Reporting on HIV/AIDS

Published on
October 2, 2008

Conflict drives the most compelling stories, and HIV/AIDS has conflict at every turn. 

Conflict ranges from scientists confronting each other with different ideas to mysteries, unkept promises, discovery, hype vs. hope, and the threat of death. Or consider the sharp divisions between health options for the rich and poor, religion and politics overshadowing evidence, activists demanding a voice in decisions, and plucky generic drug makers battling over patents with big pharmaceutical companies. And then there's the astonishingly capable immune system vs. a relentless virus.

But far too much HIV/AIDS reporting dodges conflict, relying instead on official announcements made by leaders, publications by scientists and conferences. These, of course, matter and deserve attention, but they skim the surface of the possibilities.

The best HIV/AIDS coverage delves beyond the latest statistics of how many people are infected, the publication of a new national plan, or the results from a study of a promising new treatment or preventive. It tells the stories of the vulnerable people who took part in that study and offers different perspectives about the results. It airs debates that took place behind closed doors while the new policy was being formed. It explains the complex, confusing forces that drive how an epidemic changes shape over time.

HIV/AIDS reporting breaks into five general categories: epidemiology, research, treatment, prevention, and social issues. These five categories overlap; there's an increasing awareness, for example, that prevention and treatment go hand in hand. Still, the categories give an overview of the landscape, and can serve as a map to stories:

* Epidemiology - where the virus has gone and where it's going - receives the most routine attention, with the Joint United Nations Programme on HIV/AIDS providing updates that predictably fuel stories every December 1 on World AIDS Day and again right before the biannual international AIDS conferences.

* Social issues, such as stigma and discrimination, receive loads of coverage, too, in part because they put a personal face on the issue and are relatively easy stories to tell.

* Since the advent of powerful antiretroviral drug combinations in the mid-1990s, treatment stories in developed countries grab fewer headlines (another new drug or an improved regimen often elicits a shrug). But they have taken center stage in the developing world, where access to these life-saving medicines remains a pressing issue.

* Prevention provides a rich array of topics, including condom and partner reduction campaigns, circumcision, experimental vaccines and microbicides, and drugs to thwart the spread from infected pregnant women to their babies.

* Basic research probably receives the least attention, but that's a huge oversight. The death dance between the virus and the immune system is inherently dramatic, and experiments continue to uncover fascinating plot twists that inform everything from development of drug resistance to the search for more effective treatments and prevention strategies.

Ask: What's a good, undercovered story?

Many Web sites provide data and country-by-country trends that suggest good story ideas. (See the Toolkit in the Resources section to the right for a list of useful sites.) But there's nothing like talking to people on the front lines and asking them this simple question: What's a good story that deserves more attention?

Academic researchers who run studies in humans often have a refined sense of what is both interesting and significant, and they tend to have close ties with affected communities. Similarly, nongovernmental organizations (NGOs) can provide ideas and access to people at the center of the HIV epidemic who, for legal and social reasons, often fear (or are kept away from) the media: sex workers, injecting drug users, men who have sex with men, prisoners and illegal migrants.

To locate these NGOs, visit booths in the exhibition halls at AIDS conferences, look for local alliances or scan the names in what's called the Country Coordinating Mechanism - the group of stakeholders that writes Global Fund proposals. Several NGOs with strong HIV/AIDS programs have an international agenda, including Médecins Sans Frontières, Population Services International, Oxfam, Panos, Marie Stopes, Partners in Health, Care International, World Vision, and the Elizabeth Glaser Pediatric AIDS Foundation. The Bill and Melinda Gates Foundation gives grants to many NGOs to conduct interesting projects around the world.

AIDS activist and advocate groups closely track politics, research and access issues, and often produce thoughtful publications, have articulate leaders and boldly tread into rough waters that others avoid. On the flip side, many of the best sources work for governments or quasi-governmental institutions like the various branches of the United Nations. People in these types of jobs tend to see the big picture, since they shape policy and monitor trends, but they also tend to have their fingers in many pies and understand the more subtle aspects of issues.

Journalists who write about HIV/AIDS sometimes shy away from learning the science. But it is not as complex as it might seem. Even if your audience has little appetite for technical information, a solid knowledge of the fundamentals builds a foundation that can inform all other aspects of covering the epidemic. (See sidebar to the right for a quick primer.)

