DEVELOPING
AND
IMPLEMENTING
EFFECTIVE
RESPONSES
Professor Desmond Cohen
HIVDEV Consultant
Last Modified, October 2002
Not to be circulated in altered form without permission of the author
Introduction: A Window of Opportunity
The case for effective and relevant programmes to support those living with HIV is straightforward but it is often not understood. The following paper sets out some of the main arguments for establishing programmes that support those living with HIV. It does so within the context of a global epidemic of HIV that has its origins in the structural characteristics of societies ? the level and distribution of poverty, the inequalities of wealth and income, the patterns of employment and unemployment, the power relationships between men and women and more generally in society, and people's experience of social, political and economic development.
Although these factors have a role everywhere in the transmission of HIV, and in the capacity of countries to develop effective national responses to the epidemic, it is not the case that they operate with the same importance in all places and at all times. Rather they are important causal factors that affect the general epidemic processes in all countries, but with different degrees of significance. As such they are part of the policy problem facing countries in their response to the HIV epidemic, and unless these structural factors are addressed through policies and programmes then there will be little chance of dealing effectively with issues of HIV prevention, care and mitigation of the social and economic impacts of the epidemic.
The role that social, political and economic factors play in the HIV epidemic have only recently come to the forefront of the global and country response. As such this late recognition is a reflection of the general lack of success that many countries have had in responding effectively to HIV and AIDS, although it is the case that in general most developed countries have managed to contain HIV prevalence at relatively low levels.
'Their general success often masks ongoing specific and intensifying problems in some populations and areas.'' Their containment of the epidemic is largely attributable to the fact that they have the resources to put in place those elements of a response that are more or less effective. It is precisely the lack of such resources, allied to a general mis-specification of the problem, that has constrained the effectiveness of what most poorer countries have managed to achieve in their response to HIV and AIDS.
What is only too clear is that the HIV epidemic threatens the social and economic development of countries through its impact on saving rates and investment, and through the losses of human capital that are incurred. For the epidemic not only has its origins in the social and economic structures of countries but it has over time major effects on the achievement of social, economic and political objectives. This is most evident for those countries that are now experiencing mature epidemics, mainly in Africa, but increasingly also in other regions.
But the impacts on social and economic development are not inevitable. It is possible to learn from the experience of those countries that have experienced HIV and AIDS and to transfer the lessons to those countries that are relative latecomers to the epidemic. One of the objectives of this paper is to set out what are the elements of an effective response to HIV and AIDS within the context of Eastern Europe and the former Soviet Union [CEE/fSU]. For, as has often been observed, there is not one epidemic globally but many. The challenge, in part, is to take those aspects of effective policies and programmes and to transform these for application to the specific country situation, and to learn rapidly about what works and what does not.
What is also clear from the experience of other countries is that the time-frame within which to set up relevant and effective policies and programmes is very short, and if missed can lead to disastrous outcomes. The HIV epidemic has the capacity to rapidly move from a concentration in those with high risk behaviours, be they sexual or otherwise such as' Injecting Drug Users [IDUs], to the general population. This needs to be understood and responded to. Once HIV prevalence exceeds 4-5% of the adult population then the evidence from other countries is that it is extremely difficult to prevent it from reaching very high levels indeed ? and it does so with great rapidity.
As noted above the CEE/fSU countries have the opportunity to learn from other countries experiencing more mature and increasingly disruptive epidemics. That they need to do so urgently is reflected in the fact that many EE/fSU countries are facing rapid increases in HIV in their populations, and that HIV infection in some countries is no longer confined to those with specific high risk behaviours. What is being observed [see Section 2] in some countries is a shift of HIV to the general population which is a sign of the increasing intensity of the epidemic, and one that indicates that HIV may now witness explosive growth unless checked.
Countries in the region now face a window of opportunity which if missed will not recur again. Hence the need to put in place those policies and programmes that in the specific context of the countries, and their epidemic pattern, make sense in terms of prevention of HIV and in mitigation of the personal and other impacts.
This Paper is in three parts. Section 1 sets out the general case for policies and programmes that deal with the HIV epidemic. Section 2 reviews the dynamics of the HIV epidemic in the region. Finally, in Section 3, there is an outline of the key elements and processes that need to be in place if the countries are to respond effectively to the HIV epidemic within the specific context of the epidemic in the region.
Section 1: General Principles for Programme Response [i]
The steps in the argument are as follows: -
TWO KEY PROPOSITIONS
Human Capital and the HIV Epidemic
Those infected with HIV represent important economic and social resources for the country in that they embody skills, training and experience that have often taken considerable social investment [by households, the state, and private employers]. It is important that policies and programmes be in place that ensure that individuals are able to perform their economic tasks and their social roles [in support of families etc] for as long as they can be productive. Thus ensuring that they are supported in all relevant ways so that they are able to continue to produce economic and social goods is obviously very sensible, and also efficient.
