Unlocked - An Oral History Of Haden's Syndrome

PART THREE
THE MOON SHOT

Irving Bennett:

The Haden Research Initiative Act was sold to the public as a “moon shot”—as in, we went from Kennedy saying we would go to the moon to Armstrong setting foot on it in nine years because we decided as a nation that we would, and we put the resources and willpower to work. President Haden made it clear that he wanted the same unity of purpose here. And of course everyone got behind it because the syndrome touched everyone’s life to a greater or lesser extent.

But it didn’t change the fact that the first year of the HRIA was complete chaos. National unity of purpose is fine, but when it comes to spreading $300 billion around, logistics and a solid plan is better. And it was clear that at least at the outset, no one had a plan on how to apportion the money, to allocate resources for research and development, or to set concrete goals. The US government basically threw all that money into the air and yelled “go” to whoever grabbed it.

Haden and the rest of the government quickly realized that, and Haden in particular was incensed. He may have forced the creation of one of the biggest social programs in the history of the United States, but he still had “skinflint Republican” in his bones. The idea that his signature legislative achievement would be seen as a call to slop the pigs was something that outraged him. He sicced [Attorney General Gayle] Garcia on several companies and C-suite executives—including ones who had contributed to his election, an unheard of thing in any political era—and eventually people took the hint.

By the end of the first year things had settled out into four main buckets. One was simply for the medical maintenance of all the people who were afflicted, who weren’t already covered by insurance, plus more federal backstopping for the insurance companies, who were screaming bloody murder about costs. Of the three left, one was for research into a vaccine, one for research into the brain, and the one for mobility and community research. Find a cure, communicate with the victims, get them reintegrated back into the world. It was the brain research that took off first.

Ida Garza, Former Deputy Programs Coordinator, HRIA, Department of Health and Human Services

My job was to coordinate research across several different private companies, the CDC, and other divisions of Health and Human Services and various public and private universities, with a focus on brain research. And it was a nightmare. Primarily because each of these groups were used to shielding their intellectual property from the outside world, until such time as they could file patents or otherwise move to protect their work.

The thing with the HRIA was that as a condition of receiving funding, all the work, including work in progress, had to be submitted to a searchable database so that everyone else receiving funding could see the work and use it to advance their own work—because above anything else, we had a mandate to get advances and therapies to the patients as quickly as possible. The HRIA still allowed for patent filings, but everything, everything, was cross-licensed for the length of the patent, for a statutory fee that went into effect only after a product went to market.

This simply wasn’t the way things had ever been done before, and so I had to deal with CEOs and chairpeople calling me up and yelling at me that they were leaving money and profits on the table. I would remind them of just how much HRIA funding they were shoveling into their companies and that they knew what the conditions were on that money. They would respond with baffled silence. Occasionally one would threaten to go over my head and talk to the Secretary, or, God forbid, the President himself.

I was secretly delighted when they would say that, because I had a standing order when that happened to refer them immediately to the White House, at which time the Chief of Staff would read them the riot act. A couple of times I understand the President himself got on the line to do the honors. I was never a huge fan of President Haden before the HRIA but I appreciated him after the fact, because he simply took no crap from anyone about how the HRIA was run. You opened up your research or you didn’t participate. And there was so much money involved that eventually everyone gave in.

Sharing data that way was not really the optimal way of doing things. If any of us at HHS could have changed it, we would have done things Manhattan Project style, where we sent all the researchers into the desert together until they came up with things we could use. But this set-up allowed the communal effort to have at least a thin veneer of free enterprise, and that was politically important, considering the administration.

And at the end of it all, it worked. The first neural networks came about because research on detecting brain activity by way of MRI and other external devices at Stanford was combined with physical deep brain stimulation research at the Cleveland Clinic by a scientist working at General Electric. If they hadn’t been able to see each other’s work, they all would have had to reinvent those particular wheels. This way the wheel only had to be invented once.

