What does society owe immunocompromised people?
February 18, 2022 5:49 PM Subscribe
“Could I actually define my risk of death if I got COVID? No, I really can’t. And that’s a hard thing to make peace with.”
Close to 3 percent of U.S. adults take immunosuppressive drugs, either to treat cancers or autoimmune disorders or to stop their body from rejecting transplanted organs or stem cells. That makes at least 7 million immunocompromised people—a number that’s already larger than the populations of 36 states, without even including the millions more who have diseases that also hamper immunity, such as AIDS and at least 450 genetic disorders.
In the past, immunocompromised people lived with their higher risk of infection, but COVID represents a new threat that, for many, has further jeopardized their ability to be part of the world.
This is getting to me right now.
I am on immune suppressants, quadruple vaxxed, and doing all of the right things.
COVID isn’t over, the drug therapies aren’t widely available and mostly don’t work against the new variants anyway, and there seems to be this desire to just pretend the last 2 years didn’t happen and go back to how things were before, even if we have learned better ways.
A mild cold takes me out in a way it never did before, I can’t imagine what COVID would do.
I very much feel like my life doesn’t matter to the powers that be.
posted by eleanna at 6:54 PM on February 18, 2022 [37 favorites]
I am on immune suppressants, quadruple vaxxed, and doing all of the right things.
COVID isn’t over, the drug therapies aren’t widely available and mostly don’t work against the new variants anyway, and there seems to be this desire to just pretend the last 2 years didn’t happen and go back to how things were before, even if we have learned better ways.
A mild cold takes me out in a way it never did before, I can’t imagine what COVID would do.
I very much feel like my life doesn’t matter to the powers that be.
posted by eleanna at 6:54 PM on February 18, 2022 [37 favorites]
I was going to cobble together a post about this piece, so thanks for doing so.
Just going to drop a few extra links (or rather, a link with many links within) here:
High-Risk Pandemic Stories: A Syllabus:
Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and share them. Disabled, fat, older, poor, immunocompromised, and chronically ill folks have been oracles well before this global public health disaster and continue to this day as institutions and leaders treat marginalized communities as disposable.
With the Disability Visibility Project I feel a keen urgency to publish as many pieces about the pandemic because our perspectives and warnings are not heeded. And here we are today with eugenics and systemic ableism displayed nakedly upon the altar of capitalism and white supremacy. I resent the implication that we have to prove our value and reveal our traumas in order to be seen as human and worthy of ‘care.’
We are all doing what we can with what we have. I hope some of the links of high-risk pandemic stories below will be useful.
posted by mandolin conspiracy at 7:10 PM on February 18, 2022 [17 favorites]
Just going to drop a few extra links (or rather, a link with many links within) here:
High-Risk Pandemic Stories: A Syllabus:
Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and share them. Disabled, fat, older, poor, immunocompromised, and chronically ill folks have been oracles well before this global public health disaster and continue to this day as institutions and leaders treat marginalized communities as disposable.
With the Disability Visibility Project I feel a keen urgency to publish as many pieces about the pandemic because our perspectives and warnings are not heeded. And here we are today with eugenics and systemic ableism displayed nakedly upon the altar of capitalism and white supremacy. I resent the implication that we have to prove our value and reveal our traumas in order to be seen as human and worthy of ‘care.’
We are all doing what we can with what we have. I hope some of the links of high-risk pandemic stories below will be useful.
posted by mandolin conspiracy at 7:10 PM on February 18, 2022 [17 favorites]
I very much feel like my life doesn’t matter to the powers that be.
I sort of feel like the Somme, or Verdun, would be good exemplars here, the only difference is which side is shooting at you.
posted by aramaic at 7:49 PM on February 18, 2022 [1 favorite]
I sort of feel like the Somme, or Verdun, would be good exemplars here, the only difference is which side is shooting at you.
posted by aramaic at 7:49 PM on February 18, 2022 [1 favorite]
Lost my job and my ability to cope. I'm here if anyone needs to talk. We are supposed to be good at this...being immunocompromised for "like ever". But this. Someone needs to hug me through this.
posted by lextex at 7:51 PM on February 18, 2022 [18 favorites]
posted by lextex at 7:51 PM on February 18, 2022 [18 favorites]
I've been on Stelara for a few years now. It's pretty good at keeping my immune system from fighting my digestive system, but then I don't have much of an immune system. I'm pretty paranoid about it, and even before Covid hit I had pared down my contact with public spaces pretty seriously.
And now it's two years in, and I've got systems in place to get most everything delivered to me. Food, weed, pencil sharpeners, pet food, whatever, it can mostly be dropped off at my door. My biggest risks lately have been my medical appointments, and the maintenance stuff for the car I use to go to the medical appointments.
Am I being too cautious? How bad would it really be if I got it? How would any long-term effects dovetail with the chronic conditions and the medications I already take? How would long-term psychiatric effects go with my already precarious mental health? Can I ever plan to have anything like a normal life again, or should I batten down the hatches and plan to shelter in place for the foreseeable future?
