International Journal of Drug Policy 21 (2010) 100–102
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Commentary
Improving the data to strengthen the global response to HIV among people who inject drugs Bradley Mathers ∗ , Catherine Cook, Louisa Degenhardt National Drug and Alcohol Research Centre, University of New South Wales, Sydney, NSW 2052, Australia
a r t i c l e
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Article history: Received 12 October 2009 Received in revised form 18 December 2009 Accepted 21 December 2009
Keywords: Injecting drug use Epidemiology HIV/AIDS Harm reduction Monitoring and evaluation
a b s t r a c t Recent systematic reviews have provided a global picture of injecting drug use, HIV and the global response to HIV epidemics among people who inject drugs. They have also revealed significant gaps in our knowledge, in both the problem and the response. It is clear that the prevalence of injecting drug use, and of HIV among injecting populations, varies geographically, differing hugely both within and across countries. In many cases, however, data on the number of drug injectors, and of the proportion who are living with HIV, is often unavailable or inaccurate, and gaps exist in many low income countries. The response to injecting drug use and HIV also varies hugely; both the nature and the scale of the response show marked geographic variation. The lack of quality data acts as an impediment to accurate assessments of effective and targeted responses to HIV among people who inject drugs. It is encouraging that the comprehensive suite of interventions considered “essential” by UN agencies in the response to HIV among people that inject drugs is being introduced in more countries now than ever before. Nonetheless, there remains an urgent need for more and higher quality data to be collected, in order to sufficiently inform, improve and ultimately evaluate the response. © 2009 Elsevier B.V. All rights reserved.
It is almost three decades since the signs and symptoms later identified as acquired immune deficiency syndrome were first observed among people who inject drugs (Masur et al., 1981). Since then, considerable research efforts have revealed the nature of the HIV transmission risk associated with drug injecting, and established an ever growing evidence base for interventions developed to reduce this risk (for example see Tilson, Aramrattana, & Bozzette, 2007). There have been many gains in our knowledge of harms faced by people who inject drugs and in developing a more nuanced understanding of the ways we need to respond. However, the limited availability of data continues to impede efforts to scale up national responses to HIV and drug use. How much do we know about the extent of injecting drug use and HIV around the world? The paucity of the data extends to some of the most basic information needed to target and evaluate the response. Arguably the most salient finding from a recent review of the data on the prevalence of injecting drug use (IDU) was the weakness of the data themselves. Only 61 countries had national level IDU prevalence estimates out of the 148 countries where injecting had been reported. Based on these, and extrapolating estimates to countries
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where they were not available, it was estimated that there might be 15.9 million people who inject drugs worldwide, of whom three million might be living with HIV (Mathers et al., 2008). The uncertainty surrounding the data is reflected in the substantial ranges given around these estimates. Globally there may be as many as 21.2 million or as few as 11.0 million people who inject drugs, and among them between 0.8 and 6.6 million who are living with HIV (Mathers et al., 2008). Where IDU prevalence estimates exist, the available data are often ‘gender blind’, do not include young people or those living outside major cities, may not differentiate between injectors of different drugs and often vary in their definitions of injecting drug use. This lack of disaggregation and comparability limits our understanding of who is injecting drugs and the factors that influence their risk of HIV transmission. This, in turn, limits our ability to respond effectively. At a global level, it is difficult to describe changes in the extent and nature of injecting drug use over time. Repeated attempts at estimating the size of the population are rarely made, and when they are, methodologies vary significantly, rendering data incomparable. This is despite the fact that there is good evidence that injecting populations may vary in size over time. There are indications of decreases in levels of injecting in Brazil (Inciardi et al., 2006), Australia (Day, Degenhardt, Gilmour, & Hall, 2004) and several Western European countries (European Monitoring Centre for Drugs and Drug Addiction, 2008). Increasing and/or emerging injecting drug use has been reported in the Middle East and
B. Mathers et al. / International Journal of Drug Policy 21 (2010) 100–102
some African countries (Ball, Rana, & Dehne, 1998; Cook & Kanaef, 2008; Mathers et al., 2008). Concerns about potential increases in amphetamine injection in South East Asia have been voiced (Kulsudjarit, 2004), and shifts in South Asian countries from smoking or snorting heroin to injection of buprenorphine have been documented (Kumar, 2006). A lack of data describing injecting drug use in many countries leaves us without key information necessary for shaping programmes and monitoring the impact of those in place. So why do such gaps in knowledge persist? Part of the answer certainly lies in the difficulty of the task. Injecting drug use is a criminalised and stigmatised behaviour, and people who inject drugs are commonly described as a “hidden” population. This presents challenges to those attempting to target health sector responses to injecting drug use and HIV (Hickman et al., 2002) and can make it more difficult to ensure that services are appropriate, accessible and acceptable to those they are intended to reach. While the methodologies do exist and can be implemented with comparatively little investment, research into drug use and HIV, along with the corresponding public health responses, remains a low government priority in many countries.
