Thirty-Nine Years Ago in June
Medical illnesses are imbued with psychological
Eugene W. Farber, Ph.D.
on behalf of the Atlanta Behavioral Health Advocates
Medical illnesses are imbued with psychological meaning.
By Eugene W. Farber, Ph.D.
on behalf of the Atlanta Behavioral Health Advocates
“What’s gonna happen now?” my psychotherapy client worriedly asked me. Because he’s considered high risk for complications of novel coronavirus disease, our session was held virtually as he sheltered in place at home. “Well, I wonder if your past experience might help you find an answer,” I responded. “Oh, yeah…right,” he said, his voice trailing off as he recalled a painful time long ago when he first confronted this question.
Thirty-nine years ago in June a rare type of pneumonia was reported in five previously healthy young men in Los Angeles, marking the start of a long and devastating epidemic that cumulatively to date has resulted in an estimated 74.9 million HIV cases and 32 million deaths worldwide. My client tested HIV seropositive about 4 years after these first cases were reported, marking the beginning of an uncertain journey for a young gay man living with a dangerous and highly stigmatized illness that by the early 1990s would become the number one cause of death among men between the ages of 25 and 44 years.
To be sure, medically speaking HIV disease and COVID-19 are very different illnesses. HIV is an immunocompromising blood borne pathogen that is not transmitted via casual contact. COVID-19 is a highly contagious respiratory illness that is unprecedented in the modern era for the sheer rapidity of its spread and sweep of its global health and economic impact over the span of a mere few months. Yet there are ways in which the up-close human toll of the COVID-19 pandemic is reminiscent of early years in the HIV epidemic - the anguish it causes, the arbitrariness of its reach, and the weight of the burden felt by intrepid healthcare workers committed to defeating a novel infectious illness as the health science community determinedly pursues discovery of effective therapeutics and ultimately a vaccine. Also, COVID-19 is now demonstrating what HIV has long taught us - that beyond their biological properties, medical illnesses are imbued with psychological meaning, and that how we understand and manage disease both reflects and is profoundly influenced by societal values, priorities, social structures, and political climate. On its surface my client’s question refers to his understandable concern about his own health. More subtly, it expresses his apprehension based on his lived experience of HIV disease about how we as a society will respond to the COVID-19 pandemic over the long haul.
A key part of the HIV story pertains to health inequity, reflected by the disproportionate burden of HIV disease among gay men, communities of color, particularly African-American communities, and those at the lower end of the socioeconomic status continuum. Disparities in illness burden grounded in longstanding inequities disproportionately affecting communities of color already has similarly been revealed in the setting of COVID-19, mirroring a key lesson from the HIV epidemic - there is an immediate and urgent imperative to address health conditions in social and economic context. The search for effective COVID-19 therapeutics and vaccines must be matched by vigorous investment in building structural facilitators of health equity lest history inevitably repeat itself in circular fashion.
Among the most emotionally searing narratives of the HIV story pertains to the influence of the social construction of illness on how persons living with a particular illness are perceived and treated. When HIV first appeared, its sheer lethality, the absence of effective therapeutics or vaccine, contagion fears, and its overwhelmingly disproportionate impact on historically stigmatized communities spurred a combustible brew of shaming and marginalization of those living with the illness. This meant that many already enduring the extreme physical suffering wrought by a relentless terminal illness routinely also were subject to outright disdain, condemnation, blame, and ostracism. In contrast to the welcome and well-deserved blue light salutes and nightly plaudits for front line healthcare workers in the current COVID-19 pandemic, providers of HIV care were often themselves stigmatized or kept at arms-length. As the story of the COVID-19 pandemic continues to unfold, the HIV experience implores us to push back hard against narratives that conflate disease origins and causes with particular communities, social groups, or nations, and not underestimate how contagion fears can fuel stigmatization of coronavirus survivors.
The situation of HIV also is a story of the influence of politics on how a given infectious disease event unfolds and is managed. This part of the story begins with governmental, institutional and societal neglect and denial that helped to worsen the spread of HIV in the early years of the epidemic. Political forces continue to hamstring HIV prevention efforts to this day, including ongoing controversies about teaching effective barrier methods to prevent HIV transmission as part of school sex education curricula, or objections to commonsense clean syringe exchange programs for persons who inject substances. With a federal response that is, at best, adrift, and new cases rising rapidly, the current politics surrounding COVID-19 are eerily like the early HIV era. Similarly, the increasing politicization of mask wearing despite its clear effectiveness in reducing COVID-19 spread is evocative of instances of preventable ongoing HIV disease spread amid toxic debates about prevention methods.
Among the great lessons from the story of HIV is that hope borne from activism propels advances in governmental and institutional responses, clinical research priorities, therapeutics, and culturally responsive healthcare resources and delivery systems to great benefit. The U.S. COVID-19 outbreak is now embedded within a powerful social justice movement, itself a grave exemplar of both the manifestations and consequences of discrimination and inequity baked into the very fabric of our society. This crossroads moment brings possibility for enduring change, though also is disturbingly subject to stubborn headwinds impelled by structural inequity and racism.
My client’s question in our psychotherapy session is profound in its simplicity. Its answer in the context of the coronavirus pandemic and the broader societal inequities it reflects is wholly dependent both on our will to act and our modes of action. Responsibility for what happens next is squarely on our collective shoulders.