Whatever the answer to these questions, there's one thing that's become pretty clear; I'm on my own. Help isn't coming. It's going to be up to me to put together a life that can be lived remotely, shore up my health insurance, and take cover as best I can for the duration. However long that might be. Society has shrugged its shoulders and moved on, and I've got to deal with that however I can.
And last week I started on Azathioprine, which helps my symptoms enormously, but delivers a final knockout blow to my immune system.
I know I'm privileged to live in my little bubble, and I appreciate my situation every day. But I'm massively isolated, I'm not good at making friends online, and I think this much alone time is making me kind of weird. Living like this really isn't good for me, but the alternatives all seem much worse.
At least there's video games and weed. Anything's tolerable with video games and weed.
Right?
posted by MrVisible at 7:53 PM on February 18, 2022 [24 favorites]
And now it's two years in, and I've got systems in place to get most everything delivered to me. Food, weed, pencil sharpeners, pet food, whatever, it can mostly be dropped off at my door. My biggest risks lately have been my medical appointments, and the maintenance stuff for the car I use to go to the medical appointments.
Am I being too cautious? How bad would it really be if I got it? How would any long-term effects dovetail with the chronic conditions and the medications I already take? How would long-term psychiatric effects go with my already precarious mental health? Can I ever plan to have anything like a normal life again, or should I batten down the hatches and plan to shelter in place for the foreseeable future?
Whatever the answer to these questions, there's one thing that's become pretty clear; I'm on my own. Help isn't coming. It's going to be up to me to put together a life that can be lived remotely, shore up my health insurance, and take cover as best I can for the duration. However long that might be. Society has shrugged its shoulders and moved on, and I've got to deal with that however I can.
And last week I started on Azathioprine, which helps my symptoms enormously, but delivers a final knockout blow to my immune system.
I know I'm privileged to live in my little bubble, and I appreciate my situation every day. But I'm massively isolated, I'm not good at making friends online, and I think this much alone time is making me kind of weird. Living like this really isn't good for me, but the alternatives all seem much worse.
At least there's video games and weed. Anything's tolerable with video games and weed.
Right?
posted by MrVisible at 7:53 PM on February 18, 2022 [24 favorites]
Just wish there was a way to get a test of my partner's potential resistance to COVID. I've seen what few studies that are out there. There's a chance her 3 shots have given her enough resistance to be ok. And there's a chance she's got no protection at all. That's one of the frustrating things. Not knowing at all.
I'm not an expert in this and the situations may be different in important ways, but my father has myeloma and had a bone marrow transplant not long ago, and his doctor was able to measure his antibody response after his "full" vaccination and then after the booster. In both cases the numbers were deemed low but adequate, and while antibodies aren't the full story, his fancy doctor deemed it reliable enough that he considers my father protected for now.
posted by chortly at 9:08 PM on February 18, 2022 [3 favorites]
I'm not an expert in this and the situations may be different in important ways, but my father has myeloma and had a bone marrow transplant not long ago, and his doctor was able to measure his antibody response after his "full" vaccination and then after the booster. In both cases the numbers were deemed low but adequate, and while antibodies aren't the full story, his fancy doctor deemed it reliable enough that he considers my father protected for now.
posted by chortly at 9:08 PM on February 18, 2022 [3 favorites]
I'd be interested to hear how the doctor has determined a given level is low but adequate, if your father is in the US.
Test developers have developed the technology needed to determine vaccine titers; but there is no way to receive authorization on a test that can tell if you have sufficient levels of neutralizing antibodies. FDA won't allow a test maker to make that claim yet. All the tests have to carry this statement: "At this time, it is unknown for how long antibodies persist following infection and if the presence of neutralizing antibodies confers protective immunity." (see https://www.fda.gov/media/137698/download - warning that it is a Word Doc)
The tests that are authorized to measure "antibody response" are also only proven for measuring response from a prior COVID infection, not from vaccination. FDA explicitly requires that test makers *not* enroll vaccinated individuals into the trials when validating the performance of these tests. So a doctor using a test to measure antibody response from vaccination is using that test 'off-label', that is, in a way that the test maker has not validated.
Using the test to say levels are 'adequate' is also completely 'off-label'. He or she can say that the patient's level of neutralizing antibodies is at a certain level, but can't say that it's due to vaccination nor how long that level will hold. Also, I'm not sure it's been determined what level the neutralizing antibodies need to be at, so not sure what criteria are being used to translate the number output from the test to "adequate".
We can rail against a lot of things, but in my opinion, FDA needs to allow developers a path to validate tests that can determine whether titers are adequate or not.
posted by Tandem Affinity at 10:03 PM on February 18, 2022 [10 favorites]
Test developers have developed the technology needed to determine vaccine titers; but there is no way to receive authorization on a test that can tell if you have sufficient levels of neutralizing antibodies. FDA won't allow a test maker to make that claim yet. All the tests have to carry this statement: "At this time, it is unknown for how long antibodies persist following infection and if the presence of neutralizing antibodies confers protective immunity." (see https://www.fda.gov/media/137698/download - warning that it is a Word Doc)
The tests that are authorized to measure "antibody response" are also only proven for measuring response from a prior COVID infection, not from vaccination. FDA explicitly requires that test makers *not* enroll vaccinated individuals into the trials when validating the performance of these tests. So a doctor using a test to measure antibody response from vaccination is using that test 'off-label', that is, in a way that the test maker has not validated.
