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Why HIV/AIDS should be treated as exceptional:arguments from sub-Saharan Africa and EasternEuropeJulia Smith a b , Khaled Ahmed b & Alan Whiteside ba University of Bradford, Peace Studies, Bradford, West Yorkshire, BD7 1DP, UnitedKingdomb Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, Westville Campus, Private Bag X54001, Durban, 4000, South Africa

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Why HIV/AIDS should be treated as exceptional: arguments from sub-Saharan Africa and Eastern Europe

Julia Smith1,2, Khaled Ahmed2* and Alan Whiteside2

1University of Bradford, Peace Studies, Bradford, West Yorkshire BD7 1DP, United Kingdom 2Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, Westville Campus, Private Bag X54001, Durban 4000, South Africa*Corresponding author, e-mail: ka.ahmed7@gmail.com

The idea that HIV and AIDS gets too much attention and funding emerged in 2008 with a call to end ‘AIDS exceptionalism.’ This article outlines a short history of AIDS exceptionalism — the idea that HIV and AIDS require a response above and beyond ‘normal’ health interventions and is privileged in terms of attention and resources when compared with other diseases — and the reasons for the backlash to this idea. We argue that in some settings HIV and AIDS must be treated as exceptional. These are the hyperendemic countries of southern Africa, where HIV epidemics have shown substantial and lasting demographic and social impact, and parts of Eastern Europe where the epidemic is augmenting troubling demographic changes, such as declines in fertility rates and population growth, and impacting society in nuanced ways. Also included are resource-poor settings, mostly in Africa, where the combination of the high number of HIV infections and the cost of treatment have created issues concerning donor dependency and sustainable responses. An HIV epidemic must be seen as a long-wave event, with complex challenges to both HIV prevention and treatment responses. The article reviews the available data and literature to provide evidence for our arguments. We conclude that the perception that AIDS exceptionalism is outdated ignores the complexity of different HIV epidemics and obfuscates the challenges to effective responses.

Keywords: AIDS exceptionalism, demography, donor dependency, health interventions, health systems, hyperendemic disease, resource-poor settings

Introduction

Since 1990, the global HIV epidemic has not been homoge-nous. Its scale and impacts vary greatly. In Western Europe, North America, most of Latin America, North Africa, Asia and the Middle East, HIV infections are concentrated and stable, with low incidence and prevalence — meaning that less than 0.5% of adults are infected. In these regions the HIV epidemic is concentrated within specific population groups, such as among men who have sex with men, injection drug users (IDUs) and sex workers (UNAIDS, 2010a). In much of the world, standard public health responses have been able to contain HIV outbreaks while treating people already infected. However, the HIV epidemics of sub-Saharan Africa and parts of Eastern Europe, notably Russia and the Ukraine, are unique and require increased HIV-prevention efforts to advance the response. We argue that these HIV epidemics are indeed ‘exceptional.’

The term ‘AIDS exceptionalism’ is open to interpreta-tion. How it is perceived and what value judgements are used will vary greatly according to each individual and their experiences. We describe AIDS exceptionalism as the concept that the disease requires a response above and beyond ‘normal’ health interventions. The term normal is used loosely since the majority of health interventions are generally viewed as being important. In this article, the

argument is made for continuing to treat HIV and AIDS as exceptional in specific regions. This exceptionality thereby warrants the attention and resources that HIV and AIDS has received so far alongside other ongoing disease burdens.

We argue that in the hyperendemic countries of sub-Saharan Africa, HIV and AIDS is having lasting negative demographic and social impacts. The disease has become a generalised epidemic — with Botswana, Lesotho, Malawi, Mozambique, Namibia, South Africa, Swaziland, Zambia and Zimbabwe facing HIV prevalence levels between 11% and 24%. HIV prevention continues to be a challenge in the region, both within behavioural and costly biomedical approaches. Throughout the region, the number of people requiring HIV-related treatment and the ability of national governments to bear these costs create exceptional risks in terms of sustainability and potential issues concerning dependency and ‘international entitlement’ to ongoing foreign aid needed to maintain the current obligations to supply HIV/AIDS treatment.

In Eastern Europe, the argument for AIDS exception-alism is based on the magnitude of an HIV epidemic that was previously concentrated in a small population group (i.e. among male IDUs). The neglect of intervention strate-gies in Russia and ongoing discrimination in the Ukraine have failed to contain the epidemic. In Russia, the state continues its reluctance to rollout evidence-based HIV

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prevention for drug users, even while the epidemic contrib-utes to worsening demographic dynamics and lowering the rate of economic development.

The article begins with a short review of the debate surrounding the perceived exceptionality of HIV and AIDS. This is followed by the main argument that the concept of AIDS exceptionalism continues to be necessary in certain settings. We conclude with selected policy recommendations.

Review of the AIDS-exceptionalism debate

Mobilisation against HIV and AIDS was built on the gay rights movement of the 1970s. The HIV pandemic then led to a new style of response based on human rights and the shared responsibility of those most at risk (Gostin & Lazzarini, 1997; United Nations, 1998). HIV and AIDS attracted special attention from media, governments and scientists. The term AIDS exceptionalism was possibly first coined in a 1991 article by Ronald Bayer (see Bayer, 1991), since by the early 1990s an ‘exceptionalist alliance’ had formed: “Depending on the countries this alliance included: the gay community, liberal and left-wing parties, and large sections of the health-care and psychosocial professions” (Rosenbrock, Dubois-Arber, Moers, Pinell, Schaeffer & Setbon, 2000, p. 1610). This created a powerful and unique coalition of interests that brought HIV and AIDS into the public and political arena, enforcing its positioning as a health issue for both those directly affected and the general public.

