…from the AIDS pandemic to help with COVID-19
Imagine this scenario:
With the emergence of a previously unknown virus, the world grapples with a pandemic which quickly escalates from a handful of isolated cases to a heretofore unimaginable global catastrophe. The virus exposes major fissures in the equitability of health care systems and, furthermore, leads to the targeting and blaming of specific communities, both at the level of national political leadership, as well as in numerous occasions of hate crimes and other acts of bias.
The history of mistreatment by health care systems and other institutions leads to a failure to fully engage the most affected communities in efforts to detect, prevent, and treat the virus.
The massive suffering and death caused by the pandemic places enormous burdens on health care systems, and subjects clinicians to trauma and burnout.
Finally, public health strategies to contain the virus require a new understanding of the motivating factors and structural barriers that shape individuals’ likelihood to significantly change their behavior and reduce transmission.
For those of us living through COVID-19, this description of an unfolding pandemic may feel instantly recognizable as the pattern of events from the past year. However, for many members of the C-L Psychiatry community, this account also recalls the unfolding of another pandemic, that of the emergence of HIV in the early 1980s.
As the novel coronavirus moved from one country to the next and took hold in communities throughout the US, with ensuing responses at political, social, and health care system levels, ACLP members who work in HIV Psychiatry, including members of the HIV/AIDS Psychiatry SIG, reflected on the similarities between the new pandemic and the one which began 40 years ago—and felt an urgency to collect, share, and apply lessons learned from the earlier pandemic to the current one.
Effects of bias and prejudice on pandemic outcomes
In the early years of the AIDS pandemic, the US government response was marred by explicit expressions of homophobia, as well as inaction on the new virus that seemed to be motivated by a prejudice towards certain populations, including LGBT people, people who use IV drugs, and Haitian immigrants. Similarly, during the COVID-19 pandemic, there has been concern that governmental efforts to play down the seriousness of the pandemic were partly driven by the fact that relatively disenfranchised communities, such as those of color, lower socioeconomic status, and immigrants, appeared to be disproportionately affected.
Just as a history of abuse and mistreatment by medical systems led LGBT people to mistrust early public health messaging (as well as to urgently and effectively fight to improve the public health infrastructure for addressing AIDS,) a history of bias and mistreatment, as well as ongoing structural barriers to equitable health care access and training, had led to worse health outcomes during COVID-19 for communities of color and other historically disenfranchised communities.
The lessons learned from the history of discrimination during the AIDS pandemic are important to apply as we address the systemic racism in health care systems exposed by COVID-19, as well the targeting and scapegoating of Asian American and Pacific Islander people for abuse during the current pandemic.
According to Phil Bialer, MD, FACLP, Memorial Sloan Kettering Cancer Center, based on prior experiences with the AIDS pandemic, involving and collaborating with affected communities in pandemic response planning will improve the process of implementing COVID-19 research, prevention, and care.
Pandemics and burnout
In the first decade of the AIDS pandemic, doctors, nurses, and other clinicians working in HIV care were exposed to grueling physical and psychological conditions which included witnessing the deaths of many young patients during what should have been the most creative and productive years of their life. Many of these clinicians experienced complicated grief, burnout, and trauma on the frontlines of HIV care. Similarly, medical staff caring for patients with COVID-19 have witnessed an unprecedented scale of severe illness and death and have experienced their own mental health sequelae.
According to Asher Aladjem, MD, FACLP, NYU Grossman School of Medicine, experiences with the AIDS pandemic underscore the importance of identifying and targeting provider distress and increasing the awareness of complicated grief among COVID-19 medical caregivers.
Changing behavior during pandemics
The first year of the COVID-19 pandemic has underscored the central role of behavior change in controlling and containing viral transmission. In the early months, there was a common exhortation to ‘flatten the curve’ by adhering to mask-wearing, reducing contact with other people, and ensuring physical distance when in public.
Says Mark Bradley, MD, FACLP, also NYU Grossman School of Medicine: “The enormous research investment in understanding how to change HIV-related behaviors serves as an important resource as we develop better public health strategies to reduce transmission of the novel coronavirus.
“Lessons learned from the AIDS pandemic include that population-specific individual-level interventions to change behavior are modestly effective, but their efficacy may be hampered by structural factors. In planning widespread behaviorally-focused strategies for COVID-19, it may be important to apply the syndemic model developed during the AIDS pandemic, which incorporates biological, behavioral, and structural factors to better represent how interlocking illnesses and social conditions may propel and perpetuate a viral pandemic.”
COVID-19 and long-term AIDS survivors
According to Chloe Nims, MD, Weill Cornell Medical Center, the challenges of COVID-19 have posed unique threats to long-term survivors of the earlier AIDS pandemic. People living with HIV/AIDS have higher rates of PTSD, depression, and anxiety, and the increased isolation brought about by COVID-19 may exacerbate these, particularly among those who have a history of feeling isolated by HIV-related stigma. For these survivors, the recent pandemic rekindles prior memories of fear, grief, and death.
Many HIV-focused support organizations, as well as services such as home visits from case managers, have been disrupted by recent pandemic restrictions. However, work with long-term HIV survivors across four decades of the AIDS pandemic also underscores the potential for post-traumatic growth in the face of a feared and stigmatized illness. This may have particular relevance as we come to understand more about the ‘long-hauler’ group of COVID-19 survivors who continue to experience its effects long after the acute infection. According to Dr. Nims, clinicians who care for this group may learn from the examples of resilience and meaning-making provided by people who have survived decades of living with HIV.