Decision-making as an immunosuppressed person during a pandemic

When the pandemic began we knew very little. We didn’t know how dangerous any given thing was; if, for example, touching shared surfaces was more of a risk than shared airspace.

It was safe to assume that immunosuppression created more risk of negative outcomes if I became infected with the virus—severe symptoms, hospitalization, death—and possibly also created more risk of infection if exposed.

In that situation, my logical choice was lockdown. Go out as little as possible, and wearing a mask when I did so (even before they were required), follow the hand washing rules rigorously, and wash or disinfect items coming into the house which may have been coughed or sneezed on at some point. Make a pod with only two other people, who were very careful about masks and hand washing and physical distance with those outside our pod.

Soon there was scientific data on the virus’ survival on surfaces which added isolation as an option to washing/disinfecting incoming items and I was able to set up boxes by the front door to allow things to sit for three days.

At various points as time went by new information came in—”yes, it’s transmitted through the air, and everyone should mask”, “yes, immunosuppressed people have substantially worse outcomes so really really avoid getting it”, “actually surfaces are only a short-term risk so you can just isolate for 8-24 hours and wash your hands after to feel particularly safe”, “N95 masks really really help, so get good ones and learn how to fit them properly”, “well, actually surfaces are even safer than we thought, so just wash hands after touching stuff”.

The vaccination became available to some people and that, plus continuing study, brought new data after a while—”vaccinated people are a LOT less likely to get infected if exposed, though not a sure thing, so still wear a mask around people other than your ‘pod'”, “outdoors makes an enormous difference, so you can go for a masked walk with your friends or socialize outside in masks”.

I remained cautious, knowing that my situation was less studied and not represented in the general instructions.

I got the Pfizer vaccine on the first day I was eligible and that lowered my stress though it didn’t change my habits. I felt even better after shot #2 because by then we had data that even people with pre-existing conditions who might not get full protection from the vaccines were experiencing reduced rates of hospitalization and death. But I didn’t change my habits. The “one wrong step could kill you” feeling began to dissipate, even as awareness grew of what a crappy thing COVID-19 is and how much I didn’t want Long COVID.

There wasn’t and still isn’t a way to directly measure protection and to see how well the vaccine did in my body. But there was correlation between protection and spike protein antibodies. So as soon as I could get a test for those, I did.

It was negative.

Not only was I not a ‘fully vaccinated person’ in CDC terms, I didn’t even have a number that let me consider myself anything above 0% vaccinated with regard to my risk of infection.

In all of that information void, I turned to probability to help me decide what to do and what not to do. I used the microCOVID.org Calculator and then moved on to create a microCOVID.org Risk Tracker spreadsheet for myself and to have my two pod-mates make one for their ‘fully vaccinated’ selves (with a different weekly risk budget than my very very conservative one).

This has been enormously helpful in my making informed decisions as I have navigated through the unknown. Those decisions use statistical risk to make safety choices about how much I can socialize with my friends or go out in the world. Having good information and methodology for those decisions helped enormously and contributed to my experiencing less stress around this than the very very very high stress levels I’d had before.

But they haven’t solved my problem: I want to see my friends more than my risk budget allows for getting together with estimated ‘vaccinated person who is sometimes working to the edge of a reasonable risk limit of their own’.

Unless I convince all my friends to track all their activities in their own Risk Tracker—instead of just following the broad CDC and San Francisco city guidelines around mask wearing—and have real week-to-week risk-to-others numbers based on what they’ve been doing, I need to use a stand-in estimated person that’s not overconfident. And that caution burns up my 21 microCOVID’s a week budget very fast now that the COVID rate is rising again.

Adding to this is confirmation that people on my medication often do not get a full response from the vaccines, and that sometimes getting additional vaccinations helps, but not in my case. At least not so far with J&J not doing it for me and my quantitative spike protein antibody test two weeks after Moderna shot #1 still showing negative.

I’m hitting the limit of what will work for me in terms of making my social safety decisions based on statistical probability.

It’s time to switch to a model more like safe sex: a current test showing you don’t have it. And the great part is, there are easy, painless, rapid tests which only take 15 minutes. It’s an expense, but it’s one that seems well worth it for my mental health.

I think it’s gonna be easier to talk my vaccinated friends into sitting on the back porch swabbing their noses before they come inside unmasked than it would have been to convince them to maintain a spreadsheet. 😄

The essential first step to deciding to adopt this approach is to confirm how accurate those tests are and how that compares to the risk level I feel comfortable with.

Based on the interim results of a clinical study where the BinaxNOW™ COVID-19 Antigen Self Test was compared to an FDA authorized high sensitivity SARS-CoV-2 test, BinaxNOW COVID-19 Antigen Self Test correctly identified 84.6% of positive specimens and 98.5% of negative specimens.

[source]

Currently the rate of COVID cases among vaccinated people in San Francisco is about 5.8 per 100K [source]. In microCOVID terms that’s about a 58 microCOVID “expense” to be around a vaccinated San Franciscan who has no symptoms and with no other information.

If BinaxNow has a false negative rate of 15.4%, now that “expense” becomes a 9 microCOVID risk they’re actually positive. A 9 in a million chance they have COVID right now.

The chance that they would transmit to me in that case are even lower, because there’s the ‘partner attack rate’ to consider in exposure in general, but also because being less infectious would correlate with being more likely to appear negative on the BinaxNOW test.

So, I can keep using my microCOVID.org Risk Tracker in general, but for in-person activities where I’m testing people before we’re unmasked together, I should probably estimate it as an activity that costs me 1 microCOVID per person per hour. (That is based on a 14% chance per hour of of getting COVID based on microCOVID.org’s updated estimates plus some downward adjustment for reduced infectiousness.) And where people have a known risk that comes out better, I can log them on a separate line in my Risk Tracker spreadsheet and reduce my “expense” even more.

This still means that getting together with 3 friends to play boardgames or a role-playing game for 3 hours is about a third to half my weekly risk budget right now, but that is often worth it to me!

(Thanks, Joe, for helping me think through the probabilities!)

Published by

Dinah from Kabalor

Author. Discardian. GM. Current project: creating an inclusive indie fantasy ttrpg https://www.patreon.com/kabalor

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