Of guidelines, targets and resources: the documents that defined the 2014 International AIDS Conference

As the conference proceeded and the new guidelines found their way into numerous presentations and debates, it became apparent that their radicalism covered a lot more than PrEP. WHO had issued its Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection only last year, and they were structured in a way that has become familiar over the last few years: around the “HIV care cascade”, the sequence of targets that has to be hit – proportion tested, proportion in care, proportion on treatment, proportion virally suppressed – if enough people living with HIV are to become essentially non-infectious and turn the epidemic around.

These guidelines in themselves made new recommendations – that HIV testing in the community and at home was as good as provider-initiated testing, for instance – and increased the CD4 threshold for treating HIV to 500 cells/mm³. But they were still written as an essentially ‘top-down’ approach to ending the epidemic: if we get our programmes right, test enough people, fund enough treatment, get as many people as we can on antiretroviral therapy, then the epidemic will end.

During the year, several events and some evidence suggested it might not be so simple. Notoriously, anti-gay legislation was enacted or rather intensified in Uganda, Russia and Nigeria, at least one HIV clinic was raided and at the Global Forum for MSM and HIV (MSMGF) meeting before the main conference in Melbourne, evidence was presented showing that this was already leading to MSM staying away from healthcare facilities.

Evidence was also presented at the Vancouver treatment-as-prevention meeting that the forcible detention of people who inject drugs (PWIDs) in southeast Asia was also having negative effects on HIV prevention there.

The International AIDS Conference also heard yet more evidence of rising HIV epidemics in MSM in various parts of the world – including one study from Bangkok that showed that 45% of young gay men who used condoms inconsistently would have HIV within five years of starting sex, and 20% who tried to use condoms consistently.

Fascinating evidence was also presented at the conference that HIV stigma and barriers to disclosure in some communities were such that simply providing ART to people with HIV without counselling that supported disclosure within their relationship might lead to very poor adherence and viral suppression rates. This evidence came from heterosexual couples, but may apply equally if not more powerfully to populations that are more stigmatised and between whom talk of HIV status is more fraught with problems such as criminalisation.

Such events and evidence led WHO to be concerned that “Without addressing the needs of Key Populations, a sustainable response to HIV will not be achieved”.

Not only this: “To date, however, in most countries with generalized HIV epidemics, the response has focused almost exclusively on the general population. Even countries recognizing that HIV epidemics are concentrated in key populations often are reluctant to implement adequate interventions that reach those most in need.”

Furthermore: “In many settings HIV incidence in the general population has stabilised or fallen. However, globally, key populations continue to experience significant HIV burden” – and yet “health data, including HIV prevalence data, are less robust for key populations…due to complexities in sampling…legal concerns and issues of stigma and discrimination. Laws criminalizing the behaviour of key populations make it difficult to collect representative data.”

In other words, not only do the key populations bear a disproportionate burden of HIV, we do not even know what that burden is because it affects people afraid to be counted.

Therefore, although it has issued separate guidelines in the past on key populations such as men who have sex with men, people who inject drugs, prisoners, sex workers and transgender people, WHO decided to make addressing the needs of key populations the main focus of their 2014 document.

WHO makes a very clear distinction between Key populations and Vulnerable populations – one that was missed in some responses to the document, which asked why groups such as adolescents and women were not included.

WHO defines key populations as people who “due to specific higher-risk behaviours, are at increased risk of HIV irrespective of the epidemic type or local context” [WHO’s emphasis]. In other words, they are at extra risk of HIV simply by being who they are and doing what they do.

Vulnerable populations are people who “are particularly vulnerable to HIV infection in certain situations or contexts, [WHO’s emphasis] such as adolescents (particularly adolescent girls in sub-Saharan Africa), orphans, street children, people with disabilities and migrant and mobile workers. These populations are not affected by HIV uniformly across all countries and epidemics.” However, they add, many of the guidelines’ recommendations apply to them.

WHO adds that it is not sufficient to address the needs of key populations: “They also are essential partners in an effective response to the epidemic.”

Thus, Gottfried Hirnschall, WHO’s Director of HIV, told the conference that in terms of specific changes to recommendations there were not a lot of new ones in the new guidelines. The difference was that for the first time the guidelines had been shared by a large and comprehensive consultation exercise that had taken into account “The values and preferences of the communities.”

In fact, there is only one other specific recommendation that is brand new in the guidelines (other than the recommendation on PrEP for MSM mentioned above). WHO recommends, as it has done before, access to needle and syringe programmes and to opiate substitution therapy, but adds a recommendation that people who inject drugs should be provided with emergency packs of the heroin antidote naloxone for use by friends or by the users themselves in case of accidental overdose.

