Stigmatisation of HIV and drug use
Injecting drug users using HIV/AIDS services frequently reported that stigmatisation of people living with HIV and people engaged in drug use was an important barrier to using government HIV testing, treatment and OST services, and NGO preventative services in both Ukraine and Kyrgyzstan. Clients commonly reported that they were afraid to reveal their HIV-positive status, fearing a backlash from families/communities. Several clients in both countries described how they travelled substantial distances to use general clinics rather than nearby specialist government HIV/AIDS services, so as to protect their anonymity. They commented graphically on the ways stigmatisation by members of their communities and also their families, or fear of being stigmatised, had inhibited them from approaching HIV/AIDS services in the past. For example Ukrainian clients using a range of different NGO and government-run services experienced: '... fear of HIV status being made known and violation of confidentiality...', '... hostile attitude of the community...' and '... shame...' which reproduced a feeling of hopelessness: '... unwillingness to address drug use or change anything in my life'. A Ukrainian client using an NGO prevention service explained:
Once they find out that you are HIV-positive, they chase you away; they can even fire you from a job...If you are HIV infected, they consider you to be a leper, but the disease is not transmitted through social interaction, only through blood and sexually. But people are frightened. If you say that you have HIV, none will even talk to you. They will shun you and point fingers at you...I did not tell my family that I am sick.
The stigmatisation of drug use constituted a significant barrier to accessing NGO and government-run drugs services. For example, Kyrgyz clients indicated that many IDUs did not take up services from outreach workers in case these would reveal their drug dependence. A Kyrgyz client explained: 'If an outreach worker visits homes, a drug user hides his dependence from relatives and neighbours, he just refuses services of outreach workers'. Stigmatisation was often sufficient to deter clients from being seen in the vicinity of narcology centres because it would be assumed by an observer that such a person was a drug user. The views of government and nongovernmental stakeholders and service providers accorded with those of clients. For example, a Kyrgyz government service provider working at a Narcology Centre explained:
...if a person comes to a Narcology dispensary, they register him/her and this will stigmatize them for their whole life. The city is small and this information is of course confidential. However, if a person was just seen in the territory of the Narcology dispensary, people conclude that he/she has a problem; he/she is addicted or has some deviancy.
A Kyrgyz NGO drugs service manager suggested that while IDUs were encouraged to take HIV tests many were reluctant, fearing they would be identified as HIV positive, and that parents often prevented their children who they knew to be injecting drugs from seeking HIV testing: '...families want to hide their problems from society...'. The interviewee suggested that some people who had received a HIV positive test result had paid service providers to supply a negative result certificate. Kyrgyz clients, service providers and stakeholders explained that while intolerance of HIV/AIDS was widespread, younger people were increasingly open and knowledgeable about HIV/AIDS, drugs and sexual practices. Ukrainian stakeholders also pointed to regional and sociocultural variations in attitudes to HIV/AIDS and sexual practices, suggesting that Orthodox and Catholic Christianity, which was strong in L'viv and other parts of western Ukraine, acted as a substantial disincentive to people seeking HIV testing for fear of community sanctions.
High levels of stigma have also been reported elsewhere. A Centre for Support for Women study [64] noted very negative attitudes to HIV/AIDS, CSWs, IDUs and MSM in Kyrgyzstan, although younger people were more tolerant than older people. The Ministry of Health of Ukraine [65] reported high levels of intolerance towards PLWHA, including among people aged 15-24 years. Our findings were consistent with these studies and revealed the negative consequences for delivering both government and NGO-run HIV/AIDS services for IDUs in both countries.
Criminalisation of drug use
Ukrainian and Kyrgyz clients, stakeholders at national and sub-national levels and NGO and government service providers widely agreed that the criminalisation of drug use and police practices relating to the implementation of drugs laws were substantial access barriers to HIV/AIDS services. Providers and clients in both countries indicated that criminalisation posed a particular problem for NGO-run harm reduction programmes, especially needle/syringe exchange services, since small traces of drugs in used syringes constitute illegal 'storage', although the problem was also reported as common for clients carrying used injecting equipment who approached and used government-run OST services and AIDS Centres.
In both countries clients, stakeholders and NGO and government service providers reported that police officers commonly arrested drug service clients, confiscated drugs and extracted bribes for possession. For clients of needle/syringe exchange services this constituted a major disincentive to using these services, resulting in sporadic rather than regular use and acted as a particular disincentive to returning used injecting equipment. Given the possibility of being criminalised for being in possession of used syringes, this was an understandable practice. Illustrating this widely reported problem a Kyrgyz client commented: '...it's risky to walk in the city with syringes...'. Although return of used equipment clearly represents best practice, many programmes concentrated on distribution rather than exchange because non-return of used equipment did not impact negatively on the performance figures required by the Global Fund, which did not use this as a performance indicator.
