Unlocked: An Oral History of Haden's Syndrome
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For Gale and Karen Scalzi, who helped at the start of things.
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Contents
Cover
Title Page
Dedication
Copyright Notice
INTRODUCTION
PART ONE: OUTBREAK
PART TWO: HADEN’S SYNDROME
PART THREE: THE MOON SHOT
PART FOUR: THREEPS
PART FIVE: THE NEW WORLD
PART SIX: TWENTY-FIVE YEARS
Lock In Preview
Other Titles by John Scalzi
Copyright
INTRODUCTION
Twenty-five years ago, doctors and hospitals were receiving their first cases of the disease that was initially misdiagnosed as a variant of the Influenza A virus subtype H5N1, and then briefly known as “The Super Bowl Flu,” and “The Great Flu,” and then finally, after the full extent of the damage it could cause was known, named “Haden’s syndrome.” The disease would claim millions of lives and sentence millions more to “Lock In,” a paralysis of the body that leaves the mind fully functional.
Between that first appearance and today, our nation and the world has experienced the tragedy of the onset of the disease, the triumph of the technological and social response to its challenges, and the aftermath of both—positive and negative—on our culture and the world we live in.
This document is the result of interviews with many of the doctors, scientists, politicians, and ordinary people who were instrumental in both our understanding of Haden’s syndrome and our national and global response to it. While no single document can comprehensively chronicle the effects and changes to our world that Haden’s syndrome created, the goal with this document is to give those who were born after its onset—some of them now fully adults—a screenshot of how the generation before them responded to what is now considered the single greatest public health challenge the planet has experienced.
It’s also to remind them that while Haden’s syndrome is no longer transmitting in such vast numbers, it is still one of the planet’s major ongoing health issues, with tens of thousands of new cases annually in the United States alone. Only vigilance and a respect for the disease stands between us and another epidemic.
As our nation prepares to implement the former Abrams-Kettering Bill, now the “Progress With Prosperity” law, and allows private entrepreneurship to continue the work on Haden’s syndrome originally funded in the public sphere, let us remember there should always be a place for the sort of basic research and prevention that can only be done by a well-funded and citizen-focused governmental organization such as the Centers for Disease Control. The CDC is happy to have funded this oral history.
— Yvette Henry, MD, Director
The Centers for Disease Control and Prevention
PART ONE: OUTBREAK
Benjamin Moldanado, Former Chief Investigator, Haden’s syndrome, The Centers for Disease Control and Prevention:
The first thing we have to do is to admit we blew it. We misidentified Haden’s at the outset. And when we did that we gave it an extra couple of weeks to spread. And that’s what killed us.
Natasha Lawrence, Investigator, Haden’s syndrome, The Centers for Disease Control and Prevention:
When Haden’s was first moving around in the world, we were also tracking a new and aggressive variant of H5N1 influenza: bird flu. The bird flu had come up out of south China, where it probably got its start in one of the poultry factories there. It had already killed a couple dozen people in south China and we were seeing it pop up elsewhere, including London and New York, which were the first major population centers we saw Haden’s in.
Haden’s “first blush” symptoms were very much like the bird flu, and a number of the people who contracted Haden’s also had the H5N1 virus in them as well. You apply Occam’s Razor to the problem of a person having flu-like symptoms who also has the bird flu virus in their bloodstream, and it’s going to tell you that the first is the cause of the seconds. And in 99.9 percent of the cases, that would be exactly right. In this case it was exactly wrong.
Irving Bennett, Professor of Journalism, Columbia University:
I was a science reporter at the New York Times when Haden’s hit. I and every other science writer at the time was told it was bird flu and were asked to remind people that this was one of those years where the government had actually gotten ahead of the virus and had adequate stocks of vaccine out there, so people should go out and get their shots. Which was fine until I started hearing from doctors that the ERs were beginning to fill up with people who had the flu who also had gotten their shots.
My first assumption was that there was something wrong with the vaccine—that either it was ineffective because of poor manufacture or graft, or that it was the vaccine itself that was giving the people the flu. Either would have been a great story. I tracked some of the vaccine that looked like it was failed back to the manufacturer, SynVaxis, in Maryland, who agreed to test the remainder of the lot. Those tests came back negative, which is to say, the vaccine was perfectly effective. By this time other vaccine makers were also testing their lots, and finding nothing wrong there, either. This is when we knew for sure something else was going on. And then Super Bowl Sunday happened.
Monique Davis, MD:
I was working the ER at Lutheran Medical Center on Super Bowl Sunday. I had traded for that day because I don’t actually care about football and I could bank some favors by taking the day. I figured it would be reasonably light because the Jets were in the Super Bowl, which meant that lots of the people who would otherwise be doing the stupid things that get you sent to the emergency room would be at home in front of the TV instead.
