by Richard Parker*
In the COVID-19 pandemic, the history of the HIV/AIDS epidemic emergence and responses offers lessons for reflecting on the current challenges and risks we face. The first lesson is to stress that testing – a civil society demand – is much more than a simple biomedical technique. There are always political dimensions that involve risks in terms of appropriate or inappropriate use. No wonder, the human rights perspective has always been and must remain a priority to guarantee and promote people’s dignity.
During the first decades of AIDS, when there was no effective treatment, HIV testing was widely used to oppress those diagnosed with the virus. Dismissal, confinement, and eviction were commonplace, with no benefit to people who tested positive. For this reason, activists and organizations such as ABIA have historically fought against the abuses of testing and advocated for the centrality of human rights as a necessary principle to guide policies and practices related to testing.
Given these risks, at the beginning of the HIV/AIDS epidemic, it took a huge effort within the most affected communities to build a culture of solidarity in regards to testing. It was essential to make them aware of the importance of adopting practices to remain negative or to protect their partners in case of infection. This ethic of solidarity (and citizenship) was especially important because it allowed us to move beyond an exclusively self-centered perspective – “I will protect myself! – to build the notion of solidarity practices – “I will protect my peers and my community!”
It is in this sense that the concept of safer sex (or harm reduction) had to be built as a “community practice”. I would like to refer to a classic essay by Simon Watney, ‘Safer Sex as Community Practice’, which until today is one of the most insightful and inspiring things written about the gay community’s response to AIDS at the beginning of the epidemic: he spoke of safe sex and not of testing, but the principle is the same, that is, the adoption of practice not simply to protect you, but to protect others, the community.
With the supply of antiretroviral drugs starting in 1996, history has changed little by little but, even so, it remains restricted to the contexts where there is guaranteed access to the drug as a right of citizenship. Until today, after 40 years since the emergence of AIDS, almost half of the HIV-positive people in the world do not have this right, despite the policy of “testing and treating” being promoted by WHO and UNAIDS as a policy for all. We are still far from universal access to testing, which represents an enormous issue for facing up to the epidemic because it alienates millions of people from a human right, breaking this logic of collectivity and community. No epidemic or disease can be fought with dignity and fully in the midst of exclusion.
The history of AIDS shows us that testing can be a powerful positive tool, but it can also be used to oppress and discriminate. In times of neo-fascist governments around the world, the risks of abuse and violation of human rights by these governments are immense. Indeed, Brazil’s president himself, Jair Bolsonaro, spread the idea of confinement of elderly people and those with pre-existing diseases, a population contingent that, excluded from the supposed ‘healthy majority’, would threaten the economically active and productive population. Also in the U.S., the Trump administration is already forcing people into quarantine by the Department of Homeland Security because they are ‘sick’ with COVID-19. In the field of biopower, the risks are multiple. The response to COVID-19 cannot re-edit practices that violate human rights, operating from blame and stigma, under the risk of the elderly, people with diabetes and hypertension — also more vulnerable to the new coronavirus — becoming today’s version of what gays were during the early days of the HIV/AIDS epidemic.
To do so, one should not limit the response to the new coronavirus to testing, nor operate according to a logic of separation or opposition between prevention and treatment. On the contrary, these are aspects that should be valued and projected together, refuting any gap between these two dimensions and investing in the articulated and comprehensive relationship (in the sense of the principle of the integrality of our Universal Health System itself). Prevention and treatment are historical battles, which complement each other. One of the great lessons of AIDS is the recognition of this fundamental link. Equally, it should be stressed that no health problem can be viewed with stigmatizing and discriminatory tendencies that divide the world between “us” and “them,” “healthy” and “sick. The response to HIV/AIDS has taught us that languages that segregate and leave people out are incompatible with the principles of solidarity and undermine access to health.
Unfortunately, these principles do not seem to be part of Mr. Bolsonaro’s list of values. On March 15th, violating the isolation he had been recommended while his coronavirus test results were not ready, the president physically interacted and took part in a supporters’ demonstration in the country’s capital, Brasilia. It was a doubly reckless act: first because he failed to comply with the medical recommendation endorsed by the scientific community, exposing third parties to the risk of infection; and second, because he stated the next day, when questioned about the act, that “if I was to be contaminated, that would be my responsibility and nobody has anything to do with it”. It was a completely mistaken attitude, which demonstrates his lack of consciousness and empathy with others, even his collaborators. When self-centered attitudes like this come from the head of state, we have an enormous disservice to efforts of facing up tp COVID-19 as it creates divisions rather than bridges for dialogue and solidarity. By showing concern only for himself, Bolsonaro feeds the logic of carelessness and contempt towards others. If the history of AIDS has taught us anything, it is that this kind of approach, even if accompanied by sophisticated biomedical resources and modern testing and treatment techniques, leads only to resounding failure. It is necessary to look around to capture the social and economic complexities inherent to any society.
Preventing, testing, treating and sheltering, while taking into account social and economic aspects, must be crucial elements to avoid known mistakes, especially in this initial period of the COVID-19 pandemic, whose inevitable fears can lead to rash, uninformed and damaging decisions.
Civil society participation is once again crucial to help combat COVID-19 to establish dialogue with managers and authorities and to demand effective measures, aiming at the strengthening of the SUS. Thus, we also have an opportunity to re-edit our achievements and contribute to an efficient response, based on human rights and solidarity, principles that are more necessary than ever in a scenario of an extreme-right government that not only despises them but also makes a point of reinforcing stigmas highly vulnerable to the impetus of biopower.
* Richard Parker is the President of the Brazilian Interdisciplinary AIDS Association (ABIA) and co-coordinator of the Sexuality Policy Watch (SPW).