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Health systems for HIV treatment and care
  1. Alan Whiteside
  1. Correspondence to Professor Alan Whiteside, Director, Heard, University of KwaZulu-Natal, Westville, Durban 4013, South Africa; whitesid{at}ukzn.ac.za

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This supplement is timely and important. The original call for papers suggested the issue would focus on topics such as: allocative and technical efficiency in drug delivery; health system studies on feasibility and outcomes of bringing treatment to scale; studies of the integration of antiretroviral therapy (ART) programmes with tuberculosis and the general healthcare systems; and the political economy of different models of ART delivery in different countries. The articles that were submitted, and make up this supplement, address these issues only to a limited extent. Importantly, they open new avenues of enquiry. It is extremely interesting to see what has emerged from the call. These papers reflect where academics believe current thinking and priorities are.

HIV has been recognised for three decades now. In the first decade of the epidemic, activities centred around understanding the disease and its aetiology, and the main interventions were focused on HIV prevention, both medical and behavioural. It is often forgotten that one of the important early successful HIV prevention strategies was the provision of safe blood, and Zimbabwe was the third country in the world to screen its blood supplies. The second decade saw the development of triple therapy and a medicalisation of the response particularly in the developed world. The third decade was a time of massive scale up of interest in and funding for HIV and AIDS.1 The amount of money available for HIV rose from $3 million in 1996, the year UNAIDS was established, up to $15.6 billion in 2008; there was a slight increase in 2009, but the level of funding fell in 2010 and the signs are that this trend has continued. The Global Fund to Fight AIDS, TB, and Malaria (GFATM) and the US Presidential Emergency Plan for AIDS Relief (PEPFAR) were established in 2002 and 2003, respectively, and both brought significant additional resources.

The challenges facing us in the fourth decade are new and considerable. They centre around resources and priorities. It is clear that the impact of the AIDS epidemic is not homogenous; the greatest burden is African and specifically Southern African. While being HIV infected is catastrophic for every individual (and family) who has the misfortune to be in this position, the nature of the challenge varies according to where in the world one is. This is well reflected in the papers of the issue, which range from Australia and the USA to China and Southern Africa.

The key question is how the response to the epidemic is addressed. As is shown by two of the papers, funding for AIDS will at best remain static and at worst possibly decline. Grépin examines efficiency considerations of donor fatigue, universal access and health systems. Bärnighausen and colleagues look at the potential change of funding from vertically to horizontally structured interventions and the effect this will have on evaluation strategies. They begin this paper with the assumption that funding will have to be better accounted for, donors will want to see more ‘bang for their bucks’ and that this will probably mean little additional funding to HIV. This is a key point for health systems and of all the papers in the supplement, it is, in my view, the most seminal.

The papers could be divided into three broad areas. The way the editors have chosen to divide them is: a description of the national and international issues; service models; and patient perspectives and experiences. There are other ways this could be done, and these are more interesting for someone who has worked on HIV and AIDS for a quarter of a century. One such way is: developed world perspectives; mobilisation of resources, what is and what should be happening; reviews of issues; and data-driven assessments. A second would be the source of the information: some papers are based on primary data collected through surveys; others are ethnographic; there are papers that claim to be systematic reviews; and finally several are thoughtful opinion pieces.

Two of the papers, written by authors in the developed world, are particularly concerned about how to respond to (relatively) small numbers of infected people. Sherer writes about the future of HIV care in the USA. Against a backdrop of steadily but slowly increasing numbers, he argues patients are having less access to care and the future of treatment is challenged. Apart from the financial problems faced by patients, there is a need for comprehensive multidisciplinary HIV care. This is especially the case since the number of age related conditions are increasing, as was reflected at the Non-Communicable Disease Summit held at the United Nations in New York in September 2011. Sherer makes a plea for a single payer system. The people falling through the cracks in the USA are those on the margins of society. The paper on the role of general practitioners in Australia is about even fewer patients, and people who are in general immensely privileged in the care they get. This paper picks up on themes across the issue. Multidisciplinary care is crucial and at the core of good HIV services is a relationship between patient and care giver (in Australia usually general practitioners) that is built up over time and is based on trust.

