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AIDS advocate and survivor Joey DiPaolo is a life lesson in positive living

Joey DiPaolo, once famous as the little boy

Joey DiPaolo, once famous as the little boy who had AIDS who spoke out in favor of HIV prevention and against discrimination, is getting married Aug. 1 to Lauren Pisani, a former New York Jets cheerleader. Photo Credit: Pholo.DH

Joey DiPaolo, the Brooklyn boy who contracted AIDS from a blood transfusion when he was 4 years old and became a pint-sized crusader and HIV educator, is grown up and living on Staten Island with his fiancee and two crippled cats.

DiPaolo, now 35, owns DiPaolo's Barber Shop in Tottenville and will marry Lauren Pisani, 32, a dance teacher, dance store manager and former Jets cheerleader on Saturday.

DiPaolo's adolescent exuberance and buoyancy is still intact, despite a divorce following a 2010 marriage, and concern that "the newer drugs won't work as well on me" because the virus has had 31 years to mutate in response to the drug cocktail he consumes each day.

"I grew up with this epidemic. Seeing everything then and comparing to where it is now? Things are 100% different," DiPaolo said. NYC has made progress in both preventing and treating AIDS:

New AIDS diagnosis in the city have decreased 67% in the last decade, dropping from 5,422 in 2003 to 1,784 in 2013, according to the city's health department. And medical advances have allowed many people such as DiPaolo to live full lives. "My health, knock on wood, is fantastic: My t-cell count is between 900 and 1,000," said DiPaolo, who lives in Annadale.

In fact, he'd like to lose five pounds. "It's all in the belly!" he exclaimed in fake distress.

DiPaolo became NYC's own Ryan White in 1990, after deciding during a hospitalization at age 10 to go public about his HIV status. At least one parent withdrew a child from Roy H. Mann Junior High School in Bergen Beach and a dozen others threatened to while DiPaolo educated millions about HIV transmission, helping to quell hysteria and prejudice.

Plucky and relentlessly upbeat, he became a media darling and the subject of an HBO movie, "Blood Brothers: The Joey DiPaolo Story" about the medical and social difficulties he confronted.

He reflects on the bigotry, as he looks at most things -- humorously. "Who wouldn't want to have their own water fountain, so you didn't have to share the one with all those other grimy mouths on it?" he laughed, noting wistfully he was no longer prescribed steroids: "I wish! I'd be a little bigger!"

When this reporter interviewed him 17 years ago, DiPaolo said he had declined to become sexually active because "I would never want to put a person at risk."

Now practiced in HIV prevention, he is more at ease and hopes to start a family following his honeymoon in Mexico. Medical professionals, he explained, "can wash the sperm and do in vitro fertilization," to make sure a baby is born HIV-negative. The introduction of protease inhibitors and combination therapy has extended the lives of countless people with HIV and AIDS, but treatment is astronomically expensive and getting more so. Like many of the 118,300 NYC residents living with HIV and/or AIDS, DiPaolo is on ADAP, a state program for HIV-positive people that helps pay for medications.

DiPaolo wanted to be a phlebotomist, but the school he went to for training asked him to leave. "They gave me all my money back. It was one of the first times I walked away from a fight but I was tired. I was just done -- these are people in the medical field and they were so uneducated," he said, sighing. He then got into food service, working, ironically enough, at a Pfizer cafeteria, before entering cosmetology school and taking up barbering -- a pursuit that is both a profession and a passion: "I love cutting hair! If someone comes in and they want a funky design, I'm lovin' it," he said. If anyone shuns his scissors out of fear and ignorance, "I don't hear about it."

DiPaolo purchased his home and barbershop with his share of a $1.2 million settlement he received from the hospital and physicians involved with his 1984 blood transfusion. The settlement, he said, was based on an expectation he would only live for five years and is now gone.

He disbanded the eponymous foundation he started for HIV+ kids ("I can't live off a nonprofit") though he appears at benefits when anyone asks. "He loves helping people and he loves public speaking, " noted Pisani.

DiPaolo's public reception was enhanced, he knows, by the perception that he did not "deserve" his infection. "I was a kid who got it through a blood transfusion, so people looked at me different. But I don't think anyone deserves it. I don't care if you got it through sex or put a needle in your arm," said DiPaolo.

Pisani met DiPaolo in a bar during mutual birthday parties about a dozen years ago , and the two reconnected on social media after respective breakups. Pisani, who is HIV negative, had no qualms about getting involved, though she fretted that her parents might not embrace the idea of their daughter having an HIV positive partner. Not to worry: "They love him! They accepted him right away!" A health issue "is no reason to cancel a relationship with someone," continued Pisani, noting that had she done so, "I could have missed out on this amazing person."

DiPaolo's fame ironically eased courtship. "I didn't have that dilemma, 'how do you tell someone?' They already knew!" DiPaolo exclaimed.

Growing up HIV positive has shaped DiPaolo's politics. He notes that Gay Men's Health Crisis was instrumental in helping to keep him alive. "I was raised with so many gay people, I don't look at them as any different: I have so many gay friends it's just like normalcy to me: Leave 'em alone!" He is also strong believer in needle exchange programs and safe sex education in the schools.

But, he allows, "I lost a lot of friends. A LOT of friends: For us AIDS survivors, it's a war and every day is a battle." DiPaolo is skeptical that a cure for AIDS will occur in his lifetime because "it's too much of a moneymaker" for drug companies. But his awareness of life's fragility has strengthened his intent to live joyfully. "You have to make the best of every moment you have in life because you never know when your time will be," he said.


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