Service providers in both countries reported that the militia (police) also regularly apprehended outreach workers, many of whom were former drug users known to the authorities. An NGO needle/syringe exchange worker in Ukraine explained that outreach workers did not visit places according to a set pattern, to avoid militia harassment, but this made it difficult for clients to know where to access their services. Service providers, stakeholders and clients also reported that police often detained IDUs using OST services when they entered or left government premises, although the frequency had reduced. A Kyrgyz client of an NGO drugs service explained that the militia regularly examined his arms to check whether he had injected recently and if so demanded bribes. He sometimes travelled to the service by taxi, at considerable expense, to avoid being stopped. Clients of substitution therapy services were required to carry a certificate stating that their methadone had been supplied legally; however, often people did not have this documentation. Several Kyrgyz clients using a range of NGO and government services commented on these problems: 'We are sick and tired of police...they pick people, [take them] to detention centres without a hearing, they beat, accuse... murder...'; '...they "plant" heroin, accuse you of a crime. I was arrested last year...'; '...they start beating at once and force you into the car...'; '...there is an example when heroin was planted to one of the guys, and he was on methadone; finally he was imprisoned'.
IDUs using different government and NGO-run HIV/AIDS services indicated that they had developed ways to reduce the chance of being harassed or arrested by the militia. A client using an AIDS Centre in Kyrgyzstan explained: '...a whistler is settled in the drop-in centre, he whistles [when he sees] police men...and nobody will visit this centre'.
Some HIV/AIDS control activities financed by the Global Fund and other donors in Ukraine and Kyrgyzstan aimed to address the problems stemming from the criminalisation of drugs use both at national and local levels. NGO advocacy programmes in both countries had fostered some changes in the implementation of drugs laws in many parts of the country: new guidelines had been introduced on how militia should deal with IDUs, and programmes were launched to inform clients about their legal rights. In an attempt to promote greater understanding and tolerance, a Kyrgyz NGO provided information for clinical staff, militia and policymakers including seminars on drugs, harm reduction and HIV/AIDS with the aim of promoting greater understanding and tolerance among service providers. Furthermore, stakeholders and service providers in both countries collected data from sex workers and disseminated their findings at police forums. The challenge, however, was persuading the Ministry of Interior which, as one Kyrgyz service provider noted, 'does not recognise the existence of the problem'.
Previous studies have suggested that stigmatisation of vulnerable groups and the criminalisation of drug use in the region exacerbated risky behaviour and increased vulnerability to police human rights abuses [4, 5, 54, 66]. A 2006 study in Ukraine, for example, revealed wide scale extortion of bribes, planting of drugs, and in some cases torture or rape of detainees and other human rights violations [54]. While recent legislative reform in Ukraine and Kyrgyzstan sought to protect these groups, in practice our findings suggest that criminalisation of drug use and police harassment remained substantial barriers to accessing essential HIV/AIDS services in 2007 and 2008, especially harm deduction services delivered by NGOs to IDU clients.
Discriminatory practices among service providers
The study revealed discriminatory practices among HIV/AIDS service providers-especially government services-to be an important barrier to their use. Ukrainian and Kyrgyz clients indicated that government staff were often less tolerant than those of nongovernmental staff, a finding also noted by a civil society perspective report from the Open Society Institute [5]. IDU interviewees suggested that discriminatory practices of government staff of different types of HIV/AIDS services included unsympathetic attitudes to them and other vulnerable groups, the withholding of services and the demanding of informal charges. A low level of commitment and willingness to work with vulnerable populations among staff of public healthcare providers was widely perceived by clients in Ukraine and Kyrgyzstan. Many said they were circumspect about using government HIV/AIDS services, fearing they would be identified to the authorities or treated with hostility by staff they described as rude, distant and lacking understanding.
Indeed, HIV-positive clients suggested this was indicative of experiences when using general state-run healthcare services. Some had been refused hospitalisation or, having learnt that they were HIV-positive, were discharged by health workers. Potential service users avoided approaching general medical services because they were usually required to show documents including medical cards stamped to show they were HIV-positive, and there was no guarantee of confidentiality. A Ukrainian client said: 'I am scared to go to a hospital, probably, someone would recognize me, here [at this HIV/AIDS service] nobody knows me; I come here'. In Kyrgyzstan diversity of ethnic/language groups in some areas exacerbated the difficulties clients experienced in developing effective relationships with government staff. For example a stakeholder reported that in Jalalabad in southern Kyrgyzstan-a region that has a complex ethnic/linguistic mix of Kyrgyz, Russian, Uzbek and Kazakh speakers-government service providers were often unable to communicate with clients.
