Press Ban at National PrEP Summit Was a Bad Idea for HIV Community

Credit: JamesYetMingAu-Photography for iStock via Thinkstock

By Heather Boerner, JD Davids and Warren Tong

From TheBody.com

 

January 17, 2017

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When the National Minority AIDS Council (NMAC) announced that its National PrEP (pre-exposure prophylaxis) Summit would be in San Francisco in last December, we, like many in the HIV press, were excited. This was, after all, a discussion about PrEP among those communities that need it most, led by people from those very communities.

But, as journalists, several of us got a surprise when we attempted to register for the summit. First, many of us received no answer. And then the news began to trickle out: NMAC had banned press from the event. At a time when we need more press focus on HIV prevention methods and the systemic barriers preventing those methods from getting the people who need them most, NMAC's decision is the wrong one.

TheBodyPRO.com, along with other HIV publications, has posted stories about the conference: one from AIDS.gov, others from writers who attended the summit in clinical or advocacy capacities. But no one was allowed to attend the event as a journalist. In addition, attendees report that they were instructed not to quote speakers during sessions -- though they were encouraged to tweet with specific hashtags.

Banning press is not just counterproductive to HIV efforts. It's also deeply troubling morally, ethically and politically. Especially as we enter a "post-truth" political environment in which leaders use accusations of "fake news" to avoid answering questions, organizations cannot be permitted to decide what can be quoted and what cannot.

After decades, we can now care for and treat people with HIV -- and prevent HIV acquisition in others -- to a previously unimaginable degree. These advances were largely sparked by openness and media attention: An earlier generation of people with HIV and their comrades physically forced their way into closed government and medical proceedings, established homegrown community press as a lifeline for people scrambling for information and access to care, and inspired and provoked widespread media coverage in a world that had largely chosen to overlook the spiraling epidemic.

It can be tempting to seek to control the message by keeping the press at arm's length or -- out of expediency or fear -- to seek to meet the need for confidential conversations by eschewing openness at large, publicly announced and widely promoted events.

But while it may be true that there's a political price to pay for speaking your mind, that's what HIV activists are called upon to do, then as now. Fear of blowback or resentment about previous experiences with the HIV press is not a reason to ban it. It is, frankly, the responsibility of leaders in the HIV community to pick their words carefully if they feel they must.

In addition to blocking the dissemination of important information, this decision forced conference attendees to conform to seemingly arbitrary rules -- such as those that allow one to tweet but not to quote -- and allowed and even encouraged certain forms of coverage by "community" but not professional journalists and the press. In effect, this offloads the responsibility for communication policy onto summit attendees.

But beyond making conference attendees responsible for communicating the conference's mixed messages, a ban on press also abets or encourages the telling of only the official story. Such summaries are valuable and a long-standing tradition in HIV media. However, coverage by journalists following the established practices of their profession is an important service that brings its own benefits, including greater engagement with mainstream media and the potential to reach a broader audience.

Of course, every movement needs confidential or off-the-record caucuses to form strategies and share approaches away from the media glare. Organizations have private meetings of boards of directors when they discuss issues related to lawsuits or personnel, and every community and medical conference is peppered with private, one-on-one meetings or caucuses to discuss things that are not ready for prime time.

But the place for that type of privacy isn't during an entire publicly advertised conference. If it's too sensitive to allow the media in the room, it's too sensitive to discuss at a public meeting. Hold your strategy sessions in private meetings, but if you're going to have a public event, it cannot be "public" in name only.

None of us should tolerate this precedent -- not within HIV groups and not in the HIV media world. As editors of one of the largest HIV websites in the world, we call on NMAC to rescind this policy and commit to allowing free and open reporting of their future events. More than that, we call on HIV organizations and journalism groups to stand against this egregious violation of a free press and free speech.

We believe deeply in the power of information to set us free. Sunlight, as they say, is the best disinfectant. Let's not allow these arbitrary rules to become precedent. Let us not allow secrets to corrode the power of the HIV movement at this critical time.

Heather Boerner is a health care journalist based in San Francisco and author of Positively Negative: Love, Pregnancy and Science's Surprising Victory Over HIV.

JD Davids is the managing editor for TheBody.com and TheBodyPRO.com. Follow JD on Twitter: @JDAtTheBody.

Warren Tong is the senior science editor for TheBody.com and TheBodyPRO.com. Follow Warren on Twitter: @WarrenAtTheBody.

Read more articles from the Body, here.