Advice from a reporter experienced in interviewing people in stigmatized populations Date: 02/20/19
By Emily Willingham
Heather Boerner’s October 2018 piece at NPR examined the fate of people who live without treatment for their HIV after they leave prison. The piece was pinned to a study published in PLOS One showing that people with HIV often are lost to care once they leave the monitoring and services provided in prison.
In her article, in addition to providing an in-depth perspective from several experts, Boerner also gave the reader the story of Bryan C. Jones, who had left a prison in Ohio and almost immediately ditched his HIV drugs because he knew they were no longer working — he had developed resistance to them. That step could have meant that Jones was lost to the system for good, but a few serendipitous connections kept him healthy and thriving and even running support groups in the penitentiary where he was formerly incarcerated.
In response to some questions, Boerner discusses how she identified Jones and was able to include his story in her piece. As journalists covering health know, finding someone living with the condition a story covers can be difficult. The additional factors of a background involving incarceration and a period of housing instability can complicate the process even more. Below, Boerner explains how she did it.
Q: I'm interested in your work on the NPR article about people living without treatment for their HIV after leaving prison. I was hoping you might be able to share how you identified Bryan C. Jones and were able to speak to him about his experiences. I know that at a comparative effectiveness research fellowship I just completed, the issue of finding real people with real stories in the health arena is a constant challenge.
Since I write a lot about HIV, I’m regularly interacting with people who live at the intersection of multiple stigmatized identities and health conditions. And I really believe it’s important for people with a medical condition to tell their own stories, especially in communities with multiple stigmas, because being talked about (rather than telling your own story) is another way that people are dehumanized.
So when I am looking to talk to people in stigmatized groups, usually the first thing I do is talk to the editor about whether they are open to using a pseudonym. I don’t offer that first, but it’s important for me to know whether that is something I can offer if someone wants to tell their story but is hesitant about the stigma they may experience as a result of exposure in the press. Sometimes, editors are open to it. Other times, they aren’t. Sometimes that means the difference between doing a story or not, since some gatekeepers, such as health care providers, may insist that we operate on condition of anonymity.
Once I have that answer (and assuming the answer is that I’m NOT permitted to offer a pseudonym), the first thing I do is go to communities of people living with HIV and tell them what I’m looking for, making clear that I can’t offer anonymity if that’s the case, and that I am happy to answer any questions about the story.
In the case of HIV, sometimes we’re lucky, because the HIV community is organized and full of activists. There are groups of people who have HIV and are intentionally out about it. And because I cover HIV regularly, I have a track record that people can look at and judge for themselves whether they think I will handle their stories accurately and respectfully. I often point potential sources or gatekeepers to previous stories.
And then there can be some negotiation. In the case of the NPR story on HIV care after release from prison, I had written a very long piece on how Switzerland changed their criminal law to decriminalize sex for people living with HIV. So I had a track record with a group of activists who were working on HIV criminalization law modernization. I laid out what I was working on and what I was looking for, and made clear that if this was too far off topic, I would be happy to not post on the group again.
I also reached out to some providers and other sources I’ve worked with, as well as people I’ve met in passing who work with people released from prison. And I contacted the AIDS service organizations in Connecticut, where the study was conducted, and told them what I was looking for. Then I told them I’d be happy to answer any questions.
Mr. Jones responded to my first email, and asked me to go into detail of what I thought the story would be about and what I wanted to know from him. He made clear that he’s generally proud to talk but that he’d had a bad experience with another reporter, whom he believed had painted him in a way that didn’t feel authentic to him, noting that he’d grown up “in the ghetto,” etc. (I believe that’s a stigmatized thing as well.)
So we talked for a bit and I told him what I was looking for. And he agreed to talk to me.
The thing I would urge other reporters to keep in mind is to really listen to people who have had stigmatized experiences. In HIV research, people talk a lot about treating people with HIV with dignity — I believe that’s largely because people living with HIV are a big reason there are so many HIV treatments today. So I really listened to Mr. Jones. He did leave his pill bottles at the bus station, and that statement alone sounds crazy and like he was doing something scandalous. But he told me multiple times it was because the drugs weren’t working. I didn’t hear him the first few times. But as I wrote I realized he repeated it for a reason. He didn’t want to come off as irrational.
Heather Boerner is a Pittsburgh-based health care journalist. Her work has appeared on PBS NewsHour’s website, The Atlantic, The Washington Post, and the San Francisco Chronicle, among other places. She covers HIV for Medscape and is a contributing editor to TheBody.com, one of the largest HIV websites in the world. In addition, she writes about health care policy, health care access and other topics for a variety of publications.