Using the test to say levels are 'adequate' is also completely 'off-label'. He or she can say that the patient's level of neutralizing antibodies is at a certain level, but can't say that it's due to vaccination nor how long that level will hold. Also, I'm not sure it's been determined what level the neutralizing antibodies need to be at, so not sure what criteria are being used to translate the number output from the test to "adequate".
We can rail against a lot of things, but in my opinion, FDA needs to allow developers a path to validate tests that can determine whether titers are adequate or not.
posted by Tandem Affinity at 10:03 PM on February 18, 2022 [10 favorites]
(And to give FDA a little slack here, I don't know the state of the science to set that limit for 'adequate' titer, but I know there has been research into it. Perhaps it's not just FDA but FDA in concert with other government agencies that needs to solicit, support, and/or facilitate filling gaps in that research, so that things can move forward.)
posted by Tandem Affinity at 10:09 PM on February 18, 2022 [4 favorites]
posted by Tandem Affinity at 10:09 PM on February 18, 2022 [4 favorites]
It's important to keep in mind that, in the US, paxlovid availability is now pretty decent, and there are omicron-competent monoclonals available as well. The toolkit for treating immunocompromised people when they do get infected is much more robust than it was earlier in the pandemic.
posted by kickingtheground at 10:11 PM on February 18, 2022 [7 favorites]
posted by kickingtheground at 10:11 PM on February 18, 2022 [7 favorites]
Mod note: One deleted. Literally the second sentence in the posted article identifies this topic as being about the situation in the US. The second sentence in the post itself identifies this as being about the situation in the US. If you don't want to read or discuss about immunocompromised people and Covid in the US, please pass on this thread.
posted by taz (staff) at 11:01 PM on February 18, 2022 [9 favorites]
posted by taz (staff) at 11:01 PM on February 18, 2022 [9 favorites]
I'm immunocompromised and required by my employer to work (without question or complaint) with unmasked, unvaccinated students. My primary care doctor works for Emory, the major academic medical center in the area, and 2 weeks ago when I had an exposure in one of my classes, she told me to call if I test positive and maybe, just maybe, paxlovid or omicron appropriate monoclonal antibodies might be available, but the supplies are still limited and it would likely depend on the day of the week I need them whether I could get them in time (no possibility on the weekends).
posted by hydropsyche at 4:34 AM on February 19, 2022 [9 favorites]
posted by hydropsyche at 4:34 AM on February 19, 2022 [9 favorites]
Looking at going on immune suppression drugs for another condition shortly. Been thinking about these issues quite a bit. Have already caught the Covid bug (twice!) before a vaccine was available. Hope that's enough (*and* being vaccinated) to get me through after the drugs kick in. :(
posted by aleph at 5:39 AM on February 19, 2022 [3 favorites]
posted by aleph at 5:39 AM on February 19, 2022 [3 favorites]
I'm not an expert in this and the situations may be different in important ways, but my father has myeloma and had a bone marrow transplant not long ago, and his doctor was able to measure his antibody response after his "full" vaccination and then after the booster. In both cases the numbers were deemed low but adequate, and while antibodies aren't the full story, his fancy doctor deemed it reliable enough that he considers my father protected for now.
I also have multiple myeloma, and everything I'm hearing from my fancy doctor and those of other people on the myeloma support board I'm on is that they don't really know what the anitbody numbers mean. I had an immediate antibody response to the first two shots (too fast to even make sense, my doctor said), but I was back to zero within two months. I'm not sure exactly what "protected" means - going to the grocery store with a mask? Going to church without one? But this is the doctor's educated guess unless there's been new research in the last few days (which is possible - I work for a medical journal and we are getting so many COVID papers).
Evusheld is the first (and I think only) COVID-preventative monoclonal antibody - it's been approved by the FDA for emergency use for immunocompromised people. The problem is that there is only 10% of what they need to cover everyone who would benefit. Different health centers are using different criteria - mine is using a tier system, and I just found out I'm in the first tier - which seemed to be both good and bad news - congratulations, you are at very, very high risk. I asked if that would enable me to travel (I haven't seen my far-away kids and grandkids in two years), and the answer is it would be safe, but they don't really know how safe it would be. At any rate, I would suggest that immunocompromised people ask about whether they're eligible for it.
posted by FencingGal at 6:22 AM on February 19, 2022 [11 favorites]
I also have multiple myeloma, and everything I'm hearing from my fancy doctor and those of other people on the myeloma support board I'm on is that they don't really know what the anitbody numbers mean. I had an immediate antibody response to the first two shots (too fast to even make sense, my doctor said), but I was back to zero within two months. I'm not sure exactly what "protected" means - going to the grocery store with a mask? Going to church without one? But this is the doctor's educated guess unless there's been new research in the last few days (which is possible - I work for a medical journal and we are getting so many COVID papers).