Some, perhaps many of these people living with HIV will have skills etc. that are very valuable and not at all easily replaced. Note that there is a strong likelihood that those living with HIV in the early stages of the epidemic may come disproportionately from those with higher level skills and extensive experience ? both men and women.' These are skills that it is very expensive to replace ? and since many skills are the result of on-the-job experience may take years to replicate.
Note furthermore that even supposedly Òunskilled' labour, such as that involved in agricultural production, does require the acquisition of task and location specific skills and knowledge that may have taken many years to learn. Indeed one of the benefits from ensuring that those living with HIV are able to remain active and productive for as long as possible is that they will have the time and opportunity to pass these very important skills to the next generation [to their children]. If this does not happen then it is unclear how intergenerational human capacity will be sustained ? and if parents are unable to do this then who will do it?
There is an important gender dimension to the effects of HIV on Human Capital. This follows from the fact that in many countries there are powerful factors that operate to determine the specific roles that men and women have in social and economic development. This has important policy implications because of the low level of substitutability of factor use that this entails in all economic and social activities. Thus there are defined gender functions in most enterprises that limit the degree to which the effects on production of morbidity and mortality can be ameliorated. To respond to this effectively requires both policy responses, eg. in training, and management that is flexible in changing gender based functions in the workplace.
Systemic Effects of HIV and AIDS
The economic and social system is composed of inter-dependent parts that depend for their efficiency on the rest of the system performing more or less as normal. If it does not then there will be system failures that will be measurable in terms of inefficient production. Thus if the transport system is disrupted by losses of skilled drivers and mechanics ? there are continuous breakdowns in transport services ? then everyone's production plans are disrupted and costs increased.
The examples could be multiplied a thousand-fold given that the HIV
epidemic will erode productive capacity across all sectors in ways that
reduce the system's capacity to function efficiently. Thus there will be
general benefits from action to sustain people living with HIV so that
they remain productive for longer ? benefits that in the aggregate exceed
those from action relating to individual sectors. What is often called
Òsystem synergy' ? if everyone attempts to sustain productive capacity
through activities to retain productive labour across both formal and informal
sectors then the gains in total are greater than those achieved by individual
actions.'
IDENTIFYING GAINS
Individuals and Families Gain
There are direct benefits to individuals and to their families from effective programmes of support ? including access to basic health care [at the minimum], economic support for affected families [eg. for children in the form of nutritional support, help with schooling costs etc], nutritional supplements for those living with HIV [this is known to considerably extend the lives of those living with HIV], psycho-social support, and so on.
There are three separate important gains from this ?
* Individuals living with HIV will remain productive and working for longer ? from which everyone gains ? society in general as well as the individual and the family.
* Families gain ? all dependents, both the young as well as the old ? from the fact that income from work will still continue to be produced [and food put on the table, the house maintained, and children supported in going to school]. This not only benefits the Household but also the state and others [charities, churches, relatives] who are relieved at least for a time of the problems of support for those affected by HIV and AIDS.
* Children gain in that they continue to receive economic and
social support through family structures rather than through alternative
mechanisms, such as orphanages where these exist. This is very important,
not least in that there is evidence that inter-generational poverty is
an important factor in the processes that lead to infection with HIV in
succeeding generations.
The State Gains
People continue to work, pay taxes, support their families and do not draw down state support services [such as those needed for support to children and families]. Of course there will be the need to ensure that adequate access is given to health services in respect of generic drugs for opportunistic infections [these are generally not expensive], and that psycho-social support is provided for individuals and families.
The budgetary benefits to the State have to be considerable and undoubtedly exceed the costs of the services that need to be made available [they are in general supposed to be there anyway in respect of access to health services and basic drugs]. Not least of the gains to the State are the fact that production is not disrupted in key sectors [such as Commercial Agriculture and Tourism that generate employment, foreign exchange and tax revenues], and that key services such as education and health are also sustained. These sectors will also have their share of those infected with HIV, and maintaining situations where personnel remain productive for as long as possible is absolutely essential and efficient.' Not least because these sectors have major roles in the national response to the epidemic as well as their other essential economic and social functions.
Note also that the State is a primary source of employment and if anything
tends to hire very large numbers of those with higher level skills. The
State has undertaken in the past substantial investment in education and
training, including on-the-job training, and thus has a major interest
in keeping its labour force productive for as long as possible. It is extremely
costly to replace such labour, and thus establishing conditions where workers
can remain productive for as long as possible makes obvious economic sense.
The Private Sector Gains
The private sector gains from the fact that work is sustained and the benefits from the ongoing availability of skills to the enterprise is maintained. This means that firms will face lower costs [with less absenteeism and disruption of work, lower retraining costs, and higher productivity across the organisation because skills and experience specific to the firm will remain useful for longer]. A good employer will understand this and will ensure that personnel policy and other support services are in place to keep employees productive for as long as possible.