Clients commented that the acceptability of different NGO and government-run HIV/AIDS services could depend upon staff attitudes. NGOs were seen as being more accessible than government services in this respect. For example a Kyrgyz service provider suggested: '...first impression is very important for drug users; there should be such qualities as patience, tolerance'. Similarly Ukrainian clients said: 'Nongovernmental organisations are more tolerant...more flexible and are not bound by various norms' and: 'Here I feel safer than anywhere else...I do not feel any negative attitudes or prejudices against me. I was never refused help here'.
A Ukrainian NGO drugs worker explained that client numbers increased as trust was built over time and people became more aware of HIV/AIDS services that were tolerant. The interviewee knew most clients by name and emphasized the importance of talking to clients so as to learn where drugs were being sold, enabling the service to more effectively target interventions. Ukrainian and Kyrgyz clients said they valued the absence of bureaucracy in accessing different NGO services. A Ukrainian client described an '...informal and confiding atmosphere' and the way staff were attentive, sympathetic and non-discriminating. The maintenance of confidentiality was important since most IDUs tried to conceal their drug dependence. If users believed that an NGO or government-run HIV/AIDS would not respect their confidentiality, then they would be unlikely to return. Illustrating this point a Kyrgyz client said: 'I don't want to see this outreach worker again, and will never go there again. Why did she tell my mom that I take syringes?'.
Global Fund-supported Ukrainian and Kyrgyz NGO services targeting IDUs commonly recruited former IDUs as staff or volunteers, including former clients who were seen as having good knowledge of current clients' perspectives, thereby enabling them to build trust and provide move effective interventions. Ukrainian and Kyrgyz clients said they valued this 'peer-to-peer' principle. For example, a former client and volunteer in Ukraine explained: '...as a former injecting drug user and being HIV positive, with a wife and children, I don't want someone else to suffer...'. A Kyrgyz NGO manager said: '...their work is based on the "peer to peer" principle. So, these people know the problem from inside and it is easier for them to work, they understand more, deeper, better and they have more trust of the clients.
Nevertheless problems were reported: a high rate of staff turnover among NGO harm reduction outreach-workers existed, with many leaving after receiving training and experience for better paid or more secure positions. Some former IDUs had reverted to drug use through coming into regular contact with current users. NGO service providers in both countries reported that the problems of staff retention were also exacerbated by the uncertainties inherent in receiving regular tranches of Global Fund grants (discussed below).
Information and client knowledge of HIV/AIDS and HIV/AIDS services
Our study found that Ukrainian and Kyrgyz clients' access to HIV/AIDS government and NGO-run services was affected by their limited knowledge of risk factors, what HIV/AIDS services were available, and the eligibility criteria for accessing the available services. In Kyrgyzstan in particular the fact that it was possible to be tested for HIV/AIDS anonymously and free of charge was not widely known by potential clients. Kyrgyz stakeholders indicated that the level of knowledge about HIV/AIDS among the general population, particularly in rural areas, remained low.
Despite the introduction of information/educational programmes that had been supported by Global Fund HIV/AIDS programmes and other donors in Ukraine and Kyrgyzstan, clients, service providers and stakeholders agreed that many people remained unaware of the ways in which HIV was transmitted. In both countries Global Fund and other donor grants had been used to support some mass media health promotion, leaflets and other materials produced and distributed by sub-recipients, posters displayed in public spaces, and HIV/AIDS awareness lessons in some schools. In Ukraine during the 1990s media reporting of HIV/AIDS had the effect of instilling fear in society rather than providing informative commentary [5] Interviewees' accounts suggested that little had changed. One Ukrainian client said:
... TV spots talk about danger, rather than about prevention; hence people start reacting to HIV with fear, and the whole situation is further aggravated. These spots should be modified somehow. Yes, this disease is frightening...[but] we need more explanatory information, and this information should be shared in a different manner.
Similar problems were noted as part of the Kyrgyz Global Fund programme. A manager of a Kyrgyz NGO commented:
The policy of prevention using fear was not right...We cultivated stigma ourselves, inspired fear...One ought to...use all resources, starting with mass media, so that people know about ways of transmission.