Evusheld is the first (and I think only) COVID-preventative monoclonal antibody - it's been approved by the FDA for emergency use for immunocompromised people. The problem is that there is only 10% of what they need to cover everyone who would benefit. Different health centers are using different criteria - mine is using a tier system, and I just found out I'm in the first tier - which seemed to be both good and bad news - congratulations, you are at very, very high risk. I asked if that would enable me to travel (I haven't seen my far-away kids and grandkids in two years), and the answer is it would be safe, but they don't really know how safe it would be. At any rate, I would suggest that immunocompromised people ask about whether they're eligible for it.
posted by FencingGal at 6:22 AM on February 19, 2022 [11 favorites]
As far as the larger topic goes, I also struggle with this a lot. I don't think healthy people shouldn't be able to go back to their activities because I'm immunocompromised, but it's also frustrating when the activities I'd like to participate in seem to change their rules to be less safe whenever I start thinking maybe I can get involved. It would be such a kindness if people would continue to wear masks in groups like that. Just when I'm thinking it might be safe to go back to indoor fencing and to church, they drop their mask mandates (and I am so grateful for my fencing buddies who started fencing outside and masked when my doctor said I could do that).But my real ire is also reserved for the anti-vax people.
I was hospitalized with the flu for five days a few months before COVID hit - I had been visiting family and no one else got sick, so I think I got infected on the plane - the person next to me was definitely sick. It was one of the scariest experiences of my life, and I think it's made me much more frightened of COVID than I otherwise would have been. Being immunocompromised is no joke, and it's frustrating when articles don't even acknowledge that we exist or just throw in a paragraph of "oh yeah - there are immunocompromised people, but whaddayagonnnado?" I'm very lucky in that I can work from home and get everything delivered, but it's so hard to really see how much people like me just don't seem to matter at all. And, like everything else, it's worse for POC. An early article on COVID mortality for myeloma patients found that the number one predictor of death was being Black or Hispanic - completely separate from comorbidities or age, which are what we usually hear about.
posted by FencingGal at 6:35 AM on February 19, 2022 [17 favorites]
I was hospitalized with the flu for five days a few months before COVID hit - I had been visiting family and no one else got sick, so I think I got infected on the plane - the person next to me was definitely sick. It was one of the scariest experiences of my life, and I think it's made me much more frightened of COVID than I otherwise would have been. Being immunocompromised is no joke, and it's frustrating when articles don't even acknowledge that we exist or just throw in a paragraph of "oh yeah - there are immunocompromised people, but whaddayagonnnado?" I'm very lucky in that I can work from home and get everything delivered, but it's so hard to really see how much people like me just don't seem to matter at all. And, like everything else, it's worse for POC. An early article on COVID mortality for myeloma patients found that the number one predictor of death was being Black or Hispanic - completely separate from comorbidities or age, which are what we usually hear about.
posted by FencingGal at 6:35 AM on February 19, 2022 [17 favorites]
I would say US society owes those more vulnerable to covid a strong focus on actual measures that protect them - Evushield, Paxlovid, vaccination drives, respirators. The current political discourse is totally toxic because it focuses on measures that are much less important (masking kids, vax mandates that only reach the low risk). Nobody would politically disagree on putting our shoulders behind getting enough Evushield out, fair distribution, etc.
posted by haptic_avenger at 7:33 AM on February 19, 2022 [2 favorites]
posted by haptic_avenger at 7:33 AM on February 19, 2022 [2 favorites]
I'm immunocompromised because of the medications I take for asthma control, and generally if I get a respiratory infection, things get bad. I nearly died from sepsis due to pneumonia eight years ago and my lungs have never been the same; it seems as if my ability to cough has been depleted (it's hard to explain) but if I laugh too hard, I immediately get a coughing jag that just plain hurts.
So when I came down with Covid in January, you can imagine how terrified I was. I'm double vaxxed and boosted and I was so, so careful about masking. Thing is...Omicron doesn't care. So when I woke up one morning and even water tasted terrible, and I was ridiculously tired, I called my doctor and we did all the things: tested, put on prophylactic steroids, ordered to rest, etc. Thankfully, my illness never went beyond the loss of taste, terrible terrible fatigue, headaches, and joint pain. I was sleeping 14+ hours a day while on steroids. The brain fog lasted throughout January and into early February and just yesterday I realized I was able to work the entire day with full concentration.
You'd think that this recent bout with Covid would make me feel relieved. I beat it! Nothing bad happened! I'm okay! But no. I'm just as scared as I was before, only now the mask mandates are lifting and I'm expected to be okay with going out to dinner with colleagues and taking a work trip in April. People who aren't compromised just do. not. get. it. I'm afraid that when (and it's pretty much a when) I get Covid again, it's going to be bad. I hope it's not. But there's no guarantee and the fact that non-immunocompromised/non-comorbidity-having people just don't have to make all these decisions anymore...I'm just so tired of it all.
posted by cooker girl at 7:48 AM on February 19, 2022 [15 favorites]
So when I came down with Covid in January, you can imagine how terrified I was. I'm double vaxxed and boosted and I was so, so careful about masking. Thing is...Omicron doesn't care. So when I woke up one morning and even water tasted terrible, and I was ridiculously tired, I called my doctor and we did all the things: tested, put on prophylactic steroids, ordered to rest, etc. Thankfully, my illness never went beyond the loss of taste, terrible terrible fatigue, headaches, and joint pain. I was sleeping 14+ hours a day while on steroids. The brain fog lasted throughout January and into early February and just yesterday I realized I was able to work the entire day with full concentration.