Integrating HIV and AIDS in the workplace makes good economic sense
given the identifiable impact of the epidemic on a producer's labour supply
[and thus on costs of production and distribution]. This may not appear
to be the case in the early stages of the epidemic, in that HIV infection
in the labour force will initially be masked and only be apparent as workers
become sick and subsequently die. What this means is that enterprises need
to be proactive early in the epidemic so as to establish effective programmes
for HIV prevention, and subsequently to adjust working practices though
management change so as to alleviate the impact on costs of production.
None of this is easy to achieve, but is important if the gains from effective
policies and programmes for HIV are to yield their full benefits both for
enterprises [and more generally for the economy and society].
CREATING AN ENABLING ENVIRONMENT
None of the above outcomes are going to be achieved unless those living with HIV have the confidence to become identified, and to come forward for help and support. Setting up services to support those infected and affected will help ? indeed will be essential. But in themselves little will be achieved until a framework of laws are in place to protect the rights of those affected by the epidemic. Similarly, the conditions have to be created by the actions of public leaders and others [such as the Churches and business communities] that diminishes discrimination and stigma.
Building a supportive environment will take time but it is essential if those infected by HIV and AIDS are to continue to be productive members of society ? supporting their families ? for as long as possible. This is NOT a costly operation but the benefits will be substantial both to individuals, families and to the state and private sectors.
Central to an effective response is the mobilisation of civil society as noted above. It is not simply that the State does not have the resources to provide for the social and economic support for those affected ? although this is likely to be the case in most countries ? it is just more effective in terms of resources for many types of support to be locally based. This is the old principle of Òsubsidiarity', ie. doing what needs to be done in the most effective way by ensuring that the level at which services and material support are provided is as close to the recipient as feasible. This is more likely to ensure relevance to the needs of those affected, and thus more likely to be efficient in the use of resources.
So mobilising communities and other organisations of civil society is essential to localisation of most local forms of support. But it has the additional benefit that the greater visibility of the issues and involvement in the response will establish the processes by which the community takes responsibility for what is done, and very importantly begins to understand why socially determined behaviours have to change.
Herein lies the answer to the great conundrum of HOW to bring about behaviour change ? it starts with local recognition of responsibility for those affected by HIV and AIDS and then moves on to issues of how to adjust socially determined norms of behaviour, including sexual and drug using behaviours.
Section 2: Situation analysis - identifying the issues [ii]
As noted above there is no such thing as a single epidemic of HIV but rather multiple epidemics that vary in their pattern and dynamics in different regions and countries. This is certainly valid as a statement with respect to the situation in the EE/fSU countries where the HIV epidemic displays widely different characteristics at both sub-regional and country level. Two conclusions follow from this observation: firstly, that few general statements will have validity for all countries. Secondly, that understanding the problem in the cultural, social, political and economic context of each particular country is crucial if there is not to be misspecification of what needs to be done by way of appropriate policy and programme response.
With these caveats it is nevertheless possible to make some strong general statements that are more or less valid for the region as a whole.
* That HIV is present in all countries in the region although incidence and prevalence of HIV varies widely between countries and between sub-regions.* That the factors that generate risk behaviours that transmit HIV are common to all countries, although their importance both varies between countries and within social categories in countries.
* That the epidemic of HIV is now demonstrating explosive growth in some countries in the region, and in some cities within countries, such that the Region is now one of the areas globally where HIV incidence is growing fastest.
* It follows that in the countries and cities where HIV prevalence is high and growing the causal factors in transmission are themselves being adjusted and changed as the epidemic increasingly moves beyond the boundaries of those with specific risk behaviours, such as injecting drugs, to others in the general population.
* The dynamics of the epidemic in the region, and in some countries and cities, now increasingly reflects that of other areas of the world which have more mature epidemics [such as sub-Saharan Africa].
* As the epidemic intensifies and spreads so it becomes an increasingly difficult problem to contain and to manage through public policy, in that the dynamics of transmission of HIV will become primarily sexual rather than associated with injecting drug behaviour.'
The data on the epidemic in the countries of Eastern Europe and
the former Soviet Union do not make for pleasant reading, and confirm the
statements made above about the seriousness of the emerging situation.
UNAIDS estimates that as of December 2000 there were 700,000 HIV infections
in CEE/fSU. This includes 250,000 new infections in the year 2000 alone,
which is more than three times the total of new HIV infections reported
in North America and Western Europe combined. There are now absolutely
more people infected with HIV in CEE/fSU than in the whole of Western Europe.
