Compulsory testing for HIV in Hungary

Soc. Sci. Med. Vol. 43, No. 8, pp. 1199 1204, 1996

~ ) Pergamon 0277-9536(95)00371-1

Copyright ~ 1996 ElsevierScience Ltd Printed in Great Britain. All rights reserved 0277-9536/96 $15.00 + 0.00

COMPULSORY TESTING FOR HIV IN H U N G A R Y RENI~E D A N Z I G E R Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, Keppel Street, London WCIE 7HT, U.K. Abstract~ompulsory testing for the human immunodeficiency virus (HIV) has been a cornerstone of Hungary's AIDS prevention and care programme since 1988. This strategy is based on a two-fold public health rationale. Firstly, informing as many HIV positive people as possible of their serostatus is important for HIV prevention because infected people have a crucial role to play in preventing the further spread of the virus. Secondly~ the earlier an HIV diagnosis can be provided the greater the opportunity for delaying the onset of symptoms and for maintaining as high a quality of life as possible for the affected individual. For these reasons, and because compulsory testing appears to be widely accepted within Hungary as part of a comprehensive social welfare system which places equal emphasis on citizens' rights and responsbilities, the country's public health establishment has continued to resist pressure from international agencies and other external bodies which have urged Hungary to abandon compulsory testing in favour of voluntary testing based on individual informed consent. Any changes to Hungary's HIV testing programme which occur in the coming years are more likely to be a response to the country's changing epidemiological, social and economic conditions rather than to pressure from outside. Copyright ~) 1996 Elsevier Science Ltd Key words--HIV testing, AIDS programme, Etungary

INTRODUCTION The first case of A I D S was reported in HungaD in August 1985. Nine years later, out of a total population approaching 10.5 million there were 161 reported cases of A I D S and approximately ,140 known cases of HIV infection. Public health officials in Hungary attribute the country's relatively low HIV seroprevalence levels largely to the compulsory F[IV testing programme which has been in operation since 1988[1]. They are both puzzled and somewhat resentful of what is perceived as unjustified criticism of their approach to A I D S prevention and care. Hungary's A I D S prevention and care programme, and the central role which compulsory testing plays in it, can be seen as a product of the social, economic and cultural conditions which predominated in the country when government and health officials began to respond to the epidemic. Recently, these socio-economic conditions have begun to change as a consequence of the country's political transformation. Whether these changes will lead inexorably to a restructuring of the country's A I D S programme remains to be seen. The introduction of private health care, for instance, may ultimately restrict the enforceability of compulsory testing as state health authorities lose contact with growing numbers of people who opt out of the public system. Equally important, the growing emphasis on market values including labour and capital mobility, and the attendant increase in risk behaviours such as drug use and prostitution, may see an increase in HIV seroprevalence rates in Hungary such that the health system can no longer afford to provide the high

standard of care to people with HIV and A I D S which it currently offers. This would undermine much of the rationale behind Hungary's compulsory testing programme. The World Health Organization (WHO)'s position on H1V testing is unambiguous: " M a n d a t o r y testing and other testing without informed consent has no place in an A I D S prevention and control programme" [2]. At a consultation on HIV testing and counselling held in November 1992 by the W H O Global Programme on A I D S (GPA) participants concurred that mandatory testing should be eschewed for the following reasons: Because of the stigmatization and discrimination directed at HIV-infected people, individuals who believe they might be infected tend to go "'underground" to escape mandatory testing. As a result, those at highest risk for HIV infecion may not hear or heed education messages about HIV prevention. Testing without informed consent damages the credibility of the health services and may discourage those needing services from obtaining them. In any testing programme, there will be people who falsely test negative--for example, because of laboratory error or because they are infected but have not yet developed detectable antibodies to HIV. Thus, mandatory testing can never identify all HIV-infected people. Mandatory testing can create a false sense of security especially among people who are outside its scope and who use it as an excuse for not following more effective measures for protecting themselves and others from infection. Mandatory testing programmes are expensive, and divert resources from effective prevention measures [2]. To this has been added a further argument contained in the Statement from the Consultation,

