HIV treatment as HIV prevention debate

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The notion of antiretroviral treatment as a form of HIV prevention is in the news again, following a presentation by Brian Williams at the 

American Association for the Advancement of Science meeting in San Diego (

http://www.guardian.co.uk/world/2010/feb/21/blanket-testing-hiv-aids). Commentators including Elisabeth Pisani have questioned the wisdom of putting all the prevention “eggs” in the ART basket, asking whether expanded treatment programmes will really reach people who are in their most infectious period, and suggesting that expanded treatment can desensitise people to the need for preventive behaviours (http://www.guardian.co.uk/commentisfree/2010/feb/22/the-drugs-wont-work).

The idea of treatment as prevention has been around for a long time, but I have always felt a bit dubious about activism that implies that the prevention benefits justify the expansion of ART.  I’ve always assumed that the effect of ART on mortality and quality of life should be justification enough.  I can see why some might think this is a naive assumption, given the looming threat of funding being taken away from treatment programmes – of a reversal of the hard-fought battle to win access to HIV treatment for millions of people around the world. 

Nonetheless, there are other questions raised by this debate.  The global health movement has learned a huge amount from the fight against HIV and AIDS – in terms of activism for access to treatment, certainly.  But also in terms of the role that communities can play in improving health; in terms of the links between human rights and health; and in terms of the need for exceptional responses to some health challenges, especially where stigmatised and marginalised groups are the most affected.  If rapid access to HIV treatment proves not only to prolong the lives of people infected, but also to cut further HIV transmission, then that’s great news.  But let’s not forget that it was human actions, not technological fixes that got the response to HIV and AIDS to where it is today; and that the broader global health movement needs above all to learn from this.

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Annotated bibliography on economics and sex work (from 2008)

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This bibliography is on the website of PLRI (Paulo Longo Research Initiative), an initiative aimed at promoting better research on sex work.  It’s not comprehensive but we tried to cover most of the types of literature available.  PLRI member organisations plan to take forward an economic analysis perspective on research on sex work.  The bibliography was commissioned by the Institute of Development Studies.

http://bit.ly/9Wi6Lo

Discussion on sex work and human rights

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Start with good intentions, two posts in a day… I doubt it will last.

Here is a link to a report I worked on last year, on behalf of a group of private donors who are looking to develop a collaboration to fund sex worker’s rights.  The 2nd part of the report is really quite specific to the donors in question and to the meeting the report was produced for so I’m not sure whether it is of much broader interest.  The 3rd part of the report is quite conceptual but could be of interest to anyone thinking about the purpose of collaborations (on any issue).  I think the first part, however, could be of interest to anyone interested in how global sex worker rights efforts have evolved; it also provides a formal(ish) analysis of human rights in relation to sex work.  Here it is, on the website of Open Society Institute SHARP Project, who commissioned the work: bit.ly/aRuzNC.

What is a community system for health?

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Background

The Global Fund is putting considerable emphasis on “community systems strengthening”, as a core strategy to be included in projects.  A number of organisations, including the Fund itself, have produced documents defining “community systems strengthening” (CSS), and explaining how it can be incorporated in grant proposals.

The documents defining CSS provide lengthy lists of the types of strengthening that can be included, and focus for the most part on capacity building for civil society organisations (CSOs): development of systems, training of human resources, supporting partnership development both with other CSOs and with other sectors, and providing longer term, predictable funding.

What the documents on CSS – and discussions on civil society involvement in the response to AIDS, TB and malaria more generally – do not provide is a great deal of vision about where CSS should take us.  We are left asking the question: what is a community system?  The new framework developed by the Global Fund, and currently subject of a consultation led by International HIV/AIDS Alliance, makes progress on this issue.

My sense is that the international health community emphasises the potential contribution communities are expected to make to the success of health programmes, while under-defining what communities are and how they function in different settings; and that while there is an understanding of the nature of the capacities that are needed to improve the impact of health programmes through the involvement of CSOs, there is very little understanding of what resources are needed to build and maintain these capacities at sufficient scale to have an impact; nor of where the role of communities ends and the role of the state begins.  I believe that many of the fundamental premises of “community involvement” are sound, and therefore call for greater efforts to define how this should work, so that the right technical and financial resources are made available.