In the case of St. Petersburg, the city with the highest incidence of new cases in Russia, there were on average 1200 new infections of HIV each month during the year 2000.' A staggering rate of increase which begins to pinpoint the seriousness of the emerging situation in urban environments within the CEE/fSU. Furthermore, infection with HIV is increasing very rapidly amongst children under the age of 15 years ? a trend that suggests that increasingly HIV transmission is occurring primarily through sexual means.
A stark example of the transitional stage of the epidemic from one affecting
mainly those injecting drugs is the case of Ukraine, where they account
for a decreasing proportion of those identified nationally as HIV positive
? from 83.4% in 1997 to 64.7% in 1999. The counterpart of this shift of
trend importance of injecting drug behaviour in HIV prevalence has been
an increase in the proportion of sexually transmitted infections from 11%
in 1997 to 21% in 1999.
Targeting Special Populations
Within specific identified populations the situation in respect of HIV infection is worsening rapidly, in spite of some attempts to contain transmission in some countries. This is particularly true of the worsening levels of HIV in prison and military populations where the situation is increasingly serious. In the case of prisons the situation varies from country to country, in part reflecting the fact that prison conditions vary a great deal and in part that countries have widely variant levels of HIV in the general population. As is to be expected rates of HIV in prisons will to a degree reflect the national situation ? but only to a degree in that specific factors are operating within prison situations that induce behaviours that encourage HIV transmission.
Thus in the Ukraine it is estimated that 7% of prisoners are HIV positive; in Poland it is argued that of the national total of 7000 people who are infected with HIV that 20% of them spent time in prison or in pre-trial detention. In Latvia it is estimated that 25% of the country's HIV positive population is in prison, and that in Russia in a sample of 7 prisons MSF found that 43% had injected drugs [and of that total that 13.5% had started in prison].
The full extent of the problem in prisons is largely unknown and has been subject at best to Òbenign neglect'. But it is clear that various factors jointly interact in ways that ensure that prisons have become places of great risk of HIV infection for its inhabitants, who are scarcely there through personal choice. Amongst the factors that make prisons important places for HIV infection are high levels of undiagnosed and untreated STIs in both the general and prison population of CEE/fSU, which raises the risks of HIV transmission; populations in prison with previous life patterns that are associated with HIV infection, such as sex work, drug use, drug addiction and drug trafficking; and, finally, while perceptions of HIV risk are low among prisoners ? both men and women ? the environment in which they live leads to activities such as voluntary or forced sex between men, and sharing of needles, that entail very high risks of HIV transmission.
Military populations often display high rates of HIV infection in many countries and the reasons for this are not hard to identify. Typically the military enroll young men and women from sexually active age groups and then deliberately sets out to change the cultural context of their lives to one that suits their new roles in society. In doing so the military emphasise group behaviours and loyalties, and diminishes the ties to families and other social institutions. In these circumstances the strength of peer factors in behaviour generally is strengthened as the individual is seen as less important to the achievement of military objectives.
These changes in group dynamics, whatever their benefits to the military in terms of their specific needs and objectives, can in a world of HIV and AIDS have consequences that are far from desirable in terms of sustaining the military as an effective organization. For losses of human capital due to HIV and AIDS can be every bit as serious for the military as for civil society ? even more so where the incidence of HIV in the military is higher than in the general population, and where the costs of training the military are often very considerable.
One of the consequences of the economic and political changes over the past decade has been an increase in economic hardship and unemployment in many countries of the CEE/fSU. This is reflected in the data relating to life expectancy which is a good summary indicator of what has been happening to the general standard of living in the region. As is well known Life Expectancy has been falling ? especially for males- which reflects a reduction in access to health services, falling nutritional standards in the general population, and the effects of increasing feelings of anomie and hopelessness in a population that is increasingly impoverished.
These conditions of increased levels of poverty and unemployment, rising inequalities of income and wealth and induced [higher] levels of labour mobility, allied to increasing evidence of family disintegration, are all conditions conducive to an expansion of those risk behaviours that facilitate the transmission of HIV. This is most evident in its effects on behaviours such as drug injecting which reflects the increasing hopelessness felt by many people who no longer feel that they have a future. For example, since the break up of the Soviet Union, and consequent economic dislocation, the young people of Irkutsk have turned increasingly to drugs. The number of HIV infections have risen there from more or less none reported in January 1999 to 8000 in 2001.
This is a phenomenon unfortunately now being repeated in many parts of the CEE/fSU and is reflected in increasing numbers of street children who are at great risk of HIV infection. For example, a recent UNICEF study estimated that in 1989 some 60% of Tajikistan's 15-18 year olds were in school. By 1998 enrolment had dropped to 24%. The same UNICEF study reported that for 15-24 year olds in Central Asia average mortality rates had risen by almost 30% between 1989 and 1998. This pattern ? of rising unemployment, violent juvenile crime and related issues of suicide and depression are repeated in many other countries of the region.