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that "there are no benefits either to the individual or for public health arising from testing without informed consent that cannot be achieved by less intrusive means, such as voluntary testing and counselling." WHO is not alone in rejecting compulsory testing. As Scheper-Hughes has noted, there exists "an almost uncanny (because otherwise so rare) consensus in the social science and international medical communities with respect to thinking about, and searching for appropriate responses to the global AIDS catastrophe...Any public health initiatives even appearing to be collective, universal, or routine (such as widespread and repeated HIV testing for sexually active and other 'high risk' populations) are dismissed as counter-productive (i.e. 'driving AIDS underground') and condemned as a dangerous infringement on individual rights" [3]. Despite the weight of this apparent consensus the health authorities of some countries have continued to operate compulsory testing programmes. Their persistence in the face of strong international opposition calls for a closer examination of the rationale behind these programmes. This article focuses on HIV testing in Hungary and asks to what extent Hungary's compulsory HIV testing programme is justified within the particular social, political and epidemiological context in which it is implemented.

HIV TESTING IN HUNGARY

The first HIV infected person was identified in Hungary in August 1985 since which time a range of measures has been taken to prevent and control the further spread of the virus. All blood donations have been screened since July 1986. Information on risk reduction has been disseminated to the public at large, including the mass distribution of an information leaflet to households across Hungary in 1987. In recent years the AIDS information campaign has gathered considerable momentum, with an unprecedented level of activity emanating from the National Institute for Health Promotion. In 1994 the government provided three million forints ($30,000) for an ad campaign including new posters for Metro stations, buses and billboards, television spots, and a National Conference on AIDS which drew 500 participants. In common with other countries of central and eastern Europe, Hungary lacks a strong tradition of advertising and social marketing, and this is evident in some of the information materials which have been produced. For example, during the late 1980s some of the most popular images in the AIDS information material which was distributed were crosses (denoting death) and skeletons. Over time the tone of the campaign has changed such that the emphasis on fear has been replaced with a more straightforward,

informational tone. While this represents an improvement, there has as yet been little use of humour, for example, or innovative techniques in the information campaign. Educational measures include an innovative programme initiated by the Semmelweis Medical University Institute in Budapest in which medical students visit secondary schools to talk with pupils about HIV, AIDS and related issues without the classroom teacher present during discussion. To date, some 100,000 secondary school students have learned about HIV and AIDS through this scheme [4]. AIDS education has also been developed by the small but growing non-governmental sector in Hungary. While the country's main gay organisation, Lambda, has been responsible for most HIV/AIDS information, education and support directed at the homosexual population, the Hungarian AIDS Foundation has concentrated on other hard-to-reach groups [5]. In an effort to provide prostitutes with information and education about HIV and AIDS, for instance, the Foundation provided 1600 taxi drivers stickers and basic information on HIV prevention which they were encouraged to pass on to customers, including prostitutes and their clients. In addition to these different strategies, health authorities in Hungary have devised a comprehensive programme of targeted compulsory HIV testing and follow-up. A Ministerial Decree passed in 1988 requires compulsory HIV testing of: blood, organ, tissue and sperm donors; patients attending sexually transmitted disease (STD) clinics; prostitutes arrested for soliciting; prisoners; juveniles arrested for any criminal offense; injecting drug users at treatment centres; and the partners of infected people. Voluntary named linked testing is also offered free of charge at a variety of sites and since 1992 there has been limited but increasing availability of anonymous testing for those who seek it [6]. From 1990 great efforts were made to increase and improve the provision of pre- and post-test counselling in Hungary, for example through a series of HIV/AIDS counselling training workshops for doctors and nurses working in STD clinics [7]. All confirmed cases of H1V infection and AIDS are reported to the National Institute of Hygiene in Budapest. Reporting of HIV seropositivity is not carried out by name but nor is it strictly anonymous, as reports include details of the infected person's sex, date of birth, nationality, the first two letters of his or her first and last names, and the town or village where s/he lives. All cases of AIDS are reported by name. As of September 1994 Hungary had a cumulative total of 161 reported cases of AIDS and roughly 440 known cases of HIV infection which had been identified through compulsory testing. Approximately 76% of the infected population are men who have sex with men; 7.6% are women. Injecting drug use is currently not widespread in Hungary chiefly

