BROOKE GLADSTONE On this week's On the Media. We don't know how long antibodies from vaccination or infection can protect us from COVID. But try thinking about it like this:
KATHERINE WU Just because I walk past a restaurant at 1 a.m. and I don't see the kitchen bustling doesn't mean they've lost the capacity to make food.
BROOKE GLADSTONE Also, when reporting on long COVID, journalists overlook the wisdom of those living with the condition.
FIONA LOWENSTEIN Many long COVID patients have had a more intimate view of this disease for longer than pretty much anyone else in the world, because we were the only people monitoring our symptoms. Most of our doctors were actually too overwhelmed to be in regular touch with us.
BROOKE GLADSTONE Plus, why is everyone talking about monkey pox?
JON COHEN Any time a virus behaves in ways that are different and new, everyone who studies viruses gulps. It's a gulp moment. But I want to stress something. This is not COVID 22. Let's be real.
BROOKE GLADSTONE It's all coming up after this.
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BROOKE GLADSTONE From WNYC in New York, this is On the Media. I'm Brooke Gladstone. What's that cliche? You may be done with COVID, but COVID's not done with you. Well, here the prevailing variant is Omicron BA.12.1 with BA.4 and 5 bringing up the rear. And just as the virus mutates, our collective immunity against it continues to evolve. Here's America's Dr. Fauci on PBS NewsHour last month.
DR FAUCI Although immunity following infection and recovery does not last indefinitely, it does give a degree of – variable degrees of protection against severe disease if you get reinfected. So if you add up the people who have been infected, plus the people who've been vaccinated and hopefully boosted, you have a rather substantial proportion of the United States population that has some degree of immunity that's residual.
BROOKE GLADSTONE The data suggests that the people who are best protected, though by no means invulnerable, are those with so-called hybrid immunity. Acquired through vaccination plus infection or vaccination plus boosting with a different vaccine. CDC data from last month show your risk of hospitalization is cut 86% after two shots in a booster. Even if Omicron slipped past your antibodies and got you sick. But more than half of us haven't gotten the booster. Meanwhile, the virus keeps shape shifting, and wearing masks is getting really sweaty. So what is the current state of our immunity? For Katherine Wu, who writes for The Atlantic and has a Ph.D. in microbiology. We're still collectively scaling the mountain of protection peak. While its summit may be out of sight. She says we've made good headway since we left base camp in 2020. Katherine, welcome back to the show.
KATHERINE WU Thank you so much for having me again.
BROOKE GLADSTONE With more than 5 billion people vaccinated globally, you wrote this, this week: it feels in some ways like gazing down the side of a mountain we've been trekking up for a good 30 months. A nice, stubborn buffer of elevation now lies between us and the bottom. The sea level status of no protection at all, even as the fast mutating virus pushes down from above. Our footing has, for more than a year now, felt solid. And the ground beneath us, unlikely to give. But in the past couple of months, new cases are trending upward. Is the power of vaccines and some 5 billion bodies to protect and strengthen our collective immunity starting to wane?
KATHERINE WU First and foremost, we definitely have to define what sort of immunity we're talking about at every single juncture here. Immunity is not binary. It is also not permanent protection against severe disease and death. Those defenses are staying relatively strong and they have since the vaccines rolled out.
BROOKE GLADSTONE This week you reflected on the early days of the COVID vaccination and sticking to your wonderful mountain metaphor, you said back when the vaccines were new and a near-perfect match for the circulating strain. Many people felt hopeful that we'd quickly clamor up to some symptom free vista, maybe even dart up to the no infection point. But even last summer, you pointed out how unlikely that was. And you wrote. When a virus has so thoroughly infiltrated the human population, post-vaccination infections become an arithmetic inevitability. Since we're not as elevated above the threat as we might have liked, where are we?
KATHERINE WU You have many, many, many different layers of defenses. Antibodies are going to be some of the frontline defenders that can, at their most powerful block, any infection at all. But antibodies do fade rather quickly in the months after infection, and this happens after pretty much any infection that we're aware of. But this makes sense. Imagine if we kept antibody levels high after every single infection we ever had. We would explode based on all the antibodies we kept in our system. It's a resource management thing. Just because I walk past a restaurant at 1 a.m. and I don't see the kitchen bustling, it doesn't mean they've lost the capacity to make food. If I come back the next day, they're going to whip up recipes because they've memorized them. They're experienced making them. And it's going to be really quick for me to get my order. The immune system works in much the same way, and the body retains the memory of the pathogens and faux pathogens we see in vaccines. Those memories are stored long term, which means that should the virus come back, we'll be able to react much more quickly than we would have the first time. And that is why protections against severe disease hold so sturdy.
BROOKE GLADSTONE We're very familiar with antibodies, but maybe less so with what else our immune systems can offer, like B cells and T cells that respond differently.
