The moment 10-year-old JJ learned she has HIV had been carefully orchestrated for months. But for reporter John Woodrow Cox, documenting this moment and the events leading up to it were an exercise in not telling: not writing crucial details that would reveal JJ’s identity to the public, not attending events where his own identity as a reporter could compromise JJ’s privacy. “Our priority was not to expose her,” Cox says.
JJ, a fifth-grader, is one of the many children who have been born with HIV since the AIDS crisis started in the 1980s. She nearly died from pneumonia at birth. She struggled to take the medications necessary to manage her illness, along with ADHD and, later, depression. During all of this, her doctors at Children’s National Medical Center and her adoptive mother, Lee, worried over the appropriate time to tell her about her manageable but stigmatized disease.
“Telling JJ,” Cox’s powerful story about the girl’s tumultuous young life, appeared in The Washington Post on September 18. But as with so many ambitious projects, the story actually began several years ago, when the International Aids Conference came to Washington, DC, in 2012. Amid all the coverage leading up to the conference, Post editor Lynda Robinson heard a story on local radio station WAMU about teenagers with AIDS and the need to tell HIV+ preteens about their status. “Immediately, I thought, Wouldn’t it be amazing to watch that happen?” Robinson says.
After one reporter made an unsuccessful go at the piece, Robinson tucked the story away on her wish list until last September, when Cox joined the Post. When Robinson sent him a list of ideas he might pursue when he started, “that one immediately stuck out to me,” Cox says. Acknowledging it might be an impossible story to get, he started doing research in January. Two months later, after pitching the idea to the communications team at Children’s and meeting with several doctors, Cox was sitting in a booth at an IHOP having eggs with Lee.
JJ would learn of her diagnosis in June. Until then, Cox spent time with JJ twice a week, sometimes more, accompanying her to doctors’ appointments, attending her school plays, and watching her do homework or relax in the family’s living room. He had access to her medical records; JJ allowed him to read a notebook she used to write down questions about her illness. He was so frequently and persistently around, he says, that JJ hardly noticed him, even when he was in the room during her crucial moment.
And yet there was so much he couldn’t do. He never went with her to class or a friend’s house, wary of inciting questions about a reporter’s interest in JJ. In public, he took notes on a cell phone, rather than a notepad, to blend in. He told JJ he was writing about children with her “rare blood disease,” the phrase Lee had used with JJ all of her life. He couldn’t disclose common reporting details, like her mother’s age or the name of her school. Orchestrating photography proved tricky, so photographer Marvin Joseph stayed away until the very end, snapping photos of inanimate objects and obscuring angles to hide faces. The Post even went so far as to take any clothing that appeared in the photos, buying JJ new ones to replace what she’d lost. (“She was thrilled,” Robinson says. “ ‘A shopping trip!’ ”)
The final story is sincerely told and deeply emotional. But in 2015, it’s an unusual one to tell. With AIDS largely under control in the United States and relatively new medical advancements that can prevent transfer of the disease from mother to baby, US rates of perinatal HIV infection have dropped more than 90 percent in the last two decades. Cox writes:
In the infectious disease conference room, three piles of baby blue files were stacked on a long wooden table.
Ferrer and nine others gathered around it, as they do every week, to discuss their HIV-infected patients: a pregnant teenager concerned about her unborn child; a boy whose father still didn’t understand which pills his son needed; a stubborn young woman who the staff had asked to sign a contract committing to take her medications.
Chenere Evans, a psychologist, mentioned a 14-year-old mentally disabled boy who had announced to his class that he had HIV. Heads shook around the room.
At last they came to JJ.
She is among the 20 percent of Children’s 340 HIV-positive patients younger than 13. And with fewer than 200 babies a year now born with the virus nationwide, the people in that room hoped that the impending discussion — one they’d had so many times before — would no longer be necessary in a decade.
Unlike many longform stories that follow an individual to expose a new or growing trend, “Telling JJ” is an almost historical exercise, bearing witness to a struggle that affected so many and may soon cease to exist. “This is a forgotten generation of children,” Cox says. “HIV is not in the headlines nearly as much as it was in the 1990s or early 2000s. … I just felt like, here’s a totally underrepresented population in terms of their stories being told.”
It’s also, of course, an excellent story. “Any story that is going to have a lot of tension and be compelling and be intimate and is something you’ve never read before is always worth pursuing,” Robinson says. Readers reacted strongly to the piece, leaving tearful voicemails on Cox’s phone and sending offers of help. Cox has stayed on good terms with Lee and JJ, and plans to write a followup on her progress. Lee was happy with the story, Cox says. JJ, still too young, hasn’t read it yet. But the effort is a demonstration of what persistent, careful, and respectful reporting and editing can do. “Sometimes,” Robinson says, “the un-gettable stories are gettable.”Laura Dattaro is a science journalist, writer, and producer based in New York.