Disease-Related Stigma and Discrimination: Worse than Disease Itself?

This editorial takes off from Jore-Annie Rico’s article on stigmatisation and discrimination relating to HIV/AIDS. Rico notes that stories of HIV/AIDS have contained many tales of insurmountable agony and hopelessness and that these sad tales have been perpetrated by a pervasive culture of stigma and discrimination. Indeed, stigma and discrimination relating to the disease in many countries have not waned even if the availability of antiretroviral (ARV) medication has had a great impact on the management of the condition. In many countries, the successful impact of ARV use has not convinced leaders that it is time for them to relax migration and travel policies that are perpetrated by a misguided fear of people suffering from HIV/AIDS. Infected people continue to be shunned by those who exaggerate the dangers relating to the disease, whether they be individuals or official governments. People continue to be misinformed, because channels of communication have not always been efficient and effective, or because the need to protect privacy and confidentiality sometimes gets in the way. Given the prevailing situation, the effort to minimise the societal burdens imposed by HIV/AIDS-related stigma and discrimination continues to be difficult. The problems relating to stigma and discrimination could actually be so much more challenging to manage than the disease itself that one needs to give them attention as a separate phenomenon. We appear to have reached a point where stigma and discrimination constitue a distinct disease that requires a distinct cure.

Rico’s article is significant not only for drawing attention once again to ethical issues relating to stigmatisation and discrimination but also for the reference to dimensions that may have eluded sufficient notice in the past. The Philippines was one of the first countries to try a brave approach to providing a face to the HIV/AIDS epidemic in the 1980s. Emboldened by the American success with Magic Johnson, the popular basketball celebrity, the Department of Health of the Philippines embarked on a search for a willing patient who could be an effective agent for public education. By being open and available to public scrutiny, the model was also expected to help unravel the mystery surrounding the disease that fuelled fear, stigma and discrimination. The search yielded a 19-year-old sex worker, Sarah Jane Salazar, who was then designated as an HIV/AIDS educator and paid to do her job. Compared to the well-established super rich basketball superstar that was Magic Johnson, Salazar was very young then and economically under-resourced. She was emotionally and socially immature, and lacking in education and productive skills. In hindsight, it is easy to say that the choice represented the very evils that the employment of a model was meant to correct. But the choice also represented ethical pitfalls, some of which are mentioned in the article exploring the impact of stigma and discrimination on treatment-seeking behaviour.

In the first place, the plan to recruit Salazar should have taken into account her own health interests. As she was a patient herself, the least that could have been done for her was to make sure that her own health interests were advanced by her recruitment. The plan included the grant of financial benefits to Salazar. However, putting her financial interests into the equation could only have facilitated the exploitation (rather than the improvement) of her economic situation. The offer of money under such circumstances constituted undue influence that a person in her position would very easily have overlooked.

Salazar’s decision to accept the offer to be an HIV/AIDS educator could have been made willingly—that is, without her having felt overt pressure. However, a number of factors could have led to her decision without the benefit of adequate understanding. Moreover, the state of public anxiety over the nature and dangers of the disease was such that the capability of someone in her position to anticipate the full impact of her involvement would have been severely undermined. Her evaluation of the risks would have been obscured by her preoccupation with the material incentive provided to her in...