KATHERINE WU B cells are actually the source of antibodies. Your body makes a ton of B cells in response to the vaccines and viruses and other pathogens that it sees. And, you know, it's sort of mapping onto all sorts of surfaces on the pathogen. You know, it's like having this whole arsenal with a whole repertoire of options holstered in those B cells. And the amazing thing is that, you know, B cells can sort of refine their potency over time, sort of enhance their ability to produce really just primo antibodies to latch onto surfaces better and even recognize more parts of the virus. We talk about how the virus is evolving over time, but the immune system is evolving, too. And then we have these assassins called T cells that really complement what B cells and antibodies are doing. T cells hang out just waiting for an infected cell to move on by, and some of them can kill those infected cells directly. Other types of T cells can actually help B cells make more antibodies. There's a lot of partnership, redundancy and resiliency built into the immune system. And the amazing thing about T cells is they can recognize parts of the viruses that B cells and antibodies sometimes can't. My T cells are going to be super different from your T cells, which means even if a virus evolves and it manages to get around some of my T cells, it may not necessarily get around yours. So it's just going to be really hard for any version of the virus to be totally dumping T cells on a population wide scale.
BROOKE GLADSTONE You point out that our current vaccines are still based on the original virus. It's no longer circulating. Variants like Delta and a micron were able to slip past. And now it seems that even if you get boosted immunity from, say, an early Omicron infection like I did, that's not going to protect you necessarily from the newest updates. So how does the continuing march of mutation factor into our current level of immunity?
KATHERINE WU The most successful versions of the virus are going to be the ones that are able to hopscotch over some of our immune defenses. The virus is copying itself. It's making some mistakes. The most successful versions of it can get around some of our antibodies. The body is going to keep reacting. The immune system is going to keep trying to sort of tailor its responses to keep up. Once the virus wises up to those defenses, it's going to try and circumvent those. We're in this kind of arms race. I think it would be extraordinarily unlikely for us to ever have a reset back to spring of 2020. But that doesn't mean, you know, we can't have some erosion of that protection. You know, if we are hiking up this mountain, the terrain around us is shifting and we need to use a better trail map. We need to update our gear and just make sure we're keeping pace with this. We have spent so long fighting our way up this hill, we don't want to lose any ground whatsoever.
BROOKE GLADSTONE Some experts recommend another dose, which can restore the body's ability to stave off severe disease from BA.1, that was the first American variant. But we're kind of past BA.1, now, aren't we?
KATHERINE WU There is widespread consensus now that we do need at least a first booster dose to protect against Omicron and all of its offshoots. It is different enough from the version that was in our vaccines that we do need to compensate for that difference by adding on a vaccine dose to sort of broaden and enhance our immune response.
BROOKE GLADSTONE But it's the same vaccine.
KATHERINE WU Yes. So far. Yeah. BA.1, the original version of Omicron has pretty much been outcompeted here in the United States. So being infected by BA.1 does not guarantee that you're going to be protected against some of its siblings.
BROOKE GLADSTONE Dosing again and again with the same shot?
KATHERINE WU We probably do need to update our vaccines quite soon. It probably does not make sense to use only the original version of the virus in perpetuity. It may make sense to keep it mixed in just because it's possible. The next version of the virus that troubles us could actually look more like the original version than like Omicron. For the fall, a lot of experts are thinking - well, let's try something bivalent - basically a combo shot. Use the original version of the virus and then combine it with something Omicron-y, so that we're getting the best of both worlds. Clearly, the virus is slinging variants and some variants at us at an incredibly fast pace. We get flu shots once a year, and that is the most frequent regular booster type of vaccine that we get. The pace at which we have been giving out COVID vaccines has been a couple times a year, at least depending on who you are. That's not a pace we can sustain. But if we know that they're not doing an extraordinary job at preventing infection, that they're not perfect. That's not an indictment of them, but it's an invitation to think, what else can we do?
BROOKE GLADSTONE What are we looking ahead to for the fall? You talked about a dose that could include may be two spike variations for those who follow the lingo. Maybe more in the same shot. You call them multivalent or bivalent. Are they in the works?
KATHERINE WU Both Moderna and Pfizer have a couple of versions of these bivalent shots in trials. Probably the most promising candidates might include an original mixed with Omicron. That is likely going to come by the fall, but it depends on what the FDA decides is going to be the most prudent formulation, and they're going to be meeting at the end of June to make that decision. But it's incredibly tricky. We're months away from fall, and the virus could pull any number of tricks before then.
BROOKE GLADSTONE There was a growing concern over dangerous variants potentially developing in areas with lower vaccination rates. What is the state of global vaccine access now?
KATHERINE WU Unfortunately, still disastrous, which is a problem for all of us. There is no way to silo a single nation off from a pandemic. A pandemic, by definition, is global. The more people who go without immunity, the more this virus is going to have an opportunity to spread copy itself to make more mistakes when it's copying itself and find new ways to get around the immune defenses that we do have.
BROOKE GLADSTONE So to conclude and use any metaphor you like, Katherine, where do we stand on the current state of our immunity.