You'd think that this recent bout with Covid would make me feel relieved. I beat it! Nothing bad happened! I'm okay! But no. I'm just as scared as I was before, only now the mask mandates are lifting and I'm expected to be okay with going out to dinner with colleagues and taking a work trip in April. People who aren't compromised just do. not. get. it. I'm afraid that when (and it's pretty much a when) I get Covid again, it's going to be bad. I hope it's not. But there's no guarantee and the fact that non-immunocompromised/non-comorbidity-having people just don't have to make all these decisions anymore...I'm just so tired of it all.
posted by cooker girl at 7:48 AM on February 19, 2022 [15 favorites]
This article rang so true for me that it was like the Atlantic climbed into my head. Immunocompromised and on immunosuppressive meds for it since 2017.
Life before Covid: adventure-seeking, exotic eating, extremely social travel-junkie athlete. I was barely home and my partner and I lived a life constantly in motion.
Life now: terrified shut-in due to living smack dab in the middle of a dense city. I’ve lost all my friends because they got sick of hearing “no” to in-person plans. My family won’t speak to me because they are Antivax and think it’s “all in my head” besides having had 4 shots of mRNA. My partner has been wonderful but we fight a lot because partner is otherwise healthy…and don’t even get me started with the guilt. I’m still an athlete but it’s been a lonely, modified road.
I don’t know when I’ll feel comfortable going to a restaurant. Hell, I don’t know when I will feel comfortable going anywhere knowing that no one gives a rat’s ass if I die. In fact it’s the not knowing while having to juggle other people not caring that is the hardest.
I just want a tiny ounce of compassion.
posted by floweredfish at 8:44 AM on February 19, 2022 [21 favorites]
Life before Covid: adventure-seeking, exotic eating, extremely social travel-junkie athlete. I was barely home and my partner and I lived a life constantly in motion.
Life now: terrified shut-in due to living smack dab in the middle of a dense city. I’ve lost all my friends because they got sick of hearing “no” to in-person plans. My family won’t speak to me because they are Antivax and think it’s “all in my head” besides having had 4 shots of mRNA. My partner has been wonderful but we fight a lot because partner is otherwise healthy…and don’t even get me started with the guilt. I’m still an athlete but it’s been a lonely, modified road.
I don’t know when I’ll feel comfortable going to a restaurant. Hell, I don’t know when I will feel comfortable going anywhere knowing that no one gives a rat’s ass if I die. In fact it’s the not knowing while having to juggle other people not caring that is the hardest.
I just want a tiny ounce of compassion.
posted by floweredfish at 8:44 AM on February 19, 2022 [21 favorites]
Life before Covid: adventure-seeking, exotic eating, extremely social travel-junkie athlete. I was barely home and my partner and I lived a life constantly in motion.
Asking genuinely to understand better, and not as some kind of weird "gotcha": how was it possible for you not to be having to take precautions against all the other illnesses that can prey on the seriously immunocompromised before COVID? I understand that its current incidence and spotty availability of treatments makes COVID significantly alter one's risk calculations now and probably still for some time into the future, but COVID's not uniquely threatening in itself, is it? Most of the immunocompromised people I know of already had to take substantial precautions against everything else that's out there.
posted by praemunire at 9:08 AM on February 19, 2022 [1 favorite]
Asking genuinely to understand better, and not as some kind of weird "gotcha": how was it possible for you not to be having to take precautions against all the other illnesses that can prey on the seriously immunocompromised before COVID? I understand that its current incidence and spotty availability of treatments makes COVID significantly alter one's risk calculations now and probably still for some time into the future, but COVID's not uniquely threatening in itself, is it? Most of the immunocompromised people I know of already had to take substantial precautions against everything else that's out there.
posted by praemunire at 9:08 AM on February 19, 2022 [1 favorite]
Yes, COVID is uniquely threatening in of itself. That’s what it means for it to be a novel virus. We have no stores memory t-cells from our parents or childhood exposure. Hospitalization rates for immunocompromised people are VERY different for covid than nom-novel viruses. Yes, it is uniquely dangerous.
posted by Bottlecap at 9:29 AM on February 19, 2022 [9 favorites]
posted by Bottlecap at 9:29 AM on February 19, 2022 [9 favorites]
PSA
You should already have had four shots, yes four, in most cases if you’re at least moderately immunocompromised and you’re doing Moderna or Pfizer. This info is on the CDCs page for immunocompromised folks.
If you aren’t immunocompromised they are now recommending the booster five months after your primary series (two months if you had the J&J). Here’s your CDC link.
And of course, check with your doctor to see if the CDC guidelines are best for your particular case.
posted by pickles_have_souls at 9:38 AM on February 19, 2022 [3 favorites]
You should already have had four shots, yes four, in most cases if you’re at least moderately immunocompromised and you’re doing Moderna or Pfizer. This info is on the CDCs page for immunocompromised folks.
