What Went Wrong and How to Fix It

What Went Wrong and How to Fix It
What Went Wrong and How to Fix It

Mio Akasako, co-founder & VP of Design at Ash Wellness

Public health crisis communications plans have the power to improve outcomes, reduce long-term healthcare costs, and save lives. These plans should convey crucial health information to impacted groups with recommendations on how and when to seek care and reduce spread. The consequences of ineffective, inconsistent, or absent public health messaging in times of crisis are grave, leading to the mistrust of healthcare institutions, stigmatization of impacted groups, and decreased likelihood of impacted groups seeking care. Over the past few years, the messaging around monkeypox, HIV, and COVID-19 are just a few examples of communications having deadly consequences. What went wrong and how do we make sure it doesn’t happen again?

1. Monkeypox

In May of this year, healthcare workers identified the first case of monkeypox in Boston, Massachusetts, and as of September 30, there have been 25,851 confirmed monkeypox cases in the United States related to the 2022 outbreak. In early crisis communications messaging, public health officials struggled to communicate risks to impacted groups without stigmatizing the sexual behavior of vulnerable individuals. Guidelines from WHO and the CDC that recommended limiting sexual contact were met with criticism by the LGBTQIA+ community, some of whom pointed to the AIDS epidemic as evidence against abstinence-only guidelines.

Original crisis messaging only focused on transmission between gay or bisexual men who had sex with multiple or anonymous sex partners, excluding at-risk demographics like sex workers or trans individuals, some who had to wait for vaccination. The stigmatization of men who have sex with men also inadvertently promoted the inaccurate belief that heterosexual people could not contract monkeypox and that monkeypox could only be spread through sexual contact.

After feedback, government entities like the New York Department of Health revised communications to include messaging and vaccine guidelines for broader at-risk groups. Monkeypox infection numbers are falling in part because stigmatized groups have taken it upon themselves to do what they can to curb the disease. This includes getting vaccinated despite initial government failures to provide enough dosages and choosing behaviors that reduce risk. As happened with the HIV/AIDS crisis, LGBTQIA+ people bore the brunt of monkeypox disease mitigation as well as stigmatization. If initial crisis communications fail to reach impacted groups or stigmatize individuals, additional messaging with input from impacted groups is necessary. This example showcases the paramount importance of defining at-risk groups inclusively, prior to any sort of public communication. Government institutions benefit from consulting specialists, like those trained in gender-affirming care, when carefully crafting their messaging.

2. HIV

The lack of crisis messaging during the first stages of the HIV epidemic in the United States still impacts misinformation spread today. While the first official government report on AIDS came out in June 1981President Ronald Regan did not publicly mention AIDS until September 1985. This created space for the spread of misinformation around HIV, so in 1987, 43% of Americans agreed with the Pew statement that “AIDS might be God’s punishment for immoral sexual behavior.” (In fringe groups like white evangelicals, 60% believed that AIDS might be a punishment for immoral sexual behavior the same year.)

Furthermore, the tendency to label HIV a “gay disease” continues to shape policy. Texas district judge Reed O’Connor ruled that a Christian company does not have to provide HIV prevention drugs under its employees’ insurance plans, citing the owner’s opposition to “homosexual behavior.” But HIV impacts heterosexual people, who too benefit from accurate information and preventative healthcare. In 2020, people reporting heterosexual contact accounted for 22% (6,626) of the 30,635 new HIV diagnoses in the U.S. according to the CDC. In the U.K., more straight people than gay and bisexual men contract HIV.

LGBTQIA+ people are often better educated on how to protect against the virus with tools like PrEP and regular HIV testing, and can safely engage in what would have once been considered at-risk behavior. Some of this is linked to the communal trauma of the AIDS epidemic, and the reluctance of government institutions to protect and provide accurate messaging for LGBTQIA+ people, who were forced to seek out their own healthcare solutions. Public health measures have since heavily promoted PrEP use for gay and bisexual men. Meanwhile, only 32.3% of heterosexual adults are aware of PrEPand less than 1% use it. When accurate and informed messaging fails to keep up with misinformation around HIV/AIDS, less informed heterosexual people can put themselves at greater risk of contracting the virus.