By the mid 1990s, as it became clear that in North America and Western Europe HIV and AIDS was not as threatening as had been feared, there were calls for an end to the notion of its exceptionalism. General HIV epidemics had not materialised in the rich world; instead HIV and AIDS remained located in small, defined population groups. With the introduction of combination antiretroviral (ARV) therapy in 1996 (notwithstanding its debilitating side-effects), HIV disease developed into a chronic health condition that could be controlled via expensive drug therapy. By the end of the decade, AIDS exceptionalism in North America and Western Europe had ended (Bayer, 1999). However, HIV/AIDS became increasingly ‘globalised’ as international actors began to view development challenges in impoverished parts of the world as a humanitarian and security concern (Behrman, 2004; Barnett & Prins, 2006). The cost of providing antiretroviral treatment (ART) versus the scenario of having millions of people already infected with HIV die prematurely, opened space for mobilisation around the disease. The success of this was evident from the exponen-tial increase in funding. The amount of money available for HIV/AIDS intervention rose from US$300 million in 1996, to US$13.7 billion by 2008 (UNAIDS, 2010a).

Since then, there has been increasing debate over whether the vast international attention and funding for HIV and AIDS is warranted, what perverse impacts the HIV/AIDS response may have had on health systems so far, and how effective the responses have been. Chin (2006) said that a generalised HIV epidemic would never occur in Asia and that UNAIDS in collaboration with HIV/AIDS activists

had perpetuated certain myths about the epidemic in order to ensure funding and jobs. Epstein (2007) suggested that interventions had not been based on evidence of the drivers of the epidemic or from past experience. Pisani (2008) questioned funding priorities and warned that scientists had allowed themselves to be compromised by the money and politics surrounding the disease. All those authors argued that, in many instances, HIV/AIDS programming had been driven by ideological stances, not by evidence.

Major criticism from England (2007a, 2007b and 2008) highlighted that disease-specific funding and program-ming undermined other development initiatives — specifi-cally health-system development — and that strengthening these would have better outcomes than targeting HIV and AIDS. Shiffman, Berlan & Hafner (2009) argued that funding for strengthening health systems and reproductive health had declined during the period 1998 to 2007, while funding for HIV/AIDS-specific programmes had increased significantly. They did note that funding for other infectious diseases also increased during the same period. Contrary to these assertions, Yu, Souteyrand, Banda, Kaufman & Perriëns (2008) argued that the evidence was more mixed than concretely positive or negative, and they stressed that efforts should focus on strengthening existing synergies with primary healthcare.

Recent criticism of HIV/AIDS responses has been voiced by Bongaarts & Over (2010) who argue that funding should not be static, but rather proportional to the marginal returns of reducing the disease. They also assert that recent progress (cf. UNAIDS, 2010a) should thus engender a rebalancing of HIV/AIDS funding. Similar to England (2007a), they assert that funding for HIV/AIDS has been in excess of the actual disease burden. They highlight the cost-ineffectiveness of ART programmes with respect to other health interventions, such as fighting malaria, reducing maternal mortality, and increasing childhood immunisation. Bongaarts & Over (2010) also argue that donor funding is utilised sub-optimally, and that donors should transition towards maintaining ART funding while spending more on preventing new HIV infections (which is much more cost-effective in the long-run). The counterargu-ment by Nattrass & Gonsalves (2010) is that Bongaarts & Over (2010) have overestimated future costs (since prices are likely to decrease), underestimated the cost-effective-ness of ART (as indirect benefits are not factored in), and overlooked the cost-savings from preventing opportun-istic infections. Moreover, HIV and AIDS is represented by a global as well as strong African constituency of treatment activists to hold governments accountable in a way previously unheard of. Holmes, Thirumurphy, Padian & Goosby (2010) argued that just as the cost-savings of HIV prevention accrued in later time periods, the economic benefits of preventing AIDS deaths should also be viewed on a longer time scale. Unlike other diseases, HIV and AIDS affect primarily the economically productive groups. Hence, the ‘long-term wave’ of an HIV epidemic is rarely fully appreciated. Furthermore, contrary to the argument that funding has been disproportionate to the burden of disease, De Lay & De Cock (2007) and Stuckler, King, Robinson & McKee (2008) suggest that spending on HIV prevention and

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treating AIDS illnesses has not been over and above the funding needed.

Regions where HIV and AIDS is exceptional

We identify three locations where HIV and AIDS remain exceptional and should be treated as such: 1) hyperendemic countries, 2) resource-poor nations with significant numbers of HIV infections, and 3) some Eastern European countries.

The hyperendemic countries of southern AfricaHyperendemic countries are those with adult HIV prevalence over 10% (among those aged 15–49 years). In southern Africa, these countries are: Botswana (24% HIV prevalence), Lesotho (23.6%), Malawi (11%), Mozambique (11.5%), Namibia (13.1%), South Africa (17.8%), Swaziland (25.9%), Zambia (13.5%) and Zimbabwe (14.3%) (UNAIDS, 2010a). In these cases, the disease is exceptional because of the numbers of people infected, the ongoing challenges to HIV prevention, the consequent levels of mortality and morbidity, and the demographic and social impacts. HIV-prevention efforts have made progress, although the overall numbers of HIV-infected people remain as high as in the early 2000s, while HIV-treatment programmes present new challenges.