Heng Chang, neural network developer, General Electric:

Before Haden’s there was already a considerable amount of work being done in the field of directed brain imagery—using MRIs and other similar equipment to record and register when and how thoughts were being transmitted, and visualizing the brain as it responded to outside stimuli. At first for third-stage Haden’s patients, that’s how they communicated—sensors would be placed on their heads and scalps and we could very laboriously piece together their thoughts, sometimes just by running down the alphabet and having them think “yes” when we came to the letter they were thinking of. Spelling that way. Obviously that was a laborious process and not one that could be replicated for millions of Haden’s patients.

When GE started researching Haden’s, we got access to the HRIA database and as I was going through it I became intrigued at some experiments the Cleveland Clinic was doing with very sensitive antenna-like filaments they were developing to track incipient seizures in epilepsy patients, with the idea of then applying deep brain stimulation to arrest the seizures before they began. I thought to myself, wouldn’t it be great if the filaments could send as well as receive. You could use them to allow input from outside the body directly into the brain, and sent thoughts out the same way. Then I didn’t think about it again because I was working on another project entirely, and the Clinic’s work wasn’t on-point to that.

But my subconscious mind must have been still thinking about it because about a week later I came flying out of a dead sleep with the idea of the neural network. It was like it just downloaded directly into my brain. My reaction to it was so strong that I sat straight up in bed and actually shouted—not “Eureka!” but just a really loud gasp. This turned out not to be a great thing, because my cat was sleeping on my chest and was so surprised that she ended up digging into my skin before running off the bed. I got out of bed, swabbed the blood off my chest, and then drove to work in the middle of the night to start modeling the network I thought of. I didn’t want to go back to sleep. If I did that, I was pretty sure I was going to lose it entirely.

Ida Garza:

Chang’s idea was brilliant. Every scientist, on staff and off, told me so. So we knew this was a direction we needed to go, and quickly. What we didn’t know was how much it would cost. There’s an old saying: “Fast. Good. Cheap. Pick two.” Meaning that you’d never get all three at once. We picked fast and good. We didn’t assume it would be cheap, which as it turns out was a good thing.

Heng Chang:

They told me years later that by the time we got the first fully functional neural network into production, we had burned through something like a hundred billion dollars developing, testing and manufacturing it. That’s a literally inconceivable amount of money to me. Certainly I never saw any of it, other than my salary at GE. But I did get on the cover of Time magazine and was a finalist for Person of the Year, so that made my mother proud.

Irving Bennett:

So Chang and his team developed the neural network, but one drawback they had was in its testing. They could model the networks in supercomputers which could create environments that superficially resembled the human brain, and those models got them something like eighty five to ninety percent of the way there. But at the end of the day, if you want to find out whether they work, you have to put the networks into an actual brain.

And ultimately it has to be a human brain, for two reasons. One, because animals’ brains aren’t complex enough, and two, because an animal isn’t going to be able to talk to you about whether the network is functioning. There was also the catch that during the meningitis phase the Haden virus changed the structure and function of the brain so much that there was literally no useful analogue in the natural world for it. If you wanted to see how the networks worked in a Haden brain, you needed an actual Haden brain.

Naturally, this created a moral and ethical issue. These first neural networks were both highly experimental and highly invasive—the work papers Chang and his crew published described how the filaments of the network would need to penetrate and migrate through the brain matter, essentially turning the brain into a massive pincushion, without any guarantee that the invasion of this artificial neural network wouldn’t kill or debilitate these Haden’s patients even more than they were.

When I wrote up the stories on the work papers the families of Haden’s patients nearly rioted. They felt like their family members were about to be victimized a second time. President Haden had to cut short a trip to Indonesia to come back and deal with it. He was not happy about it, or with me. [New York Times Publisher] Bitsy Lapine called me into her office to let me know that the President had called and yelled at her about me for twenty minutes. Bitsy, bless her, eventually recited the First Amendment at him and hung up.

Heng Chang:

The media response to our initial set of work papers highlighted the problem that the public had in understanding how efficiently we could model the human brain, and the network’s interaction with it. We were very comfortable that the networks could be installed safely in nearly all cases. But there was always that tiny bit of risk that you can never get rid of, and so the press and the families focused on that. There was really no way we’d be able to get volunteers from the general Haden population after that.