I was partly right. The day was light on gunshots and broken bones and violent trauma, but when I started my shift, the ER was already full of flu victims, mostly older people or people who didn’t care they might miss the game. When I talked to them a lot of them said they already had their flu shot for the year. When I sent in the blood work I told the lab to be looking for something other than the bird flu we knew was going around.
By the time the game started the ER was packed. I texted a friend of mine over at Maimonides and he said he was getting the same thing in their ER. All over the city ERs were piling up with flu victims. Some of them were saying they tried waiting until after the game was done before they headed over but they just couldn’t wait anymore. This suggested to me that when the game was done we were going to get slammed. I told the chief resident that if I were him I would get some more staff into the ER as soon as possible.
We didn’t even have until the end of the game. The Jets were down thirty-five points by halftime and by the third quarter there was hardly any room to move in the ER.
Benjamin Moldanado:
New York got the worst of it on Super Bowl Sunday but we saw a sharp rise in flu-related ER visits in nearly every major US city that day. That told us that whatever we were looking at probably got into the US through New York and then dispersed through air travel. Which meant that it was easily communicable but possibly not immediately e
vident. People who are ill enough to need an ER aren’t going to get on a plane. It was something that probably had a considerable incubation period.
Irving Bennett:
Once we figured out that it wasn’t the bird flu but was another sort of flu entirely, I started looking at where it was popping up, not just in the US but elsewhere. Outside of New York, the largest pocket of “Super Bowl Flu” was London. I dug into it more and as a couple of days went on I stumbled onto an interesting bit of data, which was outside major population centers the places that had the highest initial rate of infection for Super Bowl Flu were towns with research universities in them.
A little more digging and I discovered that on the third weekend in January the International Epidemiological Conference held its winter meeting in London and that the attendees to the winter meeting mapped really well with which university towns had the highest rates of infection. The irony of a meeting of epidemiologists being ground zero for a highly virulent new form of flu was not lost on me, or anyone else, for that matter, once the news got out.
Thomas Stevenson, former Director, National Security Agency:
When it became clear to us that the IEC winter meeting had been the likely ground zero for what we’d eventually call Haden’s syndrome, we naturally began to research, within the confines of the law and always with the highest possible standard of transparency, the attendees of the winter meeting, including their recent research. We wanted to find out who might have been working on research in line with what we were seeing with the new virus. We were naturally concerned that the virus might not have occurred naturally, and that it had been designed as a potential weapon.
Was there ever a determination?
Neither we nor any other US government agency were able to officially determine the initial source of the Haden’s virus, nor were we able to determine whether the virus was naturally occurring or had been genetically designed.
What about unofficially?
Quite obviously I can’t comment on any unofficial findings.
Irving Bennett:
I know of two rumors that are given the most credence in the world of Haden’s historians. The first is that after the First Lady came down with the disease that would eventually be named for her, a factory outside of Miranshah was airbombed into rubble. Officially the factory made cold medicines. I suppose you can guess what the unofficial suspicion was. The Times stringers in the area confirmed the place had been turned to rubble but neither the Pakistani nor the US government confirmed an airstrike. The official cause for the factory going up was “inter-tribal conflicts.” Presumably one tribal chieftain ordered a truck filled with explosives to drive up to a loading dock and then detonate. There was a Pashtun epidemiologist at the IEC, although he was never charged with anything.
The second rumor involves a Swiss biology graduate student who had a bad breakup with his lover, a grad student in epidemiology, and also access to viral material and a gene synthesizer. Whether this dumb bastard intended for his new bug to get out into the general population is up for debate. This is a rumor because there’s no hard evidence that the presumed creator of the virus did the deed, and we can’t ask him because shortly after the first fatalities associated with the virus started cropping up, he took a rifle and shot the back of his head out with it. His former lover, incidentally, was fine. Never even got sick.
Both of these rumors are reasonably plausible but for practical purposes they both can’t be true, so which of these two rumors you find more compelling is a personality test, in a way.
Natasha Lawrence:
It was clear this wasn’t the H5N1 variant so we started breaking it down to see what we had. What we had was a virus that had a widely variable but long incubation period—that’s the time between when you get the virus and when you start showing symptoms—but a short latency period, meaning the time between when you catch the virus and can start spreading it to other people. Long incubation plus short latency means there’s a fairly large window for subclinical infection—people infecting each other before they feel sick themselves.
So that’s what happened here. The Haden’s virus is transmissible by air, which makes it easy to catch. By the time the International Epidemiological Conference winter meeting had adjourned, roughly eighty percent of the thousand or so attendees had been infected. They had been in close contact and breathing in each other’s air the entire three days. And then when they dispersed they traveled back to several hundred points of origin on six separate continents, traveling in airplanes packed with other people. From a virus’ point of view, you couldn’t have asked for a more optimal transmission pattern.