Kyrgyz clients, service providers and stakeholders were critical of Global Fund-supported HIV/AIDS information programmes. A Kyrgyz stakeholder, for example, explained that social marketing for HIV/AIDS was ineffective since messages lacked cultural sensitivity outside the capital Bishkek. Often leaflets were too long, they used overly professional language, and films and posters depicted modern lifestyles and dress codes that challenged conservative views: '...some information videos are not acceptable for our population, they show naked bodies-too explicit...'. Hence, materials failed to reach and effectively engage marginalized groups. Another Kyrgyz stakeholder reported that providing women with information on HIV/AIDS-related issues in rural Kyrgyz communities was particularly problematic.
Clients, service providers and stakeholders suggested that peer education and referrals were important means by which communities improved their knowledge of HIV/AIDS and government and NGO HIV/AIDS services: most Ukrainian and Kyrgyz clients said that they had learned about services they were using from their peers. Kyrgyz clients using drugs services emphasised the importance of networks of drug users in delivering messages to communities. In both countries many government and NGO providers promoted peer education and referrals as ways of extending coverage. Ukrainian clients indicated that their knowledge of HIV/AIDS had improved substantially since using different NGO harm reduction services.
Commodities and human resources
Our study suggests that shortages of medicines, commodities (including needles/syringes) and equipment (including laboratory equipment), and low quality and inappropriate commodities, were important barriers to clients receiving both government and NGO-run HIV/AIDS services. The majority of stakeholders and government and NGO service providers suggested that, while Global Fund support had allowed services to expand significantly, shortages of commodities remained a critical barrier to delivery, with reports of NGOs in Ukraine having to borrow equipment to maintain coverage. In Kyrgyzstan, clients and some stakeholders criticised the inappropriateness of some supplies procured as part of the Global Fund programme, such as the size and bore of needles and syringes supplied to service providers, which did not correspond to clients' needs (for example 2 ml syringes were preferred, whereas 10 ml syringes were generally supplied). This reduced client demand for these commodities.
Discriminatory practices and limited transparency among services impacted on access to commodities among clients. In addition to the loss of Global Fund-financed needles and syringes intended for free distribution through sale in markets, Ukrainian and Kyrgyz stakeholders also acknowledged that some government and nongovernmental organisations employed corrupt working practices, such as inaccurate record-keeping, to conceal poor levels of performance and misuse of commodities and other resources. They described an institutionalized lack of transparency among some government and NGO service providers in both countries, and underdeveloped monitoring and evaluation systems. Indeed, the monitoring and evaluation system employed by the Kyrgyz Global Fund Principal Implementing Unit (PIU) had limited means to verify activity levels reported by sub-recipients. There were infrequent or absent spot checks by PIU staff to check records, and limited ad hoc observations and client interviews. Stakeholders suggested that corruption was less widespread among Ukrainian HIV/AIDS services, although the practice of government health staff selling drugs such as painkillers and other supplies to drug dealers leading to shortages was still practiced.
A high proportion of Ukrainian clients perceived staff shortages as an important barrier to receiving both government and NGO HIV/AIDS services, and stakeholders in both countries indicated that low government salaries resulted in low levels of motivation, and exacerbated problems of staff retention, including international and rural-urban labour migration. Previous studies have also reported acute health worker shortages in Central Asia due to international labour migration [4]. In both countries, the Global Fund HIV/AIDS grant funded only NGOs to recruit new staff, since appointing new government staff would be considered a recurrent cost. Ukrainian stakeholders reported that some government staff had established NGOs to apply for Global Fund and other donor grants, enabling individuals to supplement their salaries.
Quantitative data collected as part of this study showed that while staff numbers among NGO HIV/AIDS services had risen, they had remained static among government services [13–16]. Stakeholders and government service providers pointed to limited financial incentives for government HIV/AIDS staff, whereas international organisations and NGOs typically paid higher salaries. In Ukraine some government health workers received supplements (including health insurance) from local government budgets. Kyrgyz government AIDS Centre staff received modest government funded salary supplements; other workers, including laboratory technicians working with blood samples, did not receive supplements.
Kyrgyz NGO service providers reported that Global Fund funding interruptions were frequently experienced by their organisations, that the problem was getting increasingly common, and that this had disrupted service delivery. In many cases this was caused by difficulties submitting quarterly monitoring reports by NGO sub-recipients on time. Most NGOs delivering needle/syringe exchange services did not stop work when financing breaks occurred, and relied on unpaid volunteers to provide services. A number of NGOs continued to distribute syringes using their own channels, violating rules in doing so. However, long interruptions in 2007-2008 forced several organisations to suspend activities, and breaks in payment of salaries forced many NGO staff to seek employment elsewhere. One interviewee explained: 'They leave for another place of work or go to Russia. When a break is too long, they just don't come back. But, to recruit new people is the same as starting again'. These problems meant clients did not receive these services or were forced to rely on services funded by alternative donors to receive needles/syringes.
