UNLOCKED
AN ORAL HISTORY OF HADEN’S SYNDROME
John Scalzi
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.
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 evident. 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.