevention is neither a single program nor a single event;
it must take place over the course of many years and be developmentally
appropriate. Therefore, it is inadvisable to separate HIV prevention
from sexually transmitted disease prevention, pregnancy prevention,
substance abuse prevention, sexuality education, self-esteem activities,
and human development education.

National Institutes of Health programs on adolescent risk behavior and
HIV infection include programs to identify and develop potential
intervention strategies for decreasing the high-risk behaviors of young
people. Model programs are being developed to increase adolescent
STD/HIV prevention knowledge, improve attitudes, and develop skills to
delay adolescent sexual activity. Many of these programs are developing
and testing culturally sensitive and gender appropriate interventions
that target the reduction of AIDS risk behaviors among diverse groups of
adolescents. Some of these interventions have already produced positive
behavior change among homeless and runaway youth.

Successful prevention efforts concentrate on providing access to
accurate information, personalizing this information to motivate change,
providing training in behavioral skills for implementing decisions, and
reinforcing and rehearsing skills to build competence, communication,
and self-esteem. Reality-based approaches recognize that people
sometimes use faulty judgment and incorporate efforts to emphasize the
ability of individuals to recommit to their long-term goals.

Schools are a highly effective and appropriate place to teach young
people HIV prevention information and skills before they begin the
behaviors that put them at risk for HIV infection. An estimated 98
percent of young people between the ages of 5 and 17 are enrolled in
schools. The Centers for Disease Control and Prevention (CDC) has
implemented a multi-faceted program to help schools and other agencies
that serve youth across the nation provide effective health education to
prevent the spread of HIV. This program is based on the principle that
the specific scope and content of HIV education in schools should be
consistent with parental and community values. CDC provides funding and
technical assistance to the departments of education in every state, six
territories, and 18 large cities. CDC also has developed "Guidelines for
Effective School Health Education to Prevent the Spread of AIDS.

Beginning at the earliest appropriate age, young people should receive
sexuality and HIV/AIDS education as part of a comprehensive curriculum
of health education. Such a curriculum should include accurate
information about HIV and modes of transmission, the opportunity to
assess personal risk of infection, and skills training. HIV prevention
information should be age-, language-, and culturally-relevant and
designed to accommodate the context of the lives of young people and
their families.

There is a compelling need for comprehensive school-based HIV prevention
education, yet those school-based efforts are just one step in a long
journey to effectively protecting adolescents from HIV. School-based
programs do not reach all youths at risk. Those adolescents not in
school -- because they have graduated or dropped out -- will need to be
reached with the same kind of basic information that schools provide to
all others.

Misconceptions and misunderstandings about HIV transmission and
high-risk behaviors often arise when relevant information is omitted.
Sexuality education, when done properly, reflects the needs of the
community and acknowledges the value of both abstinence and safer sex as
tools to prevent HIV infection. Yet in some school districts, education
policies preclude discussion of subjects such as intercourse,
homosexuality and bisexuality, and condom use. Discussion of the facts
concerning such matters is not inconsistent with also encouraging
abstinence or delayed sexual activity.

The job of HIV prevention is too important to be left to health
educators alone. As mentioned before, all adults who work with young
people should be armed to impart HIV prevention information effectively
and sensitively to adolescents in their charge. This requires approaches
that work -- those designed to work well in a given community -- and
that can be employed to meet a variety of prevention needs.

Yet, teaching young people something and ensuring that they will follow
through with what they've been taught are two separate things. To be
successful, HIV prevention efforts must be targeted and they must be
sustained. Lessons learned from efforts to prevent smoking, substance
abuse, and teenage pregnancy demonstrate that such efforts can
positively affect adolescents' behavior.

In 1994, the Centers for Disease Control and Prevention (CDC) launched
the Prevention Marketing Initiative (PMI), a comprehensive HIV/AIDS
education and prevention program involving partnerships between Federal,
state, and local government and national and community- based
organizations throughout the U.S. The PMI specifically targets young
adults between the ages of 18 and 25. In 1994 and again in 1995, CDC
prepared and distributed public service announcements aimed at young
adults that communicate two central messages. First, sexual abstinence
or delaying sexual activity is the most effective way to prevent sexual
transmission of HIV. Second, for those who are sexually active outside
of a mutually monogamous relationship, the correct and consistent use of
latex condoms is an effective method of preventing HIV transmission.

