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UCF Forum: I Wish We Had Learned Better From Our Early Response to HIV

By J. Richelle Joe
UCF Forum columnist
It is March, and one year ago we were unexpectedly ushered into a global pandemic that shut down our favorite stores and restaurants, disrupted our working and living routines, and affected our physical and mental health. The year 2020 was a time warp for me — simultaneously the longest and shortest year of my life, and a year that took me back in time.
Of late, I have been struck by how eerily reminiscent the past year has been to the early 1980s before HIV had a name, and when the letters A-I-D-S were the most haunting of the alphabet.
Whereas I am encouraged by the impressive work of immunologists in developing a vaccine and grateful for medical workers and researchers who have kept so many people alive over the past year, I am at times disheartened by the lost lessons of HIV that could have helped us all face COVID-19 more humanely.
I would like to recapture some of those lessons.
As there continues to be with COVID-19, there was a lot of finger-pointing in the 1980s as answers to questions about the origin, transmission and prognosis of HIV/AIDS were elusive. A necessary element of disease control is identifying a cause to develop a plan for disease response and allay community concerns about public health.
For both HIV and COVID-19, scientists have worked diligently in this regard to determine methods of transmission and possibilities for prevention. Unfortunately, this process of discovery can result in blame and stigma aimed at particular groups of people.
For HIV, the connection between the virus and African primates resulted in the mischaracterization of African people. Additionally, the initial prevalence of the virus among gay men and individuals who inject drugs led to deplorable narratives about who was worthy of human dignity and empathy and from whom those nurturing offerings should and could be withheld.
As events unfolded last year, it became clear that the cruel response to the HIV/AIDS epidemic during the 1980s had been forgotten. For some, COVID-19’s connection to China seemed to justify the discrimination and attacks targeting Asian Americans that have spiked since the onset of COVID-19.
Finger-pointing distracts from our ability to develop solutions. When we blame people for the past and mistreat them in the present, we are hindered in our movement toward the future. Instead, we are bound in our fears, and those fears divide us.
Addressing a major public health crisis like COVID-19 requires the full engagement of the public, so we cannot afford to be divided and disconnected. The human cost that resulted from HIV/AIDS stigma and fear confirms this.
During the early days of the HIV/AIDS epidemic, people affected by the illness were often neglected because they existed at the margins. Initially HIV/AIDS was solely associated with sexual activity and injection drug use, and since that time, the virus has been highly stigmatized, resulting in less than optimal testing and treatment adherence rates. Rather than compassion for individuals affected by HIV/AIDS, the general public’s response was to blame them for their own condition, resulting in further marginalization.
Stigma even permeated the presidential administration at the time, where questions about HIV/AIDS during White House briefings elicited laughter from the press secretary and the media. President Reagan publicly avoided the topic until he first mentioned it in 1985. Nearly 5,600 Americans had died from AIDS-related illnesses by that point.
It was not until Ryan White’s plight with HIV became public that widespread perceptions of HIV/AIDS began to shift. Ryan was a teenager who contracted HIV from a blood transfusion, so the general public grew sympathetic, viewing him as a blameless victim of the virus. By the time of his death in 1990, we had learned to care about a stranger facing a life-threatening illness.
But we had taken too long to learn that lesson. We should have cared anyway. Precious time and lives are lost when we don’t care.
What many did not learn from HIV/AIDS is that we have to be concerned with the welfare of the most vulnerable among us or we will continue to experience medical injustice and gross health disparities. Compassion and empathy must eclipse indifference, for eventually we will all know someone affected by HIV or COVID-19.
I have lost loved ones to HIV/AIDS, so I talk about it often to reduce stigma and encourage people to get tested, use appropriate prevention tools, and engage in care when necessary.
I do not want us to lose anyone else to COVID-19, so although I do not enjoy wearing a mask, I wear one. I have received the first dose of the COVID-19 vaccine, and I will be following up soon so that I am fully vaccinated. I view this as my personal responsibility in the midst of a public health crisis that has disproportionately affected older adults and communities of color.
We are in the fifth decade of HIV/AIDS. I hope that we ultimately learn enough from that pandemic so that we do not spend another 50 years with the devastating effects of COVID-19.
J. Richelle Joe is an assistant professor of counselor education in the UCF College of Community Innovation and Education. She can be reached at jacqueline.joe@ucf.edu.

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