HIV prevalence in southern Africa rose sharply from the mid- to late 1980s and peaked in the late 1990s to early 2000s. Since then prevalence levels have generally either decreased or stabilised at high levels. The sub-Saharan Africa estimate of adult HIV prevalence given in the recent UNAIDS global report (UNAIDS, 2010a) indicates that HIV prevalence has fallen from 5.9% in 2001 to 5% in 2009; meanwhile, the absolute number of people living with HIV has increased from approximately 20.3 million in 2001 to 22.5 million in 2009. The rate of new HIV infections has also fallen (from 2.2 million in 2001, to 1.8 million in 2009), although not at the speed anticipated. HIV-infection rates display a great deal of heterogeneity across the continent, while West African countries exhibit an average HIV prevalence of 2% (Kilmarx, 2009).

Numerous factors have contributed to the spread of HIV, many stemming from a context of poverty and inequality and a history of social upheaval. Specific factors include: patterns of labour migration; the significant presence of other sexually transmitted diseases; malnutrition, which increases biological vulnerability; urbanisation and shifting cultural norms; new economic activities, creating new sexual networks; and gender inequality, with gender-based violence being significant in some high-prevalence countries (Barnett & Whiteside, 2006; Denis & Becker, 2006).

AIDS (and the opportunistic infections linked to HIV) is changing the structure of societies in hyperendemic countries. By 2015, 6 million South Africans may have succumbed to AIDS illnesses, representing 13% of the current population (UNAIDS, 2008). Bongaarts, Pettetier & Gerland (2009) presented special tabulations using data from a report by the United Nations Population Division (2009). It forecast that by the year 2030 the percentage of AIDS deaths in the age group 15–59 years will be approx-imately 70% and 90% in Botswana and South Africa,

respectively, and 20% and 30% in Uganda and Nigeria, respectively. Furthermore, by 2030, 14% of deaths in sub-Saharan Africa will be attributable to AIDS. The United Nations Population Division (2005) has estimated that in the seven worst affected countries, AIDS could reduce life expectancy by 43% between 2010 and 2015. A high rate of mortality among adults of reproductive age leaves older people unattended without caregivers and also increases dependency ratios as there are fewer people to care for young children (Kautz, Bendavid, Bhattacharya & Miller, 2010).

The HIV epidemic in southern Africa has become a force unto itself, influencing contemporary social dynamics. Young people might be delaying marriage owing to concerns about HIV infection. Evidence has been found for reduced fertility rates among women living with HIV, while households experiencing an adult’s AIDS death are at increased risk of dissolution (Hosegood, 2009). In Swaziland, there are an estimated 113 000 orphaned and vulnerable children out of a population of 442 840 children aged 14 or below (National Emergency Response Council on HIV and AIDS [NERCHA], 2007). In the absence of effective HIV treatment these numbers will grow. Orphanhood, either owing to HIV-related illnesses or otherwise, has long-term implica-tions for children’s health and education outcomes (Beegle, De Weerdt & Dercon, 2006). Areas with high HIV prevalence are correlated with slower progress through school, even for non-orphans (Fortson, 2011). Evans & Miguel (2007) highlight the negative impact of these circumstances on the acquisition of human capital; they find that parental deaths leads to lower levels of primary school attendance and that families are left to select children to whom to dedicate their scarce resources. This will impact societies in sub-Saharan Africa for generations.

HIV and AIDS has impacted on development gains and undermines efforts to meet the Millennium Development Goals (MDGs) (Poku, 2005; Barnett & Whiteside, 2006; Chopra, Lawn, Sanders, Barron, Abdool Karim, Bradshaw et al., 2009; Stuckler, Basu & McKee, 2010). It presents challenges to all development sectors and has been reversing previously made gains in African countries, partic-ularly as concerns women and children (Boutayeb, 2009; Nkomo, 2010). Hecht, Alban, Taylor, Post, Andersen & Schwarz (2006, p. 445) write:

The severe health impacts of AIDS are well documented. But HIV/AIDS also affects countries’ fundamental economic and social development performance, and exerts detrimental effects on many of the other MDGs. AIDS will make it difficult if not impossible for many countries to achieve their MDG targets.

This is partly because the majority of AIDS deaths occur within the economically active age range — those people most essential for the region’s economic and social viability. The loss of teachers, coupled with absenteeism, is an issue for the education sector (Boler & Archer, 2008). In agricul-ture, HIV and AIDS is lowering production (Gillespie & Kadiyala, 2005; Naysmith, Whiteside & Walley, 2008) and contributing to a ‘new variant famine’ in Swaziland (De Waal & Whiteside, 2003; Naysmith, De Waal & Whiteside,

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2009). Pre-existing conditions of food insecurity are being exacerbated by the presence of fewer adults to tend to farm work and other productive labour activities owing to AIDS deaths and people’s need to care for HIV-affected individ-uals. The ‘effective’ or ‘real’ dependency ratio has become larger, decimating traditional community support networks. The sale of vital agricultural equipment assets and other items to pay for healthcare and funeral costs reduces the economic assets of households. The HIV epidemic has, and will continue to have, negative impacts on economic growth (Boutayeb, 2009; Lovasz & Schipp, 2010; Nkomo, 2010; Weil, 2010). For instance, a recent estimate of the HIV epidemic’s impacts in South Africa suggests that HIV and AIDS reduces GDP growth by 1.42% per year (Thurlow, Gow & George, 2009).