Now, that’s optimal for the virus. It’s not optimal for us. When it came to the Haden’s virus, by the time we knew what we were dealing with, we also knew that it had potentially already spread to millions and possibly billions of people. What we didn’t know was how serious this new virus would be. We had half of New York throwing up in ER rooms, but we didn’t know how long it would take for the virus to resolve itself, and for the body’s own systems to beat it.
We did know we didn’t have a vaccine. The Haden’s virus initially presented like an influenza virus, but when we started looking at it we realized we really were looking at something new, so the sort of antivirals we use for flu—the neuraminidase and M2 inhibitors—weren’t necessarily going to have the same effect on Haden’s.
So no matter what, we were in for a rough time.
Monique Davis:
The first phase of Haden’s looked like flu and acted like flu, but it was the worst flu we’d seen. Lots of vomiting. Lots of respiratory congestion. Fevers as people’s immune responses kicked into overdrive trying to kill the virus from the inside. We treated what we could treat but after Super Bowl Sunday we knew we were up against something different.
People started to die. Old people, people with weakened immune systems. Then infants, which was heartbreaking. Those were the most vulnerable populations with any influenza infection, however, so no matter how heartbreaking, it was still understandable and to some extent expected. But then otherwise healthy people started dying as the Haden’s virus just overwhelmed their systems. One kid came into the ER complaining that being sick was messing with his training for the Mohawk marathon in Albany, which was going to be run a couple of weeks later. He was dead by morning.
That was the frustrating thing about Haden’s. Outside the usual at-risk groups for opportunistic viral infections there wasn’t any rhyme or reason to who got sick, who got better and who didn’t. It was like flipping a coin. Heads, you were sick for a day or two and then you were fine. Tails, you were laid up in the hospital for a week. Or you were dead.
About a week into it everyone stopped calling it the “Super Bowl Flu” and started calling it “The Great Flu,” because it was something that just wasn’t stopping. It was like the Spanish Flu in the early 20th Century, except so much faster and so much more.
Benjamin Moldanado:
The parallel with the flu pandemic of 1918-20 was obvious but it’s also inadequate. The Spanish Flu took two years to circle the globe because transportation was slow, and the outbreak happened at a time when the global population was under two billion. There were more than seven billion people on the planet when Haden’s hit, in an era when you can get from one side of the planet to the other in less than a day. The spread of Haden’s was exponentially faster and affected an exponentially larger number of people.
We did have better understanding of disease and a more coordinated global response working for us, but unfortunately given the specific nature of how the Haden’s virus transmitted, those came into play only after the virus had already spread itself across the planet.
Irving Bennett:
We were having a newsroom meeting about how to deal with the coverage and my then editor Brenda Strong said “it’s like a coordinated attack. It’s like this virus has blitzkrieged every single place people live.” And that’
s exactly what it was like. We were getting the same news reports that everyone else was seeing and it was astounding. It was literally everywhere. The only place it seemed not to be was the science stations of Antarctica. New Zealand actually stopped flights down to the South Pole to keep it from getting there.
The Haden’s virus went from not even existing to becoming the major global health crisis of the 21st Century in under two weeks. Nothing like that sort of epidemic spread had ever happened before in the history of the world. It was like viruses declared war on humans and were planning to wipe us out before we could mount a counteroffensive.
Thomas Stevenson:
Before we learned of the International Epidemiologist Conference’s winter meeting, we very seriously considered whether this was in fact an attack on the United States by a hostile party, either a nation state or a terrorist group. The problem was none of our chatter had indicated that something like this was in the offing, and this is, to be blunt, one of the things we had tuned ourselves to be looking for. It seemed unlikely to us that something of this scale could have been planned without our hearing of it. The enemies of the United States have a tendency to try to pump themselves up before an attempted attack. We didn’t pick up any gloating transmissions before Haden’s got onto our radar.
Even if Haden’s had been designed to attack the US, it was a very poor instrument for the task. We were hard hit by Haden’s first wave but we and most other western and industrialized countries immediately coordinated our responses and locked down further immediate spread of the disease. It was the places without the ability to effect a coordinated response where the disease really took a bite, both immediately and with the later stages.
This is why, on a personal note, I think biological warfare ultimately never caught on. Attempting to use a biological agent against your enemy while avoiding its effects on you is like trying to use a grenade by holding onto it and hoping all the shrapnel flies in the direction of the person you want to kill. You have to be stupid or suicidal to use biological weapons. Whoever invented Haden’s—if it was invented—was probably both.