These are precisely the conditions in which HIV transmission thrives, a youthful population that is sexually active and increasingly injecting drugs, for whom the economic future is so bleak as to make them very resistant to public health messages relating to the dangers of HIV and AIDS. Even if public health messages were targeted at these vulnerable populations, and in many situations they are not, then it is very unlikely that these would be heeded, given the increasingly hopelesss social and economic conditions that many youth are facing in the region.
One aspect of the distribution of HIV relates to gender. Both the proportions and age distribution of HIV classified by gender, and the role that gender plays in determining the effects of HIV on affected populations. The latter has received a good deal of attention in the literature on AIDS where it is argued that women are denied by their social and economic roles in society the capacity to determine their sexual lives. This places women at risk of HIV infection directly through their dependence on the risk behaviours of their regular partners over which they have little control. More fundamentally it is often the case that women, who are generally denied access to educational opportunities, are thus prevented from sustained attachment to the labour market, and when employed are often at a severe disadvantage relative to men. This is reflected in the persistent gap between male and female wages in many countries.
What has clearly happened in the past decade in the CEE/fSU is that women have been disproportionately affected by the social and economic changes that have taken place. This results from the persistent discrimination in employment faced by women, with unequal pay, sexual harassment and violence. A recent survey by the Helsinki Foundation for Human Rights found that women in CEE/fSU on average earned only 60-85% of male earnings and were subject to continued workplace discrimination in terms of employment conditions ? including separation from employment when decisions are made on who retains their jobs.
The implications of the worsening of the employment and other social conditions facing women' for risk behaviour does not need to be spelt out in detail. It is evident that many women who are increasingly marginalized by the economic changes underway in the region have resorted to economic activities that expose them to greater risk of HIV infection. In part these risks are due to greater involvement in sex work where HIV is easily transmitted given the high levels of STIs in the male and female population, and the generally low use of condoms. But other forms of economic activity also pose risks ? not least the increasing involvement of women in drug trafficking in Central Asia, and increased sexual risk of HIV infection through their involvement with men injecting drugs.
What the increasing economic marginalisation and poverty of women generates
are increased rates of HIV infection which will in time also have effects
on HIV infection rates in children [there is a one in three chance that
a child born to a mother who is HIV positive will also be positive, and
the risk is increased where the baby is breast fed by a further 15%]. Data
for the Ukraine suggests that the proportion of women infected with HIV
is rising, and that the existing ratio of 3:1 [male/female] is shifting,
as women increasingly engage in risk behaviours similar to their male counterparts
as a result of their deteriorating socio-economic position. What this shifting
ratio also suggests is that the epidemic is moving out of the male drug-injecting
population into the general population. A trend, which as noted above,
has to be very worrying in terms of what it implies for social and economic
impacts and an intensification of personal distress.
Section 3: Implementing Effective Responses [iii]
The case has been made above for responding early to the threat posed by the HIV epidemic to social and economic development, and it has been argued that the CEE/fSU have still the time to put in place those policies and programmes that will prevent the epidemic from maturing to the stage that it has reached in many countries of sub-Saharan Africa. But the window of opportunity is closing rapidly and it cannot be said that the present responses in the countries of the region are commensurate with the problem. Indeed the slowness in responding, and the narrow focus of the policy and programme response, is deeply worrying. Whereas in other countries there is now a greater perception of the threat that HIV and AIDS poses for societies and economies it cannot be concluded that this is as yet the position in the CEE/fSU.
The reasons for the delay in developing and implementing a multisectoral response are many, and in part the lack of resources and low priority given to the HIV epidemic reflects a basic misunderstanding of the issues that are at stake. In Section 1 above some of the arguments that can be made for focusing on the needs of the individual and her/his family are presented and it is argued that this is what economists define as a Pareto optimum, ie. a case where everyone gains from public policy action and no one loses. It follows that failure to address effectively the needs of those infected and affected now will contribute to a state of affairs, a runaway epidemic of HIV, from which everyone will lose. This state of affairs can be avoided, and should not be permitted to happen.
There are 4 different but overlapping arguments that can be made for prioritizing the response to HIV and AIDS. These are as follows: -
* That the HIV epidemic is a threat to public health in that a deadly infectious disease will spread rapidly from its existing concentration in those with high risk behaviours, primarily those injecting drugs, to others in the general population. The result will be pressure on public health resources and increasing morbidity and mortality. To prevent this set of outcomes what are needed are policies and programmes that increase public awareness through information and communication, screening of the blood supply to eliminate HIV-infected blood, improved control of STIs, and access to HIV testing and' counseling. Other policies may also be included along with epidemiological surveillance to track what is happening to the spread of HIV in the population.* That the epidemic is a threat to social and economic development, along the lines of the argument presented earlier. This argument for intervention is predicated on the impact of the epidemic on the level and distribution of savings and investment in the economy where HIV and AIDS reduces the quantity available for productive use [and thus reduces the rate of economic growth that is achievable]. Furthermore the epidemic also reduces the stock of human resources through its effects on the level of skills in the labour force and through its effects on morbidity and mortality ? so that human capital is eroded. But all studies of the causes of economic growth and development identify the stocks of savings and labour as being crucial for achieving economic and social goals. Thus the HIV epidemic will over time reduce the potential for improving living standards for the population as a whole, and on this basis it is worthwhile devoting adequate resources now to preventing a future lower level of GNP.