KATHERINE WU For individual people who are up to date on their vaccines, they should not be worried about getting seriously sick, but that doesn't mean that all other measures can go away. The world remains under-vaccinated. The US remains under-vaccinated. There are still people who don't have access to vaccines or aren't eligible or have chosen not to get them or have chosen not to stay up to date. And that does leave holes in our immunity. Eventually, hopefully, the next shot that everyone is able to get together is something that is more up to date.
BROOKE GLADSTONE Katherine, thank you very much.
KATHERINE WU Thank you so much for having me.
BROOKE GLADSTONE Katherine Wu is a staff writer for The Atlantic and holds a Ph.D. in microbiology. You can find her most recent piece in The Atlantic under the headline. "Vaccines Are Still Mostly Blocking Severe Disease.
Coming up, good information can also confer immunity. This is On the Media.
BROOKE GLADSTONE This is On the Media, I'm Brooke Gladstone. As we consider the current state of our immunity, we take a step back to 2020, when we were all abuzz with the phrase "herd immunity" and its companion "flattening the curve." We believed that with enough antibodies, however we got them, we could as a population become, quote, fully immune and stamp out the virus for good.
NEWS REPORT Herd immunity could be our best chance of getting back to enjoying ourselves together. If enough people have the antibodies for COVID 19. The entire population can be protected. [END CLIP]
BROOKE GLADSTONE Alas, breakthrough infections and reinfections are increasingly common since the delta and now the Omicron variants have emerged. This fantasy of a clean and easy fix has been obliterated.
NEWS REPORT As Omicron spread quickly across the globe. Some experts had hoped there could be a silver lining. That it would help finally deliver the promise of herd immunity against COVID 19. But herd immunity in which enough people become immune to a virus through vaccination or infection won't come with Omicron, experts now say. [END CLIP]
BROOKE GLADSTONE Thus herd immunity, already fraught by dint of its demeaning name alone, was abandoned. But David Robertson, a doctoral candidate in Princeton's History of Science program writing in Stat News explains that we never really understood what herd immunity meant for COVID in the first place.
DAVID ROBERTSON Early on, primarily in Britain, was where it first took off as a term. Back in mid-March of 2020 before the UK decided to lockdown, when they were basically going to do an approach that would have been voluntary, social distancing and other measures. Experts there have said that this epidemic will ultimately end with herd immunity. Whether or not to get a vaccine, the aim would therefore be to protect vulnerable people while that happened. Sometimes they gave a number. They said probably about 60% of people would need to recover. The idea was not to allow infections to happen, but to accept that they were going to happen and to therefore try and focus resources on not letting them happen among those people who would be particularly high risk.
BROOKE GLADSTONE Some people came to interpret the term as a do nothing, let it rip strategy, you wrote that would result in a huge number of avoidable deaths.
DAVID ROBERTSON Some people got fixated on the term herd and used this to suggest that it's an inappropriate term for human populations. It's important to note that herd immunity as a term was not coined to understand immunity arising from vaccination. It was coined to understand immunity arising from infections. It became much more closely linked to vaccination policy from roughly the 1970s onwards, and that's largely because of the immense success of postwar mass immunization programs against polio, measles, smallpox, which was eradicated in this period. But with these diseases, we get sterilizing immunity either from previous infection and recovery or from vaccination. And so someone can't be reinfected and can't pass the pathogen on.
BROOKE GLADSTONE One thing I learned from your piece was this phrase "elimination threshold." We seem to think, at least at the beginning, that some strategy or other would provide an elimination threshold. Generally, vaccination would get rid of this, but...
DAVID ROBERTSON that's not the case with more mutable diseases like SARS-CoV-2. I mean, we knew that because we have other coronaviruses that regularly infect us. We've studied how often they kind of regularly infect people. That should have been the go-to assumption. That whatever kind of immunity we had from prior infection, people would ultimately be infected again. But that doesn't mean that herd immunity is no longer a relevant concept.
BROOKE GLADSTONE In fact, it was applied in the case of the historic 1918 influenza with mice to figure out how many immune individuals in a population you needed in order to eliminate the disease.
DAVID ROBERTSON In 1923, British bacteriologist had different quantities of immune susceptible and infectious mice in different cages. And every day they would study the number of infections and deaths, and they would plot these on graphs, try and correlate waves of diseases like mouse typhoid with ratios of immunity and susceptibility in operations. See if they could tinker around with these ways by increasing susceptible immune and infectious mice into different isolate cages. It was really the first time to try and really understand the mechanisms of spread of an infectious disease and the way in which immunity could bring it to a halt. So it is also the origins of this idea that there may be an absolute quantity of mutations needed in a population, and that's what the threshold is that becomes more important to vaccination policy. But I think what's also important and something that we've really lost that they had in these experiments in the 1920s and 1930s, was an attention not just to the quantity of immunity in these cases, but also that they ask about. What would be the best way to distribute immunity across that population? And so when SARS-CoV-2 comes along and by March, April, we know certainly who's at most risk. I read this as really saying, if we can't stop this thing from sweeping through the population, how can we maybe try and distribute immunity, viral infection, vaccination when it comes to make sure that happens in places that will protect those people the most?
