The PEPFAR pledge: Goosby’s sex work dissembling

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Eric Goosby, the head of the USA’s global HIV and AIDS programme PEPFAR, gave an interview during the recent International AIDS Conference in Vienna.  He was asked a question about the “prostitution pledge”, a legal requirement that all recipients of PEPFAR funding (and all subsequent recipients to whom funding is passed) have a policy explicitly opposing prostitution.  Here’s the question and the answer in full:

Q: Why has PEPFAR maintained the so-called “anti-prostitution pledge” that effectively leaves sex workers – a high risk group for HIV – out of PEPFAR’s programmes?

A: What the clause really was focused on was to ensure that PEPFAR did not fund organizations involved in trying to legalize prostitution and traffic women into prostitution. We have changed it so an organization doesn’t have to sign [a separate document pledging to oppose sex work and sex-trafficking]; we have folded in an agreement that the [beneficiary] organization will not traffic women into prostitution – there is no separate document.

PEPFAR has not de-funded any programme on the planet for these reasons. We want to care for every sex worker out there. If a sex worker comes into any of our facilities, that person will be embraced and followed for the duration of their life on antiretrovirals.

If there are examples of anybody being turned away [for being a sex worker], if someone feels that they were excluded from or dropped out of care for those reasons, we would get on that like a laser. 

Source: PlusNews: http://www.plusnews.org/Report.aspx?ReportId=89965 

 There is one fair point in his answer.  PEPFAR rules never said “don’t work with sex workers”.  His use of the term “sex worker” is also progress, since “prostitute” has been PEPFAR’s preferred terminology for some years.  However, everything else Goosby said at best fails to grasp the issues caused by the policy and is at worst disingenuous.  Such as:

  • The first point of contact for this policy was international non-governmental organisations and consultancy companies, which receive the lion’s share of PEPFAR money, to be used to manage deliver services and to fund smaller service delivery organisations.  Many of these organisations scaled back their work with sex workers, not because the US government told them to, but because they felt it was too great a risk to be seen to be doing anything that jeopardised the rest of their US funding.  It doesn’t matter that PEPFAR didn’t defund any programmes.  What matters is that organisations censored themselves in terms of what they did, how they did it, and how they talked about it.  A small number of organisations, like SANGRAM in India, turned down US funding on principle rather than develop such a policy – meaning that their efforts were also scaled back.  One can imagine that other projects quietly disappeared.  The reason no organisation has been defunded as an official sanction, is because no organisation has allowed itself to get into the position where it would be.
  • Delivering good AIDS programmes for sex workers means working with sex workers on the ground.  In many countries, sex workers have organised in various ways, for instance by forming unions, associations, and co-operatives.  Understandably, many of these movements have an interest, among other things, in reducing fundamental issues such as stigma, marginalisation, violence and extortion faced by their members – all things that contribute to increased risk of HIV, and all things that are worth fighting for in their own right.  Addressing these issues requires a degree of openness to challenging the power that the police have over sex workers, and by extension to decriminalisation.  These organisations were required to develop a policy that stated that they explicitly opposed prostitution – in other words that they explicitly opposed their own members.  So they had a choice: either work on HIV using very limited strategies (basically, giving out condoms and getting sex workers to get HIV tests), or lose their funding.  Neither of these is good for sex workers.
  • By requiring that funded organisations have a policy, and that all their partners have a policy, the PEPFAR pledge made sure that this provision was applied not just to the programmes US money was going to fund, but that it impacted all the activities of organisations being funded, however small the share of PEPFAR funding was.  This is very similar to the “gag-rule” which various US administrations have introduced to stop funding going to any organisation endorsing abortion.  One of the first things Obama did when he became president was to repeal the abortion gag – but no such move was made on the prostitution pledge.
  • Finally, Goosby says that “if a sex worker comes into any of our facilities, that person will be embraced”.  If this is true, it’s a miracle.  One of the biggest challenges that sex workers face is getting non-stigmatizing access to health services.  Finding the right health care workers, and/or training them (with the help of sex workers) to serve and treat sex workers respectfully and in accordance with their needs, is a crucial job.  Given how reluctant PEPFAR programmes have been to talk about rights-based approaches in the context of sex work, I find it hard to believe that they’ve done the training and preparation needed to make sure sex workers are treated the same as everyone else.  Many health facilities – including many of those funded by PEPFAR – are run by faith-based organizations.  Despite being of generally high quality, they often aren’t the most accepting of groups like sex workers.  Sometimes the situation for sex workers is so bad that they ask for different types of clinical service delivery – such as outreach services, special opening hours, or even special facilities.  It’s not just about walking into the nearest friendly service. 