WHO’s Philip Read told the conference that more people who inject drugs now died of heroin overdoses than AIDS and that 60% of overdoses occur in front of another person. Almost all the people who inject drugs interviewed for the WHO research had at some time witnessed an overdose, and in the first year of a trial of naloxone packs, 20% were used. This provision of ‘PEP for overdose’ could lead to substantial saved lives, he said.

Needless to say, such specific recommendations will not be sufficient to save lives unless the structures that oppress key affected populations are also dismantled. The first of the ‘critical enablers’ that will be necessary to enact prevention for the key affected populations is that “Laws, policies and practices should be reviewed and, where necessary, revised by policymakers and government leaders, with meaningful engagement of stakeholders from key population groups, to allow and support the implementation and scale-up of health-care services for key populations.” The others tackle violence, discrimination and other barriers to accessing care.

Rachel Baggaley, who was in charge of collating the evidence that led to the recommendation on PrEP, said that healthcare worker attitudes were also an important disincentive for key affected populations to come forward for care. This had led to a wasteful situation where there were parallel healthcare systems in many countries, the government one and one run by community-based organisations funded by non-governmental money that were consulted by the public servants in charge of the country’s HIV strategy. This was often necessary to deliver any services at all, but resulted in a blindness of governments to the key affected populations in their midst and contributed to denial of their existence or needs..

WHO, then, this year issued guidelines informed by a more “bottom-up” consultancy process whereby the needs and opinions of the community informed what HIV programmes should do. However, they were asked at a press conference about the new guidelines, did this mean that the WHO had abandoned the idea of 'universal test and treat' altogether, and were they ever going to recommend that all people with HIV were offered treatment on diagnosis?

Another document was issued at the conference which took a hopefully complementary approach towards solving the HIV epidemic. UNAIDS issued for public consultancy – meaning it is not yet in its finalised form – a discussion paper, Ambitious treatment targets: writing the final chapter of the AIDS epidemic, which proposes the next aspirational target it wants to set for the world to meet. This would be the 90/90/90 target, meaning that by 2020 90% of all people living with HIV would know their status: 90% of those would be on treatment: and 90% of those would be virally suppressed. This would mean that 72.9% of the entire world population of people living with HIV would have an undetectable viral load by 2020. If they did, then models predict the end of HIV as an epidemic disease by 2030.

At first sight, this looks incredibly ambitious. Currently, only 37% of people in the world with HIV receive antiretroviral therapy and fewer in some areas such as eastern Europe (21%). And, as UNAIDS explains, previous targets such as the last '15 by 15’ one (15 million people on ART by 2015) do not capture the multistage cascade of achievements that need to happen in order to achieve such a figure.

And yet: it looks as if the 15 by 15 target will be achieved. “Targets promote accountability” say UNAIDS and the organisation’s Chief of Special Initiatives, Badara Samb, said: “This is the kind of document that will land in a health minister’s in-tray. Targets get remembered by politicians.”

Besides which, UNAIDS says, targets “demonstrate that AIDS is a winnable fight.” In other words we will only end AIDS if we believe we can.

UNAIDS believes the evidence suggests that it is possible to end AIDS. For instance, there are a few countries in Africa – Ethiopia and Malawi for instance – where already over two-thirds of adults have tested for HIV at least once, and one, Rwanda, where over 80% have. In Latin America, an average of 70% of people living with HIV know their status – though this varies widely from 43% in Colombia to 80% in Brazil (and 90% in Cuba).

One of the important ways to do this is to incorporate HIV in multi-disease health campaigns, UNAIDS says, and such campaigns in Kenya have led to 86% of people knowing their HIV status.

Retaining people on treatment has proved to be a challenge in some areas but in Latin America and the Caribbean, it is estimated that of those who are started on treatment, an average of 80% are still on it two years later (there are a couple of glaring exceptions, the small nations of the Bahamas and Belize, where half of those who start treatment have dropped out within a year: these exceptions are useful as sources of information on how to do it better).

As for the third target of viral suppression, there is again a wide spread of achievement in different countries. The 83% of people on treatment who are virally suppressed in Rwanda shows what is possible: the less than 45% cited by one researcher for Zambia shows what can happen without proper support. Similarly, although viral suppression rates for people on ART in Brazil and Mexico are 80%, in other countries such as Venezuela and Cuba, that claim very high rates of retention in care, they hover around 50%. This exemplifies how the ‘treatment cascade’ approach can expose weaknesses in a system that has strengths in other places.