If you aren’t immunocompromised they are now recommending the booster five months after your primary series (two months if you had the J&J). Here’s your CDC link.
And of course, check with your doctor to see if the CDC guidelines are best for your particular case.
posted by pickles_have_souls at 9:38 AM on February 19, 2022 [3 favorites]
The other thing with COVID is that it's so ubiquitous. And there are still a lot of unknowns.
Even before COVID, immunocompromised people were constantly making risk assessments. Like everyone else, immunocompromised people are going to differ in what they consider too risky, and there are different levels of being immunocompromised. I have to say I wasn't thinking about risk all that much before COVID hit, though I did send an annual email to everyone in my office asking sick people to stay away from me (would have preferred to tell them to stay the hell home, but didn't feel that was an option - the greatest offender was my boss). As I said, being hospitalized for flu did scare me and I probably would have re-assessed anyway if COVID hadn't hit just then. And I found out that people in my office were saying how glad they were that they knew I didn't get it from work because I was traveling for two weeks, so maybe they would have changed their actions too. Aside from having cancer, I'm in generally good health. The high death rate (in the beginning, 40% for people with my cancer) and it being so ubiquitous made it seem very different from risks I'd previously been taking. And at first, there were no vaccinations and no treatment (I'm on meds to prevent shingles for the rest of my life). As vaccinations and treatments have become available, we're re-assessing risk just like everyone else, though there's not very good information yet on how well that stuff works for us. That's why I'm finally considering traveling to see family. But some immunocompromised people wouldn't consider it - and some have already been doing it. One person on my myeloma board was planning to go on a freaking cruise - but cancelled when omicron hit.
posted by FencingGal at 9:45 AM on February 19, 2022 [10 favorites]
Even before COVID, immunocompromised people were constantly making risk assessments. Like everyone else, immunocompromised people are going to differ in what they consider too risky, and there are different levels of being immunocompromised. I have to say I wasn't thinking about risk all that much before COVID hit, though I did send an annual email to everyone in my office asking sick people to stay away from me (would have preferred to tell them to stay the hell home, but didn't feel that was an option - the greatest offender was my boss). As I said, being hospitalized for flu did scare me and I probably would have re-assessed anyway if COVID hadn't hit just then. And I found out that people in my office were saying how glad they were that they knew I didn't get it from work because I was traveling for two weeks, so maybe they would have changed their actions too. Aside from having cancer, I'm in generally good health. The high death rate (in the beginning, 40% for people with my cancer) and it being so ubiquitous made it seem very different from risks I'd previously been taking. And at first, there were no vaccinations and no treatment (I'm on meds to prevent shingles for the rest of my life). As vaccinations and treatments have become available, we're re-assessing risk just like everyone else, though there's not very good information yet on how well that stuff works for us. That's why I'm finally considering traveling to see family. But some immunocompromised people wouldn't consider it - and some have already been doing it. One person on my myeloma board was planning to go on a freaking cruise - but cancelled when omicron hit.
posted by FencingGal at 9:45 AM on February 19, 2022 [10 favorites]
> I've been on Stelara for a few years now. It's pretty good at keeping my immune system from fighting my digestive system, but then I don't have much of an immune system. I'm pretty paranoid about it, and even before Covid hit I had pared down my contact with public spaces pretty seriously. [...] And last week I started on Azathioprine, which helps my symptoms enormously, but delivers a final knockout blow to my immune system.
I'm so sorry you're going through this. To underscore how difficult the calculus is for people like us, I'd like to offer my own story as well.
I was on Stelara for a decade, and other biologics (Humira and Enbrel) before that to treat psoriasis. They all seemed like miracle drugs that helped when nothing else did, to the point where I just figured I'd be taking Stelara for the rest of my life. Aside from having to get blood work done every six months and being slightly more susceptible to infection, I basically didn't have to think about a chronic condition that had previously made my life miserable.
Then in April of last year, during the height of the pandemic, I went to my dermatologist about a small lump on my scalp. I'd been putting off getting it looked at due to the pandemic and being on an immunosuppressant, but my wife convinced me the risk was worth it. The biopsy came back positive for non-Hodgkin lymphoma, and while I'll never know for sure, my hematologist-oncologist believes it was likely caused by one of these medications, which had no long-term safety data at the time I went on them, and in some cases have shown a significant correlation with lymphoma and other cancers. For what it's worth, my dermatologist disagrees with my HemOnc, citing the fact that people with psoriasis are already at increased risk of lymphoma. Either way, I'm now in a situation where I have to stop taking a medication that intentionally weakened my immune system so that I don't make the cancer that weakens my immune system worse.
Fortunately, my lymphoma is very slow-growing and very early stage and my prognosis is relatively good because they found it early, but there are many that aren't going to be so lucky because they're not getting routine screenings or following up on symptoms.
The risk calculus on these things is not easy, and society isn't helping us out by rushing to get back to a normal that a lot of people didn't really have to begin with.
posted by tonycpsu at 10:21 AM on February 19, 2022 [11 favorites]
I'm so sorry you're going through this. To underscore how difficult the calculus is for people like us, I'd like to offer my own story as well.