Compulsory HIV testing in Hungary because most hard drugs are prohibitively expensive. Fears have been expressed recently however that there will soon be an increase in the use of the relatively cheap and easily produced Polish heroin known as kompot [8]. According to the National Institute of Hygiene, over 80% of Hungary's reported AIDS cases have occurred among people who had previously been identified as HIV positive through the compulsory testing scheme. The primary importance of this figure lies in its implications for the prevention and care follow-up activities pursuant to the identification af H1V infection in Hungary. Contact tracing constitutes a major element of this follow-up. All persons identified as HIV infected are asked to reveal the names and addresses of their sexual contacts so that these contacts can be called in for testing, provided with information and counselling on HIV prevention, and offered medical treatment where this is appropriate. In many cases, concern for the well-being of a partner will incline the index person to reveal his or her partner's(') name(:~). In other instances, however, health workers may persist in questioning reluctant patients until they eventually provide the names of their partners. The methods adopted to trace people who may be at risk of infection need to be evaluated within the total context of Hungary's AIDS prevention and control programme. The programme is based on a two-fold public health rationale which aims to take account both of the public health in general, and of the specific needs of infected individuals. According to Dr Istvan Domok, Deputy DirectorGeneral of the National Institute of Hygiene in Budapest, it is the responsibility of the medical profession to take all steps necessary which are with in the law to "break the chain of infection". These steps include identifying as many HIV infected and at-risk persons as possible through testing and cont~.ct tracing and providing them on a one-to-one ba:~is with information and counselling on avoiding the risk of HIV transmission[9]. Public health authorities believe that those who are already infected with H]V have a major role to play in reducing the spread of infection. They are not seen as having a greater moral responsiblity for HIV prevention but, because t0r them HIV is more of an immediate reality than it is for their HIV negative counterparts, they zre considered to be more inclined to take effective precautions to prevent HIV spread. Thus, while information and education on HIV have been provided to the population as a whole, more intensive efforts have been targeted at those who are infected or who have AIDS. This strategy is credited by many in Hungary with maintaining the country's relatiw:ly low HIV seroprevalence levels. As opponents of compulsory testing are quick to point out, there are to date no methodologically rigorous studies to confirm that compulsory testing has indeed led to Hungary's relatively low HIV levels.

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By the same token, there is currently a dearth of evidence to falsify this hypothesised relationship. Because the system appears to be working, because it provides a channel for ensuring appropriate treatment and care for people with AIDS and HIV, and because it fits comfortably within Hungary's paternalist social welfare system, the health authorities in Hungary have defended their compulsory testing programme against external pressure for reform. The provision of a high standard of social and medical care for people found to be HIV infected is central to the compulsory testing programme. Once identified, they are provided with regular follow-up including advice and support for healthy life styles, and in some cases social welfare assistance such as help in finding accommodation. Anti-retroviral therapy is also offered where it is appropriate to slow down the onset of symptoms as is the early management of opportunistic infections. All persons with AIDS requiring hospital treatment are admitted to the St Laszlo Hospital for Infectious Diseases in Budapest on either an out- or in-patient basis, as necessary. This is the only hospital in the country currently authorised to treat patients with AIDS. St Laszlo accommodates its AIDS in-patients in a separate ward comprising eight rooms with two beds each. A further room provides temporary accommodation to infected persons who have been made homeless and who are looking for housing. Social welfare cases such as these are usually passed on for action to Pluss, the HIV positive persons' self-help group which currently has approximately ninety members. The standard of accommodation and medical care offered to AIDS patients is higher than that provided to most other patients at St Laszlo. This "positive discrimination" reflects the seriousness with which the epidemic is viewed in Hungary despite the presence of other pressing medical concerns--such as cardiovascular disease which accounts for 50% of deaths [10]. It also consitutes an important element within the wider AIDS prevention and control programme. By offering superior conditions and treatment and a supportive environment at the hospital the authorities hope to encourage people who think they may be HIV positive but who are not covered by the compulsory testing scheme to come forward for voluntary testing. Moreover, the comprehensive care offered by the hospital to its H1V and AIDS patients provides something of a haven for patients who do not trust their general practitioner to respect medical confidence or to treat them with sensitivity. There is widespread cynicism in Hungary regarding the protection of medical confidentiality especially by general practitioners. In contrast to this, many members of Pluss appreciate greatly the services provided at St Laszlo, including the discretion of the medical staff who respect their patients' dignity and their right to privacy [I 1].