Surely the impact of the Pledge should be measured in terms of the impact it has had on trafficking.  Another reason they didn’t defund any organisation is probably that global health NGOs don’t on the whole, do human trafficking.  Do “pro-trafficking” health organisations exist, and if they do did they fail to get money? What impact did it have?  Human trafficking is illegal pretty much all over the world, and certainly in the USA.  You’d think it would deserve greater sanction than the withdrawal from organisations involved in trafficking of the opportunity to get HIV/AIDS money.  But maybe, as many of us have long suspected, what this is really about is an opposition to prostitution, wilfully conflated with trafficking in the pledge.  PEPFAR policy called for programmes to provide alternatives to prostitution.  Let’s hear what impact the Pledge had on levels of commercial sex, then.

Ultimately, one of the major tragedies about the Pledge is the absence of the US government’s leadership on one of the most important areas of HIV and AIDS policy and programming.  US government leadership is incredibly important.  PEPFAR has saved millions of lives through providing treatment, and as a result has had a major impact on reducing HIV-related stigma.  In many regions US HIV programmes are playing a leading role in fighting homophobia.  On the other hand sex work (and, by the way, injecting drug use), have suffered from a complete failure of leadership.  And that’s why prevention programmes with sex workers and drug users are in such poor shape today.

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Civil society organisations, community systems, and Universal Access

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Broken record

My first proper blog post was about the big new idea of community systems strengthening, which the Global Fund to fight AIDS, Tuberculosis and Malaria is hoping to provide significant support to during its tenth funding round.  The Global Fund, as well as UNAIDS, have developed documents and tools to help countries writing proposals to the Global Fund to use this new concept.

The idea is to ensure that civil society or community based organisations receive sufficient funding and “capacity building” to be an effective part of efforts to fight AIDS, tuberculosis and malaria.  Civil society organisations have always been some of the most creative, active, and activist organisations working to fight these diseases and the various injustices that surround them, both by demanding that governments and health sectors take action, and by delivering services themselves when governments and health sectors can’t or won’t.  Community activism is one of the main reasons the Global Fund was created in the first place.

The idea of “community systems” for health – and human rights – is incredibly exciting, because it is clear that governments in most countries can’t meet health care needs on their own.  The idea of community involvement in health and of working in communities before people fall ill isn’t new, but in many countries it is still just an idea, or even an ideal.  Some civil society groups can also play a role in identifying and tackling marginalisation and human rights violations that make people more vulnerable.

The international community – again largely on the insistence of civil society groups – has set ambitious targets for addressing some of the world’s most pressing health problems.  One of these targets is that there should be universal access to HIV prevention and treatment services for people who need them by 2015.  That means not only providing a lot more services, but it also means getting rid of the barriers that stand in the way of people getting these services or being able to protect themselves.

Is “community systems strengthening” going to get us there?  In my view, it depends how it’s done.  It also requires a big shift in how not only governments, but also civil society organisations work.  This note focuses specifically on the challenges related to service delivery by civil society organisations.

