It’s Okay to Not Know — It’s Not Okay to Ignore: Lessons From the AIDS Pandemic

In 1980, a man in San Francisco was showing signs of a weakened immune system, so he sought medical help. The diagnosis — Kaposi Sarcoma (a rare form of cancer).

The following year, his diagnosis would be revised. Retroactively making his case, the first recorded of a new virus in the United States.

By now it was 1981. And, this new virus had been spreading throughout the country for over a year. And, it wasn’t just confined to the United States. Reports of cases in Canada, Brazil, and the UK were popping up.

The virus was rampant.

Now, 40 years later this virus continues to confound the medical community. And, it continues to spread at a rate of millions per year.

And, while there have been some advancements in research and prevention, there is still no cure. Nor a widely available vaccine.

So, what caused the virus to spread so rapidly in those early years? Well, that delayed diagnosis was only one part of the story.

At the time, the medical community had never seen anything like it. So, in those initial years [the crucial ones that determined the fate of the spread] all anyone had to go on, was evidence based on speculation.

And, what did they determine from this? That the patients being diagnosed appeared to have one thing in common — they were all gay men.

Based on this evidence, a decision was made by the CDC to officially give the virus a name:

Gay-Related Immune Deficiency (or, GRID).

The perception: the virus was confined to a very specific community. Only people within that community could be affected.

The result [of this perception]: No further precautions needed to be taken by anyone outside of that community.

So now, anyone who wasn’t connected to the gay community, assumed they were immune to the virus. And, they moved on.

A divisive and discriminatory attitude that resulted in catastrophic losses over the next four decades.

And, while everyone else moved on, terror plagued the gay community. Niche publications [like the New York Native] were writing stories of the dangers of the virus.

But, in mainstream media — crickets.

For the general population, the virus was no longer a concern. So, it lost its space in the larger conversation.

Then, by early 1983 signs of the virus began showing up in heterosexual women. Babies in New Jersey were being born with unexplained symptoms of autoimmune deficiency.

Diagnoses were showing up everywhere. And, something became very clear — this virus could infect anyone.

By 1991 [ten years after that first diagnosis] the virus reached a tragic milestone. 100,000 dead.

This event was unceremoniously marked on January 25, 1991, in The New York Times. A reprinted blurb — originally written by the Associated Press. No pictures. Page 18. Below the fold.

U.S. Reports AIDS Deaths Now Exceed 100,000

Those who read the paper that day, likely don’t even remember seeing the piece.

It was as if one were flipping past the obituary of a single, un-extraordinary person. Except it was 100,000 people. And, it was tragic.

It was tragic. And, it was important. And mainstream media didn’t want to touch the story. And, it didn’t matter anyway — because, it was too late.

Intentionally, or unintentionally, they had [almost all] ignored a virus during those crucial early years. Leading the public to believe that it wasn’t necessary to take it seriously.

100,000 deaths later, and the damage had been done. The New York Times — alongside many of their respected peer publications — opted to continue to drown out the story.

Perhaps the mishandling on January 25, 1991, was a reflection of the Times’ earlier oversight [in 1981]. Or, perhaps the brush off, was because it was an illness still shrouded in uncertainty.

It has also been suggested, that the blatant disregard [in the NYT specifically] was a result of the allegedly homophobic views of the editor at the time, A.M. “Abe” Rosenthal.

Regardless, it was clear that adjusting that earlier narrative would have been too challenging. So, it never happened. A precedent was set — AIDS was not front-page news.

This avoidance of the topic meant that the story of AIDS remained tucked away. Shrouded in embarrassment and shame. Of journalism’s failings. Of the failings of the medical community.

It’s likely that the New York Times hoped few would notice when they opened their papers that morning. And, few did.

But, to those tremendously affected by the virus already, seeing page 18 that day must have felt like a giant slap in the face.

Unfortunately, in 1991, no lesson was learned. Mass media went on to continue to bury the story of AIDS. Often times, not even bothering to cover it at all.

These actions caused irreparable damage.

AIDS is now a permanent black mark. And, the general attitude towards it remains — it is a disease of segregation and stigmatization.

It didn’t need to be this way though.

HIV and AIDS was — and continues to be — a threat to everyone. It was never just about the gay community. From day one, the virus had the ability to infect gay people. Straight. White people. Black. Young people. Old. Average people. And, famous ones. Nobody was immune.

And, that first famous loss — Queen’s Freddy Mercury.

Mercury was diagnosed with HIV in 1987. The virus advanced into AIDS leaving Mercury vulnerable to illness. He died on November 22, 1991. Just 5 months after the [infamous] New York Times article went to print.

Then, three years later, it was rapper Eazy-E.

Shortly before the hip-hop legend passed he released a statement to fans:

“I’ve got thousands and thousands of young fans that have to learn about what’s real when it comes to AIDS. Like the others before me, I would like to turn my own problem into something good that will reach out to all my homeboys and their kin. Because I want to save their asses before it’s too late. I have learned in the last week that this thing is real, and it doesn’t discriminate. It affects everyone.”

The loss of these public figures [and many others since] helped gain some awareness. But, the information available to the public remained scarce.

AIDS has now been the cause of 32 million deaths, and there are over 80 million infections of HIV worldwide. Keep in mind, that these are only the cases on record.

It’s estimated that only around 80% of people infected with HIV today, don’t actually know that they have it.