Economic barriers
The economic transition in FSU countries in the last ten years has been traumatic. Studies have reported increased poverty and unemployment, weakened social welfare, increased domestic violence, alcoholism, intravenous drug use and sex work. These factors fuelled the HIV/AIDS epidemic and created severe financial shortfalls in the healthcare system, reducing coverage and increased out-of-pocket payments [4, 7, 8]. Faced with socio-economic challenges of such magnitude, Global Fund and other donor-financed HIV/AIDS services have, unsurprisingly, struggled.
Whilst notionally free to users, Ukrainian and Kyrgyz clients interviewed suggested that they frequently made additional and/or informal payments to receive commodities from government HIV/AIDS services including medicines and surgical gloves which they found expensive. The costs of obtaining necessary official documents required by government services also constituted a substantial economic barrier to using these services. Such problems were not reported by Ukrainian and Kyrgyz clients as a significant problem in utilising NGO-run services. However, observations of transactions in the markets, which were conducted as part of the Kyrgyz study, revealed that Global Fund-financed needles/syringes intended for free distribution by NGO HIV/AIDS services and some government providers were very widely available for purchase. Many clients reported that service providers, both NGO and government employees, appeared to exercise considerable discretion over whether or not to give them resources-including needles/syringes. Clients were often uncertain whether or not staff sold commodities for personal profit, or if staff were attempting to extract informal payments for commodities.
Geographical barriers
The study revealed that there were substantial variations in geographical accessibility to HIV/AIDS services in the two focus countries. Ukrainian and Kyrgyz clients and stakeholders agreed that the main problems of geographical accessibility stemmed from the uneven distribution of both government and NGO-run HIV/AIDS services. Notable was the limited services outside larger towns/cities, but also the uneven distribution within the larger cities where the study took place. While it was beyond the study's scope to systematically interview clients living outside larger towns/cities, qualitative data point to substantial local variations in geographical accessibility. For example, clients living outside Odessa and Osh explained that distance was a substantial barrier to using both government and NGO HIV/AIDS services, exacerbated by poor public transport. Government AIDS Centres were located on the edge of built up areas in Kyiv and Odessa, reflecting the stigmatisation of HIV/AIDS, and these were poorly served by public transport in Odessa. Stakeholders and service providers reported that within larger cities such as Kyiv, Odessa and Osh, the distribution of NGOs receiving Global Fund grants was uneven: most had a history of operating within specific neighbourhoods, building trust among a small local client base but leaving many areas badly served. Clients stated that they were sometimes disinclined to travel for free needles/syringes since buying them through local retailers was less expensive than travel costs.
To address some of these problems many Global Fund-supported Ukrainian and Kyrgyz NGOs supported by the Global Fund and other donors ran outreach health promotion and needle/syringe distribution services. Basic government HIV/AIDS services had also been extended to primary and secondary government healthcare outlets in both countries where services included blood sampling for sending to AIDS Centre laboratories for HIV testing, administering antiretroviral drugs; and in some cases distributing needles and syringes. Nevertheless, clients reported that problems remained: many said they preferred to receive care through specialist government or NGO HIV/AIDS services rather than at local government clinics as it was easier to conceal their HIV/AIDS status in the former.
Organisational and bureaucratic barriers
Clients reported that they experienced substantial organisational and bureaucratic barriers to using government HIV/AIDS services in both focus countries. They often lacked information on procedures for using these services, which varied between different providers since there appeared to be substantial discretion among individual staff, making service use unpredictable. Ukrainian clients in particular described the procedure for accessing government HIV/AIDS and indeed other government health services as complex and bureaucratic, often resulting in unanticipated costs including travelling to several different healthcare outlets, unanticipated delays and difficulties making appointments. For example a Ukrainian client explained that she was refused care by a government HIV/AIDS service because she was registered as living in another region, and the procedure of obtaining new permanent registration was lengthy and complex.
Ukrainian clients had experienced various other problems. For example: '...in order to become a client of substitution therapy programs you need to have an HIV-positive status' (although this requirement has now been relaxed in Ukraine) and '...to go through rehabilitation for drug users for free, you've got to wait for 2-3 months because there is a waiting list'. While relatively few clients in both countries felt that problems of referral between services acted as a barrier and most Ukrainian and Kyrgyz clients said that they had been referred between NGO and government services, interviewees explained that client referrals were in practice inconsistently applied and frequently consisted of informal signposting rather than formalised referral across government and NGO providers.