When Kyle Planck first suspected he might have monkeypox in late June, he went to the CDC website and found six photos of different types of lesions. And that was about it for general public information.

Planck, who is a sixth-year PhD pharmacology researcher at Weill Cornell, kept looking though and found a separate part of the CDC website meant for healthcare professionals. There he found a medical slide deck with more pictures, professional journal articles and more details about symptoms and diagnosis.

Still, Planck’s search for answers was far from over. He had initially suspected an STI or Covid infection as the cause of his fever, fatigue and internal pain, but monkeypox was also on his mind. When repeated testing for both of those came up negative, that’s when he went to the CDC website for more monkeypox information, but as noted, it didn’t offer much in the way of information about where to get a diagnosis or treatment.

“It’s only because I work in academic medicine that one, I had the knowledge about monkeypox symptoms to tell my doctor that’s what I thought it was — and two, get a quick referral to an infectious disease expert to get tested and treated,” he said. “And then three is that I had the ability to take part in the investigational new drug protocol. Basically, my proximity to academic medicine gave me a lot of advantages that many people don’t have.”

Thousands of people along with Planck likely went looking for information from public health sources early on in the monkeypox outbreak and came up short. While information and messaging have improved in the weeks since then, the initial lack of data, conflicting information and government agency inconsistencies that continue even today come as consumer confidence is still recovering from widespread messaging and communications problems of the Covid pandemic.

Déjà vu all over again?

So is the US doomed to a cycle of lather-rinse-repeat when it comes to public health emergencies, outbreaks and even another mass pandemic? After all, it wasn’t only the Covid pandemic but other crises including H1N1, Ebola and Zika virus outbreaks and even further back to the early days of the HIV epidemic, that suffered the same kinds of messaging gaps and ensuing disinformation. The internet is awash in post-public health outbreak analysis and academic studies on what to do, or what not to do when the next outbreak inevitably occurs dating back many years. And yet here we are.

Elyse Margolis

“Unfortunately, what we’re seeing with monkeypox is a similar situation that we found ourselves in with Covid where we’re running after answers — instead of having experts ahead of it and pre-answering some of the questions that we know are going to be top of mind with many people,” said Elyse Margolis, Real Chemistry’s president of client experience. “From an information dissemination standpoint, it’s been messy at best, and we’re trying to play catch up now.”

David Bowen, head of policy and advocacy at Klick Health, said, “We’ve seen this cycle of boom and bust before in terms of preparedness for epidemics … But you can’t be reactive in dealing with this. You need to be prepared to go in so that you have the resources, training and personnel to get a forest fire while it’s small. It’s not the time to be buying hoses and training the firefighters.”

David Bowen

It’s true that some catching up is happening. Messaging and availability of disease information have changed immeasurably in public health communications since Planck became ill in June — on the CDC website there is now a plethora of resources from symptom checks to prevention tips to global outbreak and US case count maps just added on Monday. Meanwhile many local city and community education campaigns have also sprung up.

Experts do believe there have been improvements in the monkeypox response compared to Covid-19 and previous public health outbreaks. The World Health Organization and the US government, for instance, declared monkeypox a public health emergency more quickly than they might have in the past. Local city responses too have been quicker with practical messaging and communications about risk and resources.

In fairness, the dependable reality of viral disease outbreaks is unpredictability. Science lags at first and then changes as new data becomes available on how best to advise people for prevention, protection and treatments. That’s certainly been true with monkeypox.

Parsing the proper LGBTQ+ communications

Still one of the key ongoing issues that seem mired in confusion in the monkeypox outbreak is messaging for the LGBTQ+ community. Men who have sex with men account for 98% of monkeypox cases according to WHO, but thanks in part to an initial hesitation to avoid stigmatizing gay men or the LGBTQ+ community in general, the messages may have been too broad and not targeted enough, some critics say.

Jim Downs

Jim Downs, a professor at Gettysburg College, wrote an article for The Atlantic in May about monkeypox. Downs, who is the author of the recent book “Maladies of Empire” which traces the history of infectious disease in the US, questioned the wisdom of downplaying messaging to the LGBTQ+ community.

“Initially the WHO and CDC had the right intention, understanding that it would be dangerous to put out a message that could potentially stigmatize gay people. But when I wrote that article, what I was afraid of was the messaging getting diluted,” he said.

His assertion then — when only nine people in the US had contracted monkeypox — was that even though that caution around stigma was warranted, “health agencies are putting gay men at risk unless they prioritize them for interventions such as public-awareness campaigns, vaccines and tests.”

To date, about 9,000 people have contracted monkeypox in the US, according to CDC data, and as Downs pointed out, mainstream information and messaging are still not getting it right. Too much focus on the “no one is immune” message is muddying the waters and creating dangerous delays, he said.

“We have to be careful about using outlier cases as the driving force or the way we’re understanding the outbreak,” he said. “Science always acknowledges and recognizes variation, but we shouldn’t be focusing on the one or two percent of possibilities when the vast majority of cases are in men who have sex with men.”

Science and data need to stay at forefront

Margolis agreed about the importance of science. She pointed to those lessons learned during Covid as key for messaging.

“It’s important for us as communicators to think about following the science,” she said. “The world is in a very different place in terms of our ability to make decisions based on science and data, so we shouldn’t be afraid of not putting information out for fear that we’re fear-mongering. People understand more now that you make decisions based on the information you have. It’s when it’s opaque or confusing or just not there that you start to get in trouble.”

Another marketing lesson learned from previous crises, and particularly during Covid, is the power of local communications. That is, the importance of community-targeted messaging and local trusted sources speaking up.

