The Facts About Young People and HIV

"In the U.S., it is estimated that two young people (age 13-25) are infected with HIV each hour."

-- Youth Report 2000, White House Office of National AIDS Policy.

"More than five young people worldwide contract HIV every minute -- that's 7,000 people each day, and more than 2.6 million each year. Half of all new HIV infections occur in young people ages 15-24, with one-third of all currently infected individuals in this age group."

-- Advocates for Youth, March 15, 2001

"More than 300,000 people in the U.S. are living with AIDS, 4,300 of them are children or youth."

-- CDC Report, 2001

My friend Danny was diagnosed with HIV at the age of 19. He was one year out of high school. He told me that he did not know anything about HIV until it was in his body.

At the age of 19, I was on my way to the University of Georgia. The year was 1985. I was not thinking of HIV. I was thinking that I needed to get my braces off before I hit the campus, find housing, learn my way around Athens, and sign up for the correct classes. I was not thinking about HIV. It was four years into the epidemic. No one was talking about it. I was not thinking about HIV. I did not see my first AIDS brochure until 1989. I began thinking about HIV. I was angry that I did not know about HIV.

I now know about HIV and I am angry that Danny's life was taken away. One of the things that I remember about Danny's story is that he had no idea that he was at risk for HIV. He told me that not one person had ever talked with him about HIV at church, school, or in the community that he lived. He never saw any information or even heard our President talk about HIV or AIDS.

Danny does not live on earth anymore, but I am reminded of his story everyday of my life because the statistics remind me that youth are continuing to become infected with HIV.

Youth Facts:

  • Many youth at risk of HIV infection have no doctor or other health care provider to turn to for advice.

  • Young people are often under the false impression that they are tested for HIV during routine medical exams, and they assume that they would be notified if they tested positive.

  • The largest gaps in medical services for youth are in substance use and mental health services, both of which are central to the needs of many HIV-infected and at-risk youth.

  • It is expected that half a million African youth ages 15 to 24 will die from AIDS by the year 2005. In African countries, half of all people acquire HIV before their 25th birthday and die by the time they are 35.

  • HIV is usually contracted sexually among young people.

  • Certain parts of the youth community have been particularly hit hard. These include young women (particularly women of color), young men who have sex with men, and minority youth.

  • In a recent survey, 87 percent of young Americans said they do not believe that they are at risk for HIV infection.

  • Research has shown that knowing one's positive HIV test results brings about significant reductions in risk behavior, avoiding transmission of the virus to others.

  • One study estimated that only 11 percent of youth living with HIV in the United States receive adequate medical care.

  • A 1992 study of HIV-infected youth conducted by the Minnesota Department of Health revealed that one third of all adolescents who had been diagnosed with HIV had discovered their illness accidentally, through mandatory testing at the Job Corps, the military, or plasma centers. The other two thirds learned of their illness through emergency rooms and acute-care settings. These youth were already sick by the time of their diagnosis.

As I reflect on this issue, I feel as if our youth are somehow "stuck in the middle." I know I felt that way! Youth are not children, yet not adults. Even clinics struggle with this issue when they have seen the person since they were children and the client is now entering teen years and early adulthood. How do you make that transition when it comes to HIV treatment, the clinic you go to and/or the resources you access?

When I was a pediatric HIV social worker I was faced with the situation of how to explain to a teenager living with HIV that life is fair despite the fact that he has outlived his entire family. This included his mother, father, and sister. He now lives under the care of an elderly grandmother who has health problems of her own. Together, grandson and grandmother will face the psychosocial realities of grieving over the loss of the other HIV-related family deaths while preparing for the possible death of one another.

The biggest piece of the pie is that for youth (adolescents), HIV medical and psychosocial issues have not been extensively researched. However, one study funded by the National Institute of Health and a project of the Adolescent Medicine HIV/AIDS Research Network, found one preliminary finding suggesting that there may be an increased potential for immune reconstitution among adolescents due to the presence of residual thymic tissue. The thymus gland is a necessary component of the immune system.