BROOKE GLADSTONE But the whole notion became something of a PR nightmare. Back in October 2020. You wrote about a trio of epidemiologists from Stanford, Oxford and Harvard who came together to voice their support for these herd immunity tactics. It was a document called the Great Barrington Declaration, drafted at the American Institute for Economic Research, a libertarian think tank based in Great Barrington, Massachusetts. They said that you couldn't really eradicate this virus and that instead of strict lockdowns, governments should just protect the most vulnerable while allowing natural infections to build up everyone else's immunity. And as you noted, this did not go over well.
DAVID ROBERTSON Well, so it was dismissed as quote unquote, fringe epidemiology by Anthony Fauci and by others. It was dismissed by other people like Dr. Tedros and W.H.O.. But in my opinion, no one really engaged with the substance of the declaration. They focused on the fact that the declaration was in some sense, anti lockdown was against severe restrictions like school closures. So that was damaging to those people who are least vulnerable to COVID 19. But really, that was an unfair characterization. The important part of that document was what was called focused protection. It was the idea that we have limited resources and we can only do things for a certain period of time. Therefore, what we need to do is use the greatest resources we can to protect those people known to be at highest risk. And so the authors elsewhere outlined four different risk groups. The first well-known risk group with elderly people in care. And so they suggested, for instance, using people who had already recovered and had some level of immunity to SARS-CoV-2 to work in close knit settings with these people to help minimize infections, to focus testing on care homes. And there were many other ideas. The main thrust of the great declaration in my mind and the great tragedy of it being dismissed, was that this idea of focus protection was thrown out the window.
BROOKE GLADSTONE I mean, it sounds wonderful to protect the vulnerable and let everyone else roam free collecting antibodies along the way. But since COVID is erratic and who is vulnerable is something that turned out to be more difficult to define than we anticipated. And the Great Barrington Declaration came out before there even was a vaccine. Didn't that make relying on natural infection even more of a bad bet?
DAVID ROBERTSON There are lots of places that didn't do severe restrictions and lockdowns. They may have had bad outcomes. There are lots of places that did very severe restrictions. Such as Peru, which had one of the worst outcomes. New York did quite severe restrictions, had very bad outcomes early on. The U.K. did a lot of restrictions, had bad outcomes. So I'm not so convinced that there's an easy, direct relationship between the severity of restrictions and the public health benefits. But putting that aside, I think that very few places didn't do restrictions, but also did what the Red Baron declaration called for, which was focus protection. It wasn't just do nothing and let the military build up in the population. The idea was to use limited resources to protect those people who are most at risk. While the inevitable happened anyway, which was that some people would continue to be infected until the epidemic went into a downturn. There are places that didn't do severe restrictions, perhaps, but they didn't, for instance, target testing and isolation methods of nursing homes. There wasn't even a conversation about doing that.
BROOKE GLADSTONE And when it comes to the disability community that feared being stigmatized and isolated even more, if they were the only ones who had to go behind closed doors. Take a family where a child has asthma. The child prior to the COVID 19 epidemic would go to school with all the other kids. If we used the Great Barrington Declaration approach, perhaps kids without asthma would go about their lives with limited restrictions. But those kids with asthma would have to stay home. Whereas if everybody were following extreme restrictions, then they wouldn't be stigmatized. That's the argument.
DAVID ROBERTSON It's not just children with asthma and children in general, incredibly low risk. But I think the main point stands that if our resources are focused on shutting down schools and setting up at home education through Zoom and other mechanisms like that, well then how many resources do you really have to give to that one or two students at the school who actually are in the risk category. You're just basically throwing them in the same category as everyone else and not providing them with special resources. The results are coming out now. I mean, at home, education was an abysmal failure for many children, particularly poorer children, and particularly for children at higher risk.
BROOKE GLADSTONE And so on. The matter of the phrase herd immunity. We should have replaced Hird with a collective and the word immunity with protection or resistance. Tossing out both words.
DAVID ROBERTSON Personally, I don't have such a problem with the term herd. I think it does its job of identifying the idea of a collective. I understand why other people may not like it.
BROOKE GLADSTONE But immunity that you have a problem with. The policy prescriptions would have made more sense when people understood that they weren't promising a cure but protection for the greatest number of people.
DAVID ROBERTSON For me, the crux of this term and the reason we failed to understand it was precisely because it's this question of immunity, where immunity meets me and society, and it's navigating how my immunity works and fits in with those around me, how infection works in kitchen windows around me. And COVID 19 came at a time of immense social atomization. And so, perhaps predictably, our response to that question was to see it as a very individualistic question about personal immunity. Personal protection.
BROOKE GLADSTONE David, thank you very much.
DAVID ROBERTSON Thanks for having me.