* That there is a moral case for public policy action which is independent of the public health and economic cases just presented. Those who are infected by HIV and those who are affected [the close families, and especially children] are all entitled to access to public resources to enable them to cope with the effects of HIV and AIDS, independently of whether there are economic benefits/avoidance of economic costs or not. This case for public policy action is based on concepts of human rights, embedded in the UN Charter, which states that everyone has a right to good health status [and thus access to quality public health services].
* That there is as a basis of policy concern and policy provision the concept of pure self interest. This is often adduced by some social scientists, especially economists, as the underlying factor in motivating behaviour. Thus, in the case of HIV, it can be argued that as individuals, rather than as a society, we have an interest in ensuring that HIV transmission is contained in that if it is not then we will be affected in our normal social and economic lives. To avoid these effects then public policies for prevention of HIV, care and support for those infected and affected, and policies to mitigate the social and economic impacts, are all warranted.
In the light of the above what are the set of policies and programmes
that are needed in the specific context of the HIV epidemic as identified
in Section 2? Not in detail but in broad outline. Bearing in mind that
the focus is on why those who are engaging in what might be seen as reprehensible
behaviour, such as injecting drugs or engaging in sex work, are still very
deserving of public policy attention. This follows from the arguments advanced
in Section 1 [Everyone Gains], as well as from those presented above in
terms of public health, economic costs, human rights and enlightened self
interest.
Bearing in mind also that in the region while injecting drugs and related activities are often at the heart of HIV transmission and its effects these are not the sole and only factors that are operating. Noting that the slowness of the policy response has nevertheless been largely determined by a general belief that those who inject drugs have only themselves to blame for their condition, including their own and their family's HIV status and experience. For example, it is often argued that since those injecting drugs are often unemployed there are no direct economic costs, and that in any case since there is widespread unemployment so those who inject drugs can be painlessly replaced from the pool of those without work. Hence, so it is concluded, there is no need to provide support for those injecting drugs.
'But these attitudes do not make cogent sense in a world of infectious diseases and one moreover where HIV infection easily moves beyond those initially affected into the general population [the case that is now occurring in some parts of the CEE/fSU]. Thus even if it was the case that those injecting drugs were drawn wholly from the unemployed and are easily replaced [and this cannot be true in all cases] it is still the case that as citizens that they possess rights that should ensure access to care and support. Even if this argument is denied it is worth emphasizing that although there may be few direct economic benefits from supplying services to those injecting drugs there are enormous potential economic costs from not doing so.
In all regions of the world the epidemic of HIV has originated in the risk behaviours of small groups, such as those injecting drugs, and has spread from them to the general population. Once HIV is present in the general population, as argued above, it can spread very rapidly, with a capacity to double every 2 years, so that extremely high levels of HIV prevalence are rapidly approached. Once this happens then countries are faced by economic and social costs which are large ? losses of the order of 1 to 2% of GDP annually in the case of countries with mature epidemics. Thus in a cost/benefit analysis of the existing situation in the region it is obviously worthwhile spending small amounts of resources now on prevention and care in order to avoid very large economic and social costs in the not very distant future. For HIV can spread rapidly from low levels of prevalence now to 20% of the adult population infected within 10 years. The social and economic costs of not putting in place programmes to support those injecting drugs are on a scale that dwarf the costs of being proactive at this time.'
What needs to be done if the response is to be commensurate with the
problem?
Policy Reform
The first and most crucial change that is required is to reformulate the policy problem as not one merely of containing the use of drugs but one that recognizes the more general threat that HIV poses for the society and the economy. To then align various aspects of policy with what is needed for an effective policy response. This will necessarily include reform of the policy environment relating to drugs, but is much more general that just this. In part the problem is that policies for drugs and policies for HIV have been developed separately rather than being seen as integrated and mutually supportive. In many countries drug policies do not address HIV and in many cases HIV policies do not deal with drugs. But this makes no sense at all in those conditions where drugs are at present at the heart of the HIV epidemic, and where dealing with one social issue inevitably means dealing with the other.