Communities and health

Community itself is, of course, an ill-defined concept.  What seems to be envisaged when the term community is used is a fairly stable, self contained, rural community – such as a village.  But it could mean lots of other things… we hear about communities of people living with HIV, sexual minority communities, and so on.  Depending on your approach, community may or may not include state or elected officials such as the police, mayors, or health extension workers.

Communities are held by many to be central to the success not only of AIDS, tuberculosis and malaria programmes, but indeed of public health (and development programmes more generally).  There are many rationales:

        That health improvement happens “in communities”, not in facilities

        That communities “know best” how to tackle health programmes, and that therefore:

o   their participation in designing programmes can help orient them more effectively – including by more effectively identifying those most in need and by identifying how best to support these people

o   their participation in implementing programmes can help ensure they are implemented in the most effective, contextually relevant way

        That community participation either in the design, the implementation, or the evaluation of programmes:

o   is a right

o   can help ensure accountability of government or private services

o   can help achieve greater scale more quickly by moving away from an emphasis on all services being provided by professionals and in clinical settings

o   is more sustainable (or, alternatively, cheaper)

The fight against AIDS has in many ways revolutionised our understanding of these narratives, and of how communities can participate in improving health.  The different narratives on community involvement in improving health are varied – some may also be in opposition to each other.  If communities have a major role in managing and providing resources and services, what happens to the accountability of the state?  Might communities stewarding funds from the state end up being accountable to central government, rather than government being accountable to communities?

Civil society organisations and health

The notion of community involvement in health – and how it operates – is further complicated by the role of civil society organisations (CSOs).  CSOs are often a convenient proxy for communities – not least because, as a legal entity, they can more easily be contracted by donors to provide services.

CSOs play varied roles:

  • Watchdogs
  •  Advocates for broad or narrow interests
  • Providers both of “hard” services (for instance clinics) and “soft” services (for instance, social mobilisation and outreach services)

Many CSOs are part of broader networks, for instance faith based organisations.  In some, but not all cases these networks have very clear values on the one hand and strong “quality control” mechanisms on the other.  Many CSOs have strong roots in communities where they work – however, this is not a given.  Strong community roots are not inherent to the structure of a CSO.

Although there can be many advantages to CSOs implementing services – in particular where the state cannot provide the services – they can also provide a convenient mechanism for external donors to channel funding, in particular where donors do not favour funding states.  While donors argue that governments do not have the capacity to implement health programmes at the scale demanded, governments might argue that this lack of capacity is inevitable as long as resources are withheld from them.  If, in every part of every country, the civil society sector itself had the capacity to implement at scale, it might be easier to demonstrate the essential role of the sector to the government.  But often, civil society capacity – to implement good quality programmes, at scale, but also to manage the resources and systems needed to make this happen – is even weaker than the capacity of the state.  Governments might respond, quite understandably, by saying: if you have the time, resources, and commitment to build capacity and new systems, why not build ours?

The paradox is this: we want to move toward a model whereby governments and CSOs are partners in delivering services to the scale that communities need, but the mechanism through which this must happen is one that might challenge the role of the state.

Don’t we need therefore to define “community systems” as part of health systems (and other social systems) rather than as separate systems?  Maybe – it’s hard to see how the capacity and contribution of CSOs will get to scale otherwise because the conditions under which they will have to work will never allow them to grow.  But the danger is that this will reduce the role of communities and civil society in demanding accountability from the state… and it may perpetuate marginalisation where it already exists.  The cost of such an approach might be the abandonment of the most marginalised and stigmatized groups.  Work on defining community systems needs to establish how to support CSO implementation / service delivery at scale while ensuring that issuesof human rights, marginalisation, accountability etc continue to beaddressed.

Health Systems and Community Systems

The concept of “community systems” in respect to health programmes seems to have evolved as a response to the Global Fund’s acceptance, around 2004-2005, of the principle of funding health systems strengthening measures providing they could be shown to be directly related to achieving impact on the three diseases.  As a result, many countries have managed to use Global Fund projects to drive improvements in their health systems.

