Experimental Treatment

Apparently, because Americans really are as stupid as Latinx and Europeans have feared, about a third of us are not planning on getting the COVID vaccine (source: Stephen Colbert)(hey, he’s just as much a medical expert as Alex Jones is — possibly moreso, because Colbert isn’t concerned with gay frogs). A driving factor is that we don’t like the thought of being human guinea pigs, or a science experiment. We’re told to be cautious and conservative with our health, and, 99% of the time, this is a good strategy — don’t pick up the cast-iron skillet with your bare hands; that’ll land you in the ER. Don’t go hitchhiking through Alabama or the Florida panhandle — that’s how you end up in Deliverance. The majority of the time, an abundance of caution has paid off for our species.

I’m going to explain why that outdated strategy is outdated in just a few paragraphs, but first, let me give you a counter-factual to focus an able-bodied audience and put them in the mind of every chronic disease survivor. It is April, 1970. You are an astronaut on the Apollo 13 mission to the moon. However, in this reality, Eugene Kranz stayed in the military, and, subsequently, NASA’s infamous dictum that losing an American in space is an absolutely unacceptable is not in place. As our stand-in for safety and compassion at NASA, the role of Eugene Kranz today will be played by a South African con-man named Whelon Mist.

While conducting standard “house keeping” maintenance/repair duties on the ship, you hear a loud bang — possibly an explosion — and the instrument panels and safety alarms go off. “Houston, we have a problem.” Houston responds, “So sorry to hear that. Have you tried essential oils and yoga? It worked for Gus Grissom on Apollo 1.” Your requests for help are met with lines about how astronaut safety simply isn’t in the budget, and your contributions to America will be solemnly remembered. And then you look out to see Earth — our home — receding from view. You know you will never see it again. As a former test pilot, you also know what death by asphyxiation and hypothermia looks like.

In this counterfactual, let’s say the radio squawks, “Apollo 13, this is Warren Ellington, head of engineering; we have some possible solutions for you, but they’re experimental.”

In this situation, is the logical action to ask whether Walter Cronkite has reviewed these procedures? Would you inquire as to Nixon’s view? Or would you radio back, “We read you, Ellington, go ahead?”

America’s current “vaccine indecision” (that’s an amazing euphemism for, “prefers drowning in their own fluids to breathing”) is like asking about Cronkite’s views on LEM battery re-engineering. I realize that plenty of people who are otherwise quite bright might not appreciate my suggestion that they’re not using their full mental potential, but anti-vaxxers won’t like my alternative hypotheses.

Here’s what I know, as an experimental treatment patient: the only thing worse than the phrase, “We’d like to recommend an experimental treatment that’s still in basic safety testing, but we think you’d be a good candidate,” is the phrase, “We’d like to discuss making you as comfortable as possible.”

Yes, having an experimental substance injected into you sucks a lot. Care to know what’s worse? Living with a permanent autoimmune disorder, like a young friend of mine, who got COVID, survived, but has discovered some upsetting long-term cardiac complications.

In my own case, I have a rare form of frequently-fatal brain cancer (it’s not uncommon for physicians to simply refuse to treat us), and, even though I have a “lucky” gene that confers a 30–50% survival rate, I leapt at an experimental treatment option, because I figured it was better than a 50–70% chance of dying one of the most-awful deaths known to science. An experimental vaccine absolutely does not begin to compare, in any way, to experimental chemo. And, hey, I have now had clean scans for longer than I was initially-predicted to survive, so, sometimes, that gamble pays off.

And, to all my vaccine-hesitant, abled friends, I’ll let you in on a secret that all chronic disease survivors know: death is not the worst-possible outcome in this world. Much like our hypothetical doomed astronauts, you can have control of your life permanently, and irrevocably removed by disease. You do not want a taste of this existence, trust me. Most of us are physically prevented from achieving our goals. Dates end after 20 minutes when you discuss what you want out of life (“In ten years, I don’t really see myself alive, it’s just not a statistical probability”). No one will employ us, because, who wants a weakened, unreliable work force that needs extra time to limp up the stairs? And we’re usually trapped by crushing debt. Much like the hypothetical astronauts, we get to powerlessly watch the planet pass by us without a second thought.

It’s quite possible that nothing bad will happen to you if you don’t get vaccinated. It’s possible that you won’t get vaccinated, and you’ll die. These are the classic disease outcomes if you haven’t actually experienced disease. There’s a third option that probably hasn’t crossed your mind: you get the disease, you survive, but the costs are so overwhelming and horrible that, in your quieter moments, you actually do wonder if a quick death wouldn’t have been preferable.

This is the real gamble you’re making when you don’t get vaccinated — not that you will or won’t get the disease, but that you can foresee all the possibilities that result from those decisions. What if you get a mild case of COVID, but pass it on to your infant niece or neighbor, who dies? I can’t imagine you’re going to be beloved by friends and family in that situation.

Again, I’m coming in from an extremely pro-experimental treatment viewpoint (one of the few commonalities I see with long-term survivors that cuts across the board of all cancers is that almost all of us have had some sort of experimental treatment), but it’s important to note that, if the unknowns of an experimental treatment frighten you, the unknowns of a disease we’ve known about for less than three years should scare the hell out of you. We know that herpes and HIV can hide out in your system for years; we don’t know what ten years of COVID survival looks like. We don’t even know if that’s possible — for all we know; everyone who survived infection last year will drop dead in the next few years.

Here’s the bottom line with experimental treatment: By the time it’s licensed for use in humans, medicine has a pretty good idea of most of the possible side effects and outcomes. We don’t have any idea what the outcomes of COVID survival look like three or four years post-infection, and that’s the real gamble you make when you don’t get vaccinated.