BROOKE GLADSTONE David Robertson is a doctoral candidate in Princeton University's History of Science program. Back when the controversial Great Barrington Declaration was penned, few knew about long COVID, especially those who didn't have it. It certainly would have changed the calculus. Infection would not be a get out of jail free card for the millions with long COVID, but more of a miserably prolonged house arrest. Symptoms such as brain fog, fatigue and nerve damage can persist for months or even years after an initial infection. A new CDC study published Tuesday claims that as many as one in five COVID patients may develop the condition even if they weren't very sick in the first place. But science doesn't yet understand the mechanisms underlying its baffling set of symptoms or how to cure it. Fiona Lowenstein, an independent journalist, first experienced COVID symptoms on March 13th, 2020 while living in New York City.
FIONA LOWENSTEIN And I got sick as a 26 year old with no known significant preexisting conditions. So I felt very confident, let's say, that I would recover quickly.
BROOKE GLADSTONE After a brief hospitalization for shortness of breath. Loewenstein expected a quick recovery only to face a new series of symptoms ranging from gastrointestinal issues to skin rashes to intense migraines.
FIONA LOWENSTEIN So I told myself that the sinus problems and the post nasal drip was the result of seasonal allergies come early. And I convinced myself that the GI issues were because I had eaten a little bit of food at the hospital and I must have gotten food poisoning. So that just kind of goes to show you how unwilling I was to consider this as an outcome, because I just didn't have the framework to understand it was possible.
BROOKE GLADSTONE So back in March 2020, Loewenstein started writing about long COVID in the New York Times when no one else was, and building a global support network of 11,000 long COVID patients, trading notes on symptoms, treatments, doctors and new research. Loewenstein then produced a patient centered guide for journalists reporting on long COVID to help fix what ailed the coverage of a puzzling, sometimes stigmatizing condition. Welcome to On the Media, Fiona.
FIONA LOWENSTEIN Thanks so much for having me. It's great to be here.
BROOKE GLADSTONE Much reporting on long COVID falls into the clichés of spotlighting young, healthy, athletic adults who are suddenly sick with long COVID for months or even years.
LONG-COVID PATIENT March 13th, 2020. Till now, I've been dealing with debilitating long COVID.
LONG-COVID PATIENT I was healthy, working out every day. Weekends I would go travel, running 14, 16, 18 miles. My first symptoms that really showed up was shortness of breath. I still get tingling and numbness. [END CLIP]
BROOKE GLADSTONE These stories are intended, I guess, to emphasize that anyone who gets the virus can experience long COVID, which is precisely what you think is very important for people to understand. But you've also said that this kind of coverage featuring the able bodied, the young, the white is not necessarily a good thing.
FIONA LOWENSTEIN It's important to remember that it's not just the young and healthy who are getting sick, but that the lives also matter of people who may have already been dealing with a chronic condition or a disability and are now dealing with worsened health. This narrative also doesn't allow room for one of the more interesting facets, in my opinion, of long COVID diagnoses, which is that long COVID diagnoses are often accompanied by additional diagnoses. A complex chronic condition forms where they are dealing with that long term, either for several months or several years or often for the rest of their lives. And a lot of the patients that I interview for the stories I write say that they have found the most helpful care from not necessarily the clinic that set themselves up yesterday or six months ago to treat long COVID. But from a provider who has been treating patients with post-viral illnesses for a long time. There are also people who are getting diagnosed with long COVID. They're actually getting diagnosed with conditions that they most likely had prior to contracting COVID, but which they were not diagnosed for for any number of reasons, including the fact that providers often aren't super well educated on these illnesses. So I personally think that's a really interesting story. Right, because it also tells us something about the way medicine has treated these illnesses historically and the various barriers to accessing care that some long COVID patients may have faced before they even realized they were facing them.
BROOKE GLADSTONE Especially those in marginalized communities. People who are not generally featured in these stories. Actually is their data that says they are disproportionately left out of these stories.
FIONA LOWENSTEIN I wish that there had been a comprehensive media analysis of long COVID that could give us that information at this point. But unfortunately, we don't even have the data on how many people in this country are suffering from long COVID. I'll mention a story that was written at some point last year that had the headline Long COVID Predominantly Affects White Women. The story was basically pulling from studies that were largely recruited from long-covid clinics and again, long-covid clinics. They mainly exist in major cities. They're often attached to universities. Often they do not treat patients who are uninsured, although that is changing to some extent in some regions. So if you're recruiting predominantly from long-covid clinics, your demographics are going to be different from if you were recruiting from anyone who's ever had long COVID.
BROOKE GLADSTONE You've also called for more precise language and long COVID coverage. For example, the word treatment you say is often thrown around, unmindful of the confusion it can cause.