Successful HIV prevention efforts also have recognized that behavior
isn't changed with knowledge alone. An analysis of approaches that are
successful in reducing high risk behavior among young people found that
schools often were at the focal point of these efforts and that
community-wide, multi-agency efforts were needed both in terms of
funding and reinforcement of messages. Successful prevention efforts
also have been designed to meet the specific needs of target audiences
and offer their services outside the traditional school-based setting.

Community-based organizations are also a valuable and credible source of
prevention messages. They can supplement, support, and reinforce
messages from within families and schools.

Peer counselors -- young people trained in providing HIV/AIDS-specific
information -- have been shown in NIH-sponsored studies to be
particularly successful messengers. Peer educators have repeatedly
demonstrated that they can present material in a way that addresses the
relevance of HIV and HIV prevention to young people's lives. Adolescents
often find prevention messages more believable when they are delivered
by their peers.

Peer-led prevention efforts are currently being conducted at a variety
of sites around the country but many more such efforts are needed. The
challenge lies in supporting the development and application of programs
that are innovative and address the needs of adolescents.

Part III - TESTING, TREATMENT AND CARE

Advances in science and medical care have enabled individuals living
with HIV to live longer, healthier lives. Drugs and treatments now are
available to arrest or even prevent opportunistic infections that
previously led to death. New classes of drugs now in development may
hold promise for dramatic improvements in life expectancy and quality of
life. However, in order to access such care, individuals must know their
HIV status and be connected to a continuum of care.

Millions of young people who have engaged in high-risk behaviors do not
know their HIV status. Adolescents should be strongly encouraged to
learn their HIV status. A negative test provides the best opportunity to
reinforce the importance and efficacy of risk-reduction behaviors. A
positive test provides an immediate opportunity to link those who are
HIV-positive to treatment, often at an early stage of disease
progression. Such early intervention has been shown to be highly
effective at prolonging and improving quality of life.

In 1994, the Centers for Disease Control and Prevention (CDC) supported
HIV counseling and testing services in approximately 9,600 sites
throughout the U.S. Those sites accommodated approximately 400,000
visits by persons 19 years of age of younger.

Many of those services are provided at little or no cost to youth with
parental permission. In addition, the CDC supports the National AIDS
Hotline and the National AIDS Clearinghouse, which provide referral and
information services through toll-free telephone services. Both are
private, free, and confidential and are well publicized.

HIV testing should always include appropriate pre- and post-test
counseling to ensure that both HIV-negative and HIV-positive young
people understand their status and their responsibilities to themselves
and others as a result of that status. Pre- and post-test counseling is
particularly important for adolescents. Counseling should be appropriate
for the adolescents' social and emotional development, language, culture,
and sexual orientation. Effective counselors are sensitive to the great
anxiety adolescents feel about HIV testing because of fear of the
disease as well as the stigma attached to the disease. As with
prevention efforts, the use of peer educators in pre- and post-test
counseling has been shown to be effective in communicating critical
information to adolescents at what is often a highly emotional point.

The process of testing for HIV allows adolescents to evaluate their own
behavior and think of the consequences of that behavior. As a result,
there are numerous emotional needs tat must be dealt with by both
adolescent and counselor if the effort is to be a success. The
involvement of parents and other family members is critical to an
HIV-positive youth's ability to cope with this diagnosis and enter into
a continuum of care.

Whether the results are positive or negative, post-test counseling is
equally important. For adolescents who test negative, post-test
counseling provides an opportunity for further risk reduction. For some,
this may be the only opportunity for meaningful prevention education.
Positive results require immediate intervention. It is essential that
adolescents have an opportunity to talk to knowledgeable persons who can
help them understand what their HIV status means and help them deal with
issues that may seem overwhelming. HIV-negative youth should have that
behavior reinforced.