No one is suggesting that either of the issues - of' IDUs and HIV - are easy to deal with through policy and programmes. But the linkages are evident and the threats are considerable, both at the personal and societal levels. In the general absence of effective national policies and programmes to address the needs of IDUs and HIV it is often left to community-based activities to do what they can without a supportive national framework of laws and policies. While this situation is changing slowly in some countries there is still a need to ensure coherence between national and other levels of activities if effective programmes are to be feasible.
It is not that policies for controlling the supply of drugs and demand reduction are not desirable in themselves, for they clearly are, but they are not sufficient in a world of HIV and AIDS. Whatever in general may be achievable by policies for demand and supply reduction they will take time ? and time is something that is scarce in a world characterized by HIV. It follows that such general policies need to be supported by actions that have been shown to be successful in other countries ? in particular policies for harm reduction. This implies the development and implementation of strategies for reducing the harms associated with use of drugs without necessarily requiring abstinence or reduction in drug use.
Programmes of harm reduction are built on activities to reduce the sharing of needles and unsafe injecting behaviour, and have been shown to be effective in reducing the incidence of new HIV infections under quite different geographical conditions.' Nevertheless harm reduction programmes are often controversial and governments have often been unwilling to support their use. This is in spite of the much greater threat that HIV has to society than drugs, since the use of the latter are generally reflective of specific social and economic conditions that are not general to society as a whole [see Section 2 above]. In any case harm reduction activities are complementary rather than competitive with demand and supply reduction strategies, and need to be seen in this light.
The first step towards more effective policies for drugs and for HIV
is to recognize that they have their origins in structural conditions that
are often the same, such as poverty, and to then develop policies based
not on retribution but on effectiveness in addressing a common and jointly
determined problem.
Legal, Ethical and Human Rights Issues
There are many complex and related issues that together affect the legal and human rights environment within which policies for both drugs and HIV are conducted. The objective is clear: to establish frameworks of laws and rights that are supportive of an effective set of policies and programmes for both HIV and drug use. But this is not generally the starting point for many countries where public policy interests have been too narrowly defined and often, unfortunately, in retributive form. In these conditions the legal system has the effect of decreasing the access to those using drugs or engaging in sex work, and thus makes it even more difficult to change risk behaviours and address the needs of drug using and HIV affected populations [and these are increasingly the same people].
Examples of legal provisions that impede effective responses to HIV and to drugs are plentiful. In many countries there exist so called 'paraphernalia laws' under which possession of injecting equipment is illegal. One of the consequences of this is the sharing of needles, so as to avoid legal penalties, but this is one of the most effective mechanisms for transmission of HIV ? much more effective than unprotected sexual activity. The experience in many countries is that abolition of such laws does not increase injecting of drugs but does reduce the transmission of HIV [which it is argued above is a much more important policy objective given the potential scale of the social and economic impacts of the epidemic].
Similarly, as noted in Section 2, the imprisonment of those using drugs in conditions where there are repressive prison regimes in operation is a powerful force for the transmission of HIV [both through needle sharing and sexual activity]. Again there are tried and tested policies that make sense in such conditions and which positively assist those engaged with law enforcement in their activities. This, in part, means the development of policies and related activities for prisoners that are based on their human rights [that do not disappear when they are imprisoned], and will include access to needles including needle exchange where feasible, sterilization facilities and the provision of condoms.
All of these activities raise problems for law enforcement officers, and for public opinion, but the costs of inactivity are much greater in personal and societal terms. Again there is experience on which to build that points the way forward with sensitizing opinion and for developing supportive laws and activities. Many countries have found it preferable to subcontract what needs to be done both within prisons and outside to NGOs and CBOs, and this experience can be built upon by those policy makers that understand the need for innovative and effective approaches to these complex problems.
Last but not least are issues of stigma and discrimination, both of which bedevil the lives of those affected by drug use and of HIV/AIDS, and make more difficult the changes in risk behaviours that are required. In part this is due to a lack of concern within society of the human rights of those using drugs and those affected by HIV and AIDS. In both cases there is a tendency to establish approaches to the problem, and to the people directly and indirectly involved, that are both discriminatory and stigmatizing. For example in respect of employment for those who are HIV positive, and in the failure to ensure confidentiality in respect of the HIV status of individuals in health care and employment situations.
All of this can be changed, and regimes introduced that are based on
inclusive rather than exclusive principles so that those who are presently
marginalized are brought within the ambit of supportive policies and programmes.
Only then will real progress be possible in addressing the needs of those
using drugs and those infected/affected by HIV and AIDS.
Programming Issues
* There are innovative programmes that are attempting to address the joint issues of HIV and drugs in the region, but they are few in number and not at all commensurate with the scale of the problems that the region is experiencing. So in part the programming issue is about moving to scale - expanding what has been shown to be relevant and which is effective. But in part this depends on knowledge of what is effective and transferring this experience to other situations, and in part it depends on recognizing the joint inter-dependence of activities for drugs and those for HIV and AIDS. This repositioning of HIV and drugs so that they are seen as mutually relevant still has to occur in many countries in the region, and hence the need for policy reform as a prior requirement of programme development.
