Nineteen-year-old Joey DiPaolo has been raising money, awareness and all-around hell about AIDS ever since he had to stand on a stool to peer over the podium. In the early '90s, DiPaolo—who got HIV during open-heart surgery at 4 and almost died of pneumonia four years later—boldly stepped up to the plate after Ryan White's death, fast becoming a media darling whose advocacy at rallies, in schools and on Capitol Hill won precious publicity for the cause. He has grown up a little bit since his first POZ appearance in 1995, but while a thin line of mustache fuzz darkens his upper lip, he still has those dreamy eyes that made him the decade's irresistible AIDS posterboy.
This is fine by him. Today, DiPaolo has a hectic schedule of almost weekly speaking engagements, while he attends Staten Island Community College and runs (from home, with his mom's help) the Joey DiPaolo Foundation for children with AIDS. As we sit at the kitchen table, DiPaolo rattles off answers at rapid-fire speed, and it's immediately clear to me that he understands the value of life as few teenagers can. DiPaolo's philosophy is simple: Cram as much living as you can into every day, and keep smiling.
What have you been up to lately? My mom and I started the foundation a couple of years ago, raising money to send kids with HIV to summer camp. Now we're starting our own camp for teens and their siblings. There'll be more adult-type activities—I'm not so much into dealing with little kids anymore.
That makes sense—you're not a little kid. How has growing up changed your activism? Well, I'm still short—5 feet, 6 inches—so people still see me as a kid. So high schoolers look at me and go, "Hey, he's just like me."
They connect with you. Exactly. But what I'm seeing today is people just aren't taking AIDS seriously anymore. A lot of them think, "Oh, if I get HIV, I'll just go on a cocktail."
Do you think you're reaching people? I always say that if I reach one person, it's a success. A couple of weeks ago a girl came up to me after the presentation, asking all these questions: How did I go public? What reactions did I get? Who discriminated against me? By now I've learned that when that happens, the person is really trying to tell me something. So I kind of directed my answers toward her situation. And after a while, she says, "I tested positive about three months ago." Sixteen years old, very pretty girl. And people think it can't happen to them. When I talk in classrooms, you can hear a pin drop.
In high schools? I bet the teachers wish they knew your secret. Yeah, well, I'm not giving that one away.
How's your overall health? Pretty good, actually. My T-cells are high; my viral load is under 5,000. I'm on ddI [Videx] and Interleuken 2 [an immune booster]. I've also been on AZT since 1994, and it's still working. Don't ask me how, but I'm not going to fix something that's not broken. I haven't gone on a three-drug protease cocktail because I'm not 100 percent compliant, and the drugs I'm taking now are working with no side effects. I take about 16 to 18 pills a day. I've been on antibiotics since I had my spleen removed in 1987—penicillin, Bactrim, Entax for chronic sinusitis. Oh, and multivitamins.
Are you still taking herbal treatments? No, it was just getting to be too many pills, and I don't really feel like I need them. The other thing I do is weight-lifting.
What about diet? I eat anything and everything. Calorie intake is the important thing. That's what the doctors say.
Life is... Short and precious. Yes, I have a disease, and yes, it could kill me, but there are drugs available to help me live a normal, healthy life. Sometimes I wonder if I'll keep doing activism, or if I'll settle down and maybe get married some day. So I've decided to do both. Why not, right?