Think “systems”

In my previous post I hinted that I think that for the community systems concept to work, we need to start thinking about what does and doesn’t work in formal health systems.  The strong points can help us define how best to structure civil society organisations.  The weaknesses can help us define what roles civil society organisations can play.  In other words, if we’re serious about using the word “system” to talk about what civil society organisations do, then we need to think in a more systematic way.  Specifically this means civil society organisations need to move away from reasoning in terms of what they can do or what they want to do, towards thinking in terms of what all actors (from both civil society and the formal health sector) need to do collectively to respond to needs.  Systems-approaches need to be introduced at different levels:

Strategy level

In order to know what collectively the different actors need to do, there needs to be a good, common understanding of what the needs are.  Although this is problematic in many settings, there has been a lot of progress in recent years, in particular in terms of identifying the groups that are most affected by the epidemic and the best ways of providing HIV treatment.  Although the concept of priority groups and interventions has gained traction recently, priority doesn’t always mean priority: decision-makers may be happy to fund programmes with priority groups but are often reluctant to turn down funding for others.  This is a problem when not all members of priority groups are being reached.

Secondly there needs to be a good, common understanding of what types of service or action should be provided to respond to each set of needs.  At the moment the exact content, quality and cost of services provided – particularly by civil society organisations – is highly variable.  This makes it nearly impossible to carry out rational planning.  And yet we’ve also come a long way in terms of identifying the types of services that are needed in different contexts.  To be sure there will always need to be some variation, and “contextualisation” of services, but this should be based on broadly accepted, evidence-based standards – not based solely on the capacities or organisational biases of whichever NGO happens to be working in a given location or with a given population.  We also know that no single intervention is sufficient to make the difference needed, and that few if any service provision organisations are able to provide all of the services or interventions that make up a comprehensive package.  What this means is that no one organisation can be expected to have an impact by working alone, and therefore partnerships between organisations are essential.

What this means is, that at national level it is necessary to put in place joint planning, based on a joint, evidence-based assessment of needs and jointly accepted standards for services to be delivered.  Civil society organisations are a diverse group with diverse interests and skills, and priorities.  Some organisations may be focussed on issues or services that are not, on the basis of the evidence, priorities for the AIDS response.  For this national level work to be useful it is necessary to have strong, functioning networking of civil society organisations, and for these organisations to be represented by leaders who have a combination of the technical skills and understanding of evidence required to participate effectively, excellent knowledge of the concerns of community groups, and the credibility and leadership required to obtain buy-in from civil society organisations, in particular for decisions that are unpopular.

It is also necessary to urgently develop clearer definitions and standards of the types of service and interventions that civil society organisations can provide – at country level. The World Health Organisation recently published a guide on HIV interventions in the health sector.  We need something similar for civil society organisations.  Or perhaps more ambitiously, we need something similar which captures all services and interventions, irrespective of whether they are health sector or community based, and that countries can adapt to their context. The aim should not be to restrict programming or creativity, but rather to insure that any service provider – whatever their sector – is adhering to evidence based approaches while allowing them the flexibility to adapt these norms in their own programmes.  This will also help to shift thinking back to a “community focused” approach, based primarily on responding to the needs of communities and ensuring they have access to services, rather than being based primarily on what each provider is willing or able to do.

Operational level

The principles and priorities established at a strategic level need to be made operational.  Assuming that the strategy has identified sites for the different priority community groups, and assuming that the focus is to respond to the needs of each community, it is necessary to bring together all of the actors in a given location – as well as representatives of the relevant communities – to identify what is already in place, to identify gaps and overlaps, and to decide how best to fill the gaps and reduce overlaps. Resources should be provided to enable actors to work in a continuous way – this is particularly important for civil society organisation programmes, since community interventions are often designed (or funded) to be short-term.  Evaluations shouldn’t be focussed on how many people received services, but what proportion had access to services and what the changes were as a result.  Results of evaluations should reflect the collective responsibility of all actors, rather than individual actors being expected to demonstrate an impact that they are unlikely to have made.

Funding and technical support level

Funding and technical support do not come last, chronologically speaking – but they are means to an end, and they only make sense once there is clarity on what needs to be achieved.  Whenever I am thinking of a “community systems” problem, I ask myself if there is a parallel in health systems, and if the health systems way of thinking can help in diagnosing the problem and finding the solution.  Health centres don’t get funded for just a 6 month period: NGOs often do.  Health centres aren’t supposed to get interruptions to their funding – although it happens quite often.  But it happens all the time to NGOs, in fact it is structurally part of how funding to NGOs is allocated, since they can rarely get a new funding tranche without submitting a progress report.  And this means NGOs spend a lot of time filling in monitoring and accounting forms rather than worrying about the impact of what they are doing.