The socioeconomic dynamics associated with an HIV epidemic are long-wave in nature, which, for us, makes HIV and AIDS unique. They manifest over periods of time, with several already having tangible impacts.

HIV prevention in sub-Saharan AfricaThere is still a need to strengthen HIV-prevention programmes across sub-Saharan Africa, particularly in southern Africa’s hyperendemic countries, where HIV is a major public health matter (Kapiga, Hayes & Buvé, 2010). HIV-prevention strategies for youths have not been adequately tailored towards the needs and pressures facing this group, and there remain difficul-ties in implementing interventions (Michielsen, Chersich, Luchters, De Koker, Van Rosem & Temmerman, 2010). Young women continue to be at greater risk for contracting HIV than any other group, which is fuelled in part by gender-based inequalities (Delpech & Gahagan, 2009). Since gender-based inequalities tend to be structural they are difficult to challenge (Jewkes, Dunkle, Nduna & Shai, 2010; Silverman, 2010). Intergenerational sexual relation-ships, driven by transactional sex, continue to leave young women especially vulnerable to HIV infection (Jewkes et al., 2010).

A large number of heterosexually transmitted HIV infections occur among HIV-discordant couples, where only one partner was originally infected. Dunkle, Stephenson, Karita, Chomba, Kayitenkore, Vwalika et al. (2008) report that 55–93% of heterosexually transmitted HIV infections occur in this way. The apparent safety of a stable partner, where both may be monogamous, highlights the difficul-ties of HIV prevention via ‘condomise’ campaigns where both individuals in this situation may not see the need for a condom, except to prevent pregnancy. HIV-testing centres have only relatively recently catered for couples’ testing (UNAIDS, 2010a).

Recent developments in ARV microbicides (see Abdool Karim, Abdool Karim, Frohlich, Grobler, Baxter, Mansoor et al., 2010) have been championed as protecting women (especially young women) and empowering them in situations they have poor control over (Abdool Karim, Sibeko & Baxter, 2010). Several years remain before microbicides are fully commercially available, and current research suggests that efficacy with this method peaks at 50% (Abdool Karim et al., 2010).

The World Health Organization recommends that male circumcision be incorporated into HIV-prevention strategies, as several case studies have shown it to be effective with relatively few side-effects (Hargreave, 2010; Templeton, 2010). There are concerns however about potential sexual disinhibition, where condom-use is reduced owing to the false belief that circumcision fully protects from HIV infection. The full impact on males’ sexual practices has yet to be explored (Templeton, 2010).

Evidence concerning the relationship between highly active antiretroviral therapy (HAART) and reductions in new HIV infections has been championed by international agencies as a way to both foster HIV prevention and access to treatment. Increased HAART coverage has been found to decrease viral load and reduce new infections through vertical, sexual and blood-borne HIV transmission (Cohen & Gay, 2010; Donnell, Baeten, Kiarie, Thomas, Stevens, Cohen et al., 2010; Montaner, Lima, Barrios, Yip, Wood, Kerr et al., 2010). Treatment-as-prevention is an integral component of UNAIDS Treatment 2.0 strategy (UNAIDS, 2010b). Although the indirect benefits of ART are encour-aging, the feasibility of such an approach is question-able given current progress in ART rollout. Prevention of mother-to-child HIV transmission (PMTCT) in hyperen-demic countries has been promising, with several countries reaching more than 80% coverage (UNAIDS, 2010a). Even so, there are continuing needs in terms of strengthening family planning and maternal and newborn healthcare in the sub-Saharan African region.

Resource-poor countries

The challenge of ongoing treatment and funding dependency The second rationale for considering HIV and AIDS as exceptional is the challenge of providing ongoing treatment. Here the argument for exceptionalism can be extended beyond the hyperendemic countries to include resource-poor countries with a medium burden of HIV disease (i.e. with between 3% and 9% HIV prevalence). AIDS is an expensive disease to treat, and low-income African countries face many resource constraints. This makes it unlikely that they can provide ongoing treatment for all who need it without critically impeding other important develop-ment and health goals.

In 2009, the weighted, mean price of the six most frequently used first-line ART combinations was US$137 per person per year in low-income countries. This increased to US$141 in lower-middle-income countries, and US$202 in upper-middle-income countries (World Health Organization [WHO], 2010). In 2009, the costs of the most frequently used second-line regimens for those three country-income classifications were US$853, US$1 378 and US$3 638, respectively.

Treatment provision has been scaled-up across the continent. In 2009, 3 911 000 people were receiving treatment, the vast majority in eastern and southern parts of Africa (WHO, 2010). After the revision of WHO guidelines to initiate treatment when an individual’s CD4 cell count is ≤350 cells/mm, the absolute number of

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people eligible for treatment increased. In 2009, only 37% of all adults and children eligible for ART (at this higher criterion) had access (UNAIDS, 2010a). Currently, only two African countries, Botswana and Rwanda, have achieved 80% or above ART coverage. The revision to the WHO treatment guidelines is valid and much needed; however, it does pose financial challenges considering already tight resources. It is estimated that early therapy for patients with a CD4 cell count <350 cells/mm will increase worldwide ART coverage needs from 40% to 85% of all people living with HIV, thereby increasing costs by 57% (Stover, Bollinger & Avila, 2009).