Adolescents' access to HIV counseling and voluntary testing often is
severely limited by a variety of factors. First, many adolescents don't
know how to arrange for HIV testing and where to go for such services.
Second, adolescents do not have the money or means of transportation
necessary to access some forms of counseling and testing. Third, school
hours often coincide with the hours of counseling and testing facilities.
Finally, parental consent requirements for counseling and voluntary
testing also may pose a barrier for many young people -- especially
those who know or feel they cannot communicate openly with their parents
about this subject.

Taken singly, these barriers can make it difficult for an adolescent to
get counseled and tested. Combined, they present a formidable barrier
that only a truly determined adolescent can surmount.

To address some of these concerns, HIV counseling and voluntary testing
sites need to be designed to be accessible to adolescents. Business
hours should complement rather than compete with school schedules and
facilities should offer their services at low or no cost to adolescents.
This would accommodate adolescents who don't own a car and must use
public transportation, are in school and involved in extra-curricular
activities, and have little money or independent health insurance.

A particularly challenging impediment to counseling and testing is the
legal requirement in many states for parental consent. Consent is
usually necessary for medical care of individuals under the age of 18.
The conditions under which minors may consent to HIV testing vary across
states. Ideally, parents, young people, and health care providers should
all possess the skills and knowledge necessary to maximize a youth's
access to services and support. However, consideration should be given
to creating alternative access to counseling and testing where obtaining
parental consent is not possible.

Linking HIV-positive adolescents to a system of HIV primary care
immediately after a positive diagnosis is vital in order to prevent or
delay the onset of HIV-related opportunistic infections, such as
Pneumocystis carinii pneumonia (PCP), and to prolong the healthy lives
of HIV-positive individuals. An integrated care system, in which medical
services are connected to mental health, substance abuse, education,
juvenile justice, and social support is necessary to meet the needs of
these adolescents. For runaway or homeless youth, housing and nutrition
services are also critical. Currently, there are few programs that meet
the full range of health care needs for HIV-positive youth. Efforts are
plagued by insufficient numbers of primary care physicians and other
health care providers specifically trained to work with adolescents,
lack of insurance and other financial assistance, a fragmented health
care system, and geographically remote facilities. NIH is supporting
programs to identify better ways of facilitating access, utilization,
and adherence to medical, mental health, and substance abuse treatment
by adolescents.

Large numbers of young people are uninsured or underinsured, and the
sources for funds to pay for necessary services are limited. If an
adolescent is HIV-positive access to insurance often is blocked by
insurance policies that exclude individuals with pre-existing medical
conditions.

Federal grants for program development such as the Health Resources and
Services Administration's Ryan White CARE Act, including Special
Programs of National Significance (SPNS), have encouraged care models
that consider the special needs of the adolescent population and provide
communities with the tools they need to conduct effective outreach
programs. Title IV of the Ryan White CARE Act provides support for the
development of innovative models that link systems of comprehensive
primary/community-based research, medical, and social services for
children, adolescents, and families.

Besides responding to an HIV-positive adolescent's physical and mental
health needs, linkage with important social services is also an
important element to care. Social service providers should be trained to
offer referrals for legal assistance, other treatment programs,
information about housing, job-training assistance, and help in
obtaining health insurance. They also are more able to offer outreach
services for adolescents who are homeless, pregnant, or trading sex for
food and shelter.

Medicaid provides coverage for a comprehensive set of benefits that
includes counseling and testing, prescription drugs, physician visits,
inpatient hospital care, substance abuse treatment, home care, and
hospice care. Medicaid coverage of children and adolescents has been
improved in recent years but many low-income families may not be aware
of their eligibility for such benefits. The Federal government and
states should examine opportunities to ensure that all Medicaid-eligible
HIV-positive youth have access to appropriate treatment and care.
Medicaid is the largest single payer of direct medical services for
people living with AIDS, serving nearly 50 percent of all persons living
with AIDS and more than 90 percent of children with AIDS.

Part IV - RESEARCH

HIV/AIDS research 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 are not getting sick as often, their
illnesses aren't as severe, and they are spending less time in the
hospital than they did 10 years ago. But adolescents have not received
the full benefit of recent research discoveries, and there is
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 adults than infants yet they
still are 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 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 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
adolescent's immune system differ from that of adults, an important
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 choose to be sexually active and others do
not; why some use drugs or alcohol and others do not; and why certain
sexual behaviors are chosen over theirs.