Irving Bennett:

This is where the near-universal nature of Haden’s Syndrome came to the rescue. The first guinea pigs for the networks were eventually recruited from three distinct groups. The first was the very elderly—people who from an actuarial point of view only had a couple years of life in them even before they got sick with Haden’s. The second group was people with terminal illnesses who also got Haden’s—stage four cancer patients and patients with other advanced illnesses. These two groups had almost literally nothing to lose by volunteering to test these networks.

The third group—well. In one sense the people in it didn’t have much to lose either. But they were still problematic, to say the least.

Chris Clarke, inmate, Nebraska State Penitentiary:

I was in prison because a couple of teenagers got into the drug lab me and my step-father Bill had in a tool shed on our property. I think they heard from someone who bought from us that we kept our inventory there. We didn’t—once we cooked it, we moved it. But they broke in, started looking around and we think accidentally started a fire. The shed went up, taking them with it. Me and Bill were charged with two counts of manslaughter and a whole bunch of drug-related charges, and were found guilty. Bill died of a heart attack before he could be sentenced, and I think the judge took it out on me. I got a total of eighty-five years, and I would have to serve fifty before I could get parole. I was twenty-two when I went in. It was life sentence on the sly.

You would think it would have been hard for Haden’s to get into a prison, but no, we got it just like everyone else. We joked that someone brought it in after a conjugal visit, but it’s obviously more likely that a couple of the guards brought it in from the outside world. Within a couple of weeks it seemed like half the house was sick with it. The prison only has one doctor on staff, and then some PAs and nurses. They were swamped immediately and not a lot of help was coming in. The rest of the world had it too, and helping a bunch of murderers and rapists was low on the list of everyone else’s priorities.

I think I was one of about a dozen inmates who experienced lock in. I won’t bore you with the details of that. I will say it’s pretty much like being in solitary, every day, all the time, for the rest of your life. That should be enough to go on. I do remember one day while I was lying in the infirmary wing, where they had permanently put those of us locked in, a nurse was talking to one of the PAs and saying that she had heard that in the legislature there were some state representatives who objected to continuing medical services to those of us who were locked in. Said it was a waste of money and that in our case it was God meting out justice. I never intentionally killed anybody, but I would have gladly wrapped my hands around that asshole’s neck.

One day I hear [Nebraska State Penitentiary Staff Doctor Hunter] Graves talking to someone. When you have nothing to do but lie there and hear other people talk, you get good at knowing the voices of the staff, and this was someone new. Graves told this person that I was likely the best candidate in the infirmary. I had no idea what that meant. Then this person started talking to me. She introduced herself as Dr. Constance Dennis, from the Department of Health and Human Services, and she wanted to know if I would volunteer for a medical procedure that would allow me to talk to people again and maybe even get me back on my feet. They would advance my parole date by a couple of decades for my participation. The only catch was that the procedure was highly experimental and I might die.

Well, shit, I thought, I’m already as close to dead as I was going to get. Anything was better than this, including actual death. When they put me into that MRI to scan my brain to see my response, I was shouting “Yes!” so hard in my head that I think I almost gave myself a stroke.

Kathryn Martinez, Associate Counsel, The Prison Freedom Coalition:

We fought it. Of course we fought it. Approaching people imprisoned for life or something close to it and dangling parole in front of them in exchange for being medical experiments was deeply unethical medically and extortion besides. So we fought it, and so did the ACLU and the NAACP.

And we were shut down every step of the judicial line, culminating with the absolutely disastrous Hicks v. Copleland ruling. Now in the United States you can completely disregard the 8th Amendment as long as you can say that prisoner participation in a quote-unquote medical trial is quote-unquote voluntary. As if prison itself isn’t a system of compulsory situations, one after the other. We set back the prisoners’ rights cause by a couple of decades. It’s a millstone around the neck of everyone who participated.

And it’s a reminder that panic—in this case about Haden’s syndrome—means that justice gets compromised. The law is blind, but the people who administer it see what way the political winds are shifting all too well.