Once treatment programmes are initiated they must be maintained and medication must be taken for life. People will, after varying periods of time, need to switch to more expensive second-line treatment. Thus, questions arise as to what is sustainable and appropriate. Many African countries with mid-to-high HIV prevalence face major budgetary constraints in meeting the costs of treatment provision. Figure 1 provides an idea of the vast costs of HIV/AIDS programmes up to the year 2025: 14 of these countries have an HIV prevalence level greater than 5%; 22 have a prevalence of 2% or more. And 22 are classi-fied by the World Bank as heavily indebted poor countries (The World Bank, 2010). Because there is a growing need for countries with high disease burdens to rely on foreign donors in order to provide treatment, the role of long-term sustained international funding becomes crucial.

Reliance on foreign aid for life-prolonging treatment for a critical mass of individuals has risks. Haacker (2009) finds that countries in receipt of large external financing also maintain a vulnerable fiscal position owing to the inherent uncertainty of foreign aid. A withdrawal or reduction in aid would be akin to a large fiscal shock. Haacker (2009) continues by arguing that calculations reported in the paper on the future global need (2007–2025) will require an annual 6% increase in aid from donors, however this surpasses medium-term growth forecasts for the main donors from advanced economies (International Monetary Fund, 2011). Domestic funding will have to increase greatly if foreign funding becomes inadequate, adding pressure

on already tight resource envelopes. Yet Hecht, Stover, Bollinger, Muhib, Case & De Ferranti (2010, p. e455) note that HIV/AIDS spending in 2008 placed severe pressure on available domestic resources and that this is unlikely to abate in the near future. In their analysis of high-burden (>5% HIV prevalence) low-income countries (the selected African countries included Cameroon, Kenya, Nigeria and Uganda), they write that with continued scale-up, “HIV/AIDS spending in 2031 is estimated at 1–3% of the GDP of HBLI [high-burden low-income] countries, and 23–65% of expected health expenditures, suggesting that these countries will be dependent on outside financing for HIV/AIDS for several decades to come.” Furthermore, the chronic lack of healthcare workers across the region (Kober & Van Damme, 2006; Wadee & Khan, 2007) severely impedes efforts to improve and scale-up current efforts. In order for services to improve, these costs would also have to increase. Such programmes attempt a precar-ious balance between urgent need and the necessities of planning carefully with limited resources.

There is an additional concern about ongoing depend-ence on foreign aid. Hecht et al. (2010) highlight how this dependency creates risks for recipient countries since much of the decision-making (and thereby power and influence) remains in Geneva and Washington, D.C. (the two main bases for several prominent international health, develop-ment and HIV/AIDS agencies). This translates into a loss of full ownership over domestic health programmes and a dependence on external resources to maintain a healthy and productive society. From the perspective of the donors, continued increases in aid for HIV/AIDS treatment also highlights another problematic dependency issue. Over (2007 and 2008) describes the moral responsibility that the United States faces in maintaining the successes in increasing treatment access versus funding other global needs. Over (2008, p. 19) points out that ‘entitlement’ to US foreign aid for HIV/AIDS treatment might, in the extreme, create a “post-modern colonial relationship between the US and these countries”; he suggests that PEPFAR, for example, should limit the expansion of new entitlements (enrolling new patients) and focus more on HIV prevention.

Figure 1: Projected costs of HIV/AIDS programmes in 34 African countries, 2007–2025

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Eastern EuropeDuring the late 1990s and early 2000s, the Eastern European HIV epidemic created a stir among researchers, policymakers and public health specialists (Webster, 2003). The region was going through a transition from the Soviet system to a market economy, which caused concur-rent decreases in standards of living and state support. High levels of poverty and unemployment among young people, as well as feelings of confusion and hopelessness given the struggle to cope with the transition, fuelled drug use (Barnett, Seeley & Grellier, 2004; Hurley, 2010). In this environment of increased vulnerability and susceptibility to HIV infection, HIV prevalence rose exponentially, especially among young males (Barnett, Whiteside, Khodakevich, Kruglov & Steshenko, 2000). Barnett et al. (2000) warned of increased HIV incidence and a possible bridging of infections from IDUs to the general population.

UNAIDS (2010a) estimates there were between 1 140 000 and 1 610 000 adults and children living with HIV or AIDS in Russia and the Ukraine in 2009. The two countries account for nearly 90% of all new HIV infections in the region and have shown consistent increases in HIV incidence each year (Van de Laar, Likatavicius, Stengaard & Donoghoe, 2008). National HIV prevalence in Russia within the age group 15–49 has increased from 0.5% in 2001, to 1% in 2009 (UNAIDS, 2010a). National HIV prevalence is 1.1% in the Ukraine, while medical HIV diagnoses there have more than doubled since 2001 (UNAIDS, 2010a).

The epidemic in Eastern Europe is generally concen-trated within the IDU population, their sex partners, and sex workers (UNAIDS, 2010a). The main mode of HIV transmis-sion has changed from exposure to contaminated injections to heterosexual contact (European Centre for Disease Control and Prevention [ECDC], 2010) owing to the interplay between IDU (mostly males) and the sex work industry (UNAIDS, 2010a). Data from ECDC (2010) indicate that this switch occurred in mid-2007, where the number of hetero-sexually acquired HIV infections overtook HIV incidence in the IDU population. Heterosexual intercourse now accounts for 46% of new HIV infections and has increased by 128% since 2004 (ECDC, 2010). Contaminated injecting equipment nonetheless continues to be a significant driver of the epidemic in the region (Delpech & Gahagan, 2009), accounting for about 39% of new HIV infections (ECDC, 2010). With an increase in HIV infections among women, the risk of vertical transmission also increases. Thus, in the Russian Federation and Ukraine, in 2005, 16 000 infants were born to HIV-positive mothers; in 2006, 7% of HIV-positive mothers transmitted the virus to their babies (Burruano & Kruglov, 2009).