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 regimens 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 still is 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 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, biobehavioral, and psychosocial aspects of HIV and AIDS in
young people. This network,combined with other youth-focused efforts 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.

Part V - FURTHER STEPS

This examination of youth and HIV revealed six common themes that
require action at all levels of American society. There is strong
consensus among scientists, educators, 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 efforts aimed at young people must
  be encouraged, adequately funded, and evaluated, and -- when found to
  be effective -- broadly disseminated;

  * Comprehensive HIV/AIDS education - as part of comprehensive health
  education - should be available to all young people in all fifty
  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 biomedical and behavioral research should 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:

(1) Seeking a cure for those who are living with HIV/AIDS and a
preventive vaccine to protect those who are uninfected;

(2) Helping communities cope with the financial costs of caring for
those who are living with HIV/AIDS; and

(3) 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 programs 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 also increased 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 funding
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 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 with 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 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.

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
should be taken to assure that this occurs:

  * The National Institutes of Health and the Food and Drug
  Administration should continue to encourage sponsors to enroll
  adolescents, when feasible and appropriate, in HIV/AIDS clinical
  trials.

  * In releasing data from clinical trials, NIH and FDA should include
  specific data related to adolescents. When 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 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 for 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 should be taken:

  * CDC's counseling and testing guidelines should acknowledge and
  address the special needs of youth seeking such services. This
  guidance should address such issues as 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;

  * CDC should require that, as part of the 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 efforts
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 combatting the
spread of HIV. These efforts should continue and should 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.

ACKNOWLEDGMENTS

We are very grateful for this insight and appreciate the time taken by
scores of individuals and organizations to draw out the many complicated
issues surrounding HIV and AIDS among young people. This report reflects
the knowledge, concerns, and commitments of those individuals and the
people they serve.

The National AIDS Fund coordinated the preparation of this report and
supervised the administration of grants from the Until There's A Cure
Foundation and James C. Hormel. In addition, the Fund recruited the four
interns who conducted much of the report's research and preparation. The
Fund also arranged visits to local programs of significance. Paula Van
Ness, Fund President, brought together funders, youth experts and staff
to help make this public-private initiative possible. The project was
managed for the Fund by Jerry Atchison, Director of Communications.
Providing important oversight and coordination efforts among youth
groups around the country was Gretchen Wooden, Senior Program Officer
for Youth Initiatives.

In the Office of National AIDS Policy, Brenda Kunkel and Richard Sorian
assisted in directing and completing this project along with Jeff Levi,
LaHoma Romocki, Jane Sanville, and Carmena Parris. Several White House
interns and volunteers were also helpful in the research and preparation
of this report: Jesse Souweine, Julie Blessing, Lisa DaValle, Rachel
Garfield, Brenda Hahn, Vanessa Potkin, Jessica Purdy, Katie Smeltz, and
Rachel Smith.

Numerous organizations, both national and local, were instrumental in
providing us with direct access to young people and their advocates. The
AIDS Policy Center for Children, Youth and Families, the National
Alliance of Positive Youth (NAPY), Metro TeenAIDS, the National
Association of State Boards of Education, and participants at the
National Youth Summit on the Prevention of AIDS Among Youth were
especially helpful. We also appreciate the assistance of the National
Advocacy Coalition on Youth and Sexual Orientation (NACYSO) the National
Youth Network, the Latino/a Lesbian and Gay Organization.

Transportation for representatives of youth and HIV education and
advocacy groups was generously provided by USAir.

Several Federal agencies made major contributions to the content of this
report: the Centers for Disease Control and Prevention, Health Resources
and Services Administration, Substance Abuse and Mental Health Services
Administration, National Institutes of Health, Health Care Financing
Administration, and Food and Drug Administration.

The following list includes some, but certainly not all, of the
individuals who provided assistance during the research and preparation
of this report. Many of the young people with whom we met preferred to
remain anonymous and we, of course, respect those wishes. Each of them
should know that they have made an important contribution to this report
and to our national response to HIV and AIDS.