As I was doing my research, I was also surprised to learn that the first teenage case on AIDS was not presented to the Society of Adolescent Medicine until 1987, already six years into the epidemic. As a result of this delayed call to action and a continued lack of attention and funding, too many young people are unaware of their illness and are not receiving adequate care.

Society has set up so many barriers for youth to remain free of HIV. For example, the majority of testing sites are open only during school hours. Youth do not have access to these services. The majority of our schools will not even let us talk about sexual behavior or (God forbid!) pass out condoms.

What Can We Do?

Every year, AIDS Alliance for Children, Youth, and Families hosts "Voices." Voices is a conference for both providers and clients who want to work in partnership to learn more about HIV/AIDS programs and policy issues. In 1994, the conference participants took to the halls of Congress to advocate for the protection of the demonstration program within Title IV (services for women, children, and youth) of the Ryan White CARE Act and won!

While I was in Washington, DC with AIDSWatch 2001 in May, Voices participants were also walking down the halls of Congress advocating for their rights. This year the Voices theme was: The Future is Ours. The theme represented a commitment to forging ahead and joining together in the fight against HIV/AIDS.

Another effort you can get involved in is the My Voice Counts Campaign. This is a call to action for U.S. high school and college students to make their voices heard on two international issues that impact young people's lives -- HIV/AIDS and family planning. The year-long campaign, coordinated by the International Youth Leadership Council of Advocates for Youth, will mobilize students to pressure the Bush Administration and the United States Congress to increase U.S. funding for global HIV/AIDS and international family planning. It is so easy. Write a letter, following our example letter below and send it off today. You can make a difference!

The bottom line is this: there needs to be more medical and behavioral research done for youth living with HIV particularly when we consider that many of our long-term survivors of perinatally acquired HIV infection are now becoming teens. We cannot continue to lose anymore people like Danny or any of the children I worked with as a pediatric HIV social worker.

National Resources:

  • Growing Up with HIV/AIDS: Issues Conference, October 4-5, 2001
    Memphis, TN
    Call 901-448-2660

  • Larkin Street Youth Center, San Francisco, CA
    Call 415-673-0911

  • Adolescent AIDS Program at Montefiore Medical Center
    Bronx, New York City
    Call 718-882-0322
    Everything from case management to peer counseling and a newsletter, Peer Power.

  • Hertrick-Martin Institute

Extensive AIDS Peer Education for Gay, Lesbian, Bisexual, and Transgedered Youth:

  • Positively Kids
    New York
    Call 518-798-0915

  • Youth AIDS Prevention Project
    Call 360-352-2375

  • Youth and AIDS Project, Minneapolis, MN
    Call 612-617-6820

  • Bay Area Young Positives
    Call 415-487-1616

  • Planned Parenthood Health Center Locator
    Call 1-800-230-PLAN

    Sex education oriented, sponsored by Planned Parenthood



  • AIDS Alliance
    Washington, DC

  • National Pediatric and Family HIV Resource Center
    Call 1-800-362-0071

  • Advocates for Youth
    Call 202-347-5700
    Sign their petition!

  • POZ Youth Initiative
    Boston, MA
    Call 617-262-3456

  • Pedro Zamora Youth HIV Clinic
    Los Angeles, CA
    Call 323-993-7571

  • National Youth Advocacy Coalition
    Call 202-319-7596

Atlanta, Georgia Resources:

  • YouthPride
    Call 404-223-6780
    Peer-based support for gay, lesbian, bisexual and transgendered youth

  • Grady Ponce de Leon Center Adolescent HIV Clinic
    Call 404-616-2440
    Medical care, support group for youth who are enrolled at the clinic

  • AID Atlanta
    Call 404-870-7765
    Youth outreach

  • AID Gwinnett
    Call 770-962-8396
    Teen peer education

  • Atlanta Gay & Lesbian Center
    Call 404-876-5372
    Youth discussion group ages 14-24

  • Aniz, Inc.
    Call 404-758-1450
    "We Want To Know" HIV education program, ages 13-17