The data doesn't tell us why people have not sought aid, and it would be presumptuous to conclude that they don't need it. There are myriad reasons why pwLC have not sought assistance, starting with: newly disabled people know little about the system. People with new symptoms might experience a range of things, like hoping it will pass or being too bogged down to have the bandwidth to investigate an overly complicated and dismissive system. I'd like the perspective of disability advocates to help us understand what this data does and doesn't mean.
Agreed that this is not the whole story. Somebody posted a link to a relevant Washington Post story on twitter. Link here (because I think if you follow it, it's not paywalled): https://twitter.com/Ikat0/status/1662490537952174082?s=20
"thinking it will pass" is a big one. If you are disabled because of a spinal injury, cancer, or a fall, you know you definitely will need to file. Long Covid, mental illnesses, CFS - those are types where you will be hesitant "just give it a few more weeks"
Another data point suggesting that long covid is not impacting the ability to work among those of working age is that the % of prime working age adults (25-54) is the highest it has been since the late '90s. I am guessing that "extremely long covid" (which is what it would take to file for disability) impacted a very very tiny group of non-seniors.
There are data that suggest that most LC patients recover by 6-12 months, as I recall. So could be only short-term disability was needed in such cases. Not sure about the different systems for that. I'm not an expert on that aspect and would be interested to hear from some on that.
Only experience I have is that I just submitted a Long Term Disability claim for my wife roughly 4 weeks after she was diagnosed with Peritoneal Carcinomatosis. (If you got an auto-note saying I turned off auto-renewal, that's why - pausing all 40 paid subs).
You would think this diagnosis would be an instant approval (anyone not familiar Cleveland Clinic says "It marks the end of your cancer journey... and if you have just been diagnosed for the first time with Carcinomatosis, it still marks the end of your journey").
Obviously I'm heartbroken for her, our children, her parents and siblings, but trying to compartmentalize. Thankfully her hospital has been great about disability coverage, benefits, etc. so at least she doesn't have to worry about any of that which is a luxury few people would have in this situation.
Social Security said she has to wait no matter what 5 months until first payment. Thankfully we aren't relying on this money, I feel bad for anyone who needs it immediately. This appears to be a fixed wait time, and there is no back pay.
Anyway, enough of that sob story, it wouldn't be a post from me without a controversial take, so I propose the obvious two-fold hypothesis:
1) "Long Covid" may be us realizing that perhaps all of these unexplained long term ailments we couldn't pin origin of all these decades may be lingering viral infections**, it's just this is the first time in history we PCR tested the planet to know who had what and when. Disability claims may be flat because the same number of people who got Long Covid bad enough to seek disability were the same number to seek disability from (unknown to them) post viral syndrome from other ILI.
2) Our expectation of Long Covid being so prevalent is because the same bad data from early surveys keeps getting regurtigated uncritically. The "20-30%" for example comes from a UK Pulse Survey where participants woujld log in daily stating their symptoms. The attrition rate was ridiculous. CDC also had a 40 question survey with a 7% response rate they used to keep citing 20-30%, and I saw both of those repeated as facts in March issue of American Family Physician. It could be that we were overstating long Covid by magnitudes.
** I always like to remind people, especially younger people, that the prevailing wisdom in medicine was that ailments like CFS, Fibromyalgia, etc were psychosomatic diseases in the 90's and early 00's. Jeremy - please weigh in here as I believe you started medical school just as they were taken more seriously, but I would guess you knows/knew you fair share old-school docs who think a lots of this "in their heads"?
Thank you for this. I greatly appreciate you explaining the data and understand we just don’t know yet ( which I am really tired of when it comes to COVID). You and Dr. Osterholm would make a great podcast! Would love to know your thoughts on how we move on. Are we still in danger of serious outcomes if vaccinated and boosted? Thank you again for your work.