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To what extent are the arguments against compulsory HIV testing which are so widley espoused in the liberal democratic world applicable in the Hungarian context? In answering this question it is important to remember that the rapid social, economic and cultural changes occurring in Hungary may have important implications for the future of the country's HIV prevention and care efforts, including its testing programme. With this caveat in mind, it is timely to consider the relevance of the statement produced by the WHO consultation on testing for HIV for current policy and practice in Hungary. 1. Because of the stigmatization and discrimination directed at HIV-infected people, individuals who believe they might be infected tend to go "underground" to escape mandatory testing. As a result, those at highest risk for HIV infection may not hear or heed education messages about HIV prevention. In Hungary, as elsewhere, many individuals who are infected, or who believe they may be infected with HIV, fear stigmatization and discrimination. Nevertheless, the great majority of at-risk individuals continue to be tested within the compulsory testing scheme, as evidenced by the fact that over 80% of reported AIDS cases had been previously identified and registered as cases of HIV infection through the compulsory testing scheme. All people who are tested have regular contact with health services and access to information messages about HIV prevention. Part of the reason that the testing programme has to some extent circumvented the problem of at-risk individuals going underground, and has succeeded in making contact with such a large proportion of the infected population, is undoubtedly because the groups required by law to undergo testing are largely 'captive'. Prisoners, arrested juveniles and arrested prostitutes are captive in an obvious sense~ but even STD patients have until recently been ~captive' in so far as there were no private STD clinics so that anyone seeking examination and treatment for a suspected STD would have no option but to undergo testing for HIV as part of the medical check-up offered by state-run STD clinics. With the gradual privatisation of some of the country's health services and the establishment of new private STD clinics it will soon be possible for growing numbers of people to avoid compulsory testing by opting out of the state-run health care system. Research will be vital over the coming months in order to determine the extent to which health system reform, including privatisation, limits the efficacy of the current HIV testing programme. 2. Testing without informed consent damages the credibility of the health services and may discourage those needing services from obtaining them. Compulsory testing per se evidently does not appear to undermine the credibility of the health service in Hungary. Interviews with members of Pluss

