Lynn* was very young and very sick when she first found out. "I was in the hospital with pneumonia when the nurse finally told me I was HIV positive" explained the 21-year-old British student. "I immediately thought, 'I'm going to die'. I was only nine, and I figured I was the only kid in the world with this disease". A 15-year-old from Boston chimes in: "One day I was in the bathroom at school and I overheard a bunch of kids talking about how they would kill someone if they knew he had AIDS. I sat in the stall, half trembling because I knew they was for real -- half laughing cuz they just have no idea."
These were just two of the many stories told at a New England gathering last summer that brought together 25 teenagers from around the world who are infected with HIV and 15 adult health professionals to create the One Love: No Longer Voiceless Conference. The purpose of the five-day retreat was to convene young people who have lived too long under the burden of stigma and shame, and help them gain the skills and confidence they need to become a voice for those who have been silenced by HIV.
In the 1990s, babies born with HIV were never expected to reach adolescence. Yet, the increasing effectiveness and availability of highly active anti-retroviral treatment (HAART) during the past decade, means that these children are still with us and are trying to live normal lives. However, they live with an unspoken secret and often overwhelming feelings of isolation and anxiety about the future.
Young people 10 to 24 years old make up one of the most vulnerable, yet historically overlooked populations affected by the HIV pandemic. According to data from the 2009 Massachusetts Department of Public Health surveillance records, approximately 330 young people currently living in the Commonwealth were infected with HIV at birth. While the rate of mother-to-child transmission dramatically declined over the past 20 years in our state, new infections are occurring at an alarming rate among young people to whom prevention messages are not getting through.
What the statistics fail to convey, however, are the rates of parental loss, poverty, depression, anxiety, unemployment, under-education, and neuro-developmental delays strongly associated with HIV in the childhood and teenage years. They do not illustrate the fear of talking about HIV with friends, family and partners; the fear of stigma and discrimination; the fear of dying. The numbers fail to tell the story of what it is like to live with complex daily medication regimens that make you different from your peers and that cause, in some cases, unpleasant and poorly understood side effects. These untold realities underscore the largely unmet (and underfunded) need for structured opportunities that will prepare these young people for an adulthood most thought they would never reach.
Despite enormous attention to HIV/AIDS in the public health and medical sectors, funding and provision for essential psychosocial support for young people typically gets short shrift. Despite having access to the highest quality medical care in Boston, teenagers with HIV/AIDS often fail to maintain appropriate adherence to their medications, and they may engage in risky behavior - creating serious risks for their own health and for transmitting the virus to others. The capacity to develop into a productive and healthy adult living with HIV depends on more than world-class medical care and ground-breaking research and drugs. Most fundamentally, it depends on developing a sense of oneself as someone who is loved, listened to, connected, capable, and whole.
Over the course of our careers as health professionals, we have witnessed enormous progress in the care, treatment and de-stigmatization of HIV in the United States. From the 1990 passage of the Ryan White Care Act to President Obama's recent overturn of the HIV travel ban, changes in legislation and social attitudes toward people living with HIV owe a tremendous debt to the relentless efforts of HIV advocacy groups and AIDS activists over time. However, the work is not done. World AIDS Day 2009 is an opportunity to reflect and recommit. We as adults can do more to support young people with HIV. No matter what the economic challenges, young people living with HIV need us to join them in raising their voices and asking to be heard.
"I plan on continuing to participate in projects like this in the future," said Natasha from Rhode Island. "I will kick knowledge to the youth I come across if necessary and tell my story. This will prepare me for the future and give me strength to enforce our message among others".
*Names have been changed.