Tag Archives: AIDS

What can we learn from disease stigma’s long history?

Originally published at PLoS Speaking of Medicine

Although tremendous strides in fighting stigma and discrimination against people with HIV/AIDS have been made since the beginning of the epidemic, cases of extreme discrimination still find their way into the US court system regularly. Just this year, a man in Pennsylvania was denied a job as a nurse’s assistant when he revealed his HIV status to his employer. Even more appallingly, HIV-positive individuals in the Alabama and South Carolina prison systems are isolated from other prisoners, regularly kept in solitary confinement, and often given special armbands to denote their HIV-positive status. On a global level, HIV stigma can lead to difficulty accessing testing and healthcare, which will almost certainly have a substantial impact on the quality of an individual’s life. Legal recourse often rights these wrongs for the individual, but this kind of discrimination leads to the spread of false beliefs about transmission, the very driver of stigma. In the U.S., as of 2009, one in five Americans believed that HIV could be spread by sharing a drinking glass, swimming in a pool with someone who is HIV-positive, or touching a toilet seat.

Discrimination against people with HIV/AIDS is probably the most prominent form of disease stigma in the late 20th and early 21st centuries. But disease stigma has an incredibly long history, one that spans back to the medieval period’s panic over leprosy. Strikingly, in nearly every stage of history in reference to almost every major disease outbreak, one stigmatizing theme is constant: disease outbreaks are blamed on a “low” or “immoral” class of people who must be quarantined and removed as a threat to society. These “low” and “immoral” people are often identified as outsiders, on the fringes of society, including foreigners, immigrants, racial minorities, and people of low socioeconomic status.

Emerging infectious diseases in their early stages, especially when modes of transmission are unknown, are especially vulnerable to stigma. Consider the case of polio in America.  In the early days of the polio epidemic, although polio struck poor and rich alike, public health officials cited poverty and a “dirty” urban environment as major drivers of the epidemic. The early response to polio was therefore often to quarantine low-income urban dwellers with the disease.

The 1892 outbreaks of typhus fever and cholera in New York City are two other good examples. These outbreaks were both blamed on Jewish immigrants from Eastern Europe. Upon arriving in New York, Jewish immigrants, healthy and sick, were quarantined in unsanitary conditions on North Brother Island at the command of the New York City Department of Health. Although it is important to take infectious disease control seriously, these measures ended up stigmatizing an entire group of immigrants rather than pursuing control measures based on sound scientific principles. This “us” versus “them” dynamic is common to stigma in general and indicates a way in which disease stigma can be viewed as a proxy for other types of fears, especially xenophobia and general fear of outsiders.

The fear of the diseased outsider is still pervasive. Until 2009, for instance, HIV-positive individuals were not allowed to enter the United States. The lifting of the travel ban allowed for the 2012 International AIDS Conference to be held in the United States for the first time in over 20 years. The connection between foreign “invasion” and disease “invasion” had become so ingrained that an illness that presented no threat of transmission through casual contact became a barrier to travel.

What can we learn from this history? Stigma and discrimination remain serious barriers to care for people with HIV/AIDS and tuberculosis, among other illnesses. Figuring out ways to reduce this stigma should be seen as part and parcel of medical care. Recognizing disease stigma’s long history can give us insight into how exactly stigmatizing attitudes are formed and how they are disbanded. Instead of simply blaming the ignorance of people espousing stigmatizing attitudes about certain diseases, we should try to understand precisely how these attitudes are formed so that we can intervene in their dissemination.

We should also be looking to history to see what sorts of interventions against stigma may have worked in the past. How are stigmatizing attitudes relinquished? Is education the key, and if so, what is the most effective way of disseminating this kind of knowledge? How should media sources depict epidemiological data without stirring fear of certain ethnic, racial, or socioeconomic groups in which incidence of a certain disease might be increasing? How can public health experts and clinicians be sure not to inadvertently place blame on those afflicted with particular illnesses? Ongoing research into stigma should evaluate what has worked in the past. This might give us some clues about what might work now to reduce devastating discrimination that keeps people from getting the care they need.

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Optimism and the HIV/AIDS epidemic

Originally published at The Pump Handle

Recent biomedical advances in AIDS research have allowed political figures such as Secretary of State Hillary Clinton to proclaim that the phenomenon of a generation without HIV/AIDS is within reach. But how well-founded is this optimism? A recent editorial in The New England Journal of Medicine asks this very question and concludes that there is ample reason for scientific optimism but that the global resources needed to achieve the eradication of this illness are simply not being deployed properly.

Yet the science itself does not indicate that the possibility of the eradication of HIV/AIDS is immediately within reach. A vaccine for HIV proved successful in one trial in Thailand, but this is not enough to proclaim victory over the illness. At the same time, research on pre-exposure prophylaxis has proven encouraging and effective in some populations, but there is still a long way to go to establish the safety of these measures as well as their effectiveness in all populations affected by the epidemic. What’s more, certain social and socioeconomic factors still remain a serious barrier to care globally, and we cannot be exceedingly optimistic about the availability of novel treatments until we can ensure that people will actually have access to them.

Much of the scientific optimism about the possibility of eradicating HIV/AIDS derives from the July 16 2012, FDA approval of Truvada (emtricitabine and tenofovir disoproxil fumarate) for daily use as a prophylactic agent against HIV/AIDS. The approval stems from a series of recent studies, some of which demonstrate the efficacy of the drug in preventing HIV/AIDS when used prophylactically. The drug has been shown to be highly effective for prophylactic use in MSM (men who have sex with men) and among heterosexual men. Yet one study conducted in Africa suggests that Truvada for pre-exposure prophylaxis (PrEP) may not be an effective means of preventing HIV/AIDS among women. Researchers found no significant reduction in HIV-acquisition among women taking Truvada compared to the placebo group. The study begs the question of whether more research is needed before women start utilizing Truvada as a reliable prophylactic measure.

Several negative effects of the FDA’s approval are also possible. It remains to be seen whether provision of Truvada for PrEP diminishes use of condoms and other safe sex measures, contributing to a potential increase in STI’s other than HIV/AIDS. The emergence of antiretroviral-resistant strains of HIV/AIDS should be carefully monitored, even though one study of Truvada for PrEP reported low rates of newly resistant strains. Other drugs with lower potential for development of resistant strains, such as maraviroc-based drug regimens, should be tested widely, among heterosexual men and women as well as among men who have sex with men (MSM). Although the FDA’s approval is a step in the right direction, too much optimism can lead to complacency when more research, and more funding for more research, are still desperately needed.

Yet even in the probable event that our scientific optimism proves justified, the question remains: how should limited resources best be deployed? It is clear that there is still much need for funding for scientific studies in pursuit of an AIDS vaccine and for cheaper and safer drugs for PrEP that work in all populations. Yet it is equally important to evaluate the sub-populations in which the epidemic is growing or most recalcitrant and to provide these populations with better access to prevention and treatment. In the United States, rates of HIV/AIDS are actually rising in some populations, including young racial minorities and African American women. There is a growing HIV/AIDS crisis outside of urban areas and in the American South. One of the greatest challenges to reducing transmission rates is poor access to medical care. Low-income individuals, and especially women, with HIV/AIDS often go without medical care due to transportation challenges and competing needs such as childcare responsibilities. Investment in federal aid programs that provide social support for individuals with HIV/AIDS in the U.S. may go a long way in curbing transmission rates. Funding for similar programming globally must also be implemented.

There is in fact much cause for optimism about the possibility of the eradication of HIV/AIDS in coming generations. But we should be sure not to become too secure and complacent in the progress currently being made and take careful inventory of what remains to be done.

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