The Aftermath

A century of lessons

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Welcome back.

I’m on the train, off to DC for the weekend to spot some prime blossoms and hang at the spy museum (again), so please enjoy this little ditty about Long COVID.

— Quinn

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“What comes next?” is a question I get pretty often. And not just from my children, who are insatiable monsters.

The only simple answer is “I have no idea”, but that doesn’t exactly pay the bills, so I am constantly going through a (messy) process where I smash together:

  • All of a situation’s known-knowns, known-unknowns, and (paradoxically) unknown-knowns

  • Any potential stakeholders

  • The co-benefits and threat multipliers

  • The geopolitics

  • The science

  • And most importantly, the thing that never ever changes — the inescapable, inexplicably, indestructible humanity of us

All so I can not completely fumble when someone I respect asks the question.

But here’s the thing:

You might get nervous regarding how to respond — as a human, voter, colleague, parent, whatever — when something big and unexpected happens.

But where I get most nervous is when something big and expected happens, and nobody’s talking about what the plan is for the day after.

For the aftermath.

Bernie decided today is Long COVID Awarness Day, so I thought it was an appropriate moment to try to pull together the threads of why Long COVID pisses me off so much, examples of other self-defeating issues we never learned from, and a blueprint for how to do better better.

Because it’s not only Long COVID Awareness Day, it’s also that — not unlike climate change (what a career!) — we’re standing on the precipice of a bunch of different shit, mostly knowing full well what need need to do to not fall down one side or the other, but just…not doing so much of it.

Of course, we have been here before: up shit’s creek, having actively chosen this as our spring break destination, and still without a paddle.

Let’s take a quick trip back to 2003.

In January of that year, space shuttle Columbia launched (for the last time), Willis McGahee’s knee dissolved (on live TV, like Columbia), and America’s “shock and awe” plan to “completely dismantle Iraqi leadership” was revealed to an extremely misled public.

But the intention for shock and awe went much, much further. From the same ancient CBS News article:

“We want them to quit. We want them not to fight," (said) Harlan Ullman, one of the authors of the Shock and Awe concept which relies on large numbers of precision guided weapons.

"So that you have this simultaneous effect, rather like the nuclear weapons at Hiroshima, not taking days or weeks but in minutes," says Ullman.

"You're sitting in Baghdad and all of a sudden you're the general and 30 of your division headquarters have been wiped out. You also take the city down. By that I mean you get rid of their power, water. In 2,3,4,5 days they are physically, emotionally and psychologically exhausted.“

Despite historic protests around the world, coalition bombing began that March.

On the one hand, on day one, we immediately got the result we were looking for: utter destruction.

On the other, the plan failed on every level, and that is only partly due to the fact that there was basically no legitimate plan for day two, for rebuilding the country — literally, societally, politically, etc (please do yourself a favor and do not @ me about the CPA).

We’re in late COVID (at least as far as we’ve known it so far), but we were in late polio and malaria, once. Lyme disease can’t stop won’t stop. Despite America’s biomedical know-how, tens of millions around the world have died from COVID and many more have some version of what we’re calling Long COVID.

Concurrently, there has been a global drop in childhood vaccinations of all kinds, and so fun stuff our recent ancestors worked REALLY hard to beat back, like, again with the measles, are roaring back.

🚨 Look, is it immeasurably easier for me to armchair assess these failures of foresight from the safety of my blog, armed with snacks, and decades and even hundreds of years of hindsight?

Of course it is. And that’s the entire fucking point! We keep doing the same shit.

Anyways, post-viral is nothing new.

Neither, for that case, are the after-effects of bacterial infections like tuberculosis. MS, malaria, polio, measles, Lyme, HIV, you name it, we’ve been there. Fucking ticks, man.

Even after successful treatment for TB, you can get stuck with lung damage. Polio? Lifelong muscle weakness, fatigue, and atrophy. HIV? Well, post-ART it’s thankfully a very different world for about 30 million people, but not everyone can get it, so while the lucky ones get to take ART for the rest of their lives, for the rest, there’s possibly AIDS. And measles? You know, the thing currently in Florida? Blindness, encephalitis, and if you’re extremely unlucky, subacute sclerosing panencephalitis (SSPE), which will kill you instead.

For whatever reason, we the people are hella anxious to move on from whatever our most recent fuckup was, so -- for at least some folks, but probably not you — those “incalculable” 100,000 COVID death headlines feel like a very long time ago.

For folks living with Long COVID or who love someone living with it (👋) — not so much.