* The principles for effective programme responses for drugs are well known, but are still rarely being applied. These include many of the activities noted above, including those relating to harm reduction ?syringe exchange programmes, sale of injecting equipment in pharmacies, outreach programmes including peer education, psycho-social support, and awareness and advocacy activities. All of these need to be based on principles of human rights and on the involvement of those closest to the problem. That is, on the direct involvement of families and of communities and their organizations.
For increasingly the evidence is that effective programmes for drugs and for HIV need to be based on the same principles if they are to work. There are thus strong complementarities between the design and delivery of programmes for drugs and for HIV since both are social problems that entail changes in behaviour, and the evidence is increasingly supportive of an approach that is built on community determinants of behaviour change, rather than individualistic approaches.
Antiretroviral Therapy
* The increasing availability and reduction in costs of ARV drugs has significantly changed the feasibility of establishing effective policies for HIV and AIDS. As such it is essential that those engaged in policy development and in the design and implementation of programmes take note of recent changes in the cost of ARV drugs. It is now the case that ARV drugs may be available at costs that make access feasible for much greater numbers of those who may be living with HIV and AIDS. It is now possible for Governments and other accredited agencies to acquire ARV drugs at costs as low as 300
for a year's supply per individual [although costs will vary with the status of countries that may be eligible for access to the drugs through international agreements].
* Now the costs of ARV drugs are only a component of the infrastructure that needs to be in place for the effective use of the new therapies, but cost has in the recent past been a major hurdle to their availability. This is no longer necessarily the case, and the availability of ARV therapy plus associated changes in infrastructure to ensure control over delivery and compliance are now perfectly feasible.
* Estimates of benefit streams from ARV therapies supports the case that at existing cost levels it makes good economic sense for countries to make the drugs available to PLWHA. Not only can PLWHA live longer and productive lives, but there are many other benefits of the type identified above that accrue more generally to society and to the economy. But there are benefits also in terms of HIV prevention directly, in that ARV therapy can reduce the viral load of those with HIV to more or less undetectable levels, with major benefits in terms of reduced infectivity [and thus reduced levels of HIV transmission].'
* For the ARV therapies to yield their full impact it is even more important that a supportive policy framework and' enabling environment of laws and human rights be in place, for unless individuals and their families can be assured that they will not face discrimination and stigma, and all of the consequences of these, then they will not come forward for HIV testing as a gateway to accessing the new drugs. What the new therapies does is to open up entirely new possibilities for accessing those with HIV, in that it is now possible for the first time to offer treatment that will make a real difference to their lives.
There can be no doubt that ARV does change the feasibility of what can
be achieved, but to do so still means undertaking many of the reforms of
policy and programming that are outlined above. The new drugs will not
be effective unless' policies and programmes reflect the realities of the
situation, and are adjusted accordingly.
Conclusions
* The purpose of this paper has been to identify why there are strong arguments for using the scarce resources of countries in the CEE/fSU for establishing relevant and effective policies and programmes for HIV and AIDS. While it might have seemed self evident that countries have an interest in ensuring that effective responses are in place in practise this seems not generally to be the situation. But the arguments for policy reform and for innovative responses to HIV and AIDS are compelling, not least due to the fact that it is now generally known what are the components of a response that will be effective.
At the core of this response is a recognition that unless it is possible to access the population affected by HIV and AIDS, and unless it is possible to change risk behaviours, then societies will face escalating problems in the future. It is still possible in most countries of the CEE/fSU to avoid many of the social and economic costs of the HIV epidemic. But to do so means revisiting the issues, re-defining the problem in terms of what is needed for meeting the challenges, and reform both of what is done and how it is done.
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[i] The issues in this section are dealt with more fully in the following papers: -* Human Capital and the HIV Epidemic www.hivdev.org.uk
* Sustainable Development and the HIV Epidemic www.undp.org/hiv
* The HIV Epidemic: Why a Systems Approach is Needed www.undp.org/hiv
[ii] This section draws heavily on the following documents: -
Social Factors Fuelling the HIV Epidemic in Countries of Eastern Europe and the former Soviet Union* by Kasia Malinowska-Sempruch [OSI, undated]
Harm Reduction Policies Needed to Stem the Spread of HIV in Prisons in Eastern Europe and the former Soviet Union''' by Kasia Malinowska-Sempruch [OSI, undated]
HIV/AIDS in Ukraine: Situation Analysis [Analytical Report]*
International NGO AIDS Alliance [undated, draft]
[iii] A useful summary of the situation in the region, and in other developing countries, is the paper by Paul Deany, HIVand Injecting Drug Use: A New Challenge to Sustainable Development www.undp.org/hiv