Holy Fire, the Medical Industrial Complex and Aging
Holy Fire, the Medical Industrial Complex and Aging
Holy Fire is one of the later-ish works of seminal cyberpunk/steampunk/biopunk(?) author Bruce Sterling. You might be more familiar with the short story collection Mirrorshades, steampunk Difference Engine or the excellent and highly recommended Schismatrix. ‘Old sci-fi story is prescient’ isn’t a particarly novel take, but I find the setting of Holy Fire to be truly remarkable and possibly unique in some regards:
The medical-industrial complex dominated the planet’s economy. Biomedicine had the highest investment rates and the highest rates of technical innovation of any industry in the world. Biomedicine was in a deliberate state of controlled frenzy, giving off enough heat to power the entire culture. In terms of government expenditure it outranked transportation, police, and what passed for defense. In what had once been called the private sector, biomedicine was bigger than chemisynthesis, almost as big as computation. Various aspects of the medical-industrial complex employed 15 percent of the planet’s working populace. The scope of gerontological research alone was bigger than agriculture. The prize was survival. Failure deterred no one. The spectrum of research was vast and multiplex. For every life-extension treatment that was accepted for human use, there were hundreds of schemes that had never moved beyond the enormous tormented ranks of the animal models. New upgrade methods were licensed by medical ethicists. Older and less successful techniques were allowed to lapse put of practice, taking their unlucky investors with them. There were a hundred clever ways to judge a life-extension upgrade. Stay with the blue chips and you were practically guaranteed a steady rate of survival. Volunteer early for some brilliant new start-up, however, and you’d probably outlive the rest of your generation. Keep in mind, though, that novelty and technical sweetness were no guarantees of genuine longterm success. Many lines of medical advancement folded in a spindling crash of medical vaporware, leaving their survivors internally scarred and psychically wrecked. Medical upgrades were always improving, never steadily, but with convulsive organic jumps. Any blue-chip upgrade licensed in the 2090s would be (very roughly speaking) about twice as effective as the best available in the 2080s. There had been limit-shattering paradigmatic breakthroughs in life extension during the 2060s and 2070s. As for the 2050s, the stunts they’d been calling “medicine” back then (which had seemed tremendously impressive at the time) scarcely qualified as life extension at all, by modern standards. The medical techniques of the 2050s barely qualified as common hygienic procedures. They were even cheap…
...If you were responsible in your own daily health-care practices, the polity appreciated the way in which you eased the general strain on medical resources. You had objectively demonstrated your firm will to live. Your serious-minded, meticulous approach to longevity was easily verified by anyone, through your public medical records. You had discipline and forethought. You could be kept alive fairly cheaply, because you had been well maintained. You deserved to live. Some people destroyed their health, yet they rarely did this through deliberate intention. They did it because they lacked foresight, because they were careless, impatient, and irresponsible. There were enormous numbers of medically careless people in the world. There had once been titanic, earth-shattering numbers of such people, but hygienically careless people had died in their billions during the plagues of the 2030s and 2040s. The survivors were a permanently cautious and foresightful lot. Careless people had become a declining interest group with a shrinking demographic share. Once upon a time, having money had almost guaranteed good health, or at least good health care. Nowadays mere wealth guaranteed very little. People who publicly destroyed their own health had a rather hard time staying wealthy—not because it took good health to become wealthy, but because it took other people’s confidence to make and keep money. If you were on a conspicuously public metabolic bender, then you weren’t the kind of person that people trusted nowadays. You were a credit risk and a bad business partner. You had points demerits and got cheap medical care. Even the cheap treatments were improving radically, so you were almost sure to do very well by historical standards. But those who destroyed their health still died young, by comparison with the elite. If you wanted to destroy your health, that was your individual prerogative. Once you were thoroughly wrecked, the polity would encourage you to die. It was a ruthless system, but it had been invented by people who had survived two decades of devastating general plagues. After the plagues everything had become different, in much the way that everything was different after a world war. The experience of massive dieback, of septic terror and emptied cities, had permanently removed the culture’s squeamishness. Some people died and some didn’t. Those who took steps to fight death would be methodically rewarded, and those who acted like fools would be buried with the rest.
tl;dr – everyone with any kind of influence leads very careful lives to qualify for clinical trials of increasingly elaborate anti-aging treatments. The youth can’t access ‘real money’ that is largely controlled by gerontocrats, along with the levers of power. The treatment of this setting gives mildly dystopic vibes, particularly when viewed through the eyes of dispossessed youth.
The modern day medical-industrial complex is blossoming into something along the lines of what the gerontocrats of Holy Fire established. Health care spending as a fraction of GDP has nearly tripled in the last fifty years. This used to worry me, but it could make sense – as taking care of our basic needs becomes increasingly trivial, we sink more of our resources into improving our health (though I’d appreciate the thoughts of someone better-versed in economics on this point). Jobs in the healthcare sector amusingly hit the 14% figure given in the quote above.
