Experts say our history with past health crises can offer valuable insight in dealing with the current pandemic, but we aren’t applying what we learned as well as we could.
Two infectious diseases. Two global health crises. Two examples where slow government response and the spread of stigmatizing misinformation made matters worse.
Though marked by very different viral outbreaks, the AIDS crisis — at its height from the 1980s through the 1990s — and the current COVID-19 pandemic, present striking similarities.
Have we been taking lessons from the AIDS crisis and applying them to combating the coronavirus pandemic? Experts say “yes and no.”
Today, AIDS still continues to disproportionately impact many vulnerable groups, including communities of color, those who engage in injectable drug use, and stigmatized members of the transgender community.
But public health officials clearly look to the recent past of the AIDS crisis to handle COVID-19.
While this is important, a gulf exists between federal and local response to this current pandemic, with experts saying that, worryingly, history seems to be repeating itself.
Dr. Hyman Scott, MPH, the clinical research medical director at Bridge HIV and an assistant clinical professor of medicine at the University of California San Francisco (UCSF), told Healthline that there are a “lot of similarities” between the AIDS crisis and the COVID-19 pandemic.
He noted the “disjointed” government response to HIV and AIDS when it first emerged and the often confusing government attention paid to COVID-19.
There was no cohesiveness in messaging — the response to COVID-19 varied greatly from jurisdiction to jurisdiction, and directives over whether people should physically distance or even wear protective masks were confusing.
“One of the biggest parallels is that we see how Ryan White really helped to coalesce some of the best practices in care for HIV, how there was that system put in place to improve outcomes, to have consistency across the United States,” Scott explained.
“There hasn’t been the same type of cohesive programming with COVID,” he added.
Scott said given how the pandemic evolved so quickly — first identified less than 12 months ago — the message around prevention got muddied due to very public governmental disputes over how it would be implemented.
“There was a lot of fear and stigma associated with COVID as it first emerged initially and still to this day, especially directed toward people perceived as having Asian descent regardless of what their background was,” Scott added.
“You still see this in political rhetoric about how the virus is referred to in some spaces,” he said.
Scott said that this racist “othering” stigma and unfounded fear placed on people’s identities during COVID-19 is similar to what happened during the early days of the AIDS crisis.
“It’s so similar to HIV, where it has been very stigmatizing toward gay men, Haitian immigrants, heroin users,” Scott said.
“In fact, you still have this identification toward people seen as potential vectors of an infectious agent and all the stigmas associated with that. The same mentality has been very prominent with COVID-19 as well,” he added.
Scott also sees a parallel between this stigmatizing dialogue and confusion over how the two viruses are transmitted.
He cited fears of HIV being transmitted through kissing, which is obviously based on no scientific fact.
With COVID-19, mixed messaging and what at times feels like intentionally confusing information from political figures resulted in the public’s chaotic understanding of how the virus is transmitted and how to protect oneself.
Dr. Robert Gross, MSCE, co-director of the Penn Center for AIDS Research at the Perelman School of Medicine at the University of Pennsylvania, said many of the figures who were at the helm of national infectious disease response in the 1980s are still around now, including Dr. Anthony Fauci.
He stressed there are people with expertise at the highest levels of government who have learned from mistakes made during the AIDS epidemic.
That being said, Gross said the “parallels are obviously striking,” with another disease being spread asymptomatically and the shaming over whether one does or doesn’t wear a mask — not unlike shaming over condom use and other barrier methods when it comes to HIV.
“I think those kinds of parallels are really important because you have the issue of how stigmas are imparted to people when they are shamed, how does that change people psychologically, to make them then go and engage in ‘underground behavior’ that will further lead to undesirable health outcomes,” Gross told Healthline.
He said that during the early days of the AIDS crisis, it was harder to reach some people who might have been shamed or stigmatized by the messaging of the time.
The emphasis was on shame rather than on “harm reduction,” an emphasis on crafting behavioral strategies to lessen harmful impacts on people’s health, Gross said.
“The same thing is happening now with masks,” he said, noting how shame is directed at people’s personal choices rather than helping them adopt behaviors that may best help themselves and those around them.