FIONA LOWENSTEIN The biggest issue that comes up is the question of supportive treatments versus cures. It's very common for COVID long haulers to have mental health issues. I mean, a lot of people are experiencing really intense financial issues as a result of developing long COVID. We've also seen a lot of patients losing ties with their family members or their coworkers as a result of this sidelining for mainstream society. However, there's sometimes a misunderstanding that because there are perhaps high rates of anxiety or depression or psychosis among long COVID patients, that means that those psychological illnesses are the cause of the physical symptoms. That seems extremely unlikely based on all of the research that's been conducted. So when we're talking about mental health treatment, for example, we want to be clear that this is a supportive treatment. It's something that's going to help someone lead a better quality of life, but it's not going to cause all of their long COVID symptoms to vanish. And I think that's an important thing to be clear about here.
BROOKE GLADSTONE Another term you're not crazy about is the phrase medically unexplained.
FIONA LOWENSTEIN So medically unexplained symptoms might seem like just a very basic term that is essentially saying we don't know what the root cause of these symptoms are. However, it's often used or interpreted to imply that there is no physical biomedical root cause when there is no obvious root cause for disease when researchers can't find something. Oftentimes the response is, Well, it must be in the patient's head. But there is a long precedent of complex chronic illnesses that have multiple systemic issues where a root cause is not always evident.
BROOKE GLADSTONE You invite journalists to consider the difference between long COVID survivors versus patients. Why does that distinction matter?
FIONA LOWENSTEIN Some long COVID patients like calling themselves COVID survivors, but especially at the beginning of the pandemic, when there was a lot of news coverage of, you know, the survivors and the people being discharged from the hospital, those of us who had remained sick felt a little bit like, this is not my story. I'm still battling this on a daily basis. So that's why I often urge caution around the word survivor. I think the concept of surviving long COVID is very real, but there are just a lot of patients out there who don't feel like they've fully survived the illness yet.
BROOKE GLADSTONE Throughout the guide that you wrote, you invite journalists to, quote, consider patients as experts. So what is the importance of centering patients as experts in media coverage?
FIONA LOWENSTEIN Many long COVID patients have had a more intimate view of this disease for longer than pretty much anyone else in the world, because we were the only people monitoring our symptoms. Most of our doctors were actually too overwhelmed to be in regular touch with us. Most of them also were not aware that COVID could cause long term symptoms. And so it was us as individuals that were kind of tracking what was happening in our body from day to day. The other thing that is important to keep in mind is that patient leaders have emerged, patient advocates, patient researchers. They did one of the first surveys on long term symptoms back in May of 2020. They've been cited by the NIH. There are patients on the NIH advisory board. There was a really good story recently by Betsy, Ladyzhets that went in-depth on the NIH, his research into long COVID, interviewing patient researchers and interviewing patients who are advisors and basically got to the fact that the research is not moving along in the way that it should be. And there are some pretty significant potential errors that are going to be made. So if we don't talk to the patient leaders who are in the rooms for those discussions. We're missing at least half of the story.
BROOKE GLADSTONE So how has long COVID coverage evolved over the last two and a half years? Now that it's existence seems to be generally accepted? Is the coverage okay?
FIONA LOWENSTEIN The coverage has definitely improved a lot. I think the biggest issue that we're dealing with right now is that long COVID coverage is still often siloed. It's kind of a footnote to the story or its own story, but it's rarely mentioned within these larger stories about the future of the pandemic, the return to, quote unquote, normal, or even questions about pandemic mitigation measures. Ed Yong is the reporter who has done a lot of coverage on long COVID. And so his pieces in the Atlantic in the summer of 2020 really helped to shift a lot of journalists attention toward this issue. One thing he'll do is even when he's writing about a topic that seems unrelated to long COVID, like the grief that many Americans are experiencing, having lost loved ones to the illness or the attrition of health care workers, he still usually includes at least a sentence or two about long COVID. In the case of health care workers, some of them have quit because they have long COVID. In the case of people grieving COVID deaths, many of those people themselves have long COVID. That's something that I would love to see more of.
BROOKE GLADSTONE There are estimates that the future coverage of COVID is going to be about long COVID, principally because of the economic impact.
FIONA LOWENSTEIN I certainly hope that's what we'll see. But I think a lot of people really don't understand the impact that long COVID has had on the economy in the workforce. Katie Bach did an excellent analysis for the Brookings Institute. And she says this is a conservative estimate that 1.6 million Americans may be out of work due to long COVID.
BROOKE GLADSTONE So what are the consequences of spotty long COVID coverage? The one that I know you're very concerned about that I'm really interested in is what happens once therapies become available to deal with long COVID.