It’s time to shift messaging. President Biden updated the nation’s comprehensive HIV/AIDS strategy, which includes conscious choices around “person-first language” to reduce stigma against impacted groups and to instead focus on risk behaviors. This updated messaging is crucial in the fight against HIV/AIDS, but the original failure of the Reagan administration to provide accurate information about the crisis has left its mark on future efforts. In the future, governments need to address public health crises early and head-on to prevent public misinterpretation.

3. COVID-19

Disparities between COVID-19 crisis communications from sources like the CDC versus President Trump’s personal messaging facilitated the stigmatization of vulnerable groups and anti-Asian sentiments. The CDC reported the first laboratory-confirmed case of COVID-19 in the U.S. from samples taken on January 18, 2020, in Washington state, and the Trump Administration declared a nationwide emergency on March 12. However, on March 16, President Donald Trump published a tweet that referred to COVID-19 as “the Chinese virus,” which health experts warned against using.

We now know that COVID-19 came to New York City from Europe, not Chinabut New York experienced an increase in harassment and violence against Asian people and communities during the pandemic. Trump’s racialization of the disease led to a precipitous rise in anti-Asian sentiments. A new study from UC San Francisco found that Trump’s personal messaging increased anti-Asian language on Twitter. By 2021, there was a 339% rise in anti-Asian hate crimes across the United States, especially in major cities — and in particular San Francisco.

As a first-generation Japanese-American woman with parents living in the San Francisco area, my peers and I were terrified for our parents and elders and worried for ourselves. After the Atlanta spa shooting, I started wearing sunglasses in New York City to obfuscate my heritage. Hearing news of another community member being assaulted on the streets or the subway, it was difficult not to let the fear permeate throughout daily life. Would I get assaulted on the subway? Who would protect the Asian grandparents with limited English? Our Asian-American community held rallies and protests, and there were efforts to distribute pepper spray to vulnerable elders. Trump’s offensive messaging was not only an inaccurate distraction but put my community in real danger. When public figures or politicians use racialized or stigmatizing messaging, it erodes trust in government or institutional crisis communications.

Similarly, personal messaging from conservative elected officials may have influenced vaccine resistance among Republican men. This, along with persistent misinformation across social mediamay have contributed to spikes in COVID-19 infections. Crisis messaging from international and national institutions was insufficient without the consistent support of elected officials to combat the spread of misinformation and racialized stigma related to the virus.

Looking forward

Officials, institutions, and government entities often repeat the same mistakes when it comes to mitigating a public health crisis. Public health crisis communications play a crucial role in disseminating accurate information to help impacted communities identify risk behaviors, seek care, and reduce spread. Indeed, public health crisis communications should focus on behavior rather than identity. Failure to identify and communicate risk behaviors over factors like sexuality or race increases stigma endangers vulnerable groups and jeopardizes overall public health. The anti-Asian sentiment and wave of hate crimes in New York City did nothing to protect New Yorkers from the fallout of COVID-19 but did a lot to make members of my community unsafe.

In order for public health crisis communications to be effective, they must be timely and, whenever possible, supported publicly by elected officials in addition to public health institutions so that the burden of mitigation doesn’t fall on stigmatized groups. When a crisis communications plan inadvertently stigmatizes or jeopardizes vulnerable groups, it should be reworked with input from those groups. Strong public health messaging can and should protect our most vulnerable.

About Mio Akasako

Mio Akasako is the co-founder and VP of Design at Ash Wellnessa company paving the way for more inclusive and accessible healthcare by enabling and managing at-home diagnostics for the healthcare community. Previously a neuroscience researcher, she spent years studying the circuitry of the visual system before entering the biotech sector to help develop therapeutics that harness the gut-brain axis. She simultaneously earned her graduate degree in Data Visualization at Parsons School of Design. Her desire to combine health and science, tech, and design manifests in her work at Ash Wellness.

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