However insanely obvious it’s always essential to remind you that the best way to not get Long COVID is to not get COVID. For the first time, or the third.

Our very magical vaccines do not prevent infection, but whereas the “effectiveness of the original booster against severe COVID-19 was about 25%…the effectiveness of updated bivalent boosters was 62% — an increase of 37 percentage points.”

Not to mention, there are a million ways to lessen your odds of exposure, even if, again, all of us have been exposed twelve times over by now.

But opening our aperture a bit (I don’t know how cameras work), it’s not just — for example — older Americans failing to get COVID boosters, or ignorant millennial parents declining the MMR shots.

However simple and amazing treated bed-nets are to prevent malaria infections, and however much we are committed to them, the (insanely dangerous and self-defeating) decline in global childhood vaccinations of every flavor complicates the whole landscape.

This ignorant bullshit 1) kills and maims kids, straight up and 2) makes actual outbreaks much more likely.

Friends: We cannot simply ignore Long COVID and those who suffer from it, or the kids (forced to get) malaria. We cannot hope for a more rapid and thoughtful public health response “next time”. We have to constantly reduce the odds of there being a next time.

It appears at the surface level that at the very least we can frame Long COVID similar to how we consider cancer, now, in the way blood cancer is very different from a tumor or basal cell carcinoma. From post-acute symptoms to long-term health effects, it’s a bitch.

COVID is left an indelible, shitty mark on humanity, like the 1918 flu and HIV/AIDS and so many other viruses etc before it. But we’ve also learned some hard and necessary lessons since I wrote “COVID was a pop quiz on all of the societal choices we made in the few hundred years prior to December 2019.”

The societal systems COVID and Long COVID are testing are just as obvious and complex as the bodily ones — exhaustion, brain fog, sleep issues, organ issues, neck pain, kidney pain, hearing loss, heartburn, hair loss, and of course, America’s favorite, heart disease!

All of which means this is a social challenge as much as a medical one. 

We have a looooong history of gaslighting (if not entirely dismissing) people — and especially women and people of color — with pre-existing conditions.

The growing totality and variety of Long COVID means enough of that shit — it’s high time for a step-change in how we plan for and support people with post-viral issues — and again, not just medically: trust in science is in the shitter, and tidal waves of disinformation are finding we have very little community backbone remaining to stem the flood.

We need a fucking plan. Great news: there’s been a plan all along.

We have to help ourselves and people with Long COVID, now.

None of these are new ideas. In fact, they’re all lessons we’ve learned time and again from all the other diseases I’m not going to type again here.

As always, I look to one of my heroes, the late Paul Farmer, for inspiration:

— Humble ourselves. We’re damn proud of how far we’ve come but if it isn’t clear, our recent and past public health achievements are fragile as hell. But we treat them (often literally) like we have made ourselves indestructible, as bacteria that doesn’t give a shit about your antibiotics grows more prevalent every day.

Long COVID is probably, honestly, like 13 different issues, manifested from some combination of the severity of your case, your immune system, and any other pre-existing conditions.

For most people across the US and the world, being poor isn’t a choice, but unfortunately even if you do have care, we are almost entirely focused on treating you and sending you surprise bills later instead of doing the social shit that will keep you and your family from getting sick in the first place.

And if you’re in one of our many, many, many prisons, working an in-person hourly job with no paid sick leave, or driving your family bankrupt at an understaffed nursing home? Good luck!

We don’t have to be this dumb.

— Listen to patients. This isn’t complicated but lord are we piss poor at this, despite/because of cramming more and more appointments in to a single day. Not everything is post-viral but as recognition and prevalence for conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) grows — we could try validating people’s day-to-day health impacts.

But we also have to listen to their voices — to understand their advocacy and education efforts, however heterogeneous their backgrounds. At this point, not unlike ACT UP and other HIV/AIDS activists of the past, there is no one more experienced with (at least their version of) Long COVID than the patients themselves.

— Recruit, train, and employ a gazillion new community health workers to improve day-to-day wellness, distribute vaccines, support early identification of viral and bacterial outbreaks, provide ongoing care, and — especially, with all of our goddamn paperwork and phone trees — navigation of the healthcare system. Educating parents and school boards is a big part of this lever.

— Take a page (or a book) from the Mayo Clinic and Partner in Health’s community health efforts in Haiti and elsewhere to make care a community effort, integrating physical, neurological, nutrition, and mental health, among others — maybe even housing, if we want to get crazy about it. The incentivized for-profit specialization of American health care is literally killing us and you only have to go to the Mayo Clinic once to understand what’s possible.

