The Dutch Response To HIV

Pragmatism and Consensus

Theo Sandfort

• Publisher: Routledge
• Year: 2002
• ISBN:
  9781135359744
• Edition: 1
• Topic: Medicina
• Subtopic: Política de salud

The Netherlands' response to AIDS is widely regarded as well organized and effective. This is largely due to the timely response to the threat of the disease, with a prevention programme starting in 1982. This Dutch example provides an instructive case study for other countries with relevance for policy makers now and in the future. The book documents and discusses Dutch prevention policy: most specifically the prevention policies and activities for various target groups; the focus on prevention research and studies on sexuality and health behaviour; and the emphasis on individual responsibility.

Chapter 1

Pragmatism and Consensus: The Dutch Response to HIV

Theo Sandfort

The way in which the Netherlands has responded to AIDS is widely regarded as well organized and effective. To a certain extent this response was possible because of some unique features of the Netherlands. At the time AIDS was first detected, a number of organizations already existed with sufficient knowledge and experience to meet the needs of groups most at risk for HIV infection. Before AIDS, there had already been several campaigns to promote health behaviour within the general population and even one on the secondary prevention of STDs. Furthermore, although the epidemic had a major impact on the lives of many people, AIDS did not develop into a major societal disaster and, relative to the small size of the epidemic, the resources available for a response were extensive. Virtually the entire Dutch population is insured for the cost of medical care. Finally, Dutch society is characterized by a liberal climate with a long tradition of tolerance and acceptance of different religious, ideological and political positions. Although the Dutch response to AIDS might to some extent be a consequence of this unique situation, the Netherlands also provides an instructive example for other countries. This book describes various aspects of the Dutch response to AIDS.¹ This introductory chapter presents a general overview of the major principles underpinning the Dutch policy response, epidemiology, the organizations involved in AIDS prevention and societal responses to AIDS.²

Pragmatism and Consensus

Pragmatism and consensus are the keys to understanding the way in which public problems are dealt with in the Netherlands. An awareness that decisions made by only a few are likely to be ineffective was an important guiding principle in public decision making back in the seventeenth century (Van der Horst, 1996). The regents at the time knew that as many parties as possible had to be involved in decision making if decisions were to be endorsed by the majority, and therefore likely to solve a problem.

Closely related to consensus is pragmatism. Except for values such as individual rights and tolerance, public decisions are not primarily directed by moral considerations. Policy solutions to public problems are primarily arrivedat on the basis of whether they are likely to be effective. A cornerstone of this pragmatism is the awareness that social ills are not always completely controllable and the best one can sometimes do is to try to contain them and to prevent them from getting worse. This principle of pragmatism is clearly present in Dutch policy responses to drug use. Although drug use—injecting as well as other forms—is illegal in the Netherlands, extensive needle exchange programmes had been developed before the onset of AIDS to prevent transmission of other infectious diseases. Furthermore, the use of hard drugs is combatted by accepting the use of so-called soft drugs like marijuana and hashish, and by targeting major dealers instead of the individual user.

Consensus and pragmatism also characterize the way in which the problem of AIDS has been understood in the Netherlands and the way in which it has been responded to (Van Wijngaarden, 1992). Ever since the first cases of AIDS were diagnosed, there has been a general awareness that AIDS is not just a biomedical problem, but also has major social and political dimensions, more so than other diseases. AIDS is not just a serious medical condition; it carries the potential for stigmatization and discrimination and it predominantly affects groups of people who already have a marginal position in society. The major aims of Dutch prevention policy were not simply the prevention of further infections and the development of adequate care, but included the prevention and counteracting of potential negative societal consequences of HIV/AIDS. In order for a policy to be effective, a multidisciplinary approach was required, involving the various groups affected by HIV/AIDS.

Neither the government nor the medical authorities dictated how transmission of HIV was to be prevented (Moerkerk, 1990). Instead, AIDS policy in the Netherlands resulted from private initiative in which various interested parties of different backgrounds and sometimes conflicting interests collaborated (Schnabel, 1989). This consensus approach was possible since, with the exception of the ‘general population’, all the groups involved were well-organized: the gay movement (which was fairly influential in Dutch society), the society for people with haemophilia, and even injecting drug users (through the National Federation of Junkie Unions). AIDS, in turn, resulted in the formation of new groups and societies such as the Dutch HIV Society.

In preventing HIV infection, the starting principle was that people are responsible for both their own and other people’s health and that moralizing doesn’t help: the government should refrain from interfering in people’s private lives. People’s basic human rights also had to be protected. Characteristic of the pragmatic approach was the rejection of legal regulations to control AIDS. Although the Netherlands has a Communicable Diseases Act dating from 1928, which makes the compulsory notification of certain diseases possible as well as the temporary quarantine of persons infected, this law was not applied to HIV. Measures based on freedom of choice were expected to be more effective than regulatory ones. Compulsory notification was thought likely to result in stigmatization and discrimination, and might possibly havecounterproductive effects. It could discourage members of high risk groups from seeking medical advice or treatment, or voluntarily choosing to have a test. The few legislative measures introduced as a consequence of AIDS were not of a restrictive nature, but of a promotional, supportive character, such as directives for planning of health care facilities and for subsidizing the provision of drugs (Roscam Abbing, 1988).