FIONA LOWENSTEIN Yeah, I'm really glad you asked about that. So in the process of writing this guide on media coverage, I came across this really interesting paper called The Color of AIDS, an analysis of newspaper coverage of HIV AIDS in the U.S. from 1992 to 2007. It's authored by Robin Stevens and Shawnika J Hull. There was a decline and shift in media coverage of HIV AIDS in the United States around the same time that there was an increase in HIV rates among black Americans and rates among black Americans surpassed those among white Americans. This also correlated with the emergence of treatment for HIV. But who gets access to treatment? There are a lot of barriers to accessing health care in this country. So I have that same concern about long COVID. I'm worried that once promising treatments do emerge, the media might take that as a cue to stop covering the issue. But we can't stop covering the issue then. Firstly, because there are going to be people who have been sick for many years by that point, we don't know that these treatments are going to be equally effective for everyone. We're going to want to make sure that even if the mostly white patients who have been speaking online about their experience start to say that they're getting better and they found a treatment that we're still investigating, who else might have long COVID, who might not be aware of the treatments available? And to zoom out a little further. We need to document what's going on for history sake. You had an excellent show recently with Laura Spinney talking about how long COVID is not necessarily unprecedented. Then there have been other disease outbreaks that have resulted in long term illness. And those stories, we're digging those up right now to try and understand what's going on. If future generations deal with disease outbreaks and pandemics don't have to search as hard to find the stories of the long haulers who survived this pandemic, that will make them obviously feel less alone. But it will also help us make sure that they and the people who are supporting them and treating them and urging policy on their behalf have the information to know that that's not unprecedented either.
BROOKE GLADSTONE Fiona, thank you very much.
FIONA LOWENSTEIN Thank you so much for having me and for covering this really important topic.
BROOKE GLADSTONE Fiona Lowenstein is the founder of Body Politic, a global network of COVID patients and editor of the forthcoming book The Long COVID Survival Guide. Coming up, monkey pox. Not just for monkeys anymore. Actually, it never was. This is On the Media.
BROOKE GLADSTONE This is On the Media, I'm Brooke Gladstone. This month, another virus hit the headlines as if we didn't have enough to fret over.
NEWS REPORT The CDC is warning doctors to be on alert for an outbreak of monkeypox, a rare viral disease typically found in Africa but now discovered here at home.
NEWS REPORT Symptoms of monkeypox include fever, nasty, bubbly, rash, muscle aches, chills. There are now dozens of cases being investigated throughout Europe. That's all we need. [END CLIP]
BROOKE GLADSTONE As of Thursday, the CDC said that there were ten cases of monkeypox scattered across the U.S. But unlike the coronavirus strain we called novel in 2020, when we first saw it in humans, monkeypox is not new. Jon Cohen is a writer at Science magazine whose focus is infectious disease. He first covered monkeypox in 1997 during an outbreak of about 500 cases in the Democratic Republic of the Congo.
JON COHEN I had to hire my own airplane to fly to Kasai Oriental in Congo, and then I had to go on motorbikes for five days into the rainforest looking for cases of monkeypox. It was so remote that unless I brought it back or someone else who was there with the medical teams – there was no way it was going to get out of there.
BROOKE GLADSTONE It was speculated that the surge was a result of a drop off in vaccinations. For another virus, this one was smallpox.
JON COHEN Well, it's abundantly clear that theory is true.
BROOKE GLADSTONE Oh, it is true.
JON COHEN That's what's happening right now. The vast majority of people who are becoming infected in this outbreak were not vaccinated for smallpox. They're younger. I'm of a certain age where I was vaccinated. The United States stopped vaccinating in 1972. But if you were born before 1972 in the United States, you likely have a pockmark on your left arm or thigh. Mm hmm. It was a global campaign led by the World Health Organization to drive that virus into laboratory freezers. That's the only place it exists right now. Smallpox is the only disease humans have ever eradicated, and that's because it only was in humans. But monkeypox easily infects a lot of different species.
BROOKE GLADSTONE What's the relationship of monkeypox to smallpox?
JON COHEN They're distant relatives. Monkeypox isn't anywhere near as severe. Smallpox was far more lethal and devastated communities. It was a horrific disease. And this is not the return of smallpox.
BROOKE GLADSTONE In 2003, the U.S. had 47 cases of monkeypox that were linked to pet prairie dogs.
JON COHEN Yeah, there was an importation of small animals from Ghana that were infected with monkeypox. That spread to prairie dog pets – who knew? – that were sold at pet stores and people became infected by their pets.
BROOKE GLADSTONE Any deaths in that case?
JON COHEN No.
BROOKE GLADSTONE So 25 years on, monkeypox is back in the news. What's notable about its resurgence now?
JON COHEN It's never spread to several countries outside of sub-Saharan Africa at the same time. It's on every continent right now other than Antarctica. We've never seen this. Any time a virus behaves in ways that are different and new, everyone who studies viruses gulps. It's a gulp moment. What's this doing? But I want to stress something. It's not that deadly. It's not that easy to contract. The mutation rate is much, much lower than coronaviruses and other viruses that have RNA as their genetic material. This is a DNA virus. The DNA viruses, by and large, are thought to mutate at a much, much slower rate than RNA viruses. This is not COVID 22. Let's be real. It is something we need to be serious about and needs to be contained. It does cause serious disease in some people and can kill people, especially if they have immune compromised systems. So it's not trivial. But I saw a headline the other day that said "Panic." No, not time for panic.