Perhaps naturally, given that CSOs are considered by the Global Fund to have a fundamental role in scaling up AIDS, TB and Malaria programmes including by acting as a bridge between the formal health sector and communities; and given that in many countries CSOs suffer from chronic under-investment, unpredictable funding, and poor technical capacity; CSOs called for more attention to be paid to the strengthening “community systems”.  At the same time though, the idea of community participation in health improvement goes back much further than this particular incarnation.

Although health systems throughout the world are diverse, there is broad agreement on many of the characteristics of a health system, particularly in relation to:

        Standards for the training and qualifications of health personnel

        Standards for the procurement and supply of consumables and drugs

        A hierarchy of “levels” of health care specialism (primary, secondary, tertiary; and community health)

        Maximum distances that people should have to travel to receive health care

        The approximate proportion of government income that should be spent on health care

        Although there is no particular agreement on how and whether cost recovery systems should operate, there is general consensus that it is important to remove financial barriers to accessing care for the poorest and destitute

Besides this, health systems in most countries are centrally planned and funded – there are channels by which funding and supplies are provided to peripheral services.  This also means that donors wishing to finance health programmes have a fairly obvious place to allocate funds to.

It is important to acknowledge that these characteristics and standards are, in many countries, somewhat theoretical.  Many health sectors, and especially many peripheral health care providers, are extremely weak and often not functional.  However, the point is that the concept of a health system is a well-established one; health systems is an area that donors and international institutions pay a lot of attention to.  When we talk about strengthening health systems, we know more or less what we are talking about.

The same cannot be said for community systems.  There are very few norms for community systems – whether in terms of what they do, or in terms of how they are funded and supported.  They might be any or all of the following:

        Non-governmental

        Governmental (e.g. community health workers)

        An essential component of a public health system

        An alternative to the public health system

        Filling the gaps of a public health system, whether this be temporary (while the public health system gets is act together) or permanent (where the activities are seen as inherently outside of the public health system)

        Service provision focussed

        Advocacy/accountability focussed

        Clinical

        Exclusively non-clinical

There is merit to all of these roles – but not one of them is universally true of all “community” action.  Given this diversity of potentially contradictory roles, there may not be much point in concretely defining community systems because what they should be really depends on the context.  Part of the advantage of “community systems” may be their flexibility – although this implies that they can potentially do almost anything. However, if communities are expected to be a major partner in improving health, it surely makes sense to better define the potential roles and to develop a vision for what this role should look like:

        Fundamentally, in terms of the end results they achieve

        Technically – in terms of norms and standards (and if the CS is providing services, there should be no reason why such norms cannot be developed just as they are in the public sector)

        Operationally – in terms of how they interact with formal health systems and other social welfare systems.

 

It probably also makes sense to better define the different operational models for planning, funding and operating community systems.  In the response to HIV/AIDS, civil society programming tends to be supported by grant-making.  Grants are often for short periods, with no guarantee of renewals, and often driven by donor agendas.  There is generally no “core operational funding” for civil society organisations, which means that when a grant stops, what staff and other resources there were are hard to reassemble when the next grant comes along, so that capacity has to be built all over again.  Few CSOs have paid staff, and volunteers tend to be motivated by formal and quasi-formal means such as per-diems, transport costs, and material goods.

 

If we’re serious about community systems we need to start looking at these principles and definitions.  They should become a serious field of study within public health.  If not, we will continue to operate with long – perhaps even unlimited – shopping lists of what communities should be allowed to do, with requests for support that are hard to refuse on the one hand but impossible to rationalise in terms of scaled up country level programmes on the other.  Although it is good that the Global Fund is facilitating the discussions, I think that ultimately it should be taken up by the WHO and academia.  The risk of it being led by a donor, with all respect to the Global Fund, is that the discussion will be narrowly focused on the identification of things that can be put into funding proposals, rather than being the much bigger revolution in public health thinking that we need.