Chicago, Philadelphia, San Francisco and New York are some of the cities leading the way with proactive messaging that targets the LGBTQ+ community most at risk without layering on stigma.

Klick’s Bowen reviewed monkeypox health messaging on Monday and pointed to New York as a good example of that.

“The first thing they said is ‘anyone can get and spread monkeypox.’ That’s a very simple, straightforward comment but grounds us in the idea that hits people and potentially anyone is at risk and potentially anyone is a spreader. And then they went on to talk about some of the characteristics of the outbreak in New York and who they are reaching out to most to get vaccinated,” he said.

On the ground in New York, Planck pointed to anecdotal evidence of on-the-ground messaging, posters he saw “all over” Fire Island Pines last weekend about the signs and symptoms of monkeypox. Fire Island towns such as Fire Island Pines and Cherry Grove are longtime open havens for LGBTQ+ people.

Still, Planck said even those were a bit of a disappointment in that the QR codes on the posters linked to a basic information New York State public health website.

Trusted sources, and including LGBTQ+ representation since it is the primarily affected group right now, should also be considered in monkeypox messaging efforts.

“Targeted messaging about monkeypox whether it’s about symptoms or risk reduction strategies or whatever it may be, lands better when it comes from LGBTQ+ folks,” Planck said.

Demetre Daskalakis

The appointment of Demetre Daskalakis as deputy coordinator on the White House task force on monkeypox last week was a welcome step, he said. Daskalakis is a well-known and trusted LGBTQ+ community member and advocate. His previous clinical practice in New York focused on providing care for underserved communities there. He’s currently the director of the CDC’s division of HIV Prevention.

In June, Daskalakis narrated a CDC YouTube video outlining things to know about monkeypox at that time.

While many cities may be generally getting it right, don’t forget about more rural areas where vaccination and prevention messages may not reach, Downs cautioned. There are men who drive to cities from the suburbs once a month or so to have sex or are living in small towns and are hesitant to publicly reveal sexual preferences who need to get the same messages — maybe even more so.

Remember that during the Covid pandemic, misinformation or just the absence of enough information in rural areas and among communities of color helped contribute to poor outcomes in infection rates and even deaths.

Briana Ferrigno

“There’s a lot we can learn from Covid communications and the response now that we’ve had two years to reflect on,” said Briana Ferrigno, president of McCann Global Health. “The blunders around response time, the overall delays and confusion, the misinformation that persists even now and the myths at the beginning of Covid when it was downplayed by governments around the world, not just the US. … We’ve already seen some of that delay again in monkeypox with a lot of people pointing to that delay contributing to not being able to contain the disease quickly enough.”

Clearer messages needed for vaccines and treatment

So with monkeypox messaging, communications and marketing still coming up to speed is there a chance that advertising agencies and professional ad campaigns will swoop in as they did during the Covid pandemic?

Donated time and creative work from major agencies and the Ad Council — alongside big paid campaigns such as HHS’ “We Can Do This” $250 million effort — helped to deliver concise marketing messages around masking, testing and vaccinations. The Covid-19 vaccine makers — Pfizer, Moderna and even Novavax — all contributed to public health messages with awareness ads of their own about the importance of vaccination.

While that may happen with monkeypox, there is little evidence so far. Partly because the outbreak is much smaller — and unfortunately maybe seen as not as important because of severity.

HHS Sec. Xavier Becerra ruffled some feathers in the LGBTQ+ community when he said a few weeks ago — before the public health emergency was declared — that while the US needed to be vigilant he added, “But how many people have died compared to say Covid? Zero.”

Beyond general messaging about monkeypox facts and risk mitigation, there are still-emerging communications around the vaccines and treatment. The updated vaccine Jynneos from Bavarian Nordic, and antiviral treatment TPOXX or tecovirimat from Siga Technologies, are both playing key roles in public health emergencies. However, neither of the manufacturers is likely to create their own campaigns — both are suppliers only to governments and in the US, to the Strategic National Stockpile.

Planck who received a two-week course of TPOXX, which is approved as tecovirimat in the EU to treat monkeypox but in the US is only FDA-approved for smallpox, isn’t waiting for that messaging.

Planck believes the severity of his monkeypox illness was mitigated by taking TPOXX — and that’s the same conclusion a dozen or so other people he knows have taken it reached. The CDC currently is allowing the use of TPOXX to treat monkeypox in the US, but only as an expanded access Investigational New Drug (EA-IND) with supplies only available from the strategic national stockpile. Translation? It’s very hard to get, and essentially impossible outside of large cities.

While Planck knows his evidence is anecdotal — and he appreciates as a pharmacologist that the effectiveness of TPOXX still needs to be proven through clinical trials, he’s on a mission to do just that. He’s raising awareness, writing letters and speaking up at meetings with legislators and public health officials to try to speed up access and distribution.

He also wants better messaging from public health officials. But he’s not waiting around for that either. Planck along with other recovering monkeypox patients along with LGBTQ+ advocates have taken up the cause — in true young millennial fashion — sharing resources with their followers and others on social media.

They’ve created updatable Google docs with vaccine availability dates and times as well as TPOXX treatment options and possible physician prescribers from across the US. While the CDC has updated its data online, there is no official monkeypox vaccine locator or therapeutics locator.

At the end of the day, it may be the local messages and social campaigns that most effectively help turn the tide of monkeypox infections. But certainly, no effort whether federal, state, local or grassroots will work without coordination.

Bowen said, “We often talk about public health communications as it were only one way. That is agencies, in this case, government agencies talking to an affected community. But of course, really effective public health communication is two-way. It’s informed by the community that it’s trying to reach and addresses that community with the right messages, with the right messengers in the right channels. That’s always a work in progress, especially in an outbreak where you’re learning new things every day.”

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