I was on Stelara for a decade, and other biologics (Humira and Enbrel) before that to treat psoriasis. They all seemed like miracle drugs that helped when nothing else did, to the point where I just figured I'd be taking Stelara for the rest of my life. Aside from having to get blood work done every six months and being slightly more susceptible to infection, I basically didn't have to think about a chronic condition that had previously made my life miserable.
Then in April of last year, during the height of the pandemic, I went to my dermatologist about a small lump on my scalp. I'd been putting off getting it looked at due to the pandemic and being on an immunosuppressant, but my wife convinced me the risk was worth it. The biopsy came back positive for non-Hodgkin lymphoma, and while I'll never know for sure, my hematologist-oncologist believes it was likely caused by one of these medications, which had no long-term safety data at the time I went on them, and in some cases have shown a significant correlation with lymphoma and other cancers. For what it's worth, my dermatologist disagrees with my HemOnc, citing the fact that people with psoriasis are already at increased risk of lymphoma. Either way, I'm now in a situation where I have to stop taking a medication that intentionally weakened my immune system so that I don't make the cancer that weakens my immune system worse.
Fortunately, my lymphoma is very slow-growing and very early stage and my prognosis is relatively good because they found it early, but there are many that aren't going to be so lucky because they're not getting routine screenings or following up on symptoms.
The risk calculus on these things is not easy, and society isn't helping us out by rushing to get back to a normal that a lot of people didn't really have to begin with.
posted by tonycpsu at 10:21 AM on February 19, 2022 [11 favorites]
I very much feel like my life doesn’t matter to the powers that be.
I was just saying to my sister the other day, the only people who care whether I live or die are people who don't have the power to do anything about it. It's disheartening to know that there are more people than I can count to whom a slight inconvenience is more important than the life or death of a fellow human being.
posted by The Underpants Monster at 11:13 AM on February 19, 2022 [15 favorites]
I was just saying to my sister the other day, the only people who care whether I live or die are people who don't have the power to do anything about it. It's disheartening to know that there are more people than I can count to whom a slight inconvenience is more important than the life or death of a fellow human being.
posted by The Underpants Monster at 11:13 AM on February 19, 2022 [15 favorites]
See this recent article in the Atlantic about how COVID is going to be more like smoking than the flu because it's preventable with vaccination. Here's the only mention of high-risk people:
"If everyone who is eligible were triply vaccinated, our health-care system would be functioning normally again. (We do have other methods of protection—antiviral pills and monoclonal antibodies—but these remain in short supply and often fail to make their way to the highest-risk patients.)"
So I guess "normally" means people like me die, but that's OK. Note that the Atlantic is also where the article in the OP was published. It's hard to believe that not a single editor noticed this. Or maybe it's not. This whole thing has been a huge lesson in how people like me don't matter - beginning with the very first information, when we were told this was basically not that bad because it was only going to kill the old and the disabled.
Are people so far from imagining that they will fall into the first group if they're lucky and will also have a good chance of falling in the second eventually? Or if they don't, someone they love almost certainly will? Is there some kind of denial where people can't even consider they'll end up at risk too?
posted by FencingGal at 11:32 AM on February 19, 2022 [20 favorites]
"If everyone who is eligible were triply vaccinated, our health-care system would be functioning normally again. (We do have other methods of protection—antiviral pills and monoclonal antibodies—but these remain in short supply and often fail to make their way to the highest-risk patients.)"
So I guess "normally" means people like me die, but that's OK. Note that the Atlantic is also where the article in the OP was published. It's hard to believe that not a single editor noticed this. Or maybe it's not. This whole thing has been a huge lesson in how people like me don't matter - beginning with the very first information, when we were told this was basically not that bad because it was only going to kill the old and the disabled.
Are people so far from imagining that they will fall into the first group if they're lucky and will also have a good chance of falling in the second eventually? Or if they don't, someone they love almost certainly will? Is there some kind of denial where people can't even consider they'll end up at risk too?
posted by FencingGal at 11:32 AM on February 19, 2022 [20 favorites]
Thanks for the immunocompromised people for sharing; as one is not immunocompromised as of now, it's helpful to know what my risk calculus so should be so I don't get you sick or worse.
posted by fizzix at 12:41 PM on February 19, 2022 [12 favorites]
posted by fizzix at 12:41 PM on February 19, 2022 [12 favorites]
We have as a country a very ableist culture. It is very hard to shake people out of it. Immunocompromised people are human beings. It has until COVID been possible for immunocompromised people to lead very full lives. COVID is enough worse than all the other infectious diseases that it indeed is a unique threat.
Not just to humans. Quite a few animal species can or have gotten it.
I am somewhat compromised. Rheumatoid arthritis. I have had COVID twice. Once at the beginning before anyone knew it hit my town, and a breakthrough Delta after my second shot and before my booster. Very unpleasant experience. So many where I live will not wear a mask for various reasons. My son-in-law will not get vaccinated or mask up. My son and his partner got it at the dentist. My daughter got it at work before vaccines. We have not had our usual family gatherings because my daughter doesn’t want any of us to die. I nearly lost a niece. The manager at my building lost a daughter. My local Democratic Party has been virtual exclusively since I got the Delta. I ran our office’s sign distribution program during the 2020 election, BEFORE vaccines were available, and no one got sick. My state is opening up next month. I feel like it’s premature. Not only because of people who are immune compromised but because not enough children are vaccinated. The screaming idiots won.
posted by Katjusa Roquette at 10:39 PM on February 19, 2022 [12 favorites]
Not just to humans. Quite a few animal species can or have gotten it.
