Read Unlocked: An Oral History of Haden’s Syndrome for Free Online

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