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Defining neglected disease

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Abstract

In this article I seek to say what it is for something to count as a neglected disease. I argue that neglect should be defined in terms of efforts at prevention, mitigation and cure, and not solely in terms of research dollars per disability-adjusted life-year. I further argue that the trend towards multifactorialism and risk factor thinking in modern epidemiology has lent credibility to the erroneous view that the primary problem with neglected diseases is a lack of research. A more restrictive contrastive model of disease is endorsed as better suited to the definition of neglected disease.

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Notes

  1. The neglected diseases are sometimes called the neglected tropical diseases, but I do not propose to define ‘tropical’. Moreover I take it that what matters about these diseases is that they are neglected, not that they are tropical. Neglected arctic diseases would be no less objectionable.

  2. For example, this is the approach of Trouiller et al (2002).

  3. Assuming that the measure of health burden balances number of people affected and severity of effect in some reasonable way. Measuring health burdens is not the topic of this article.

  4. I am grateful to an anonymous referee for this point.

  5. Malaria is a good example of a disease whose neglect is contested: it does not feature on the WHO's list but other authorities, such as Trouiller et al (2002), count it as neglected. A definition of neglect would help decide such differences, if that matters.

  6. Would this definition be more robust if it identified the actor? I am grateful to an anonymous referee for raising this question. The answer is No, because neglect is a failure to act in a particular way, so there is no act, and hence no actor. We could identify the ‘agent’ of neglect as the person(s) whose failure to act counts as neglect, presumably because of a duty to act. But I think it is reasonable, in some circumstances, to say that neglect occurs without saying whose derogation of duty counts as neglect. You can say that a child has been neglected without knowing whose duty it was to look after the child, because there is a presumption that it is always somebody's duty to look after a child. I suggest that a similar presumption operates in the case of unpleasant diseases that are widespread despite being preventable or curable.

  7. Namely, tweaking the intellectual property regime to make the American drug market less profitable, but diverting part of the difference between old- and new-regime prices (presumably by a tax on generic drugs) to setting up a global organization to co-ordinate biomedical research (Reiss and Kitcher, 2009, pp. 277–280).

  8. I am grateful to an anonymous referee for pressing this point and educating me about penicillin.

  9. Because otherwise it would not be an investment, in the commercial sense, but some kind of charitable activity.

  10. Alfredo Morabia reserves ‘modern’ for the developments occurring from the 1980s to the present day, and calls the period 1945–1980 ‘classic’ (Morabia, 2004, pp. 121–122). I am rolling both periods into the term ‘modern’, because the important features for my argument are common to both.

  11. The most recent installment in this series of studies is Doll et al (2004).

  12. The black box approach has been charged with a lack of explanatory specificity (Vandenbroucke, 1988). An authoritative text book argues that Doll and Peto commit the error of supposing that attributable fractions could be summed, and should sum to 100 per cent, thereby overestimating the significance of their risk factors (Rothman et al, 2008, pp. 14–15). I have also discussed the black box approach more fully in another paper (Broadbent, 2011).

  13. Carter calls it the etiological standpoint (Carter, 2003). However, my own previous formulation (monocausal model) is preferred here as more precise. The view implies a numerical restriction on the number of defining causes to one (for reasons given in Broadbent, 2009, p. 303). Incorporating necessity and sufficiency into a multi-causal model is a non-trivial project.

  14. Except insofar as it helps identify a cause meeting those criteria.

  15. The same is true if the web is applied to the etiology of particular events rather than types of event.

  16. For detailed criticisms of the multifactorial model in general, including an argument that it represents an uncritical reversion to older ways of thinking about disease, see Broadbent (2009).

  17. Tuberculosis is not generally counted as a neglected disease: I am merely using it to illustrate the point that further R&D can be useful even when curative measures already exist.

  18. This point is discussed in Angel (2008).

  19. $102.07, according to Reiss and Kitcher (2009, p. 264).

  20. The contrast class may be partly or wholly counterfactual.

  21. I am grateful to an anonymous referee for alerting me to the distinction between these terms in medical contexts.

  22. There is a great deal more to be said both in defence of and objection to this model, which I omit here in favor of a focus on its application to neglected diseases. In particular, the model requires an independent definition of health to fix its contrast classes. This puts the model at odd with theories of health such as Christopher Boorse's, which seek to define health as the absence of disease (see Boorse, 1975; Kingma, 2007).

  23. (Farooqi and O’Rahilly, 2006). For a recent estimate of the relative contribution of genes and environment, see Wardle et al (2008).

  24. A good statement of that project is Marmot (2006). An excellent survey of the various possible causal connections between health and income is Deaton (2003) .

  25. Whether by preventing them from occurring or by inhibiting their action.

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Acknowledgements

I am grateful to Dan Brock, Alena Buyx, the audience at the Brocher Foundation-LSE Workshop on Neglected Diseases in December 2008, and especially to the anonymous reviewers for their many helpful comments and corrections. I am also grateful to the PHG Foundation, the Brocher Foundation and Sridhar Venkapaturam for supporting this work.

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    Alex Broadbent

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Broadbent, A. Defining neglected disease. BioSocieties 6, 51–70 (2011). https://doi.org/10.1057/biosoc.2010.41

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