A Decade of Denial

With this report, the Select Committee on Children, Youth, and Families warns that HIV, the virus that causes AIDS, is spreading unchecked among the nation's adolescents, regardless of where they live or their economic status.

Today, teens and young adults with AIDS live in 49 states and the District of Columbia, nearly 100 large metropolitan areas, and scores of rural and small communities across the country. Thousands of others are infected with HIV and millions of adolescents live in danger of contracting the virus.

The number of teens who already have AIDS increased by more than 70% in the past two years alone, and AIDS is now the sixth leading cause of death among youth ages 15-24. Over 5,000 children and young adults have died as result of AIDS.

These are the findings of the Select Committee, determined from a thorough review of the literature, our own surveys of Federal agencies and front-line community experts, and from our analyses of data provided by Federal sources.

Societal denial and indifference are continuing to undermine the nation's ability to confront this deadly disease. But when discussion turns to AIDS and teenagers in particular, the tones become even more hushed or moralistic. With any reference to teen sexuality, the walls go up and evasion begins. But blinders will not keep the epidemic at bay.

Nostalgia about the "wonder years" of adolescence has helped keep teens in the dark about dangers and challenges which could dramatically alter their futures. But for our teens, the wonder years have become the worry years. Teens today not only have

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to worry about "finding" themselves, they must also worry about contracting an incurable and fatal disease.

Worry isn't confined to our teens. Society must worry about the staggering psychological, humanitarian, and economic costs of ignoring this epidemic. By 1991, the estimated cost of treating persons with HIV and AIDS was nearly $6 billion. Lost economic productivity due to AIDS no doubt exceeds this

amount.

Even if from today forward no one else was infected, the resources required to care for the estimated one million Americans now infected with HIV would be astronomical. The potential cost to society of denying that AIDS threatens the lives of a new generation of young adults is devastating.

Based on hearings, current research, and interviews with experts, including researchers, medical and service providers, AIDS educators, and youth who have been touched by the epidemic, this Select Committee report assesses the impact of the HIV epidemic on youth and identifies strategies policymakers and program planners might consider.

We surveyed the major Federal agencies involved in AIDSrelated activities, and for the first time, have documented that Federal intervention is underfunded, uncoordinated, and largely unsuccessful. It cannot meet the burgeoning need for preventing the spread of HIV among adolescents and serving teens who are infected. Based on the limited information the agencies provided, less than 5% of the current Federal AIDS budget (excluding Medicaid) funds research, programs or services that benefit teens.

Denial of the problem at the Federal level where leadership should be paramount is a national disgrace. Few

Federal resources are dedicated to research or data collection that involve adolescents and their health care providers. Prevention efforts to curb risk taking behavior among youth are sketchy. And use of explicit information about preventing HIV infection is often discouraged or even prohibited.

Significant financial, institutional, legal and social barriers hinder adolescents' access to health care. The Federal government offers little help in breaking down these barriers.

But this report is not just a compilation of relevant statistics or a review of Federal efforts. It is an urgent plea to confront the problem of AIDS and adolescents and takes the first step by laying the groundwork for positive policy and community change that should prove valuable to policymakers and program planners.

The Select Committee has confirmed that experts agree early intervention is the best strategy to prevent further spread of the virus. It is easier to prevent risky behavior before it starts than to change entrenched behaviors. However, few efforts to control HIV infection have targeted adolescents who are initiating sexual and drug use activity at younger and younger ages. This failure has seriously hindered our ability to contain the epidemic and to meet the needs of young people and their families who have been devastated by it.

While the Select Committee found that the extent of the problem is alarming, there is good news as well. We identified many innovative programs which prevent or reduce risky behavior among youth. These model efforts often combine intensive individual attention with life skills training and involve peer educators, parents, schools, and community organizations, which provide resources and reinforce messages.

Unfortunately, these comprehensive programs are the exception rather than the rule. Few HIV prevention efforts have gone beyond "AIDS 101" to provide youth with the skills and support they need to be safe. Little has been done to reach outof-school youth who often face significantly greater risk of infection.

To understand how some programs root themselves successfully in their communities and overcome obstacles to providing services to teens, the Select Committee also conducted key informant interviews with front-line experts from prevention programs from across the country.

to worry about "finding" themselves, they must also worry about contracting an incurable and fatal disease.

Worry isn't confined to our teens. Society must worry about the staggering psychological, humanitarian, and economic costs of ignoring this epidemic. By 1991, the estimated cost of treating persons with HIV and AIDS was nearly $6 billion. Lost economic productivity due to AIDS no doubt exceeds this

amount.

Even if from today forward no one else was infected, the resources required to care for the estimated one million Americans now infected with HIV would be astronomical. The potential cost to society of denying that AIDS threatens the lives of a new generation of young adults is devastating.

Based on hearings, current research, and interviews with experts, including researchers, medical and service providers, AIDS educators, and youth who have been touched by the epidemic, this Select Committee report assesses the impact of the HIV epidemic on youth and identifies strategies policymakers and program planners might consider.

We surveyed the major Federal agencies involved in AIDSrelated activities, and for the first time, have documented that Federal intervention is underfunded, uncoordinated, and largely unsuccessful. It cannot meet the burgeoning need for preventing the spread of HIV among adolescents and serving teens who are infected. Based on the limited information the agencies provided, less than 5% of the current Federal AIDS budget (excluding Medicaid) funds research, programs or services that benefit teens.

Denial of the problem at the Federal level where leadership should be paramount -- is a national disgrace. Few Federal resources are dedicated to research or data collection that involve adolescents and their health care providers. Prevention efforts to curb risk taking behavior among youth are sketchy. And use of explicit information about preventing HIV infection is often discouraged or even prohibited.

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A Decade of Denial: Teens and AIDS in America : a Report of the Select ...