Pragmatism also underpinned the decision not to close the saunas and other public places where gay men meet and have sex. Although it was occasionally suggested that such venues should be closed, it was never clear to what extent sexual activities in these public places contributed to HIV transmission. Data suggest that most unprotected anal sex with casual partners occurred in private homes (De Wit et al., 1997). A further compelling reason not to close these venues was that closing them would result in the same amount of sexual activity in places where gay men would not be accessible for prevention efforts. Additionally, it was suggested that closing saunas might break the relationship of trust between gay men and the health care system, with potential detrimental consequences for public health.

One of the consequences of the consensus approach was that general population prevention campaigns came to focus not so much on condom use as on safer sex in general. Simply promoting condom use might have antagonized some groups in society, so safer sex included postponing sexual intercourse, restricting sexual contact to a mutually monogamous relationship, and practising other forms than penetrative sex. Although the promotion of safer sex is still the common denominator of most campaigns, over the years safer sex has become more closely associated with condom use, a phenomenon reflected in public perceptions of safer sex (De Vroome et al., 1994).

The promotion of condoms to the general public was initially also objected to by gay groups. It was suggested that such an approach might be confusing to gay men who were strongly advised to abstain from penetrative sex all together. For pragmatic reasons, gay men were included in general population campaigns at a later stage, by featuring gay couples in posters displayed in public places. The assumption was that this was the only way to reach gay men who could not be reached by more targeted kinds of prevention. In addition, the inclusion of images of homosexuality in general campaigns was felt likely to contribute to the reduction of stigmatization and discrimination.

Human Rights and HIV-Testing

Although legal regulations have not been a part of prevention policy, some idiosyncrasies in Dutch AIDS policy can only be understood by taking into account questions of human rights and the fundamental freedoms embedded in the Dutch Constitution. Central to the Dutch Constitution are principles of non-discrimination, the right to bodily integrity, and the right to privacy. In thecontext of health care, these rights translate into the principle of informed consent prior to any medical action, the right to confidentiality in the doctor-patient relationship, and the protection of professional confidentiality.

Infringements to these human rights are only possible under specific circumstances. Measures which might place restrictions on individual freedom can only be imposed after the social benefits of these measures have been demonstrated. Subsequently, the least restrictive alternative that could achieve the desired social benefit has to be given priority. Furthermore, restrictions have to be based on the law and should be exceptional (Roscam Abbing, 1988). The importance of the human rights perspective is reflected in the fact that of the three sections in the (former) National Committee on AIDS Control (NCAB), one was entirely devoted to ethical and legal issues (the other two were prevention and public education, and care and treatment).

The importance of the human rights perspective in relation to HIV/AIDS can best be illustrated in relation to HIV testing in the Netherlands. Following from the right to bodily integrity and the right to privacy, the basic principle is that serological testing can only be conducted on a voluntary basis and is subject to strict requirements of confidentiality. Informed consent is necessary before testing occurs, in whatever setting. These rights imply the right ‘not to know’ or not be informed involuntarily about one’s HIV status. Disclosing someone’s HIV status to third parties against the person’s will is only allowed if imminent and grave harm to others can be prevented by doing so.

This perspective on testing implied that testing without informing the people is not considered ethical and legal since blood samples can only be used for the reasons for which they were originally intended and for which donors have given their consent. This also applied to specific risk groups, such as sex workers, prison inmates and injecting drug users. Scientific research using bodily materials such as blood, which were gathered for other purposes, is allowed only if the people, from whom these materials came, do not object to this use.

This perspective has had important consequences for large-scale anonymous seroprevalence studies, preoperative testing, testing as part of assessment procedures in job applications, and testing for health care workers. When epidemiologists stressed the importance of reliable data on HIV prevalence, the official response was that since there was no evidence that a substantial spread of HIV was likely, such surveillance was not warranted. Some concluded that in this case the right to privacy had triumphed over the need for appropiate epidemiological data. Others questioned the relevance of these studies for health promotion. In consequence, epidemiological studies have only been carried out on a small scale and in selected groups, and subjects involved had to give their informed consent.

When in the late 1980s some surgeons demanded routine HIV tests prior to operations, the official response was that if the right precautions were taken, routine testing was unnecessary, given the small risks involved. HIV testing was not considered to be an adequate means of reducing the risk of infectionthrough needle stick accidents. Testing here was allowed only if the patient had given his consent.

