Five Things That Could Save Your Life If You're Immunocompromised

Hello from day 1,113 of isolation. It's me, your immunocompromised friend in hell. Most days, it feels like the entire world wants you to eff off and die before they'll just strap a mask to their flappers. As masking in doctors offices ends and everyone is slowly being forced back into offices and conferences, the outside keeps feeling riskier. You already know you are your best advocate. As the entire world shifts back into "normal" (best of luck with that), we have a different reality. Here are the five actions that really could save your life.

Stay on top of your boosters

The CDC really garbled the language around vaccines for immunocompromised (IC) people. The initial series was three shots, not two, then we had access to more boosters, and then Evusheld; it was all very hard to decipher. The good news is that it's easier now: You just get the the bivalent booster, and you're done. As a bonus, it's the only booster anymore, so if you've gotten boosted since late fall, you got the bivalent. If you haven't gotten it (and can medically do so), time's a wastin'. The bad news, and there's a bit of it, is that Evusheld doesn't work against the current variant, so I hope you enjoyed that 12-hour desperate drive you took to find it. For those who couldn't form antibodies or get vaccine doses for medical reasons, Evusheld was two shots of monoclonal antibodies delivered directly into your hip. But as variants change, so does the efficacy of monoclonal antibodies, and so as we moved into late winter's variants, they removed the emergency-use authorization for Evusheld as it joined all the other monoclonal antibodies that had previously worked, but don't anymore.

Some folks are trying to get scripts from physicians for an additional bivalent booster, and many have success. However, since there is no formal protocol from the CDC or FDA on giving additional boosters yet, no pharmacist will fill the script. This week, there was news that an additional booster might become available for us in the next few weeks, so it's worth it to stay on top of the news. Set a google alert for "bivalent, immunocompromised."

If you're one of the lucky IC bunch that can actually get vaccine doses, and then actually form antibodies to the vaccine, you still may want to time that booster for two weeks or so before a risky event because that's when your response will be the highest. Studies show that in our bodies, these vaccines wane very quickly, which is why hopefully, we'll have more tools in the future.

Know what COVID looks like right now

With each subvariant, symptoms of COVID change. While it's worth remembering that you can be totally asymptomatic and still be infectious, I'm sure you're as tired as I am of hearing friends or coworkers claim that they're just suffering from allergies or a cold, based on nothing other than a hunch, before they expose themselves to you. Knowing these symptoms can help you navigate risk mitigation around people.

Loss of taste and smell, a common symptom early on in the COVID crisis, became less common in Delta and Omicron, but made a small reappearance earlier this year. An epidemiologist recently noted that her and her colleagues were all noticing sneezing as a common COVID symptom in the last few weeks, which is unusual, and troubling, for everyone sure they have allergies. That's part of the problem--the variants move too quickly for peer-reviewed studies to be the place to hear about new symptoms.

As one might expect in 2023, the nightly news is the last place to look for these kinds of details...so if you're not already a part of #covidcautious TikTok, now's a good time. Twitter also has a number of epidemiologists and immunologists who break down the latest studies and findings, as well as the community at #covidconscious.

Know where to get a test when you need it

If you have an underlying health condition, you are more prone to severe COVID, but getting treatment depends on getting a positive test. It sucks that PCR tests are hard to come by again. Most people are now relegated to home tests, most of which are rapid antigen/lateral flow tests. These tests are unreliable for the first five or six days because they can show a false negative (positives are reliable). So access to PCRs is essential, but many testing sites have closed, leaving only urgent care centers as options for a rapid PCR. Since you won't want to go where the sick people are, if you can afford it, you'll want to pick up at-home molecular tests. Cue Health and Lucira Health are options, and until May 11, you can still be reimbursed $12 per test, up to eight tests a month by private insurance.

Have a plan for if you get infected

Paxlovid is the only intervention we currently have against COVID. All monoclonal antibodies have now been ruled ineffective, including Evusheld. Interventions like Paxlovid are critical.

You need to understand how Paxlovid works, ensure that you'd be a candidate, and know where you can get it--all before you get COVID. It's an antiviral that lowers your viral load, through a course of 30 pills over five days, and tends to leave a metallic, unappealing taste in your mouth that is partially muted by hard peppermints. The sooner you take Paxlovid, the more effective it is, but you can only get a script within the first five days of symptoms, with a positive test. While it was initially thought that Paxlovid could lead to rebound, which is testing negative and then testing positive again five to 10 days later, this turns out to be true of 15% of all COVID cases, regardless of whether the patient took Paxlovid.

If you have a physician (because not all IC folks have doctors or insurance), you need to discuss with them a game plan for if you get COVID. Who should you call? Are you a candidate for Paxlovid or another drug, or should you not pursue it due to a drug conflict or underlying issue? What if you test positive on a weekend; who would you call then? Remember, pharmacists can only script Paxlovid if they have your medical history, including tests, so your best bet is always going to be your physician. A call to the office can answer these questions usually.

You also need to know where to get a script filled. Few pharmacies are open 24 hours, and not everyone stocks Paxlovid--and even those that are listed may not have it in stock. It's good to try calling and figuring out which pharmacy near you usually has it.

If you don't have a physician, you can still get Paxlovid, and its worth your time to see which of these are accessible to you, now. First, there are a number of online virtual care platforms that specifically exist to script Paxlovid. You set up an appointment, pay a set rate, get connected, show them your positive test, and discuss your medical history, and they either write a script to fill locally, or overnight Paxlovid to you. In some places like Oregon or Massachusetts, the state has set up an agreement with one of these services to provide free care for those without a doctor or insurance.

Your plan should go beyond medication--who could you call for help getting groceries, taking care of a pet, or checking in on you.

Find your people

Most IC people I know are struggling to find ways to carve out a little more normalcy for themselves while staying safe. Its important to not feel alone, and it turns out, there's a massive community out there of people just like you. Its time to root them out and forge some new relationships, either online or offline.

First, there's the covidmeetups.com site, which is rudimentary but pretty great for legitimately connecting with people nearby. There's an unthinkably large community on Facebook called "Still COVIDing" made up of hundreds of microgroups for your city, or singles or crafters or hikers, etc. There are support groups on meetup.com, and the twitter and TikTok hashtags I mentioned. Since Hinge and Bumble haven't figured this one out yet, someone took up the cause on IG and started Covid Safe Cuties.

Upgrade those masks to an elastomeric, do a fit check, and invest in some ventilation and filtration.

I know the exhaustion of trying to explain to your people why you're still doing all this extra work to stay safe. That's why finding people you don't have to explain anything to is critical.

It's been so reassuring lately to realize how many people there actually are like me, living below the noise about going back to normal. Finding other people you can talk to can help make the next few years a little more tolerable as we try to figure out a new normal for us, too.