“I think taking that approach and recognizing that it’s virtually impossible to keep behavior perfectly in line with protection — that means with safe sex, that means with injection drug use with HIV, that means with mask wearing, and always avoiding the breath of other people — well, that’s essentially impossible,” he added.
“If we recognize that, maybe we can decrease the stigma for someone infected and encourage them to behave in ways that are going to protect them and others,” Gross said.
Gross said that for people who either weren’t alive or weren’t yet adults when AIDS first emerged in the 1980s, it can be easy to forget or not realize how destructive the government response was.
He stressed that President Ronald Reagan’s refusal to even say the word “AIDS” for four years was dangerous.
“Back then, being gay was considered a disease in and of itself, society was just trying to get its head around the idea of what ‘normal’ was when it comes to sexuality, for instance. So, you had a conservative government that didn’t want to touch the concept of a disease that was spreading among a group that had been stigmatized and marginalized,” he said.
Gross explained that there’s a striking parallel in how COVID-19 was politicized at the start of the pandemic this year rather than treated as a public health concern that every person in the United States should take seriously.
“Just like how AIDS had to do with judgmentalism and mores related to gay sex and injection drug use, well, now Trump is using masks as a political message to say if you support him and the job he is doing then you don’t have to wear a mask. Or when he says we are ’rounding the corner.’ Well, now we are having a third peak as cases are rising in much of the country,” Gross said.
The big issue in both instances is that political figures like Reagan and Trump worried too much about the “political message.”
Think of Reagan’s diminishing concerns over HIV out of deference to religious and political conservatism of the time rather than public health for the greater good.
Right now, President Donald Trump is using COVID-19 as a referendum on his administration, diminishing talk over how dangerous it is out of fear that it will reflect poorly on him.
Both instances set a dangerous climate for the public health of the country’s citizens as a whole.
Gross said public health messaging needs to be transparent and consistent without delving into politics — it’s the only way it will work.
Now, even trusted apolitical tools such as the Centers for Disease Control and Prevention (CDC) publication MMWR is being seen through a political lens, breeding more distrust and confusion among those who consume that information.
Gross added that people need to recognize that people also behave in ways that will inevitably transmit a virus — it isn’t feasible to stop all activities.
Not everyone will stop all sexual activity or drug use when it comes to HIV transmission, and despite COVID-19, people will not stop all attempts at seeking physical interpersonal companionship or shop at crowded grocery stores.
Again, harm reduction should be the focus, he said.
“I think the resistance to masks and the surrounded mixed message coming from the White House will be seen as one of the greatest blunders in history,” Gross said.
“Like how [the] 1918 influenza epidemic saw Philadelphia allowing crowded military parades while we had one of the worst influenza epidemics in the United States,” Gross said.
“I think another is the prevention of clean needle exchange in the first decade of AIDS — that was a real blunder made by (President) Bill Clinton, who has tried to since make up for it with his Clinton HIV/AIDS initiative, he’s tried to make amends for that, and he’s apologized for that, but it was a mistake,” he said.
Gross reiterated that Trump’s aversion to and active dismissal of masks will go down similarly as a preventable blunder that resulted in an ever-worsening crisis.
The U.S. Department of Health and Human Services reports that about 1.2 million people are living with HIV in the United States. About 14 percent don’t know they have the virus and are in need of testing.
When zeroing in on who’s impacted the most, ethnic as well as sexual and gender minorities (SGM) find themselves bearing the brunt of this health concern.
The government states that in 2018, Black Americans had the highest rate of new HIV cases at 45.4 percent, which was followed by Hispanic-Latino Americans at 22.4 percent, and people of multiple racial backgrounds at 19.3 percent.
Overall, gay, bisexual, and other men who have sex with men are the most impacted among sexual and gender minorities.
Male people of this group made up 69 percent of 2018 diagnoses, while Black men who have sex with men made up 25 percent of total cases. They made up 38 percent of diagnoses among men who have sex with men.
The transgender community is another group disproportionately impacted by HIV.
An estimated 14 percent of trans women are living with HIV. Broken down further, 44 percent are Black, 26 percent are Latinx or Hispanic, and 7 percent are white, according to a 2019 review cited by the CDC.
They report that the number of transgender people who received new HIV diagnoses was 3 times the national average. This was out of the 3 million total HIV testing events reported to the CDC in 2017.