— Actually consider social determinants of health, which are real things. Just look at the health outcomes of the 40 states that have adopted that sweet Medicaid cash and the 10 that haven’t. Look at how much healthier families were before we started kicking millions of them off Medicaid this year. Access to care, socioeconomic status, and education are just as important as how dirty your air and water are.

— Fighting disinformation already feels like a lost cause, but with elections happening around the world basically every week for the rest of the year and AI growing more accessible every day, we’ve barely seen the tip. Credible, empathetic, consistent communication from trusted health workers and community members is essential.

— Turn down the privacy ethics — on water! This was a shitty joke. The point is we need way more wastewater monitoring and analyzing, and also local/state/regional plans for what to do when, say, measles (or even norovirus) shows up.

— Not let journalism die. How many Ed Yongs have to bleed into the page for three years and then semi-retire, completely burnt out, for us to understand how vitally important empathetic, informed, patient-centered journalism is?

— Fund basic science and as many different kinds of meaningful trials as we can. Inside the box, outside the box, interdisciplinary, brain to gut, whatever. Test mitochondria for Long COVID, test to try and understand why and how the hell infectious agents like viruses and bacteria cause so many chronic issues. Randomize it, test it, peer-review it, don’t charge one billion dollars to submit or access it, thank U, next.

— On the other hand, stop wasting time and money. NIH Recover’s lambasted observational study makes the F-35 look cost-efficient in comparison (I am of course grossly exaggerating) and their two actual live-in-person trials for Paxlovid and virtual therapy are going…poorly. We can do significantly better here.

— Do other basic shit. Forget the specific virus for 10 seconds and just imagine us leveling the entire playing field against droplets of whatever size and flavor by improving indoor air, everywhere. Making these vaccines wasn’t simple, but now that we have them, we can vaccinate the world, finally. Again, it won’t prevent against infection, but it’ll sure as shit save lives and tens of millions from their own Long COVID journey. We cannot simply develop amazing new vaccines for malaria and maybe even Ebola Sudan, we have to do the work to get them out there.

By choosing not to do these things, we are not only failing to adapt to what COVID continues to do to us, but to leave ourselves even more vulnerable to future pandemics, which are both inevitable and something I’m really fucking disinterested in.

It has only been 15 years since we fought like hell over whether or not to cover pre-existing conditions. I always imagined back then that the only way you could possibly vote against that coverage was if you simply didn’t love someone with a pre-existing condition.

In 2024 and beyond, that scenario is becoming extremely unlikely.

As we struggle through the aftermath, after everyone’s favorite Supreme Court made state Medicaid participation voluntary, ten (mostly red) states still refuse to take that Medicaid money, leaving about two million of their citizens out to dry.

But on the other hand, 40 states have adopted it — even if, and yes I will keep calling this out, we let millions of people get and have Medicaid during COVID and then kicked them back off, mostly because they couldn’t figure out the paperwork. Explain that one to your maker.

Extend the idea of the aftermath and uncover more lateral examples — the unholy aftermath of our ultra-high processed food system, deforestation, air quality, water quality, wiping the Medicaid rolls, of not overhauling indoor air in schools and offices.

Where PEPFAR tilted the course of history, helping to carve out the 21st century for millions more healthy young people across Africa, a full-court press/kitchen sink effort to pay the long-term costs of COVID would similarly adjust history.

Pro-life means the here and now, whatever you think comes after this life, if anything. Even if we are simply borrowing the earth from our children, as we should each seek to be better ancestors.

For millions across the world, the virus lurks in various parts of their bodies, newly disabling them in a variety of ways. This shrapnel will be what remains with us on a day-to-day basis in the years to come.

The odds of getting severe COVID are far lower than they once were, thanks to so many variants and exposures to them, and to vaccines. But COVID isn’t going anywhere, which means Long COVID isn’t, either.

Policymakers here and abroad have the opportunity to (barely) make up for not vaccinating the world by doing it, now, dammit, while simultaneously turning over every possible rock to at least relieve some of the long-hauler symptoms for some of the many, many people who already have or will get them.

The aftermath of learning and committing to washing our hands, to not smoking, to bed nets, to eliminating acid-rain, closing the o-zone hole, to the HPV vaccine, to not shitting in our drinking water, these have unlocked glorious futures. These were revolutions unto themselves.

You and I are not Biff Tanner so we cannot see what the near or far-futures will bring.

But we can see what’s in front of us, we can actually learn from what can before us, and we can adapt our culture, society, and care for a world where COVID — and those suffering from its after-effects — may be with us forever.

✏️ Recommended Reading

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