Public health, civil liberties, and tuberculosis

How society encourages compliance reflects society's approach to the vulnerable

Drug resistant tuberculosis is a global health threat. Perhaps because of the size and urgency of the threat and the fact that vulnerable populations are most affected by the disease, some control programmes include coercion. The responses to this threat reflect how society views those on the margins, who are vulnerable—perhaps homeless, stateless, or psychologically disturbed. When treatment compliance is required for public health reasons (to prevent the development of drug resistant strains) how society encourages compliance reflects as much on society itself as it does on the irresponsible, poorly compliant individual.

A tension has always existed between the protection of individual civil liberties and the protection of public health. In the liberal era of the 1960s and 1970s somewhat draconian approaches to the mentally ill, for example, were questioned. Legislation was amended to put individual patients at the centre, to emphasise their rights, and to provide them with greater legal protection. Detention of the mentally ill became dependent on a determination of the threat they posed to themselves or others. Historically a similar approach has been taken to isolating those with communicable diseases, so that detention of individuals with notifiable diseases has depended on an assessment of the threat they pose to public health. People with tuberculosis who do not adhere to treatment are at risk of both relapse and developing drug resistant tuberculosis, but the risks are unpredictable.1

In London tuberculosis notification rates have increased over the past decade, and so have rates of drug resistant tuberculosis. 2 3 Many in London are looking to New York to draw lessons from the success of the tuberculosis programme there.4 The New York City epidemic of the late 1980s and early 1990s was halted and reversed through substantial investment, improvements in surveillance and infection control, and the expansion of systems to encourage treatment compliance.5 Coercion was also used. In 1993 a New York City health code was amended to authorise the city's commissioner of health to detain any non-infectious individual “where there is substantial likelihood … that he or she cannot be relied upon to participate in and/or to complete an appropriate prescribed course of medication for tuberculosis.” The authority to detain individuals was shifted from depending on an assessment of threat posed to an assessment of treatment compliance. This represented a significant shift in the balance between civil liberties and state authority. Since the amendments were adopted in New York more than 200 non-infectious patients have been detained, many for long periods, some for over two years.

In England and Wales section 37 of the Public Health (Control of Disease) Act 1984, which allows a local authority to apply to a magistrate to have a person suffering from a notifiable disease detained, has only rarely been used in recent years and almost always for tuberculosis.6 For a person to be detained they must pose a serious risk of infection to others. The Public Health (Infectious Diseases) Regulations 1988 stipulates that when the act is applied to individuals with tuberculosis their disease must be “of the respiratory tract in an infectious state.” Nevertheless, the act allows a magistrate to extend the period of detention in hospital “as often as it appears to him to be necessary.” It is unclear, therefore, whether the act simply covers detention of infectious individuals or can be used to also detain non-infectious individuals who may potentially pose a public health threat in the future (because of poor compliance with treatment, for example). This raises the question of whether prolonged detention of non-infectious individuals is legally sound. One recent case of a detention order for six months, highlighted by the media,7 illustrates the tensions between public health protection and civil liberties, but it should also draw attention to the inadequacy of support available for some patients in the community and the lack of appropriate residential facilities for persistently non-compliant patients.

London has an inadequate tuberculosis control programme. Methods to enhance treatment compliance are underused, underfunded, mired in bureaucracy, and lacking in coordination. There are too few community based programmes offering compliance incentives such as food or travel tokens or community based treatment supervision. Before detention is resorted to, practical (and cheaper) alternatives should be available. If an order for detention is sought then details of attempts at less restrictive alternatives should be presented to the magistrate. Moreover, an explicit objective examination of the potential threat posed by each non-compliant individual should be made and legal representation made available for those at whom the order is directed. When prolonged detention is envisaged an automatic, formal process of review should be instituted analogous to that under mental health legislation, and appropriate facilities with multidisciplinary support made available.

If public anxiety rises, and this is allied to physicians' and public health officials' frustration over failures to ensure and monitor compliance, calls for detention of non-compliant individuals will be heard loudly, just as they were in New York. These calls for coercive measures, where individuals fail to recognise their social obligations, need to be tempered with a coordinated approach which supports individuals with tuberculosis. Both civil rights and public health can be protected, but the emphasis should be on resource and organisational requirements, rather than coercion.