indicate that while some primary health care providers in Hungary may lack credibility because of frequent breaches of confidentiality, health workers in the field of HIV and AIDS enjoy a relatively high level of trust and respect among their patients. Interestingly, unlike some countries where hospital staff are paid a substantial bonus for working with AIDS patients, in Hungary this is not the case. A relationship of mutual respect seems to prevail at St Laszlo which currently houses the only AIDS in-patient clinic in Hungary. In a liberal democratic context, compulsory testing may be regarded both as an unacceptable infringement on personal freedom and as self-defeating in public health terms. Where compulsory testing is enforced in the face of mass opposition, it will almost certainly alienate those most in need of medical care and support. In Hungary, however, there is a long-established tradition of social welfare which places equal emphasis on citizens' rights and responsibilities. Compulsory testing appears to be widely accepted within this framework as a measure which is required for protecting the public health while at the same time benefiting people living with HIV from the time infection is first detected through to the terminal stages of HIV related illness. There has been little public debate about testing within Hungary itself, chiefly because compulsory testing remains relatively uncontentious. The gay community has not specifically addressed HIV testing although there is plenty of scope to do so, as there are at least seven differenet gay rights organisations in existence. These organisations are much more concerned with abuses of the contact tracing programme which has reportedly been used to identify gay partners of homosexual men, who have then allegedly been harassed and even blackmailed. It is possible that the gradual marketisation of Hungary's economy and society may lead to a wider espousal of the liberal values associated with possessive individualism and corresponding demands for individual choice in the context of HIV prevention and care [12]. Research will be necessary to establish whether such changes occur and, if so, to evaluate their impact on Hungary's AIDS programme. 3. In any testing programme, there will be people who falsely test negative--for example, because of laboratory error or because they are infected but have not yet developed detectable antibodies to HIV. Thus, mandatory testing can never identify all HIV-infected people. While the stated aim in Hungary is "to break the chain of transmission of infection by all possible legal means" [13]. it is widely recognised and acknowledged that--as with any system of HIV testing--it is not possible to identify all HIV infected persons. However, because the level of HIV prevalence is still relatively low and the great majority of cases of infection are transmitted through sexual contact, the

Compulsory HIV testing in Hungary compulsory testing scheme implemented at STD clinics, combined with an efficient contact tracing system, ensures that a large proportion of infections have been detected. Clearly, however, this efficiency would be threatened by widespread provision of private STD care coupled with a significant increa:ie in HIV prevalence. 4. Mandatory testing can create a false sense of security especially among people who are outside its scope and who use it as an excuse for not followingmore effectivemeasures for protecting themselves and others from infection. In every society there are people who, for one reason or another, view themselves as beyond the ri,;k of HIV infection----either because they do not fzll within those groups who are tested compulsorily, or because they have not been targeted in HIV information campaigns, or because they have had r~o contact with persons directly affected by HIV ar,d consequently view the epidemic as an abstraction. This attitude is dangerous, whatever its cause. It c~.n only be reversed through effective information arid education programmes which emphasise that risk is behaviour related, and through freely available artd accessible voluntary H1V testing facilities. Information, education and voluntary testing are each as important to Hungary's AIDS prevention programme as is the compulsory testing scheme. 5. Mandatory testing programmes are expensive,and divert resources from effective prevention measures. Mandatory testing consumes considerable resources, yet Hungarian health authorities clearly consider this to be a cost effective component in their AIDS prevention and care programme. It is worl:h noting that recent moves to introduce compulsoJ:y testing for pregnant women were successfully opposed by top health officials and senior politicians, including the Permanent Secretary of State fi)r Health, on the grounds that few if any cases of HIV infection would be identified in this way and thus it would represent an unacceptable waste of limited resources. In contrast, compulsory testing among the groups listed in the Ministerial Decree of 1988, combined with contact tracing and consiste~at follow-up treatment, are perceived to have co~atributed significantly to the limited success of the country's prevention and care programme. It must be recognised, however, that the cost effectiveness of Hungary's testing and follow-np programme depends crucially on the fact that there is, as yet, relatively low HIV prevalence in Hunga::y which means the health authorities can offer all those who test positive comprehensive follow-up treatme:at and care. If HIV transmission increases significantly the health care system may not be able to maintain the current standard of HIV/AIDS care which in turn may undermine much of the rationale for the curre:at testing programme. 6. There are no benefitseither to the individual or for pubic health arising from testing without informed consent that