What is striking is the relative size of the IDU population in each country, and their associated level of HIV prevalence, even when compared to other countries with similar IDU populations. Table 1 lists countries with IDU subpopulations ≥1% of the national population. Russia and the Ukraine each display high (mid-level) estimates of the numbers of IDUs (1.78% and 1% of the total populations, respectively), with significantly high HIV prevalence among IDUs (37.15% and 41.8% of the total populations, respectively). In the study by Kissin, Zapata, Yorick, Vinogradova, Volkova,

Cherkassova et al. (2007), 86% of the participants currently sharing needles were infected with HIV.

Missed opportunities to contain the HIV epidemic in Eastern EuropeAs the HIV epidemic in Eastern Europe is largely concen-trated within a specific population group, there is the potential for a focused and sustained HIV-prevention response to reverse the infection rates. Mathers, Degenhardt, Phillips, Wiessing, Hickman, Strathdee et al. (2008, p. 1745) write: “There is a clear mandate to invest in HIV-prevention activities such as needle and syringe programmes and opioid substitution treatment and to provide treatment and care for those who are living with HIV/AIDS.” Yet this is not happening.

Needle exchange, safer injection sites and other harm-reduction strategies have been proven to work in other contexts (see Kerr, Small, Buchner, Zhang, Kathy, Montaner & Wood, 2010; Vlahov, Robertson & Strathdee, 2010), though only 10% of IDUs in Eastern Europe have access to a syringe-exchange programme (Mathers, Degenhardt, Ali, Wiessing, Hickman, Mattick et al., 2010). The latent response to HIV prevention for IDUs and the continued neglect from the Russian government has exacerbated the HIV epidemic. HIV infections have switched from being predominantly a phenomenon among male IDUs, which could have been contained, to being predominantly hetero-sexually transmitted.

Hence, this ‘lost opportunity’ has made the HIV epidemic in Eastern Europe unique and deserving of an exceptional response. Evidence of a ‘bridging’ of HIV infections between demographic groups and accordingly a change in the major mode of transmission was highlighted by Burchell, Calzavara, Orekhovsky & Ladnaya (2008). Furthermore, Ancker (2008) writes that cases of HIV contracted through heterosexual transmission outnumbered those transmitted through IDUs in 43 of 89 regions in Russia.

Social and political barriers impede the potential for effective HIV-prevention programmes. In Russia, the greatest barrier towards the full-scale implementation of harm-reduction programmes is the government. Rhodes, Sarang, Vickerman & Hickman (2010) argue that govern-ment resistance to evidence-based HIV-prevention methods is a contributing factor to the continued spread of HIV. Studies on syringe exchange programmes in Russia have found that they dramatically reduce the sharing of needles among IDUs; additionally there is evidence to suggest that IDUs with access to syringe exchange programmes report more frequent condom use (Rhodes, Sarang, Bobrik, Bobkov & Platt, 2004).

Despite the available evidence, at the Eastern Europe and Central Asia AIDS Conference in Moscow in 2009, Russia’s Chief Public Health Officer declared that the govern-ment was ‘emphatically against’ the use of drug-replace-ment therapy (International AIDS Society, 2009). Rhodes et al. (2010) quotes from a meeting held between high powers in the Russian government (i.e. president, prime minister, health minister, and director of the Federal Drug Control Service); it highlighted the government’s policy against substitution therapy and the perception that

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introducing harm-reduction strategies stimulates social tolerance for drug addicts. Methadone clinics are legally restricted because it violates Russia’s national criminal code (Rhodes et al., 2010) and there is no state funding for needle-exchange programmes. Though not illegal, such programmes are thought of as promoting drug use. The efforts of NGOs to implement such programmes have been truncated owing to resistance from officials (Barnett et al., 2004), and syringe programmes do not reach the majority of IDUs and lack institutional support (Rhodes et al., 2004; Rhodes et al., 2010).

Resistance by the Russian government has a deeper social context. It is not the evidence that is questioned. For example, the available evidence indicates that “increasing the coverage of opioid substitution treatment from 0% to 10%, 25%, or 50% could decrease [HIV] incidence by 21% (90% confidence interval [CI]: 14–34), 34% (CI: 23–51), or 55% (CI: 40–71), respectively” (Rhodes et al., 2010). Other factors constraining harm-reduction strategies for IDUs are a lack of information on the effectiveness of such strategies, percep-tions that they will be culturally unacceptable, the reluctance of IDUs to use the services owing to fear of persecution, and the influence of the Russian church (Tkatchenko-Schmidt, Renton, Gevorgyan, Davydenko & Atun, 2008).

