The Other Pandemic: After forty years, HIV/AIDS continues to take a terrible toll.
The COVID-19 pandemic is not the first global health crisis that I have experienced. Before it was the HIV/AIDS crisis, which also seemed to come out of nowhere to grip us with suffocating anxiety. Just like COVID-19, the HIV/AIDS pandemic has tested the limits of our humanity, becoming a definitive marker in history for me and countless others.
I am forty-two years old. The struggle to end HIV/AIDS pretty much spans my entire life. This year, in fact, marks forty years since the first case was reported in the United States; on June 5, 1981, the Center for Disease Control disclosed that five young gay men in Los Angeles had been diagnosed with a rare lung disease, and two of them had died.
It was the first time that HIV/AIDS—an acquired human immunodeficiency syndrome—was reported by news outlets in the United States. The story was covered by The Associated Press, The Los Angeles Times, and the San Francisco Chronicle on June 6. I was too young at the time to understand, but HIV/AIDS would remain long enough for me to get acquainted.
One day in the late 1980s after school, when I typically would be designing clothes out of scrap fabric for my Barbie dolls, I glanced at the television and saw the droopy, impassioned eyes and sheepish smile of a very pale boy. He was fighting for the right to go to school. That captured my attention: I wondered why anyone would try to keep this kid from receiving an education. As someone who loved school myself and couldn’t imagine missing a day, I listened attentively to him recount being ostracized by his community.
I was surprised to learn that this boy from Indiana had been born with hemophilia (a hereditary disorder in which your blood cannot clot normally), which required him to have a blood transfusion. That procedure unfortunately left him infected with HIV, which over time evolved into AIDS.
His name was Ryan White. It struck me as dreadful, to be sickened with a virus that made everyone avoid you.
Ryan White died of the disease in 1990, at age eighteen.
I never forgot his face or his story. From that point onward, I became engrossed in this mysterious illness that slowly killed people after leaving them isolated, frail, and covered in dark blotches (Kaposi’s sarcoma). But the horror and tragedy of HIV/AIDS still felt far removed from my life.
As a Black girl in San Diego, I thought gang violence was a more relevant danger than contracting a virus. I’d heard of shootings at house parties, and of kids getting robbed of their Air Jordans, Georgetown Hoyas Starter jackets, or British Knights shoes on the way home from school, but never did I hear of a young person dying of HIV/AIDS.
Information about this viral epidemic became a pivotal topic in sex education in sixth grade and then again in ninth grade, as the facilitator demonstrated rolling a condom down a cucumber as a means to explain safer sex practices. I watched with equal parts shame, intrigue, and fear. Sex seemed like a teenage rite of passage in the movies, but in real life, it was being presented as a possible death sentence.
To many of us teenagers in the 1990s, the nonstop messaging about HIV/AIDS seemed like fear-mongering at best. Although I took it seriously, I could see why others didn’t. It was an illness mostly associated with gay men. It was cloaked in mystery. Where did it come from, really? People were dying from it—not exactly from the virus itself, but a secondary infection, like pneumonia. It was presented like a plague reserved for a very specific subset of the population.
Perhaps that is why many Black people did not think that epidemic was relevant to them. Moreover, Black folks were typically left out of the conversations regarding education, prevention, and treatment. We all sang along and choreographed dances in our garages to “Let’s Talk About Sex” by Salt-N-Pepa, but while it was empowering to witness these Black women asserting themselves sexually, HIV/AIDS still felt detached from my Black adolescent life.
Then, the rapper Eazy-E died in 1995.
The fact that you could be a young, Black, heterosexual male, incredibly successful, yet die from HIV/AIDS, activated our awareness in ways that had not happened before. That slightly off falsetto voice, that groundbreaking force, would be gone forever. It just felt odd and unfair because he was only thirty years old.
In 1997, I headed to UCLA as a biology major, as my love for science had expanded beyond dissections and my summer internship at a research institute. I still hadn’t had sex, but the conversations with my peers about how we were going to navigate that new territory was definitely a topic.
I had watched documentaries and dramas centered on HIV/AIDS, such as Common Threads: Stories from the Quilt, and And the Band Played On, but what connected me more to the illness than any of that was the numbers and the truths they exposed. I learned that Black people were more affected than any other group and that the number of Black women being infected with HIV was rapidly increasing.
Then, by the early 2000s, the headlines started to disappear. People mentioned HIV/AIDS less, if at all. I did not see as many posters about the dangers as I sat in medical offices. It was almost as if the expansion of HIV/AIDS into a disease that affected more people of color around the world led to a decrease of public focus.
I still did not personally know anyone who had tested positive for HIV or was living with AIDS. It would be another several years before I did.
That happened in 2009, when I was trying to fill time between jobs and decided to volunteer at AIDS Project Los Angeles. As an intake and eligibility volunteer, I was tasked with assessing if a client qualified for assistance and directing them to various resources.
I heard so many agonizing stories.
A woman who tested positive for HIV after her first time having sex. The client who boldly stated “All of my friends are dead,” in response to my question as to whether or not they wanted to list someone as an emergency contact. An eighteen-year-old who had just moved to California and had tested positive for HIV.
Some of the infected people I met had aged so much that I had to glance twice at their ID because I couldn’t believe their age. Some appeared otherwise healthy, while others had red inflamed skin with white circular patches.
I desperately wanted to help everyone who came my way, but the assistance they needed exceeded what I was trained to give them. I wanted to cry with them and listen to them for hours if they felt forgotten and abandoned, but the moral support they required could not fit into a thirty-minute appointment. And I could not emotionally crumble with every devastating story and still make it through the day.
Some of those with HIV and AIDS died alone, afraid to ask for help. Many were Black and brown. As a Black person, it was disheartening. People of color just always seem to be fighting for our lives in some way, and this was the embodiment of that.
Since my time at AIDS Project Los Angeles, there have been significant scientific advancements resulting in improved treatment options for people living with HIV/AIDS, as well as innovative preventative medications such as PrEP. However, this global pandemic is far from over.
HIV/AIDS still poses a threat to the lives of Black people and others and cannot be ignored as some calamity of the past. About 35,000 people are still being infected every year in the United States, 45 percent of whom are Black, despite being only 12 percent of the U.S. population. And 55 percent of all new cases among women are Black. Lastly, HIV/AIDS is the sixth leading cause of death for those under age thirty-five.
It is all scary and sad.
Regardless of improved information and medical progress, HIV/AIDS continues to take a terrible toll, and resources are not reaching the people who clearly need them. This is similar to what we are witnessing now with COVID-19.
In my years of life, I have survived overlapping pandemics. That feels miraculous—and exhausting.
This essay was originally published on The Progressive Magazine's website. You can view the article here: https://progressive.org/latest/the-other-pandemic-lawson-210920/