The issue of trust and quality of care is addressed in two papers from South Africa. The first is an ethnographic study on access to ART and experience of patients in South Africa by Fried et al. This paper shows that the major problems are poverty and the way the patients are treated in the health facilities. Cleary et al take the discussion further using data from four South African sites, two in urban areas and two in rural settings. Here, a significant number of patients report that staff did not treat them with respect; they spent considerable time waiting for services; and some felt stigmatised. The issue of stigma is critical and should be better addressed. This is something that clinicians and others working in the field of sexually transmitted infections have long experience of. Perhaps it is time for a learning across the fields: people working in the field of HIV need to learn from sexually transmitted infection experiences, and genitourinary medicine healthcare workers need to apply their experiences to HIV.

Interestingly, Cleary et al suggest that patients in rural areas have the greatest difficulty in accessing care, a finding that is mirrored in the Australian study, albeit on a totally different scale. It is not however surprising or new to learn that rural populations tend to be disadvantaged. Urbanisation is a feature of the modern world. We need to learn more about it and the effects on rural populations with regard to many services, not just those related to HIV.

Mobilisation of resources is the theme of a number of papers. Globally people often think of donors leading the way in this. However, Goldberg et al looking at indicators of political commitment in responding to HIV do not find finance to be as central as one would expect in developing countries. Economist would hope that government allocations would reflect their priorities, although authors do recognise ‘crowding-out’, where outside funding leads to a reallocation of national budgets.

This supplement highlights the challenges facing those working in HIV and AIDS. It shows how important it is to integrate the epidemic into national health services if the response is to be efficient and sustained. There are many difficulties in doing this. One major problem faced in poorer countries, dependent on international funding for the programmes, is that integrated horizontal services are not easy to evaluate as is shown by Bärnighausen et al. These interventions simply do not fit in with what donors do best: that is fund clear programmes for a defined time period. The key about building health systems is that it is a horizontal and long-term project.

Sweeney et al review the cost and efficiency of integrating HIV/AIDS services with other health services. They conclude that the limited available evidence suggests that this gives value for money and better services. It should not be surprising as this would seem like common sense. It is another argument for a move from vertical to horizontal programmes and strengthening health systems. What is concerning though is how few rigorous studies there are.

There are gaps in both the special issue and the papers that make it up. With regard to the papers, a concern is the failure to celebrate some of the successes that we have seen. A major achievement has been the development of and reduction in the prices of the drugs that treat HIV. In 1996, these drugs cost tens of thousands of dollars per patient; today, they can be delivered for <$100 per person per year. There have been great successes in providing interventions to prevent mother to child transmission. Although there are problems with the data, as was shown by Ferguson et al in their work on Kenya, the reality is that across most of the world fewer infants are being born with HIV than was the case 10 years ago. In some places, HIV-positive infants are virtually unheard of. That is not to say we cannot do better, but we should recognise what we have achieved.

Only one of the papers talks about the impact of the disease on healthcare workers. The reality is that in all sub-Saharan African countries, health workers have levels of HIV prevalence at similar levels to their professional peer groups. They are falling ill and need care but the stigma means that they have difficulties in accessing medical services. AIDS is not just a demand issue, it also has an effect on the supply side: by diverting resources, as the supplement shows, and because health workers fall ill and die.

Missing from the papers and the supplement is evidence of leadership and input from two of the major international organisations that should be prominent. These are the WHO and the World Bank. UNAIDS staff are coauthors on the important review of cost and efficiency. The WHO is lamentably absent not only in terms of authorship but also in terms of the frequency with which it is cited. The World Bank has knowledge in this area and it is unfortunate it is not being shared here.

There are some important take home lessons from this supplement. It is time to integrate HIV into health systems. This is in the long run the most efficient and cost-effective way to go and it will improve the health of everyone in a nation. There is a lack of good data and we need more rigorous evidence-based information, but these will be harder to achieve. AIDS has been recognised for 30 years, and it will take us a few more decades to deal with the disease. Health systems have been and will be around for very much longer. The challenge is to make events like HIV work for the delivery of better health for all. This supplement points to some of the ways this can be done.

Reference

Footnotes

  • Competing interests None.

  • Provenance and peer review Commissioned; internally peer reviewed.