I am somewhat compromised. Rheumatoid arthritis. I have had COVID twice. Once at the beginning before anyone knew it hit my town, and a breakthrough Delta after my second shot and before my booster. Very unpleasant experience. So many where I live will not wear a mask for various reasons. My son-in-law will not get vaccinated or mask up. My son and his partner got it at the dentist. My daughter got it at work before vaccines. We have not had our usual family gatherings because my daughter doesn’t want any of us to die. I nearly lost a niece. The manager at my building lost a daughter. My local Democratic Party has been virtual exclusively since I got the Delta. I ran our office’s sign distribution program during the 2020 election, BEFORE vaccines were available, and no one got sick. My state is opening up next month. I feel like it’s premature. Not only because of people who are immune compromised but because not enough children are vaccinated. The screaming idiots won.
posted by Katjusa Roquette at 10:39 PM on February 19, 2022 [12 favorites]
I asked if [Evusheld] would enable me to travel (I haven't seen my far-away kids and grandkids in two years), and the answer is it would be safe, but they don't really know how safe it would be.
I meant to write "the answer is it would be safer," not "safe."
(Not sure why the mods didn't fix this - I asked right away - it's an important difference, so I'm correcting myself here.)
posted by FencingGal at 5:40 AM on February 20, 2022 [2 favorites]
I meant to write "the answer is it would be safer," not "safe."
(Not sure why the mods didn't fix this - I asked right away - it's an important difference, so I'm correcting myself here.)
posted by FencingGal at 5:40 AM on February 20, 2022 [2 favorites]
It’s also a unique threat because appointments that used to take a week to get now take months, if you even ever get scheduled. The health care system is in free fall and massively overloaded. That does uniquely impact people who regularly need to see a doctor several times a month. Not only are we exposed but we’re also struggling to get in because everyone is so booked. It’s taking years off of our lives because of delays in treatment.
posted by Bottlecap at 9:23 PM on February 20, 2022 [11 favorites]
posted by Bottlecap at 9:23 PM on February 20, 2022 [11 favorites]
From The New Inquiry, The Beyblade Strategy pushes back hard against the idea that “focused protection” alone can meet the needs of vulnerable people.
posted by mbrubeck at 1:47 PM on February 23, 2022 [3 favorites]
posted by mbrubeck at 1:47 PM on February 23, 2022 [3 favorites]
To followup on Fencing Gal's mention of Evusheld, even as someone who is both immunocompromised and way more familiar with Emergency Use Authorizations than I ever wanted to be, I missed the news that Evusheld is *preventative* rather than being used to treat illness after a positive COVID test. If you qualify for it, you receive a preventative infusion every six months, even if you are healthy and COVID-negative.
I didn't even totally absorb what it was intended for after reading Fencing Gal's description of it as preventative here - I thought it was like all the other Mabs until I went to a conference that included a presentation discussing it. Maybe I'm just poor at reading comprehension....
All other caveats already mentioned about limited supply may apply, of course, so this isn't a perfect solution. But if you are worried and haven't asked your doctor about this, you might want to. (My rheumatologist certainly didn't notify me when it came out so don't assume yours is going to get in touch with you....)
posted by Tandem Affinity at 10:05 PM on March 1, 2022 [1 favorite]
I didn't even totally absorb what it was intended for after reading Fencing Gal's description of it as preventative here - I thought it was like all the other Mabs until I went to a conference that included a presentation discussing it. Maybe I'm just poor at reading comprehension....
All other caveats already mentioned about limited supply may apply, of course, so this isn't a perfect solution. But if you are worried and haven't asked your doctor about this, you might want to. (My rheumatologist certainly didn't notify me when it came out so don't assume yours is going to get in touch with you....)
posted by Tandem Affinity at 10:05 PM on March 1, 2022 [1 favorite]
> All other caveats already mentioned about limited supply may apply, of course, so this isn't a perfect solution. But if you are worried and haven't asked your doctor about this, you might want to. (My rheumatologist certainly didn't notify me when it came out so don't assume yours is going to get in touch with you....)
Yeah, I contacted my HemOnc office when our hospital system got something like 500 doses in and they basically gave me "don't call us, we'll call you". I didn't expect my grading/staging to put me at the front of the line, but it's pretty clear that the supply is still limited enough that it'll be a while before everyone who might benefit can get it.
posted by tonycpsu at 8:25 AM on March 2, 2022 [1 favorite]
Yeah, I contacted my HemOnc office when our hospital system got something like 500 doses in and they basically gave me "don't call us, we'll call you". I didn't expect my grading/staging to put me at the front of the line, but it's pretty clear that the supply is still limited enough that it'll be a while before everyone who might benefit can get it.
posted by tonycpsu at 8:25 AM on March 2, 2022 [1 favorite]
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