Testing is not allowed as part of assessment procedures by job applications, since being HIV infected does not imply an inability to work and since transmission of HIV does not usually occur at the work place. The government has also rejected the testing of health care workers for HIV. Introducing HIV testing into the health care sector might lead to a false sense of security when the outcome of a test is negative, and possible over-reaction after a positive test result. Special measures for HIV infected health careworkers, such as not allowing them to continue to work, have been officially rejected as well. It was reasoned that the risk of patients being infected with HIV through invasive procedures carried out by infected health care workers was negligible compared with other risks involved in such procedures. The potential effect of these measures would not justify transgressing the rights of an individual health care worker.

Central to the Dutch perspective on testing are the potentially negative consequences of finding out that one is HIV positive. When in 1985 preparations were made to initiate screening in blood banks, a campaign was in fact undertaken to urge gay men to think twice before undergoing testing. Imple menting HIV testing on a large scale as a means in HIV prevention was, and still is, rejected for various reasons (Reinking, 1993). First of all, there is no cure for people who turn out to be HIV positive and an HIV test only reflects the situation at a given moment. A negative test result, moreover, might induce a false sense of security. Furthermore, since HIV cannot be transmitted in ordinary interactions in society, large-scale testing could result in unwarranted social unrest and divert people’s attention from education and prevention. In relation to prevention, one’s serostatus is assumed to be irrelevant: everybody has to practise safe sex. Avoiding infection is not only the responsibility of the person infected, but both people involved in a sexual interaction.

The advent of early medical intervention has only mildly affected general attitudes towards testing. Whereas before, testing was initially discouraged, there is a more neutral attitude now, in which balancing the various costs and benefits of knowing one’s HIV serostatus is recommended.

Epidemiological Situation

The first official cases of AIDS in the Netherlands were diagnosed in 1982 in gay men and in people who had received contaminated blood products. It is likely, however, that there were earlier unreported deaths caused by HIV (Goudsmit, 1997). As of January 1997, there were 4350 cumulative reported cases of people with AIDS. About 10 per cent of these cases consisted of women. Since the reporting of AIDS cases is voluntary, the actual number of people who have died should be assumed to be somewhat higher. Geographically, most Dutch cases of AIDS have been reported in the western, urbanized part of the Netherlands.

From a European perspective, the Netherlands, together with Austria, Belgium and the United Kingdom, are not as strongly affected by AIDS as France, Italy, Spain and Switzerland. However, the cumulative number of AIDS cases per million inhabitants in the Netherlands is substantially higher than in Germany, Greece, Ireland and Sweden. It should be realized, however, that comparing relative prevalences has its limitations since countries differ regarding the stage of the epidemic they have reached.

When the total number of new cases of AIDS per million people total population in 1996 is computed for all European countries, the Netherlands, with an incidence of 25 cases, is in the middle range of countries. The rate is clearly higher than in countries such as Finland, Austria, and Germany (with an incidence of 4,16 and 18 per million people respectively), but lower than in countries such as France, Portugal and Spain, with an incidence of 72, 81 and 162 per million people respectively (European Centre for the Epidemiological Monitoring of AIDS, 1996).

In 1992, the highest number of new cases of AIDS in one year, 509, was recorded. In 1996, when 342 new cases were reported, a significant decline was observed for the first time. This decrease in annual AIDS incidence, which is partly a consequence of the increasing use of new anti-retroviral therapies, has been observed in most European countries. In some countries such as Portugal and Spain, with a different epidemiological pattern, and in Poland and Romania, where the spread of HIV started later, the incidence is still increasing (Coates et al, 1996; European Centre for the Epidemiological Monitoring of AIDS, 1996).

In the Netherlands, as in some other countries, the relative contribution of the various transmission routes is changing (Houweling et al., 1994). At the start of the epidemic, 89 per cent of all new cases per year came in the category men who have sex with men. By 1996, this percentage had decreased to 64 per cent. This decrease masks the fact, however, that in younger cohorts of gay men the incidence of AIDS is increasing. Injecting drug users used to be the second most vulnerable group in the Netherlands, and 11 per cent of all AIDS cases belong to this category. Now, however, the cumulative number of reported cases of AIDS among heterosexual people is higher than among injecting drug users. The proportion of people who acquired AIDS through heterosexual transmission of HIV is slowly increasing, from 3 per cent of new cases in 1986 to 23 per cent in 1996. Of all people who acquired AIDS through heterosexual means, 337 were men and 225 were women. In about two-thirds of these cases, the person had a HIV-infected partner who belonged to another risk group, or came from a country where AIDS is more prevalent among heterosexual people. In about one-third of the cases, no clear transmission route, other than having had multiple sex partners, could be identified. Among people with haemophilia and people who have received blood prod-ucts, the incidence of AIDS has become very small; cumulatively they constitute 3 per cent of all cases. Cases of AIDS as a consequence of mother-child transmission constitute less than 1 per cent of the total number of cases. In an absolute, as well as a relative sense, gay men are still the most...