Another example is that health centre interventions are always seen as being continuous, in principle; NGO ones are often seen as being “one-off”.  This is a particular problem for NGO programmes on HIV prevention, because somehow, decision-makers still seem to think that prevention means telling people about HIV then shutting up shop.

Technical support is much the same. People who staff health centres are normally highly trained before they start, and receive in-service training too.  For NGOs it’s luck of the draw… it depends whether the donor is convinced it is worthwhile spending the extra money. Working to improve the quality of what NGOs do, by improving funding and technical support conditions, seems to be something of a luxury – maybe because health sector decision-makers still don’t think NGOs have that much to offer.  Whatever the reason, if we’re serious about community systems, there needs to be a fundamental shift in the ways in which community actors are supported to do their work.

Hope this isn’t too negative but…

I’ve spoken to quite a few civil society and national AIDS programme people about this over the past few years.  A lot of them don’t agree.  Some say that communities / CSOs are inherently “systems”, but that some are weak and we have to help strengthen them.  I personally don’t think that it is possible to generalise, especially when talking about marginalised groups and the extent to which they are excluded from the mainstream “community”.  I also worry that this approach doesn’t do justice to the types of input and support that are needed to improve health.

Many people from civil society organisations that I speak to seem worried that a more systematic approach will destroy their creativity and flexibility; that it will compromise their independence, and their ability to work with communities to identify needs and the best ways of responding to them.  National AIDS programme people – and people from formal health sectors – worry about sending the message that the government needs help and about being seen by NGOs and international partners as wanting to control civil society action.  They also frequently express concerns about civil society organisations’ capacity to deliver effective services.  There is some legitimacy to the concerns on both sides, although it is important that they don’t just become lazy assumptions that justify inertia.  But through my recent work helping to plan national AIDS programmes, I’m starting to wonder whether the assumptions have taken control.  If we’re going to succeed, we need these walls to come down and to have more leadership and openness on all sides.

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PS – Anyone from the Global Fund reading?

What I am saying here is relevant to the ways in which the Global Fund allocates funding – in particular the requirement for countries to issue bottom-up calls for proposals, since this makes it  almost impossible to design and stick to an overall strategy for the national proposal.  Very often, the proposals that come from NGOs don’t collectively meet the epidemiological priorities of a country.  So, either the wrong projects get funded or a lot of organisations end up being turned down.

It would better serve the interests of NGOs and, more importantly, of affected communities, if countries could get funding for an overall strategic approach, and then allocate funding and technical support to the right organisations working on the right sort of projects.  Just saying.

The “prevent lesbianism” story

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Just using this post to provide links to the main coverage/articles on this story. I would encourage people to read and draw their conclusions:

 

Time magazine “A Prenatal Treatment Raises Questions of Medical Ethics

Hastings Center Bioethics Forum: “Preventing Homosexuality (and Uppity Women) in the Womb?

The Stranger “Doctor Treating Pregnant Women With Experimental Drug to Prevent Lesbianism

The Raw Story, “Doctor testing drug to ‘prevent’ lesbianism, interest in ‘male careers’

Mark Simpson

Fauxmos

Publications by Maria New and Heino Meyer-Bahlburg:

H. F. L. Meyer-BahlburgWhat Causes Low Rates of Child-Bearing in Congenital Adrenal Hyperplasia?” http://jcem.endojournals.org/cgi/content/full/84/6/1844

Meyer-Bahlburg HF, Dolezal C, Baker SW, New MI. Sexual orientation in women with classical or non-classical congenital adrenal hyperplasia as a function of degree of prenatal androgen excess. http://www.ncbi.nlm.nih.gov/pubmed/18157628

 Saroj Nimkarn  and Maria I. New  Congenital adrenal hyperplasia due to 21-hydroxylase deficiency http://www3.interscience.wiley.com/journal/123340641/abstract?CRETRY=1&SRETRY=0