It is a virus that continues to spread. And, although it has slowed in the past decade in Western countries, Africa still has around 25 million people living with HIV. And, in South Africa alone, there are over 7.5 million people infected.

Unfortunately, the attitude towards it still remains steeped in that same archaic [us vs. them] narrative. One that is now almost four decades old.

It is still a gay disease. A drug user’s disease. A disease of promiscuity. A disease that is someone else’s problem.

Except, it’s not.

AIDS was a serious threat to everyone in 1981. And, AIDS is still a serious threat to everyone today.

And, this year. 2020. We should be taking some of the lessons learned from the AIDS pandemic seriously. Specifically, when we consider how we are approaching a new virus. A new pandemic. A pandemic that has emerged out of a virus which began its spread only 8 months ago. A virus that has killed over half a million people.

Because, this new virus — while it may transmit differently, it is clear that it is serious. This is an issue that poses a real public threat. And, just like in 1981, this is an issue that is shrouded in uncertainty.

Unfortunately, there are some out there who are still stuck in the mindset of 1981. They believe that this virus is a threat to only some — not all.

But, this time, them is not gay people. It’s old people — or, people who are already sick.

There are naysayers taking a stand against precautionary measures. Insisting that the spread of the virus, is a non-issue.

Except, it’s not. It’s [potentially] a huge issue.

Because with cases last week, like the 9-year-old girl in Florida [with no underlying health issues] popping up, its clear that what we are dealing with today, is just as ambiguous as what we were dealing with in 1981.

It is just as uncertain. And, in terms of how it’s spread, it’s likely even more serious. Because, what we know about the long-term impact to those infected by Coronavirus (or, COVID-19) is still absolutely nothing.

Hindsight is not on our side. Yet. And, it may take years for us to get there.

It took decades to figure out that HIV wasn’t a death sentence, but that AIDS probably was. But, it didn’t have to be. But, it’s serious — and, it probably will kill you if you contract HIV and it advances into AIDS. Again, there is still so much to learn about the virus.

And, HIV is still out there. And, it is still at very real risk to everyone. Between 1.2–2.2 million people contracted HIV in 2019 alone.

So, what does this have to do with COVID-19?

Well, for some context, it took AIDS 10 years to kill 100,000 people. Now, keep in mind that AIDS is a virus that requires very specific, intimate contact to contract.

That same milestone [of 100,000] only took Coronavirus 5 months to hit. And, to contract it — well, it seems as simple as being in close proximity to a symptomatic [or an asymptomatic] person. But again, that’s all very unclear.

One silver lining: when it comes to media coverage of Coronavirus, there is a stark contrast in its handling in mainstream outlets — namely, that it is actually being covered. And, given quite a bit of attention.

The public just needs to listen…

To things like the cover story on May 24, 2020’s issue of the New York Times. Coronavirus. Frontpage. No pictures. Full text. Bold headline.

US Deaths Near 100,000, An Incalculable Loss.

Anyone who picked up a copy of the paper that morning understands the message that the publication was trying to get across to its readers. With ZERO hesitation — the virus the world was currently facing, was uncertain. And, it was a potential threat to everyone.

And, the digital version of the story — equally bold.

The impact was deliberate. It was thoughtful. It was sobering.

Perhaps the New York Times learned from all of the mistakes they had made during those early days of the AIDS pandemic. Perhaps they just got comfortable with uncertainty and were willing to take a risk — one that may save lives, rather than one that may cost them.

And, perhaps this is not just something that the New York Times should be doing right now — but, something that we should all be doing. Because, what we are facing is serious. And, it should be treated accordingly.

We still have more questions than answers when it comes to Coronavirus. It’s okay to admit that.

Having constructive conversations. Willing to let researchers, doctors, and journalists give us information as they get it. Asking questions. Taking precautions. These things are all okay. And, they aren’t acts of weakness [or strength]. They are acts of compassion.

Because, if AIDS had been a larger part of the conversation 40 years ago — and corresponding precautions had been taken — who knows how many lives might have been saved.

Sadly, we’ll never know.

But, this time the lessons of an uncertain pandemic is on our side.

We need to use these lessons as a way to deal with what we are faced with now.

And, we also need to keep in mind that it is not solely the responsibility of journalists or medical professionals to fully oversee the well-being of everyone. While they are excellent resources, they should be treated as just that – resources. The rest is up to us.

The onus is on everyone right now. To consume information responsibly. To engage in conversation constructively. And, to take measures that signify a collective solidarity.

Because, when we didn’t know in 1981, we ignored it. We made it someone else’s problem.

But, it wasn’t someone else’s problem. And, now we know that. And, in 2020 we have the opportunity to learn from that mistake. To live in the uncertainty. Embrace it. And, give each other the compassion to take actions and precautions until we do know. Until the doctors, scientists, researchers, and reporters figure it all out.

If they figure it all out.

Accepting that we don’t know what we don’t know, and acting accordingly, is all we have right now.

By resisting this, we are only doing a disservice to ourselves. To our children. Our parents. Our neighbors. Our friends. And, everyone that we love. And, everyone that they love.

History will continue to be our greatest source of insight.

And, this year’s biggest insight: It’s okay to not know. But, it’s not okay to ignore.

Get comfortable with this idea. If not for yourself, do it for someone you love. Or, for someone that is loved by someone you love.

Because, for now — and for the foreseeable future — we are in this together.

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