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cannot be achieved by less intrusive means, such as voluntary testing and counselling. In the context of widespread discrimination, combined with poor protection of confidentiality, it is unlikely that large numbers of people would come forward for voluntary HIV testing in Hungary unless it were offered on an anonymous basis. Anonymous testing would not, however, allow for the comprehensive follow-up to testing which the current testing programme is based upon, including, for instance, contact tracing based on provider referral [14]. Clearly, it is vital to improve protection of confidentiality and at the same time to take all possible steps to reduce stigmatisation and discrimination against HIV positive people and people with AIDS. Achieving these ends will require considerable time and resources which are not always available [ 15]. Introducing greater respect for medical confidentiality requires a reversal of attitudes and practices which have developed over many years. Legal sanctions for breaches of confidentiality already exist and will be strengthened by new data protection legislation currently passing through parliament. As in other countries, however, recourse to legal remedies is rarely taken because of their inappropriateness in the case of AIDS: court proceedings drag on for many months, even years, and result in even greater publicity around a person's serostatus. Medical professional associations may thus wish to reconsider the value placed by members of the profession on confidentiality, particularly perhaps in the context of H1V and AIDS, and to develop appropriate codes of ethical practice and possible sanctions to ensure that medical confidentiality is protected as far as possible. In the context of continued discrimination in Hungary, combined with the poor protection of medical confidentiality, it is unlikely that voluntary HIV testing programmes would attract significant numbers of people. For this reason, health authorities have chosen to continue operating a compulsory testing programme as the best means available for ensuring contact with a relatively high number of people who may be or are at risk of infection.

CONCLUSION

Improving the protection of medical confidentiality and reducing societal discrimination represent just two of the many pressing concerns facing Hungary's health workers and policy makers. Considerable investment of resources will also be required to improve the further provision of pre- and post-test counselling so as to maximise the benefits of HIV testing, whether it be compulsory or voluntary. Prior to 1990 very little if any attention was paid to the need for counselling among people being tested for HIV. Health workers are now grappling with this

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legacy, amidst many other competing demands on their limited time and resources. Social trends in Hungary indicate that HIV prevalence may soon increase significantly. This is owing in part to a significant increase in prostitution, particularly in Budapest, caused partly by the recent influx of women from neighbouring countries seeking work in a city that has become known in some circles as "the Bangkok of Europe". In addition, there is the possible increase in injecting drug use as Polish-style kompot gains popularity in Hungary. If the numbers of HIV infected people and people with AIDS increase significantly over the coming months and years, it will be difficult to maintain the standard of health care currently provided to HIV and AIDS patients at St Laszlo Hospital. A degree of forward planning is vital if the delicately balanced programme of testing, contact tracing, treatment, and care is to remain intact. Ensuring the viability of Hungary's AIDS prevention and care programme within a rapidly changing social and economic environment remains a priority for many of the country's health officials. To achieve this they will require considerable international and bilateral support. In many cases this calls for a reversal of existing attitudes which so far have served to marginalise Hungary because of its compulsory testing programme. Voluntary testing may gain importance in Hungary's AIDS prevention and care programme over the coming years, not because of international pressure but rather as a consequence of social, economic, cultural and epidemiological changes. A rise in HIV seroprevalence, increased provision of private health care, and the gradual replacement of social welfarism by the liberal-democratic values of individual freedom and personal choice may combine to transform the country's approach to AIDS prevention and care. In this situation, testing by voluntary informed consent could become the norm. Until such change occurs however, Hungary's policies and programmes should be assessed within the specific context in which they were introduced and are being implemented.

Acknowledgements--Research for this paper was made possible by a grant from the Economic and Social Research Council (Grant Number R000234585). The author would like to thank Denes Banhegyi, lstvan Domok, the late Phil Strong and Gill Walt for their very helpful comments on an earlier draft of this paper. Responsibility for the content of this article remains that of the author alone. This article is dedicated to the memory of Phil Strong.

REFERENCES

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13. Ret,iew of H I V / A I D S Poli¢T, Programmes and Situation in Hungary by March 1993, National Institute of Hygiene, Budapest, Hungary (undated). 14. Interview with Jozsef Schlammadinger, Department of Legislation and Administration, Ministry of Welfare, Hungary, 22 September 1993. 15. Easterbrook R. and FitzSimons D. ls the collapse of communism fuelling HIV? New Scientist, 22 August 1992.