The enormous progress achieved in the field of HIV/AIDS – at the research, political and social levels – over the last 40 years is undeniable and, of course, is largely due to the action of the individuals and groups directly involved.
However, this progress, unsurprisingly, is far from being equally channelled into patients’ access to public health care among different countries and nations of the world, depending on the standard of living and the prevailing socio-political situation in each: apart from the obvious example of sub-Saharan African countries, where access is largely hampered by the low economic level, a typical example is Russia, where since the time of the Yeltsin government, the diagnosis of HIV-positive implies expulsion from the country.
Michael, an Irish journalist who was diagnosed in Moscow in 1996 and is now 57, says: “I was lucky because the doctor who diagnosed me was American and advised me never to tell anyone. If the doctor had been Russian, he would have been legally obliged to ‘hand me in’ and be deported. So I stayed in Russia for another seven years because I didn’t want to lose my job. Three or four times a year I would go back and forth to Ireland and return with a stash of smuggled drugs to survive. But even now that I have lived in Brussels for twenty years and the social stigma has diminished considerably, no one knows that I am HIV-positive. The reflection of the forced silence has been imprinted on me. And I don’t think that will ever go away” (excerpt from the interview given on 12 May 2024, interviewee’s name has been changed).
In short, the HIV/AIDS virus, like the SARS-COVID-19 virus later on, is a kind of magnifying mirror of a major social issue, that of social inequalities in the field of public health.
But even within more homogeneous geopolitical and cultural groups, social inequalities remain evident. If we focus on the European Union, where for several years now the combination of antiretroviral drugs has been widely used both in the context of treating patients and in the context of preventing the virus, both before and after exposure (we are talking respectively about treatment as pre-exposure prophylaxis – PrEP – and for preventive treatment after exposure/risk – PeP), access to specific treatment from country to country, but also access to it from social group to social group within the same country, is anything but composing the image of a “health democracy”.
The widespread use of terms such as “gap” or “chaos” in the PrEP field in a number of recent publications – both scientific and non-scientific – demonstrates this disparity. Specifically, according to the European Action on AIDS, PrEP is more accessible in urban areas, information campaigns are often carried out by NGOs that may not have sufficient financial support, resulting in services and information being targeted at young, educated men who have sex with men.
Immigrants, women (especially women with an immigrant background), transgender people and sex workers are systematically left behind, while other populations at risk include people who inject drugs, prisoners and undocumented immigrants because they are not eligible for PrEP in many European countries, as reported by UNAIDS.
At the same time, racist treatment of patients – based on racial, class, sexual or a combination of these criteria – is unfortunately still a daily reality, even in areas, such as medicine, where one would hope it would now disappear.
The testimony of Ahmed, 28, a French citizen of Algerian origin and permanent resident of Athens, diagnosed with HIV two years ago, is reminiscent of Michael’s in every respect: “My treatment by public hospital staff from the moment I announced that I was HIV-positive until today has been so bad that I really think that another person in my position, with less resistance and privilege, would pack their bags and go back home – if, of course, they could do so” (excerpt from the interview given on August 29, 2023, the name of the interlocutor has been changed).
So, in an age where it is now a fact that those receiving antiretroviral therapy are unable to transmit the virus – the well-known, but perhaps not so well-known, motto U=U (the motto derives from the initials of the English words Undetectable and Untransmittable and this is the scientific documentation that changes everything we knew about HIV and how the virus is transmitted, as it states and proves that a person living with HIV, on antiretroviral therapy, who has achieved an undetectable viral load in their blood for at least 6 months, cannot practically transmit the virus to a sexual partner, even through unprotected sex), unacceptable discrimination against HIV-positive patients in fields such as dentistry continues to be common.
According to the first results of an ongoing investigation in Belgium, it is common practice for dentists to refuse to see HIV-positive patients or to treat them differently from others. Similar research has been published in countries such as England, France, Canada and the United States. Finally, although thanks to treatment the average age of patients is increasing rapidly (for example, 49% of people living with the virus in Belgium today are over 50, compared to just 19% in 2006), attention to the difficulties that people over 60 may face and, in general, to their good quality of life, is still in its infancy.
Thus, at a time when the Covid-19 pandemic is overshadowing and, to some extent, hindering the fight against HIV/AIDS, a wealth of evidence urges us, at European and global level, not to relax our scientific and political attention to this “other” pandemic, which emerged forty years ago but is far from over.
Koliopanos is currently completing two postdoctoral research projects at the Université Libre de Bruxelles in Brussels, one on the quality of life of people living with HIV and over the age of 60 in Belgium and another on the discrimination faced by HIV-positive people in the medical field.
The text was written thanks to the help of the Association of HIV Positive People of Greece Positive Voice.