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Globally 5 million young people are living with HIV and this number is rising as children who are prenatallyinfected gain access to life-prolonging ARV treatment and new infections among youth continue.  In 2009, 370,000 babies were born HIV-positive; approximately 2,500 young people are newly infected with HIV daily. For many, HIV has become a chronic disease that necessitates lifelong treatment, care, and support. FHI 360 on behalf of USAID’s Interagency Youth Working Group will deliver two presentations at the 2012 International AIDS Conference focusing on the unique needs of young people living with HIV, and on the provision of ongoing, supportive counseling and sexual and reproductive health information.

On Sunday July 22, 2012 from 9:00 to 11:00am in Mini Room 2, FHI 360 will participate in a USAID-sponsored satellite session titled, “Journey of Life for Children Living with HIV: From Diagnosis to Adulthood.” This session will introduce several new tools and resources to address critical issues that youth living with HIV face along their continuum of care, including disclosure, adherence, retention, relationships, and sexuality. The goal of this session is to present the current evidence, best practices, and tools, and provide a forum for discussion and youth voices. (For more information about the satellite session, click on the image of the flyer.) Then on the 26th, from 12:30 to 2:30, FHI 360 will give a poster presentation on an innovative new tool, titled “Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV,” designed to assist adult facilitators in starting and leading information and support groups for young people living with HIV.  Positive Connections will be available in the fall of 2012.

If you are attending the International AIDS Conference, please join us at these two exciting events!

This is the third and final post of our Gates Foundation series, “The Stories Behind the Statistics.” The following was originally posted on the Gates Foundation Blog, “Impatient Optimists” and is available here.

Jaevion Nelson is the executive director of the Jamaica Youth Advocacy Network (JYAN).

Last August, during World Youth Day in Madrid, I was conducting outreach to encourage Catholic youth to use condoms. It was there that I heard one of the most frightening things ever: One young man told me that an HIV-positive person had no right to have sex.

It wasn’t the first time I had heard such disparaging comments about people living with HIV. Shocking as it was, this conversation was instructive. It reinforced the importance of the work my colleagues and I have been doing alongside a number of organizations worldwide, particularly Advocates for Youth, in speaking out for the more than 215 million women and girls who face an unmet need for modern contraception and the 16.5 million women of reproductive age who are living with HIV.

Worldwide, too many young people are still being denied access to essential services and commodities such as modern contraception, condoms, and HIV treatment.

As I’ve seen through my outreach and advocacy in Jamaica, the heartrending thing here hasn’t been so much a matter of limited funding. Rather, as young people, our access is too often restricted on the basis of inadequate and ideology-driven programs, policies, and laws.

It’s almost as if the existing data about our needs—even when the evidence stares policy makers right in their faces―are irrelevant. 

Within this context, women and girls and young people living with HIV are severely and disproportionally impacted. They aren’t provided the resources they need to avoid HIV transmission, prevent unintended pregnancies, and plan desired pregnancies. Just as important, they aren’t respected as central stakeholders in their own health care outcomes—as change agents that can help transform their communities for the better.

Worldwide, too many young people are still being denied access to essential HIV services and care, free from stigma.

Ultimately, the reproductive health needs of young people living with HIV aren’t so unique. After you factor in our age, sexual orientation, location, income, and HIV status, we all want to have the same things. Young people living with HIV want access to friendly services that are free from stigma just as much as the young person who is not HIV-positive, and just as much as the adult for whom policies around reproductive health are usually more favorable.

Stigma and discrimination make things needlessly complex for a young person living with HIV. While I have met a number of young people who have been bold enough to demand resources on the local and governmental levels, many others are too dis-empowered to do so. I have seen too many young girls scoffed at (at health clinics, no less) because of an unplanned pregnancy―and the discrimination is almost always exacerbated when these young people are HIV-positive.

Why must we be so cruel? It costs nothing to respect people living with HIV. It takes no effort to show compassion. We aren’t so naïve. Why should we continue to deny young people living with HIV the right to live happy, healthy lives like everyone else? We all have to play our part in advancing the rights, welfare, and dignity of young people living with HIV.

The following post was adapted from a UNICEF article written by Daniela Silva entitled, Teenagers and Young People Living with HIV/AIDS and UNICEF together for the rights to prevention, protection and participation.”

¨Adolescents and youth who live with HIV have the right to study, work, have a family, and access antiretroviral treatment (ART). We want to be treated as subject to the system of law and not as victims. We are participants; we are much more than HIV/AIDS.”  

These words, spoken by 18-year-old José, were met with enthusiastic applause at the 5th National Meeting of Adolescents and Youth Living with HIV/AIDS in Amazonas, Brazil last month. Approximately 120 adolescents and young people living with HIV or AIDS attended.  At the meeting, youth participants discussed issues of health care, education, human rights, and political advocacy. Here are some of the stories young participants shared about their experiences:

José’s story:

After suffering severe pneumonia and constant diarrhea, 12-year-old- José received the diagnosis his family so feared: he was HIV-positive. José, now 18 years old, played a major role in planning the 5th National Meeting of Adolescents and Youth Living with HIV/AIDS. 

Lucas’s story:

Lucas, 21 years old, was diagnosed with HIV two years ago. Lucas was preparing to join the Air Force when he went to the public health clinic for his physical exam. Lucas remembers the doctor saying to him, “Lucas, you are HIV-positive. But that is not the end of your life; I will send you for other appointments.”  Lucas recalls, “It was very hard to tell my family. I hid it for two years, I had to stand it on my own, with no one else to help me. When I had pain, I kept in silence; I would go to the medical station on my own. I was ashamed. I wanted to tell, but I was afraid of discrimination. I even thought of killing myself. I left home three times to live on my own and hide.” Eventually, with the help of a friend, Lucas decided to tell his aunt. “I felt relieved for telling it. My medicines were always hidden. Now my aunt reminds me the time to take the medicine and treats me with care. That was the support I lacked,” he acknowledges.

Melany’s story:

Melany, 18 years of age, grew up knowing she had HIV.  As a child, Melany often faced stigma. She remembers how the parents of her classmates met with her school director and tried to have her banned. The school maintained Melany’s right to remain in class, but many classmates were advised by their parent to stay away from her. “I was helped by my teachers, psychologists and my family. But I am still afraid of the prejudice,” confesses Melany.

Thaïs’s Story:

Thais, 18 years old, also faced discrimination at school. It was break time when her classmates started shouting she had AIDS and started physically abusing her. The abuse was eventually stopped by a teacher, but Thais refused to go back to school.  She spent many years out of school and returned only recently, thanks to the insistence and support of her family.

 The National Network of Adolescents and Youth living with HIV/AIDS

These young people and many more are united by the National Network of Adolescents and Youth living with HIV/AIDS. The organization was started three years ago and has already held five national meetings. “Joining the network is the basis for us to accept ourselves, live together with other young people living the same reality and help other young people prevent HIV so they will not suffer the way we do. The quality of life is better when we are all together in the network,” says Melany

UNICEF, along with the Ministry of Health, were the major sponsors of this event.  One of UNICEF’s top priorities is to guarantee the right of every child and adolescent to protect themselves, be protected from, and to live healthfully with HIV and AIDS. 

 “AIDS does not impede us from living, innovating, struggling, creating, studying, working, and dating. We can lead a normal life like anyone else, we have the same rights. I live happily.”-José

 

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This blog is brought to you by the Interagency Youth Working Group (IYWG) with financial assistance from the U.S. Agency for International Development and the U.S. President's Emergency Plan for AIDS Relief. The content is managed by FHI, which functions as the secretariat for the IYWG.
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