To begin with, if you have even a rudimentary understanding of the science of HIV/AIDS, you'll be able to decipher more of what researchers are saying. Many of them will appreciate your effort to understand the language of HIV/AIDS and help you become more fluent.

Reporters constantly have to judge the newsworthiness of information, and it's all too easy to believe "experts" who have doctorates or medical degrees. Many policy and funding decisions similarly rely on scientific information, and some of the most eye-opening stories come from noticing trends, like three different research groups reporting similar findings within a few months of each other.

Wading through the flood of data

There are a few tricks that can help make sense of the flood of data being published in journals and presented at meetings.

* Read the last paragraph of a scientific paper or conference abstract first. It often explains the rationale for a specific experiment, why the results matter, and how the finding differs from what others have reported.

* Don't pretend to understand things that confuse you. Ask questions. Researchers often will gladly give you copies of presentations they have created, which typically include graphics that explain the work (and can be used in print and TV stories). Poke around to find out who their chief competitors are, and then contact those people.

* Pay close attention to who funds a study. If it's a company that stands to profit from the results, keep that in mind.

* Don't speculate, and don't quote people speculating. Remember that most experiments fail, and that most things are possible, but few are probable. If someone makes an exceptional claim, it requires exceptional evidence.

* Recognize that some data are more convincing than others. Pay attention to the "N," "O," and "P." "N" is the number of people, animals or samples in a study; more is generally more (n=1 is nothing but an anecdote). "O" is the opposing view, and it's rare that everyone agrees about everything. And "P" is the probability that a finding is true, which otherwise is known as statistical significance. (Ideally, researchers like to be at least 95 percent confident that their results are not due to chance, expressed as p<.05.)

Here are a few stories that will continue to deserve close scrutiny:

* In a push to deliver treatment to everyone in need, there's been a sharp spike in funding for HIV/AIDS. What's delaying the rollout of treatment in different places? Is the money being spent wisely? Does corruption exist? How can countries afford to sustain the treatment programs they've started? What can they learn from each other? I've written stories addressing these issues.

* Each locale has a unique epidemic, and the local prevention response ideally should target the "drivers" that spread it in that place. There's often a disconnect between prevention efforts and the drivers, because many countries refuse to acknowledge that they have, say, an epidemic predominantly of men who have sex with men or injecting drug users. See my story on programs that target Mexican migrant workers.

* Politics and religious concerns often prevent many countries from aggressively promoting proven prevention tools, be they condoms, harm reduction for drug users, or sex education of teens.

* Five people are infected for every two who start treatment - which raises stark funding questions about how the world can continue to promise access for all

* In the end, the two holy grails that remain are developing a vaccine and finding a cure. They are two of the trickiest stories, too.

The vaccine search has been a roller coaster ride of hope and despair. That's a compelling tale in itself. But, beyond tracking the ups and downs of the lead "candidates" in clinical trials, terrific stories abound in less obvious places like monkey studies and close examinations of people who either resist becoming infected despite repeated exposures or do not suffer any ill consequences from their infections.

A "cure" - a four-letter word to many researchers who worry about raising false hopes - is a more remote possibility still. Yet stronger drugs and a better understanding of how the virus persists will continue to keep this dream alive - and worthy of close attention from the media.

Watch for tectonic shifts

Journalism strives to report what's new, and as the HIV/AIDS epidemic ages, it becomes more difficult to find novel angles. But the epidemic has changed radically since it surfaced in 1981.

A disease once thought to primarily afflict gay men now mainly spreads through heterosexual sex. Great confusion about the cause of AIDS has given way to a clearer understanding of this virus than any other pathogen ever discovered. Once a death sentence, HIV can be tamed by drug cocktails that allow people to live nearly normal life spans. The wall that separates poor from rich has started to crumble, offering millions of people access to treatment and prevention advances.

These tectonic shifts are one of the most interesting aspects of covering the epidemic: The story keeps changing. The challenge is to see the changes as they're happening, and that requires looking far beyond the pronouncements of important people, conference presentations and press releases.

Jon Cohen has covered the HIV/AIDS epidemic for two decades from many regions of the world. He is a correspondent with Science magazine, and author of "Shots in the Dark: The Wayward Search for an AIDS Vaccine."