By Heather Boerner
If you care about the health of communities, about social determinants of health, or about health policy, HIV is a treasure trove of story ideas. But in my years covering HIV, for publications including The Washington Post, The Atlantic, Medscape and PBS NewsHour, there are lots of things that I think general news coverage about HIV gets wrong. Here are my top five:
- Stop writing about pre-clinical/animal models and then declaring a “cure” for HIV. This does harm to people living with HIV and those who love them, as well as their health care providers who then must field questions from their patients about when they will be cured.
When you get a press release dropped on your desk from an editor asking you to localize it, practice good science reporting hygiene: Is the study in vitro (i.e., in petri dishes in a lab) or in animal models? Mouse models or non-human primates? Is it in a reputable journal? (You can find that out here). If the science is super early or suspicious, you may want to push back on the assignment or couch the report in some realistic expectations of how long it would be before it might make it to the clinic, and what significant hurdles it will have to overcome in order to get there. Don’t over-promise.
- Use neutral and accurate language. HIV is still highly stigmatized, even among people who should know better, like health journalists. I remember telling a fellow health journalist about my work, which includes describing the new science of HIV, which can allow people living with HIV to conceive children safely by having sex without a condom. The journalist I was talking to dismissed all the science I’d just described, telling me with conviction that that it’s irresponsible for someone living with HIV to have sex without a condom. Period.
Letting go of our perceptions of what it means to live with HIV is hard, and I know journalists bristle at being told what words to use, especially by activists. We think they’re trying to control the narrative. But we accept style guides from the AP that make sure our work is both accurate and neutral; this is no different. Just as the AP eventually changed its policy on “illegal alien,” it’s time to stop using words like “HIV-infected person” when we mean someone living with HIV; “promiscuous” when we mean someone with more than one partner (i.e., someone who is dating, which we all do or have done); or “clean” when we mean someone who has not acquired HIV yet.
My quick hits:
â–¶ use “acquired/diagnosed with HIV” rather than “infected with HIV,”
â–¶ use: “he is living with HIV” rather than “suffers with HIV” or even “HIV positive”;
â–¶ and use: “AIDS-defining illness” rather than “full-blown AIDS.” (“Full-blown AIDS” means nothing scientifically, and only titillates and conjures images of the early days of the epidemic. Those images feed readers’ fears of people living with the virus.)This requires you to do a little more research and find out, for instance, what diseases providers use to identify whether a particular person has moved from simply living with HIV to having the immune breakdown that leads to a clinical diagnosis of AIDS.
Finally, interview your sources with more curiosity about what it means to live with HIV: Does your source have a detectable viral load? Or are they virally suppressed? Have they ever had an AIDS-defining illness? How hard or easy is it for them to remember to take their medications? What gets in their way? How many of their friends and loved ones know they are living with HIV (now’s the time to have a conversation about whether to use a source’s real name)? How long have they lived with HIV? What are the side effects of their medications? What does living with HIV mean to them? It is none of your business how they acquired HIV unless it is directly relevant to the story.
More info: The CDC, the Positive Women’s Network-USA, and The Well Project and the Association of LGBTQ Journalists all have their own guidelines and suggestions of appropriate and accurate language around HIV. (PWN-USA also has a recorded webinar that explains its guide.)
- Stop telling the HIV story from the white, middle class and gay perspective. While white gay men have been the face of the epidemic for a long time, the current face of the HIV epidemic today is southern, brown, young, potentially gay but also heterosexual female, transgender and poor. When you look for people living with HIV to interview, especially on deadline, it may seem like you have no choice but to go with the most accessible people — often white gay men. But you are doing your readers a disservice. Push harder. Find people of color, gender non-conforming or transgender people, and trans and non-trans women to talk to about HIV. There are specific organizations run by and for these people. You just have to Google them. These are also the people doing some of the most interesting research and policy making on HIV. Making an effort to talk to these folks will both help you understand what challenges people living with HIV face today, and will help readers understand, too.
- HIV prevention is not just a gay issue. Nearly as many heterosexual women are candidates for Truvada (a drug that prevents HIV infection) as gay men are – 486,000 women vs. 492,000 gay and bisexual men, according to the CDC. A smaller percentage of the cisgender female population is at risk, but the absolute numbers are similar. PrEP (a protocol to prevent HIV infection) is available to women, and women living with HIV have been pregnant and taking these drugs for years. There is a wealth of information available and there are many organizations with national reach through which you can find women living with or vulnerable to HIV. Planned Parenthood has started offering Truvada in many places.
- You can’t talk about HIV without talking about social determinants of health. Many stories on HIV epidemiology include this transition sentence: “Despite improved outcomes, disparities persist.” That’s because disparities in social determinants of health persist, and they persist across the HIV status spectrum. People who have worse outcomes once they are diagnosed with HIV also have worse outcomes with most other conditions, for many of the same reasons. And the same people who are most vulnerable to acquiring HIV — people with unstable housing, lack of access to health care, food instability and poor access to reproductive health care — are the ones who have poorer outcomes once they acquire HIV. When writing about HIV, if you talk to people of color or transgender or cisgender female people, you will not be able to escape talking about these topics.
But as they say in the tech world, this is a feature, not a bug, of HIV reporting: If you are interested in the health of communities, talk about HIV. If you are interested in housing segregation and unequal distribution of resources, talk about HIV. If you are interested in the impact of CHIP (the federal/state Children’s Health Insurance Program) running out, talk about HIV. If you are interested in criminal justice, trauma, transportation, language barriers in health care, culturally-competent care, the impacts of rolling back the ACA, the effect of letting CHIP lapse, the impact of more stringent state ID laws—all of these intersects with HIV. It’s a chance to talk about all of them.
For more information, see this companion tip sheet on the science, the numbers and data and how to localize the story.
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.
