Foundation Ambassador Shares Story of Growing Up HIV-Positive
The Foundation was lucky to welcome back one of our Foundation Ambassadors, Ben Banks, for a discussion of the issues of transitioning from pediatric HIV care to adult care. During a childhood battle with a cancer that attacked his lungs and kidneys, he contracted HIV from a blood transfusion.
Now 33, Ben has become an advocate for children living with HIV. He’s testified in front of the FDA and serves on a panel for pediatric HIV treatment guidelines. He was joined by family and friends as he shared his story with the Foundation last week.
Ben was diagnosed as HIV-positive when he was 12 years old. As a teen, he watched movies about children living with HIV in class, but was terrified to tell anyone about his status to protect himself and his family.
But he said that he felt the need to share his story. “I need to share this message, I have to tell somebody.”
He began by telling a few close friends. Eventually he went public with his status, and became the Foundation’s first college-aged speaker on living with HIV. He said that talking to people about his status and about HIV was one of his priorities.
“Everybody…has trials in their life. If you have a positive attitude, you’re gonna grow, and life can be beautiful.”
Ben knows first-hand the challenges of transitioning from childhood to adulthood with HIV. “We’re the first generation to grow up to adulthood with HIV,” he said.
He’s been on numerous HIV medications, including AZT, the first drug made available for children in 1991. He shared a story of how his mother woke him to take his medication – which had to be taken every six hours – and after discovering he was not taking his medication, told him, “Don’t make me worry about you! If HIV doesn’t kill you, I will.”
Ben’s current medication, Atripla, needs to be taken only once a day, but has an unusual side effect: night terrors. “It’s part of the spice of life,” he joked.
Ben’s advocacy has focused on making HIV medications safer and easier for children.
“HIV mutates, it changes, it builds up resistance,” he said. He added that the key was making HIV medications less harmful to other organs, and encouraging the FDA to begin testing possible treatments for children earlier.
“Children are waiting and waiting and waiting” for better drugs, he said, and hopes that his efforts will improve the lives of kids around the world.
Growing up with HIV, Ben knew the challenges of building relationships and sharing his status. He talked about meeting his now-wife and telling her about his status, and his wife’s family’s fears for their relationship. Ben’s wife gets tested for HIV every six months, and the couple is now preparing for children.
But the difficulties of preventing father-to-mother-to-child transmission of HIV are still largely unknown. Very few clinics in the United States offer a process that separates the sperm from the semen (or “sperm-washing”), and the procedure is expensive and not yet approved by the FDA. But Ben remains hopeful, and he and his wife are researching in vitro fertilization (IVF) and artificial insemination (AI).
Ben noted that some people put him in a different category of HIV patients because he didn’t contract the virus in a “risky” manner. But he said, “Nobody chooses to get HIV. I wouldn’t give HIV to my worst enemy. We can’t just treat the ‘innocent’ people.” His work focuses on the needs of all people living with HIV.
During his talk, Ben emphasized that “HIV is only a small part of me,” but noted how much has changed since his diagnosis.
His sister shared how she thought HIV was a “death sentence” when first told of Ben’s status, noting that he was diagnosed the same year that Magic Johnson went public with his own positive HIV status.
But thanks to the efforts of people like Elizabeth Glaser and other pediatric AIDS advocates, Ben’s health has been consistently good – so much so that his doctor told a wish-granting organization that Ben’s illness was not life threatening, telling Ben that he had a “better chance of dying in a car accident than dying of HIV.”
Ben has never regretted the blood transfusion that saved his life but gave him HIV, saying “I’d rather choose to live with HIV than the alternative.”
He thanks Elizabeth Glaser and her efforts to promote the needs of children living with HIV for saving his life, and has now worked with the Foundation for over a decade.
We’re so thankful for Ben’s advocacy and voice in the fight to eliminate pediatric HIV/AIDS.
Jane Coaston is the Foundation’s Media Relations Coordinator in Washington, D.C.