I’m lucky to be starting 2017 in Grenada, a flawlessly beautiful island nation of just 100,000 people. But Grenada, like many countries, has found it hard to gather basic HIV data in a context where same-sex sexuality and sex work are illegal.
You can circle the whole country in a jeep in one sunny afternoon, as a friend and I did last week, and be greeted warmly everywhere. One local friend says that if he gets a flat tire, at least three people he knows will stop to help. But in part because the country is so close-knit and stigma is deep, many people living with HIV remain hidden, unreached and uncounted.
Like many countries, Grenada suffers from the HIV data paradox: it has a good hospital, a well-regarded medical school, HIV funding from all the big global donors…but almost no data on the epidemic. Fearing stigma, discrimination, and criminalization, many people just don’t want to come forward to take an HIV test. They wait to go to the clinic until they’re seriously ill: in 2013, of the 517 people ever diagnosed with HIV in Grenada, 45% had passed away.
So how will we meet ambitious global targets to ‘end AIDS’ in the many countries where despite increasing efforts, the epidemic remains hidden? It’s time to rethink how we set those targets in the first place.
What the global models miss – To spur countries to meet Sustainable Development Goal 3.3, which aims to “end HIV by 2030”, the UN has set the famous “90-90-90” targets: 90 percent of people living with HIV should know their status, 90 percent of those people are on antiretroviral treatment, and 90 percent of people on treatment are virally suppressed. Like Grenada, most countries lack HIV data. For small countries, targets are often based on case reports and other available data.* For many other countries, the 90-90-90 targets come from mathematical models which are based largely on estimates. Many countries will just copy and paste these targets into their national plans.
Only problem with those ambitious 90-90-90 targets: no country has ever achieved them. Not Sweden, not the US — no one. And the mathematical models that produce those targets leave out the complex realities most countries contend with on a daily basis: weak health systems, sluggish procurement, laws that criminalize key populations, armed conflict, natural disasters, and more that combine to make ending HIV a distant dream in many contexts. As Mark Heywood put it:
In activist meetings a very different picture is emerging to the optimistic one that government officials, ours included, wanted to make the AIDS story. There are medicine stock-outs in many countries. Sex workers and drugs users are humiliated, imprisoned and sometimes murdered. Poor people in rich countries are being left behind.
Thus for example, a Lancet HIV special issue on prevention shows huge impacts if we scale up investment in condoms and other prevention services for sex workers and men who have sex with men in Nigeria and South Africa. But sex work is criminalized in South Africa, and both sex work and same-sex sexuality are criminalized in Nigeria. Police use condoms as evidence in bringing charges. As I wrote in a letter to the editors, the models create a hyper-optimistic scenario by ignoring real-life barriers.
Big targets are supposed to create big ambitions. They can also create large problems: too much money can be as damaging as too little. To meet the targets, countries with larger HIV burdens may get more aid. But larger aid allocations can lead to problems with cash absorption (in which countries receive more money than they can spend), distortion of local economies, and corruption. And if national health programs adopt targets they cannot meet, and “fail to end AIDS”, will donors use that as an excuse to pull the plug on the AIDS response?
The more paranoid among AIDS activists suspect that the ambitious targets are driven partly by donor AIDS fatigue in the US, UK, France and Germany. The rhetoric on “ending AIDS” could also be a way for donors to say, through the UN, “End AIDS so that we don’t have to fund it anymore. Fail to end AIDS and we also won’t fund it anymore.”
Faced with the pressure to demonstrate progress towards the “end of AIDS”, national HIV programs are likely to be dazzled by high-tech quick fixes such as biometrics (fingerprinting, iris-scanning, toeprinting), or even — yes, really — implanting chips to track patients. For key populations, who face risk of extortion, arrest, police abuse, stigma and discrimination, these quick fixes could be disastrous. But there are alternatives…
Could global HIV targets be set locally?
Elsewhere in the Caribbean, Jamaica AIDS Support for Life (JALS) has a different approach. When I visited one of their Kingston clinics in December, staff described a comprehensive program: HIV testing and prevention services, nutritionists, psychologists, adherence counselors, job training and legal aid services all combine to keep their target community closely engaged. When I asked how they kept client info anonymous (homosexuality is criminalized in Jamaica, too), staff said, “Clients volunteer to give us their real names, because they want school certificates when they finish our job training programs.” No chip required.
JALS’ M&E officer called their approach “a relationship model”, and described forming long-term sustained relationships with their highly mobile, hidden clients. Sure enough, during our meeting two days before Christmas when the rest of the Caribbean was winding down, clients kept right on streaming into the JALS clinic. As a result, JALS says they can set ambitious but practical targets for scale-up of HIV prevention services — targets based not on mathematical models, but on years of rich, historical data built on relationships of trust.
The SDGs are highlighting the critical need for reliable, ethically gathered data everywhere. That data is missing at the national level in most countries — but it can sometimes be found in community-led programs doing peer outreach work, who have the trust of their communities and know who those populations are, where they are, and how best to reach them with services. If national HIV programs invested more in community-based peer outreach programs like these, they could get real quality data and aggregate it nationally to set meaningful targets — instead of having them modeled in Geneva, London or Washington.
As part of developing new National HIV/AIDS Strategic Plans, Global Fund funding requests, and PEPFAR Country Operational Plans, we need to roll up our sleeves and have more practical conversations about data and target-setting. Modelers and health officials should work together with affected communities to drive a process of ethically sound data collection that starts at the community level.
This approach should include key populations and people living with HIV, and frontline service providers, in leadership roles in designing and implementing both ethical HIV data collection and target-setting based on relationships of trust. (Leadership roles, not low-paid data-gathering roles.)
The drive for data is highlighting the fragility of the global AIDS response. If we can’t ground our numerical targets in respect for dignity, humanity and human rights at the most fundamental local level, the global AIDS architecture may crumble – from the top down.
(And if you haven’t had one lately, please consider adding an HIV test to your list of new year’s resolutions.)
*This blog was corrected to reflect advice from UNAIDS that for countries with populations under 250,000, like Grenada, targets are set based on available case studies and published research rather than based on models. Given the paucity of HIV research specifically on Grenada, though, this will also be challenging…