In recent years, the Ukrainian government has taken a less conservative stance. The state funds opioid substitution therapy and recognises the importance of HIV prevention among criminalised groups. The country has taken signif-icant steps in protecting drug users from HIV (UNAIDS, 2010a) and has worked alongside the International HIV/AIDS Alliance, an NGO with a presence in the Ukraine, who advocate for marginalised groups. But problems continue to arise between government policy and the lived reality: the police have been known to harass doctors and clinics for ‘drug dealing’ and drug users continue to be stigmatised (Hurley, 2010). The effectiveness of clinic-run HIV-prevention projects has been impeded because of a fear of accessing services among the intended targets (drug users and sex workers, who are both perceived as criminal groups) and because of the clinic costs incurred by the clients.

Ideologically driven responses to the HIV epidemic in Eastern Europe, especially in Russia, create a perverse situation where funding for HIV prevention is available but the relevant political will is not. The result is an exceptional HIV epidemic that is preventable.

HIV prevention in Eastern EuropeThe speed of HIV transmission is unlikely to abate given inadequate harm-reduction and HIV-prevention tools for IDUs (Delpech & Gahagan, 2009). Social condemnation and ongoing discrimination is likely to continue to drive young drug users underground (Merkinaite, Grund & Frimpong, 2010), thereby making it more difficult for outreach programmes to reach the most vulnerable. To respond effectively to the injecting-drug-centred HIV epidemic in Eastern Europe, Merkinaite et al. (2010, p. 112) suggest a need to “develop a clear understanding of young peoples’ drug-taking, risk and protective behaviours, the motives, values and beliefs that may drive their drug use, as well as their concerns, aspirations and expectations of society and its institutions.” Harm-reduction strategies can possibly be adapted to religious and social contexts. Any long-term HIV-prevention strategy will need to address the structural social and economic impoverishment that drives drug use.

Alongside IDUs, women and youths are at increased risk of HIV. The proportion of women living with HIV among newly registered cases of HIV rose from 13% in 1995, to 44% in 2006; and in the Ukraine it rose from 37.2% to 41.9% (Burruano & Kruglov, 2009). There are well-established linkages between drug use and the sex work industry: at least 30% of sex workers surveyed in Russia reported having ever injected drugs (UNAIDS, 2008). The annual number of new HIV infections in Russia has declined from its peak in 2001 (UNAIDS, 2008). Youths continue to be a vulnerable group, however, yet are neglected in HIV-prevention programmes (Merkinaite et al., 2010). There are clear links between drug use and exchanging sex for money, shelter, drugs, food and other goods. In a study of HIV seroprevalence among street youths aged 15–19 in St Petersburg, over one-third (37%)

Table 1: Extent of injection drug use/users (IDU/IDUs) and estimated HIV prevalence

Countries with IDUs totalling >1% of the total population

Mid-level estimate of IDU prevalence among 15–64-year-olds

(%)

Mid-level estimate of the numbers of IDUs

Mid-level estimate of HIV prevalence among IDUs (%)

Azerbaijan 5.21 300 000 13Georgia 4.19 127 833 1.63Mauritius 2.07 17 500 Insufficient dataRussia 1.78 1 825 000 37.15Estonia 1.51 13 801 72.1Malaysia 1.33 205 000 10.3Puerto Rico 1.15 29 130 12.9Australia 1.09 149 591 1.5Ukraine 1.0 375 000 41.8Canada 1.0 286 987 13.4Kazakhstan 0.96 100 000 9.2South Africa 0.87 262 975 12.4Data adapted from Mathers et al. (2008): the authors used a mix of data sources (peer-reviewed research articles, United Nations data sets, etc.) to create estimates which were then independently reviewed.

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were HIV-infected (Kissin et al., 2007). Ukrainian youths living or working on the street are similarly at greater risk of HIV. Harm-reduction and HIV-prevention initiatives have tended to respond to ‘older’ injection drug users; few tend to target young people’s recreational use (Merkinaite et al., 2010). Meanwhile, stigmatisation from society and harass-ment from police problematise HIV-intervention programmes (Busza, Balakireva, Teltschik, Bondar, Sereda, Meynell & Sakovych, 2010).

The demographic impacts of HIV in Eastern EuropeIn the absence of access to HIV treatment and care, AIDS mortality has increased. The number of persons diagnosed in 2006 with AIDS (not HIV infections) went up by 54% compared to the previous year, and the number of deaths from AIDS rose by 39%. The number of AIDS deaths in Russia in the first five months of 2007 exceeded the annual total for 2006 (Feshbach, 2008).

In Eastern Europe, HIV and AIDS exacerbates an already troubling demographic situation, with a low total fertility rate and declining population. Eastern Europe is experiencing a negative population growth rate (–0.2% in 2010) (Population Reference Bureau, 2010). The majority of countries that will see the largest population declines in 2050 will be in Eastern Europe, with the Ukraine seeing –28% contraction, and Russia –22% (Population Reference Bureau, 2008). Emigration will cease to be the leading cause of popula-tion decline in the near future. High adult mortality as well as falling total fertility rates are driving the decline (Menon, Ozaltin, Poniakina, Frogner & Oliynyk, 2009). From 1987 to 1999, Russia saw a 50% drop in births, and by 2015 it is estimated that there will be just four workers for every three non-workers, with most of the non-working-age population being elderly (Menon et al., 2009).

HIV and AIDS contribute to these demographics by increasing premature mortality among those of reproductive ages. A projection by the World Bank (2006, p. ix) for the Ukraine suggests that by 2014 the share of AIDS deaths will be 4.8%, 7.9%, or 8.6% under an optimistic, medium, or pessimistic scenario. HIV and AIDS will be responsible for over one-third (41%) of deaths within the age group 15–49, with 60% of deaths in this age group being females (Figure 2), and there will be 300 000–500 000 fewer people because of AIDS (The World Bank, 2006).