Alicia Beatty-Tee The Circle of Care Philadelphia, PA

Val Bias National Hemophilia Foundation Washington, DC

Ana Maria Branham Arizona Department of Health Services, Phoenix, AZ

Angela Bryan, MA Prevention Marketing Initiative Phoenix, AZ

Rea Carey National Advocacy Coalition on Youth and Sexual Orientation
Washington, DC

Tim Cincinato Names Quilt Project Sacramento, CA

Daniel Daley Sexuality Information and Education Council of the U.S.
Washington, DC

Larry D Angelo, MD, MPH Children s National Medical Center Washington,
DC

Dale Dayton University of Cincinnati Medical Center Cincinnati, OH

Jane Delgado Coalition of Hispanic Health & Human Service Organizations
Washington, DC

Bob Diairio Board of Education New York, NY

Ralph DiClemente, PhD University of Alabama Birmingham, AL

Kevin Doughtery, MD Payne Whitney Clinic New York, NY

Abigail English, JD National Center for Youth Law Chapel Hill, NC

Donna Futterman, MD Montefiore Medical Center Bronx, NY

Kristy Galvan American Red Cross Falls Church, VA

Thomas Gleaton Inner City AIDS Network Washington, DC

David Harvey AIDS Policy Center for Children, Youth & Families
Washington, DC

Karen Hein Institute of Medicine Washington, DC

Antigone Hodgins Bay Area Young Positives San Francisco, CA

Bernice Humphrey Girls Incorporated Indianapolis, IN

Joyce Hunter, MSW HIV Center for Clinical and Behavioral Studies New
York, NY

Jon Imparato Gay and Lesbian Community Services Center Los Angeles, CA

Ibby Jebson Institute for Family Centered Care Bethesda, MD

Paul Kawata National Minority AIDS Council Washington, DC

Cinaro Kennedy Columbia University New York, NY

Frances Kunreuther The Hetrick-Martin Institute New York, NY

Carol Levine Adolescent Alone Project New York, NY

Felicia Lynch National Association of People with AIDS Washington, DC

Kevin McDermott Greater Mount Calvary Holy Church AIDS Ministry
Washington, DC

Kim Miller, PhD Louisiana State University Medical Center New Orleans,
LA

Kevin Mischka Metro TeenAIDS Washington, DC

Demetri Moshoyannis Youth Positive DC Washington, DC

Rudy Navarro Maricopa County Community AIDS Partnership Phoenix, AZ

Kevin Neal Metro TeenAIDS Washington, DC

Gretchen Noll National Network for Youth Washington, DC

Judy Norton Arizona Department of Health Services Phoenix, AZ

Phyllis Orosco Sacramento, CA

Marj Plumb New York City Department of Health New York, NY

Keith Pollanen National Association of People with AIDS Washington, DC

Steve Rabin, JD IssueSphere New York, NY

Michael Reece HIV Prevention/Education Community AIDS Council Phoenix,
AZ

Gary Remafedi University of Minnesota Minneapolis, Minnesota

Jennifer Hinks Reynolds Advocates for Youth Washington, DC

Sean Sasser AIDS Policy Center for Children, Youth & Families Atlanta,
GA

Janet Shalwitz, MD Health Initiatives for Youth San Francisco, CA

Jane Silver American Foundation for AIDS Research Washington, DC

Peter Simpson United Way Sacramento, CA

Wayne Smith HIV Task Force San Francisco, CA

William Smith, EdD Academy for Educational Development Washington, DC

Stephen Thomas, PhD Emory University Atlanta, GA

Michael Wallace Indiana State Department of Health Indianapolis, Indiana

Kristen Weeks Prevention Marketing Initiative Sacramento, CA

Mildred Williamson Cook County Hospital Chicago, IL

Laurie Yosick Columbia AIDS Task Force Columbia, OH

Toni Young National Women and HIV/AIDS Project Washington, DC

The National AIDS Fund

The National AIDS Fund is the nation's largest philanthropic and
grantmaking organization dedicated to eliminating HIV and AIDS as a
major health and social problem. It works in partnership with
communities to provide care and to prevent new infections through
education, research, and outreach. Since it was founded, the Fund has
provided almost $50 million to communities for HIV/AIDS programs,
supporting more than 2,400 such programs in 31 states. The Fund also
provides program and technical assistance for hundreds of national and
local educational programs -- such as the Youth and HIV/AIDS Report --
and programs of direct service. The Fund also provides the nation's
business community a network of leading corporate, government, and
nonprofit experts who deal with HIV/AIDS policy issues, and it publishes
a broad range of HIV/AIDS publications for both managers and employers.