I think as always it depends on baseline risks. Severely immunocompromised surely are at risk. From there, it scales down a bunch. I personally still have not yet gotten Covid. I'm 44 with asthma and mildly increased BMI over "normal." These risks don't strike me as serious and my main concern around getting Covid (other than feeling like crap for 1-14 days) is missing work, slow recovery of symptoms (whether or not that would reach LC status or not), and my desire to not spread it to anyone who could be vulnerable. No two people's risks are the same...so it's hard to advise. But these days, severe outcomes are MUCH less common on a per-person basis.
Thank you so much for your honest reply. I feel in the same category but in the 53 year old category. I agree the hardest part is that you don’t want to make others ill who are in a different category as well as I don’t want to be sick or get LC. Thank you again for continuing this platform as it still feels hard to navigate!
Benjamin, great article, and thank you for dipping in here to share it with us.
If I could make one critique, when you said:
"Even this may be a major undercount. The dashboard calculation assumes that 30 percent [1] of COVID patients will develop lasting symptoms, then applies that rate to the 85 million confirmed cases on the books."
I think the data in the cited Jama study deserved more scrutiny. It was prospective observational study (generally lower pyramid of evidence) and had an extremely small sample size (234).
Another concern is that it pooled people who had a confirmed PCR test in a Hospital database, of which 43% had sought medical care (IIRC national average is 5%?) after an attrition rate of 75%.
To me, this felt like the kind of study you'd see proposing that coffee, Red Wine, or 2 Eggs a day would lower cancer risk.
I only point this out because every time I see the 30% number referenced in articles, the underlying study is usually of very low quality, yet the majority of readers aren't going to click the link, read the actual paper.
I suspect it explains the discrepancy you noted from the KFF? Curious your views in the year since you penned this piece?
[Edit, I know this likely comes off condescending to a pathologist of all people with my 'but don't you see issues with the study' schtick - apologize if so]
The data doesn't tell us why people have not sought aid, and it would be presumptuous to conclude that they don't need it. There are myriad reasons why pwLC have not sought assistance, starting with: newly disabled people know little about the system. People with new symptoms might experience a range of things, like hoping it will pass or being too bogged down to have the bandwidth to investigate an overly complicated and dismissive system. I'd like the perspective of disability advocates to help us understand what this data does and doesn't mean.
Agreed that this is not the whole story. Somebody posted a link to a relevant Washington Post story on twitter. Link here (because I think if you follow it, it's not paywalled): https://twitter.com/Ikat0/status/1662490537952174082?s=20
"thinking it will pass" is a big one. If you are disabled because of a spinal injury, cancer, or a fall, you know you definitely will need to file. Long Covid, mental illnesses, CFS - those are types where you will be hesitant "just give it a few more weeks"
Another data point suggesting that long covid is not impacting the ability to work among those of working age is that the % of prime working age adults (25-54) is the highest it has been since the late '90s. I am guessing that "extremely long covid" (which is what it would take to file for disability) impacted a very very tiny group of non-seniors.
There are data that suggest that most LC patients recover by 6-12 months, as I recall. So could be only short-term disability was needed in such cases. Not sure about the different systems for that. I'm not an expert on that aspect and would be interested to hear from some on that.
Only experience I have is that I just submitted a Long Term Disability claim for my wife roughly 4 weeks after she was diagnosed with Peritoneal Carcinomatosis. (If you got an auto-note saying I turned off auto-renewal, that's why - pausing all 40 paid subs).
You would think this diagnosis would be an instant approval (anyone not familiar Cleveland Clinic says "It marks the end of your cancer journey... and if you have just been diagnosed for the first time with Carcinomatosis, it still marks the end of your journey").
Obviously I'm heartbroken for her, our children, her parents and siblings, but trying to compartmentalize. Thankfully her hospital has been great about disability coverage, benefits, etc. so at least she doesn't have to worry about any of that which is a luxury few people would have in this situation.
Social Security said she has to wait no matter what 5 months until first payment. Thankfully we aren't relying on this money, I feel bad for anyone who needs it immediately. This appears to be a fixed wait time, and there is no back pay.