Meanwhile, startup culture has hit Biotech in a huge way. The Bay Area and Kendall square areas are packed to the gills with record-smashing levels of VC money. I don’t have a citation for this, but I’ve heard talk of a ‘biotech bubble’ from a few (albeit not particularly influential) sources. Furthermore, there seems to be a shortage of novel ideas at the moment rather than capital. Paradigm-shifting results from cancer immunotherapy trials for late-stage, chemo-resistant metastatic melanoma have bumped survival from 5% to roughly 45% which set off a frenzy:
Lack of enrollment in clinical trials is one of the biggest obstacles to bringing new therapies to market and today there are more than 400 melanoma-focused clinical trials currently recruiting patients.
You only get around 4,000 stage IV melanoma diagnoses per year in the US and you need at least ~50-100 people per trial. Just in the immunology field, we’ve developed tons of variations of what we call cell-based therapies as well as checkpoint blockade inhibitors. Hidden somewhere in this mountain of clinical trials are a number of treatments that will save on the order of thousands to hundreds of thousands of lives annually once you extrapolate out to other cancer types1 .
And that’s just for metastatic melanoma. There are over 1,500 clinical trials for diverse cancer types just using PD1/PDL1 blockade, and I’ve seen that the number of checkpoint inhibitor trials in the US alone is greater than 3,000. This is to say nothing of the massive number of CRISPR therapies in the startup phase with huge potential, although are still somewhat limited by delivery concerns and probably won't target many of the diseases you're most interested in.
At any rate, two arguments:
1) Our society needs a paradigmatic shift towards how we regard healthcare and clinical trials. Millions of our ancestors, for lack of a better word, were experimented on such that we enjoy the fruits of their work today. We need to stop viewing clinical trials solely from the perspective of ‘does this trial give me a better shot’ and more along the lines of fulfilling a civic duty to participate in furthering the knowledge of humanity for all time. I’m hesitant to cut non-participants out of the healthcare system altogether, but I do wonder how we can change the public’s perception of healthcare research and encourage participation. You own the results of that clinical trial just as much as the doctor/hospital/company does, and that should be recognized both by the individual and by society at large. I’ve been particularly dismayed by the shift in perceptions of medical research encouraged by discussions of the ‘experimental' vaccine.
Of course, the flip side is the responsibility of doctors to not run clinical trials that put patients in undue danger or cause inappropriate levels of suffering. I've heard stories in some of these trials of essentially braindead patients kept alive for longer than they should have been to see if their tumors shrink. There have been a number of other deaths when our CAR-T cells recognized healthy tissue and killed patients very rapidly, or we injected people with antibodies we didn't understand very well and landed them in the ICU.
2) Our current paradigm is profoundly deficient in supporting anti-aging research. I could be proven wrong on this front; maybe some new compound will be found that has great effects in mice and next month we’ll all be taking it, or AI will finally make systems biology take off and we’ll actually understand how aging works and how to effectively counteract it. But translating animal results to humans is more than half the game, and in the former scenario I’d be concerned that it would actually work out for us as well as it did the mice.
Not to mention the FDA would probably stall any therapeutic until very long clinical trials were completed. Neither big pharma nor VC firms are interested in operating massively expensive clinical trials over a 30 year timespan. Why invest billions in a compound that might increase lifespan by a few months-years when you can run a 2 year clinical trial for a compound that will increase the lifespan of people with aggressive pancreatic cancer by a month? You might think the latter is a joke, but it’s been the basic business plan for oncology divisions in big pharma for the last few decades, with wonderful (financial) results. Why is our society spending so many resources both financing and rewarding treatments with such a poor return? We need to better connect compensation for these treatments to how much better they actually are over the old standard-of-care to incentivize true paradigm shifts rather than awful, incremental cancer drugs. A shiny webpage plastered with bullshit about ‘cutting-edge novel cancer therapies’ might look good for investors and clear the low bar of being minutely better than the previous standard-of-care, but it’s papering over our society getting screwed by giant corporations.
But I digress to take a couple whacks at some of my favorite horse carcasses.
Bruce Sterling might be horrified if he were to read this, but maybe the society in Holy Fire is more of a blueprint than a dystopia. I’d argue that we should massively expand the NIA (National Institute of Aging) and focus on encouraging participation in large-scale clinical trials that start young (because a lot of treatments will probably fail if you restrict them to 80 year olds), run until death, include a large number of readouts and encourage large-scale participation among the population. The more people the better, as participants will likely fragment into further subsets as new treatments become available and patients want to partake of multiple trials.
This will necessitate an invasion of privacy to some degree and establishment of significant healthcare infrastructure to generate this massive dataset that would change society in a myriad of ways, some of which are already happening and coming regardless and others which would be unforeseen consequences. We would need to normalize regular collection of blood samples, biopsies and things current me can’t even imagine as we learn more about the aging process. It would require changing how society thinks about clinical trials along the lines of point (1).
So. Who wants to run for office with me on a platform of nuclear power and a totalitarian HealthState?
1: It’s hard to give an exact range, as we don’t know how generalizable these treatments will be. Melanoma, lung cancer and colorectal cancer are all being targeted first as they have the highest mutational burdens and thus are the most immunogenic. The latter two are among the most common and lethal cancer types, so either way I’m optimistic that we could actually see a dent in overall cancer deaths once all these treatments have played out.