Achieving 90/90/90 will be a huge challenge. In sub-Saharan Africa, for instance, only 29% of people living with HIV are currently virally suppressed. One of the problems is that measuring viral suppression itself is going to be a challenge: studies have shown that switching treatment on the basis of CD4 counts or clinical symptoms can result in switching that is either too soon (so wastes still effective drugs) or far too late (so maintains people on therapies that aren’t working, creating sickness and drug resistance). But viral load testing technology is still too expensive for low-income countries and UNAIDS admits there will still not be enough viral load testing by 2020.

Another challenge is children: fewer children who need ART get it than adults and only 10 of 29 currently available HIV medicines are approved for paediatric use.

There are a number of 'elephants in the room' in the UNAIDS discussion paper: glaringly absent are data from Russia and central Asia, the Middle East and indeed some of the upper-income countries that are failing to treat their key affected populations, notably the United States. And some HIV campaigners believe that there are structural problems ahead that may prevent UNAIDS from getting anywhere near their goal.

One final question: there’s an inherent contradiction between ‘stretch targets’ and ‘evidence-based recommendations’, and some WHO personnel expressed reservations to aidsmap.com that the UNAIDS targets might be too far removed from the latter. Evidence-based guidelines say: “Let’s do what we know works, and only that” and the former uses what we know works as a springboard for what might work. It’s great to have ambitions: but it’s important to adapt them if the evidence suggests they should be different.

Activist group, the International Treatment Preparedness Coalition (ITPC) for instance, has released its own report on progress towards the 2013 WHO guidelines that finds patchy progress in different areas and, in particular, drug stock-outs and regulations that bar certain people from treatment on a micro level.

But Christine Stegling, ITPC’s regional director, is concerned not so much with what has been happening as with what may happen.

“Some of the rhetoric about AIDS simply doesn’t match the reality of what’s on the ground. Not only are people not getting what they’re entitled to, they’re not aware of what they should be getting because treatment literacy is so low. There is very little grassroots awareness of the WHO treatment guidelines and, of course, very few non-discriminatory services tailored to the needs of key affected populations.

“We all like ‘stretch targets’ but you need to put them in context. One of the biggest threats, ironically, is the economic progress some countries are making: by 2020, 70% of the priority countries targeted by providers like the Global Fund and PEPFAR will be in the middle-income bracket which, according to current agreements, will deprive them of cheap generic drugs. One of the big problems here is that the HIV activist community has such low awareness of intellectual property rights and how we can work trade agreements like TRIPS to our advantage.

“Generics won’t necessarily be cheaply available: many generic companies have been bought by the big pharmaceutical companies whose motto seems to be ‘If you can’t beat them, buy them’.

“We welcome the general aim of the UNAIDS targets, but we need to ensure they are not insensitive and ‘pushy’: what is achievable for a pregnant woman in Uganda may not be achievable for a gay man there, and even in majority populations we are seeing really bad retention and drug resistance in some programmes.”

One answer to the ‘middle income’ problem of course is to tell the governments of such countries to step up to the plate and pay for treating HIV themselves. Although some countries with wealth like Nigeria are not only failing to do this but actively persecuting their key populations, UNAIDS shows in its discussion paper a very promising graphic that plots Asian countries’ per-capita GDPs with the proportion of their spend on AIDS that is domestic.

In the main the correlation is very strong. Thus, in the poorest Asian countries like Nepal (per capita GDP US$690 a year) and Bangladesh ($752 a year) the proportion of AIDS funding contributed by the country’s own government is only 1% and 8% respectively. In contrast, in well-off Malaysia (per capita GDP $10,432 a year), 97% of AIDS funding comes from the Malaysian government. Where countries’ AIDS spend is out of line, it tends to be in the direction of over- rather than under-spending: in Thailand (per capita GDP $5480 a year), 85% of AIDS spending is domestic: the figure is very similar for China. India (per capita GDP $1503, proportion of AIDS spend domestic 10%) falls slightly below the line, but India has numerically the biggest HIV burden in the region and also has a number of exceptionally well-financed HIV programmes that are transitioning towards government funding.

In other words, in general, and with many exceptions, the world seems to be meeting the financial challenge of AIDS. The question is: will it meet the political and cultural challenges too?

World Health Organization: Consolidated guidelines on HIV prevention, diagnosis, treatment and care for key populations – see www.who.int/hiv/pub/guidelines/keypopulations/en/

UNAIDS: Ambitious Treatment Targets: writing the final chapter of the AIDS epidemic – see www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/JC2670_UNAIDS_Treatment_Targets_en.pdf

International Treatment Preparedness Coalition: Global Policy, Local Disconnects: a look into the implementation of the 2013 HIV treatment guidelines – see www.itpcglobal.org/atomic-documents/11057/20005/WHO%20Report_web.pdf