Anyway, enough of that sob story, it wouldn't be a post from me without a controversial take, so I propose the obvious two-fold hypothesis:
1) "Long Covid" may be us realizing that perhaps all of these unexplained long term ailments we couldn't pin origin of all these decades may be lingering viral infections**, it's just this is the first time in history we PCR tested the planet to know who had what and when. Disability claims may be flat because the same number of people who got Long Covid bad enough to seek disability were the same number to seek disability from (unknown to them) post viral syndrome from other ILI.
2) Our expectation of Long Covid being so prevalent is because the same bad data from early surveys keeps getting regurtigated uncritically. The "20-30%" for example comes from a UK Pulse Survey where participants woujld log in daily stating their symptoms. The attrition rate was ridiculous. CDC also had a 40 question survey with a 7% response rate they used to keep citing 20-30%, and I saw both of those repeated as facts in March issue of American Family Physician. It could be that we were overstating long Covid by magnitudes.
** I always like to remind people, especially younger people, that the prevailing wisdom in medicine was that ailments like CFS, Fibromyalgia, etc were psychosomatic diseases in the 90's and early 00's. Jeremy - please weigh in here as I believe you started medical school just as they were taken more seriously, but I would guess you knows/knew you fair share old-school docs who think a lots of this "in their heads"?
Thank you for this. I greatly appreciate you explaining the data and understand we just don’t know yet ( which I am really tired of when it comes to COVID). You and Dr. Osterholm would make a great podcast! Would love to know your thoughts on how we move on. Are we still in danger of serious outcomes if vaccinated and boosted? Thank you again for your work.
I think as always it depends on baseline risks. Severely immunocompromised surely are at risk. From there, it scales down a bunch. I personally still have not yet gotten Covid. I'm 44 with asthma and mildly increased BMI over "normal." These risks don't strike me as serious and my main concern around getting Covid (other than feeling like crap for 1-14 days) is missing work, slow recovery of symptoms (whether or not that would reach LC status or not), and my desire to not spread it to anyone who could be vulnerable. No two people's risks are the same...so it's hard to advise. But these days, severe outcomes are MUCH less common on a per-person basis.
Thank you so much for your honest reply. I feel in the same category but in the 53 year old category. I agree the hardest part is that you don’t want to make others ill who are in a different category as well as I don’t want to be sick or get LC. Thank you again for continuing this platform as it still feels hard to navigate!
I wrote an article about this last year. At the time, fewer than 30,000 disability applications out of millions made any mention of COVID.
https://www.theatlantic.com/health/archive/2022/06/long-covid-chronic-illness-disability/661285/
Thanks for posting this. I'd forgotten about this piece, which looks to have beaten me to some of these observations by quite some time!
By the way, do you think that's still the case? (i.e. such a small % of applicants mentioning Covid)
Benjamin, great article, and thank you for dipping in here to share it with us.
If I could make one critique, when you said:
"Even this may be a major undercount. The dashboard calculation assumes that 30 percent [1] of COVID patients will develop lasting symptoms, then applies that rate to the 85 million confirmed cases on the books."
I think the data in the cited Jama study deserved more scrutiny. It was prospective observational study (generally lower pyramid of evidence) and had an extremely small sample size (234).
Another concern is that it pooled people who had a confirmed PCR test in a Hospital database, of which 43% had sought medical care (IIRC national average is 5%?) after an attrition rate of 75%.
To me, this felt like the kind of study you'd see proposing that coffee, Red Wine, or 2 Eggs a day would lower cancer risk.
I only point this out because every time I see the 30% number referenced in articles, the underlying study is usually of very low quality, yet the majority of readers aren't going to click the link, read the actual paper.
I suspect it explains the discrepancy you noted from the KFF? Curious your views in the year since you penned this piece?
[Edit, I know this likely comes off condescending to a pathologist of all people with my 'but don't you see issues with the study' schtick - apologize if so]
[1] https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776560