Poor data imperils global effort to end AIDS

We live in a data-driven world. From simple Google searches to multi-billion dollar business deals and smartphones, analysis of vast collections of data helps shape decisions in every area of our lives. 

Yet when it comes to ending one of the gravest health conditions for over the past 30 years, the AIDS pandemic, decision-makers are often working with incomplete information—either because the data they need does not exist or because the best available information isn’t being used to guide decisions. Today, thanks to major investments from the U.S. and other countries, data on HIV/AIDS in low- and middle-income countries are among the best across health conditions. This data needs to get to, and be used by, decision-makers in real-time. However, there remains vast room for improvement. Much of the currently available data is based upon estimates, and more concrete data suffer from reporting time lags that impair real-time decision-making. 

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There is also data that are not being systematically collected. At both the global and national levels, for example, these fundamental questions remain perpetually unaddressed:

-   What proportion of people with HIV globally who are taking antiretroviral drugs remain connected to a clinical provider and have their virus fully suppressed, enabling them to remain healthy and avoid transmitting HIV to others?

-   What proportions of those communities most impacted by HIV (e.g. young women in Africa, gay men and other men who have sex with men, transgender individuals, sex workers, people who inject drugs) do not have access to effective HIV prevention tools due to pervasive stigma or discrimination?

-   Is global AIDS funding focused on the programs that will have the greatest impact in reducing transmission and disease burden world wide?

Addressing the “data gap” was a central theme at last month’s International AIDS Conference in Melbourne, Australia. Throughout the event, there was talk about ending the epidemic by 2030. Such ambition is warranted: we have more powerful tools for halting HIV transmission and saving lives than ever before. Many press outlets reported the new targets promulgated by UNAIDS, which called for across the board 90% targets for the proportion people who know that they are HIV-positive; the proportion of people diagnosed with HIV who are taking lifesaving medication; and the proportion of people with diagnosed with HIV and taking medication who are virally suppressed. To achieve these targets, we must improve our data systems and identify specific milestones that we need to meet over the next one to three years to ensure we get on – and stay on – target to achieve these ambitious goals.

Two years earlier, during the 2012 International AIDS Conference in Washington, DC, our organizations made the case for a more business-like approach to ending AIDS.  We proposed a multi-year plan with concrete strategies, targets and timelines.

Since then, we have done our best to track progress against the targets we set, and to help hold AIDS programs and funders accountable for action. The data that does exist suggest real progress. For example, the world appears to be on track to meet a programmatic “tipping point” when, for the first time, the total number of people gaining access to HIV treatment exceeds the number of people becoming newly infected. Big progress is also finally being made on voluntary medical male circumcision, a hugely cost-effective prevention option that was initially slow to gain traction. 

It is imperative that we go further in tracking our global progress in fighting HIV. The roadblocks in achieving this goal run the gamut. Sometimes, the problem is that necessary data collection systems just are not in place. For example, there is very little tracking of viral load – a measure of the amount of HIV in a person’s bloodstream that is critical for both treatment and prevention success – among people being treated with HIV. In other cases, data are simply too old or are not analyzed in the ways that would be most useful.

While the responsibility for good data lies with many, three major global institutions could make a huge impact by improving their approaches: UNAIDS, the US-funded PEPFAR program, and the Global Fund to Fight AIDS, Tuberculosis and Malaria. These are not only the largest funders of AIDS programs worldwide; they are also the biggest potential sources of data that can provide a composite picture of global progress in combatting HIV.

In a new report available at www.endingaids.org this week, we call on these organizations to dramatically improve their collection, analysis and reporting of HIV/AIDS information. Data from all three agencies needs to be coordinated and accessible at more frequent intervals.

Good decisions always require good information. When resources are limited, data matters even more. With global AIDS funding trailing far short of what is needed, we have to prioritize those treatment and prevention strategies that can save the greatest number of lives, and then aggressively monitor progress.

Focusing on stronger data collection may not be hip or an easy concept around which to rally, but no one can deny how the collection of data could and has transformed our lives for the better. It’s now time for data to transform the global AIDS response as well.

Warren is the executive director for AVAC.  Millett is the VP and director of Public Policy for amfAR, the Foundation for AIDS Research.