The Until There's A Cure Foundation

The Until There's A Cure Foundation, principal funder of the Youth and
HIV/AIDS Report, provides funding for innovative education programs to
encourage safer behaviors among teens and young adults through
peer-to-peer education. For those living with HIV/AIDS, the Foundation
provides financial support for care and other services. For future
generations, the Foundation supports AIDS vaccine development with funds
being primarily contributed through the International AIDS Vaccine
Initiative of the Rockefeller Foundation. Through partnerships with
professional sports teams, the Foundation has reached audiences with its
message of AIDS awareness. The Foundation was created by Kathleen
Scutchfield and Dana Capiello, two mothers and entrepreneurs who have
raised funds to support Foundation Initiatives through sale of The
Bracelet, a 1/4-inch cuff bracelet featuring a familiar small raised
AIDS ribbon.

CAPTIONS:

"It is one of the joys of childhood that children think they will live
forever. It is one of the curses of childhood in some of our meanest
neighborhoods that children think they won't live to be much beyond 25
anyway. In a perverse way, both of those attitudes are contributing to
the problem, because one group of our children think that they are at no
risk because nothing can ever happen to them - they re bulletproof.
Another group believes that no matter what they do, they don't have much
of a future anyway. And they are bound together in a death spiral when
it comes to this. This is crazy. We have got to find some way to tell
them you must stop this." President Clinton, December 6, 1995, to the
White House Conference on HIV and AIDS.

"If you re going to educate kids about AIDS, you have to educate them
about drugs as well. If you re a youth, you re going to experiment with
drugs, especially if you live in a metropolitan area. Even though you
get stupid with drugs, you still think about things you don't want to do,
but you do it anyhow." 16-year-old HIV-positive youth from San Francisco.

"We grow up hating ourselves like society teaches us to. If someone had
been `out about their sexuality. If the teachers hadn't been afraid to
stop the `fag and `dyke jokes. If my human sexuality class had even
mentioned homosexuality. If the school counselors would have been open
to a discussion of gay and lesbian issues. If any of those possibilities
had existed, perhaps I would not have grown up hating what I was. And,
just perhaps, I wouldn't have attempted suicide." Kyallee, 19.

"People say HIV is this or that group's problem, not mine. But for HIV,
it's a matter of risk behaviors, not risk groups. Because if you say
it's a risk group thing, I don't identify with that group, so I'm not at
risk. That makes people feel invincible to HIV." HIV-positive youth.

"We, the young people of this country, need a place where we can go to
ask our questions, where we won't be teased or ridiculed. We need a
place where we can ask about our mixed up feelings, about sex, and about
AIDS." 15-year-old high school student from Concord NH.

"If I could talk to the President, or a Senator, or anyone in the
Federal Government who can make a difference, I'd tell them to take a
look, learn a lesson from the youth that are currently dealing with the
disease. Listen to them, hear their stories and then see that they have
a future. If they don't have that future, then we won't have an
America." -- Allan, San Francisco.

"I go to a free clinic that I feel really comfortable in. It's really
family-oriented. The people are really caring, and they all know me.
When I was 19, I took the HIV test on a whim. I really didn't expect a
positive result. But that's what it was. Everybody working at the clinic
cried." Ayisa, 20, New York.

"I was infected with HIV by my first partner when I was 16 years old.
Now at 20 I have this virus that's taking my life because everything I
heard when I was younger was sugar coated. We need more complete
information than what we are being given.Even the pamphlets concerning
HIV/AIDS prevention are too basic and bland. We need to know real
stuff." -- Ryan, age 20.

"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? Where is the
future leading for my 3-year-old daughter?" "Haitien"

"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 document is from the Office of National AIDS Policy