Heng Chang:

During the worst of the Hicks v. Copleland controversy I’d get phone calls in the middle of the night. Some of them were from people telling me that I was a monster for using prisoners, and then others telling me that if I didn’t pick their brother, or father, or whoever, to take part in the trials, they would come and burn down my house. It was a nerve-wracking time, not in the least because I had almost no say on who was chosen for the trials.

I can sympathize with those who thought we were doing something monstrous with the prisoners. My wife has Japanese-American ancestry; her family tree has people in it who were interned at Tule Lake. I know mistakes can be made because people are scared. But at the same time, there were suddenly millions of Americans, and millions more around the world, trapped inside their bodies. In places where care wasn’t as advanced as it was in the developed world, third stage Haden’s patients were simply being left out to die, slowly starving to death. Even here in the US there were entire hospitals basically being used as storerooms for the locked in. It was an immense humanitarian crisis, on a global scale.

I don’t know. Maybe we were wrong to enlist prisoners as trial subjects. It’s something I don’t have a good answer for, and yes, sometimes it still keeps me up at night. But on the other hand we had workable, functional neural networks, from the moment I sat up in bed to the moment we switched on the first Haden patient, in eighteen months. That is a miracle. It really is.

Kathryn Martinez:

About a third of the prisoners recruited for the trials died or suffered moderate to significant brain damage. Or I should say, the government only in the last five years released the data which says a third of the prisoner participants died or suffered brain damage. We have reason to believe those numbers are, shall we say, conservative.

Chris Clarke:

Well, I didn’t die, anyway. Though I had to wait until that Supreme Court ruling came down to get to participate in the trials. I was one of the second wave of test subjects. Since I heard that a lot of the first wave died or got brain damage, I don’t suppose I should complain.

So, the way it worked is that I spent a lot of time with my head in a bunch of machines that made detailed scans of my brain. MRIs, X-rays to see blood vessels that had dye in them, that sort of thing. That took months, which didn’t make sense to me. I’m not Stephen Hawking. There’s not that much brain to see.

Finally they decided they knew as much about my brain as they were going to find out without actually looking at it, so they took off the top part of my skull so they could observe it directly. When they did that they took a clear, sterile piece of plastic and put it where the top of my skull used to be, so they could see inside whenever they wanted. Then they took the part of my skull they sawed off and tucked it into my stomach area, so it would stay alive for when they wanted to attach it back on to my head. I could feel the thing when it was down there. It wasn’t a very good feeling.

Then they decided they’d seen enough and put the top of my skull back on, after they placed the neural network in my head. They told me that the network had tendrils that would bury themselves in my brain but that I shouldn’t be able to feel them, so I shouldn’t worry about them. That wasn’t exactly a lie. I couldn’t feel the tendrils as they dug into my brain, but every once in a while it was like one of them would hit something, and I would get a huge rush of feeling or sensation. One time my field of vision went entirely green for like an hour, and another time I suddenly started smelling oranges. Another time I had about a minute where it felt like someone put a branding iron straight up my backside. It didn’t last very long but when you’re feeling something like that, time stretches out.

After about a week of this I guess everything was where it was going to be, and they told me they were going to turn on the network, and that if everything worked then I would be seeing through a camera they set up on a desk, and that I would be able to talk through a speaker. Then I felt something like an electric shock and I could see myself on the bed, bald, with this ugly scar across the top of my head that made me look like Frankenstein’s ugly cousin. And I thought, Jesus, I look like shit, and suddenly I heard the words I was thinking, coming through the speaker. The network was reading my thoughts. I realized I was going to have to be careful with what I thought until I could actually control myself. And then that came over the speaker.

Then I started to talk to anyone who was in the room because it had been so long since I could talk to anyone about anything. I was just asking people’s names and what they were wearing and about their kids and their pets—it didn’t matter because I could talk again and it was the best thing in the world. After a few minutes of this I got a weird itch on my face and it took me a couple of seconds to realize that I had tears and they were just, like, pooling on my face because I was lying down and not able to wipe them away. I had to ask someone to wipe them for me.

It was amazing. The most amazing thing. It was like being born again. It was like being free.