Data gaps hide pockets of HIV

HIV tests.jpg
Copyright: Brian Sokol / Panos

Speed read

  • Data sets on HIV are not good enough to correctly estimate the disease’s development
  • Facts on rural women, transgender people and homosexual men is hardest to obtain
  • Lack of information excludes vulnerable communities from HIV care and prevention

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Large pockets of HIV infection are not acknowledged, due to a lack of data on HIV occurrence and prevention efforts around the globe, a study has found.

“Protecting human rights is not just a moral issue, it is a scientific issue.”

Chris Beyrer, International AIDS Society

In particular, existing data fail to account adequately for adolescent girls, young women, as well as homosexual men and transgender people in HIV/AIDS-affected countries, says the report issued last month (18 June).

These shortcomings in data sets are due to cultural, geographical and educational reasons, the report says. For example, in many of the countries most afflicted by HIV/AIDS, women are less likely to be educated and more likely to live rurally, so they rarely participate in surveys.

In addition, transgender and homosexual men are often reluctant to come forward in countries that condemn their lifestyle, preventing them from taking part in face-to-face surveys, says the report by AVAC, a non-profit organisation that supports HIV/AIDS vaccine development.

“There’s no excuse for HIV prevention data systems to be so uneven, incomplete and inefficient,” said Mitchell Warren, AVAC’s executive director. “To have any chance of ending the epidemic by 2030, we need to be collecting and accounting for every bit of useful information from every person living with or at risk for HIV.”

AVAC report 2016. Click to expand.

The report states that better data is especially important in the light of a UN goal set last year to reduce new diagnoses to no more than 500,000 a year by 2020.

To meet this target, data needs to be more inclusive and better broken down, the report says. The authors criticise existing data sets for their lack of detail on factors such as age and gender, income status and location of people with HIV/AIDS.

The report explains that many countries now collect data on “people reached” – those who have had HIV testing or have participated in prevention programmes. However, there is little information beyond mere numbers, leaving health organisations and governments in the dark about who exactly is being reached, and how, the report says.

At the International AIDS Conference, which is taking place in Durban this week, policymakers echoed the report’s message. Chris Beyrer, president of the International AIDS Society, said that the human right to health was out of reach for the most vulnerably communities, because they are simply not identified and targeted in ongoing efforts to stamp out the disease.

“Protecting human rights is not just a moral issue, it is a scientific issue,” he said.