BROOKE GLADSTONE Monkeypox has a incubation period of of several weeks and isn't even that easy to identify because doctors really haven't ever seen it here.
JON COHEN And it looks like a lot of other lesions. It looks like chicken pox. It looks like herpes.
BROOKE GLADSTONE So there's probably more of it than we know.
JON COHEN Oh, I think there's more of it than we know. The reality is that many people who develop rashes don't seek treatment. And for most people are just going to have a mild rash and they're going to recover. As the world goes on red alert about this, doctors and nurses everywhere are thinking monkey pox. And a few weeks ago they weren't.
BROOKE GLADSTONE About the strain that is circulating now. That one is not particularly lethal, right?
JON COHEN Yeah. The West African strain, which largely comes from Nigeria. But there are other countries we think has a 1% case fatality rate. But in the United States and in Europe, there are drugs that can theoretically treat this and the fatality rate may well be lower.
BROOKE GLADSTONE You said theoretically, and that strikes me as all too true because we have two different drugs that can treat it. One developed for smallpox.
JON COHEN We just haven't had much experience using drugs to treat monkeypox. And drugs were not available at the time that smallpox was circulating. So it's not as though we had old smallpox drugs that are now available. What happened was we had a fear of bio attack with smallpox. So drugs were developed to help us, should there ever be that horrible scenario of somebody somehow getting a smallpox virus and using it as a weapon. And those drugs were largely evaluated in animal models that used monkeypox sometimes to test them.
BROOKE GLADSTONE Right. And you said it's a misnomer, monkey pox, anyway, that it comes from small rodents. But how did it get the name Monkey Pox?
JON COHEN It was discovered in a Denmark research laboratory that had imported monkeys from Singapore that developed monkey pox. How they got infected in Singapore. Apparently, those monkeys were housed with other animals, potentially from Africa because there's never been monkey pox found in Asia. It's just a weird twist of fate.
BROOKE GLADSTONE Globetrotting monkeys. On a related note, I guess the Foreign Press Association in Africa has condemned the repeated use of images of African people with monkey pox by North American and U.K. news outlets as any other disease, the Foreign Press Association said, it can occur in any region in the world and afflict anyone, regardless of race or ethnicity. We condemn the perpetuation of this negative stereotype that assigns calamity to the African race and privilege and immunity to others.
JON COHEN So I think the African Press Association is making an important point. Show your own outbreak. Don't show ours as though this only happens here. But the challenge has to do with what's available and privacy issues. And if you go on to like Getty Images, where a lot of publications get images, there, there are pictures of Africans with monkey pox, but there also are pictures of hands from the 2003 outbreak in the United States. And at Science magazine, where I work, that's what we used for. The reason that this is not about an outbreak in Africa. There is monkey pox in Africa right now. But that's not why this is attracting international attention.
BROOKE GLADSTONE A disproportionate number of relatively few cases, as you've noted, seem to be among men who have sex with men. And therefore, the theory has been advanced that it's transmitted through sexual contact. Is there enough data to suggest that this is the case?
JON COHEN Monkey Pox has never been conclusively shown to be transmitted through sexual contact, but some of the earliest cases here were men who have sex with men, which is a small percent of the population at large. So it was odd that there were these clusters of men who have sex with men. And then it became clear that several of the cases were linked to a sauna in Madrid and to a gay festival in the Canary Islands and to a gay festival in Belgium. And there's a deep concern of ostracizing and blaming people. This is what happened with AIDS, right? Gay people got blamed for HIV. And the reality is HIV is largely transmitted through heterosexual sex. And the fact that it surfaced first in gay men doesn't tell you about how it's transmitted.
BROOKE GLADSTONE All right. So as an infectious disease reporter who's been observing the reporting on monkeypox over the decades, what are the hallmarks of good coverage that listeners should look out for?
JON COHEN Is a case confirmed or is it just suspected? And who's saying this? There are health officials in the United States at the state level or at the CDC level and other countries at the Ministry of Health. Pay attention to what they're saying. Listen to infectious disease doctors, especially if they've seen a case. There is a small group of researchers who have studied monkey pox for many years. They are authorities. Listen to them. As in all new diseases. Fear always factors in. Be wary of people who are praying and playing upon fear. Science is all about separating possibility from probability. What is likely. And people who have all the answers right now watch out because there are so many questions.
BROOKE GLADSTONE Thanks very much, John.
JON COHEN You bet.
BROOKE GLADSTONE Jon Cohen is a writer for Science magazine, where his reporting focuses on infectious diseases.
And that's the show on the media is produced by Micah Loewinger, Eloise Blondiau, Rebecca Clark-Callender, Candice Wong, Susanne Geber and the delightful, quietly efficient, imperturbable Max Balkin, who's leaving us this week and who I will deeply miss. Our technical director's, Jennifer Munson, our engineer this week was Andrew Nerviano. Katya Rogers is our executive producer. On the Media is a production of WNYC Studios. I'm Brooke Gladstone.