Beyond this, women who are living with HIV find themselves at a severe disadvantage in trying to seek access to appropriate healthcare and treatment.
What these statistics underline is that HIV has impacted those at a structural disadvantage in our society and our healthcare system — in other words, most groups that aren’t, frankly, heterosexual, CIS-gender white males.
The same has been shown with COVID-19.
The virus, which continues to see surges and spikes throughout the United States, has been shown to hit marginalized communities the hardest.
While numbers continue to fluctuate and update, overall, it’s been shown that Black Americans in particular are more likely than their white counterparts to face high risks for the coronavirus.
The CDC
Non-Hispanic Native American or Alaskan native people had a rate of 4.3 percent while Black people experienced a rate of 4.2 percent.
These parallel statistics show that systemic racism, homophobia, and transphobia within our healthcare systems resulted in poorer health outcomes for those who most needed cogent messaging and interventions.
It’s a key factor in the current COVID-19 crisis that Scott said is woefully under-covered by the media and ignored by political leaders.
“What’s lost in both the HIV and the COVID-19 epidemics is the inequity, the disproportionate impact on, in particular, Black and Latinx communities in this country, when it comes to both infections as well as deaths,” Scott stressed.
“We saw that same trend in HIV early on,” he said. “I think it was underestimated the impact on those communities. Since the 1990s, there has been a disproportionate impact among Black communities, and we’ve seen similar things with COVID-19.”
Scott said this conversation should not — must not — be lost when it comes to how we address COVID-19.
Today, with HIV, these communities are still under-addressed, even though their numbers are the highest, especially in communities in the American South.
A lot of this is exacerbated by social and economic challenges faced by marginalized communities of all kinds in the United States. There aren’t enough efforts to increase COVID-19 testing and tracing in poorer, predominantly Black and brown communities.
It’s hard to emphasize quarantining when people have to head out to earn a living, working paycheck to paycheck to afford to support their families.
“Just like with HIV, there are a lot of social determinants in driving an epidemic, and those are the things that need to be addressed in addition to increasing access to testing and support for masking,” he added.
“Another thing that is going to happen is schools — it’s complicated. Those who have the means can afford to keep their kids out of school and at home. Those are people who are less likely to be impacted by this infection,” Scott said.
Scott added that this country seems to keep drawing a blank when it comes to policies to help these communities.
Gross said members of the medical and public health communities certainly have been looking back to the AIDS crisis when it comes to how to respond to COVID-19.
That being said, while the 1918 flu pandemic is often invoked as the “last major pandemic” that’s being compared to COVID-19, HIV and AIDS gets somewhat overlooked in major media narratives.
Why do we hear about it less frequently? Gross suggested it might be partially due to the success in managing HIV over time.
For instance, modern advancements in medications have allowed people living with HIV to achieve “undetectable” status, meaning a person’s viral load has been suppressed to the extent that they can’t transmit the virus to any sexual partners. This is as long as they adhere to their medication regimen.
Pre-exposure prophylaxis (PrEP), a medication that when taken by people who don’t have HIV, can reduce the risk of contracting the virus by more than 90 percent.
Scott said that a needed caveat for this fact is that PrEP’s distribution and health messaging has mainly benefited white CIS-gender gay men who tend to have the financial means for health insurance that will cover the costly drug.
It’s yet another sign of how inequities in our healthcare system can harm groups at high risk for a contagious virus.
Also, the AIDS crisis has been minimized by the current coverage of COVID-19 in that many Americans still see themselves siloed away from any potential risk.
“Obviously, everyone is at risk for HIV, but it’s concentrated so heavily in some populations over others that many people don’t view themselves as being ‘at risk,” Gross said.
“I’m sad about that, I think everybody should be thinking about HIV the way I do, but the reality is people can get squirmy around it,” he added. “It brings up the idea of sex and drugs and other behaviors that people can be uncomfortable with — it’s still stigmatized.”
This can prevent the average American from seeing the parallels behind the two health crises.
By extension, it gives the mainstream media something of a blind spot in contextualizing how the pandemic we’re all facing today isn’t unlike the serious crisis that decimated segments of our population only a few short decades ago.