How much do we know about the response? Empirical evidence on the effectiveness of strategies to reduce the transmission of HIV among people who inject drugs has accumulated over the course of the epidemic. Based on this evidence United Nations organisations have endorsed a comprehensive suite of interventions considered “essential” in responding to HIV among people who inject drugs (Kroll & de Lay, 2009; World Health Organization, United Nations Office on Drugs and Crime, & Joint United Nations Programme on HIV/AIDS, 2009). These interventions include: needle and syringe programs, opioid substitution therapy and other treatment for drug dependence, HIV testing and counselling, antiretroviral therapy, prevention and treatment of sexually transmitted infections, condom distribution, prevention and treatment of TB and viral hepatitis and targeted health promotion in formation strategies for people who inject drugs. Encouragingly, an increasing number of countries are adopting such interventions (Cook & Kanaef, 2008; Mathers et al., in preparation), but data to allow an understanding of whether or not implementation is of sufficient scale and quality (i.e. is the intervention being delivered in such a way that it is likely to be both effective and protective of the human rights of its target group) remains limited. Current estimates of service coverage are limited by both the incompleteness of programmatic data collection, and by the absence of data on the size of the populations these interventions are intended to reach. It is necessary to supplement coverage data with collection of data on the quality of services, but these data have been similarly neglected. This absence of data on the ‘coverage’ of interventions is not surprising. Considerable debate and confusion around the best way to monitor and evaluate HIV prevention and care services has persisted for some time. Different approaches have been applied, and reporting requirements of donor organisations and UN processes have historically lacked harmonisation (Donoghoe, Verster, Pervilhac, & Williams, 2008). Recent guidelines proposed by WHO, UNAIDS and UNODC represent an attempt to overcome this lack of harmony, simplify the process of assessment and promote some level of conformity in measurement to allow for comparisons to be made between countries (World Health Organization et al., 2009). An important development has been the recognition and support of these guidelines by donors that provide funding for harm reduction programs, including the Global Fund to Fight AIDS, Tuberculosis and Malaria. However, uptake of these indicators in national monitor-
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ing of HIV prevention and care services for people who inject drugs has so far been slow. By mid-2009, needle and syringe programmes had been introduced in 82 countries. These represent the majority of the countries where high HIV prevalence among people who inject drugs has been reported. Levels of programme implementation vary widely within and between these countries. Data on the numbers of people using services, and the injecting equipment distributed are only available for 47 and 67 countries respectively. This, combined with the absence of IDU prevalence estimates for many countries allows national estimates of client contact coverage to be made for only 32 countries, and syringe distribution for 51 (Mathers et al., in preparation). From those countries where data are available, the extent to which needle and syringe programmes are delivered is far below levels considered necessary to be effective in preventing HIV. It was estimated that overall only 8% of people that inject drugs (range 5–12) had accessed an NSP at least once within 12 months and overall only 22 needles/syringes (range 12–42) were distributed per injector per year (Mathers et al., in preparation). Treatment for drug dependence and opioid substitution treatment (OST) in particular, is an important component of the response to HIV among people who inject drugs. OST has been introduced and scaled up in many countries, and is currently available in 70 countries. There are approximately one million people estimated to be currently in treatment across the 56 countries that reported numbers of clients (Mathers et al., in preparation). However, determining whether or not the current scale of implementation is adequate to reduce HIV among people who inject drugs is again hampered by limited data. OST programme data rarely distinguish between clients who are, or who have been, injectors and those who are not, and estimates of the number of opioid injectors are also scarce. Data for other forms of drug treatment are similarly problematic, yet critical to understanding the response in settings where injection of other drugs predominates. There are almost no data on coverage of subpopulations that may be at particular HIV risk, or for whom traditional service models may be more poorly suited: young people, women, injectors of psycho-stimulants and those who are incarcerated. Despite evidence that injecting drug use and HIV prevalence is often elevated in prison populations, few countries have replicated their community harm reduction programmes within these institutions (Cook & Kanaef, 2008; Dolan, Kite, Black, Aceijas, & Stimson, 2007). Only 10 countries have needle and syringe exchange available in any prisons and 37 countries provide OST to at least a small number of prisoners. However, our knowledge of service coverage is restricted by the lack of available estimates of the numbers they are in place to serve. Given the climate of limited resources for HIV prevention, and as a marginalised population, it may be the case that efforts to prevent and respond to epidemics among people who inject drugs have overlooked or de-prioritised data collection and research. Developing data collection systems as part of HIV programme development should be included as a crucial component of an enhanced HIV response. Without such data, it is impossible to know whether we are responding enough, in the right areas, or reaching those who need it. Looking forward, it is important that all key stakeholders, but in particular donors and governments, place due importance on the gathering of more and better quality data to inform and improve our response to injecting drug use and HIV.
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