Ancker (2008) summarises several studies modelling the demographic impact of AIDS in Russia. A study by Eberstadt (2002) forecasts that Russia’s working-age population could decline by 3–11 million by 2025. A study for the United Nations Development Programme (Barnett et al., 2004) projects that Russia’s population could shrink by an additional 20 million people by 2045 as a result of AIDS mortality. While such projections are likely to change as new data emerges, the reality is that Russia and the Ukraine have significant IDU populations, high HIV prevalence in this group, and declining general populations.

It is predicted that these demographic changes will affect economic development. For example, AIDS deaths currently result in an additional 1–2% contraction in the Ukrainian labour force (The World Bank, 2006). Declines in the workforce result in fewer contributions to health and social

insurance funds by individuals and by the state. A United Nations report warns: “In some regions of Russia, especially in oil and gas producing regions, drug use is acquiring the status of a mass phenomenon” (United Nations Population Division, 2005, p. 27). In the context of high HIV prevalence among IDUs, this ‘phenomenon’ may greatly impact industry. Sharp (2002) used a sector-based macroeconomic model to show how Russia’s extractive industries could be highly vulnerable to HIV and AIDS owing to productivity losses caused by illness, absenteeism and death. Like the mining industries in South Africa, Russian companies are developing HIV-prevention and mitigation programmes to avert this.

Conclusions

There are HIV epidemics that should continue to be regarded as exceptional. Sub-Saharan Africa and Eastern Europe are distinctly unique, but they do share some common characteristics. We briefly summarise the demographic impacts and treatment challenges that motivate the case for an exceptional response to HIV and AIDS, and offer policy recommendations.

In hyperendemic countries the sheer scale of the HIV epidemic and its impacts make HIV and AIDS exceptional. It is causing high rates of mortality and morbidity among reproductive adults, leaving greater numbers of the young and old to care for themselves in a context of increasing vulnerability and poverty. The demographic impact of the HIV epidemic is crippling communities. HIV infections in sub-Saharan Africa appear to have reached a plateau. To prevent a generation lost to HIV-related illnesses, current efforts to provide treatment need to be expanded.

The cost of ART makes it difficult for countries with high HIV prevalence but limited health financing to fund their own HIV-treatment programmes within existing resource envelopes. Ongoing bottlenecks in supplies pose further challenges to scaling-up treatment. Furthermore, there are concerns about the long-term sustainability of this aid, of the ability of donors to increase funding, and the possibility of inconsistent aid leading to drug resistance and increased mortality. An argument in favour of not increasing funding for HIV and AIDS has been already been put forward.

In Eastern Europe the case for AIDS exceptionalism is attributed to the concentration of the epidemic within specific high-risk population groups. The fear that HIV and AIDS would reach wider society has been realised in Russia and the Ukraine. The HIV epidemic grew during a period of rapid economic, social and political transition and is located primarily among youths. It is expected to contribute to a troubling population decline which is expected to have major impacts on economic activity. To date, political will has been either lacking or insufficient to address this alarming trend.

HIV-prevention efforts in hyperendemic regions have seen progress, especially in medical-based interventions, although bottlenecks have impeded further progress. Structural issues, particularly with respect to tackling gender inequalities, continue to be a barrier. There is a need to tackle the structural drivers of the HIV epidemic — by addressing the criss-crossing and interlinked contributors to

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it — especially gender-based inequities, poverty dynamics, stigma, discrimination, the criminalisation of sex workers, and treatment access (Delpech & Gahagan, 2009). Introducing substitution therapy for drug users in Eastern Europe requires ongoing dialogue with governments that to date have been reluctant to introduce such policies and undertake efforts to bring about meaningful change. HIV prevention will require state-level support and understanding of the socio-historical context driving drug use.

Policy recommendationsThe Russian government’s conservative stance on harm-reduction therapy and needle-exchange programmes has blocked access to strategies that could reduce the incidence of injection drug use (IDU) and new HIV infections. We propose that greater engagement with public health actors in Russia, by local and internationally based civil society organisations, as well as with interna-tional agencies, can open dialogue for change. Evidence-based HIV/AIDS-intervention programmes that highlight the cost-effectiveness of acting now rather than later are likely to be more successful than scolding the government.

Continued focus on the Millennium Development Goals in sub-Saharan Africa will make some progress in mitigating the social, educational and health-related impacts of HIV and AIDS. The long-term challenge will be to increase the availability of domestic funds for HIV and AIDS treatment. This should be a central focus not just for HIV and AIDS, but for overall health.

In the absence of an HIV vaccine or more-affordable treatment, the demographic, social, economic and political consequences of HIV and AIDS will have a formidable hold in some regions and countries (where this hasn’t already occurred). Development gains of the 20th century will be eroded and targets for the Millennium Development Goals will be missed. This picture of the HIV/AIDS landscape is not new, but it is being viewed less directly — the response therefore has to be reinvigorated. The idea that ‘AIDS exceptionalism’ is outdated ignores the complexity of different HIV epidemics and obfuscates the challenges to

responding effectively. Exceptional epidemics continue to require exceptional responses.

Acknowledgements — Some of the ideas discussed in this article came about from work carried out by Alan Whiteside on behalf of the ‘aids2031’ consortium. The authors contributed equally to the current work.

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