At Kawolo Hospital, in a suburb outside the capital of Uganda, I looked around a group of doctors, nurses, mothers and children and I found myself surrounded by people who understood my story.
Shortly after the birth of my daughter Victoria, she was diagnosed with pneumonia. The second time that she got severely sick, Sandra and I immediately took her to the emergency room at St. Vincent's Hospital in New York City. After a preliminary examination the intern on duty told us that it looked like PCP, the AIDS pneumonia. He was right. Over the next days we discovered that Sandra, Victoria, and our older son Reed had HIV. My life changed dramatically on that fall day in 1988.
In Mukono Health Clinic #4, we sat in a cleared out maternity ward. The walls of the ward were pealing and the small windows were cracked. I shared my story with the small group that had assembled, and numerous people in the room offered us a window into their lives as well. They stood up, one after another, and in soft, broken English talked about their lives. I could relate to their stories: a tall, elegant woman in a green, tribal pattern outfit spoke about her fear of revealing her HIV status to her own family; a seventeen-year-old girl in a white and navy blue school uniform talked poignantly about choosing to change schools to avoid the social pressure and stigma that she was faced with once her classmates discovered her diagnosis; an inhibited, college-age man wearing glasses shared that he had been near death several times and that he struggled to be consistent taking his medication; a social worker talked to the group about trying to find the words to help a teenager discuss his HIV status with his girlfriend.
At the clinic I also heard the stories of those who were not able to readily express them: I saw a stunned mother, standing over her day-old twin daughters--they had just been told that they had HIV; I heard the story of a child who was caring for his mother as she was suffering from repeated cases of PCP and numerous opportunistic infections. They stood up one at a time. Most were able to speak in English, while others needed to be translated from their native tongue. Even though they were likely invited by the clinic's organizers to share with the group, I could tell from their expressions that they did not expect to be speaking to people who had actually lived very similar stories.
The stories and medical realities in these poor African Hospitals today are not so different from my first experiences in the Pediatric AIDS clinics at New York Hospital and Bellevue Hospital in the late '80s. At that time the only medicine available were capsules of AZT, and they were not yet available in children's dosages or in a child-friendly format. PCP was still a death warrant for most children. No one knew how long anyone with the virus was going to live, but we knew lists of people who were either about to pass away or had already left us.
My time in Uganda made me extremely proud of what the Foundation is doing. I can still remember attending a board meeting in the late '90s when it was announced that a research project, in part funded by the Foundation, had discovered that Nevirapine had been found to block the transmission of HIV from mother to child in about fifty percent of cases. The board embarked upon an entirely new facet of our mission. With funds from the Gates Foundation, we started to implement the treatment in the countries with the greatest need.
My concern at the time was that helping to block transmission during birth was only one small part of what we needed to do to combat the virus. It seemed inhuman to me to diagnose a mother's HIV status, help her have an HIV-free baby, and then walk away. She probably had a husband and other children who were living with HIV. They surely needed medicine, most probably counseling, and possibly even a little help to keep their kids in school.
Well today, the Foundation's program in Uganda is helping with all these issues and many more. They are confronting the complexities of this illness and bringing help to afflicted families, partly by giving families tools to help themselves.
In 1993, Alexander Vreeland founded Kids for Kids, an annual fund-raiser for the Elizabeth Glaser Pediatric Aids Foundation, which over the years has raised over twenty-two million dollars for HIV treatment and research. He first served on the Foundation's Advisory Board, and then joined the Board of Directors of the Foundation between 1998 and 2003. He currently lives in Paris, France with his wife, Lisa, and their seven-year-old daughter, Olivia.
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