As promised, in this post I’d like to look at long term impacts of COVID-19 on people who catch the disease. We don’t know most of those impacts yet. We do know this virus wreaks havoc on the body in ways I don’t remember reading about with any other widespread virus, so we probably have some ugly surprises ahead.
We do know some people who survive COVID-19 don’t fully “get over it.” Mainstream media has barely begun to mention it, looking at it from the viewpoint of how awful it is for the afflicted. I’ve been watching it for weeks. We have ripple effects coming that society is not ready to handle.
Let’s begin there. Let’s also look at both of my countries, the USA and UK.
What Are Long-haulers?
Of course the early medical focus in this pandemic has been on survival, but there are now enough people sick with COVID-19 for the long term to be drawing some notice.
They call themselves long-haulers. Months after surviving their initial bout with COVID-19, they still experience substantial symptoms to such an extent that it is as though the disease is still active.
There are so many of them, they have formed online support groups divided into 30 day, 60 day, 90 day, etc subgroups. We don’t have definitive data yet about how many people are long-haulers. It looks like it could be 5% of those who got sick enough to be noticed, one out of 20.
Their symptoms are not steady. They can spike a fever, have immense COVID-induced fatigue most or all of the time, have neurological deficits, get intense headaches, endure significant pain… and on and on, any of the symptoms of COVID-19 in a devastating ever-changing mix.
In many respects the most similar other well known illnesses are Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS, which often includes a comparable fever), Fibromyalgia (FM) or Complex Regional Pain Syndrome.
That’s a disturbing parallel for many reasons. Those illnesses are often dismissed by doctors as “all in your head” even though severe cases are debilitating and in some instances can be fatal. Historically, illnesses with vague constellations of symptoms that are not easily cured have tended to be regarded this way by Western medicine, even when disabling. Causation is not clear. None of those illnesses has a cure. Treatments only aim to ease symptoms. Funding for research into this set of diseases tends to be sparse.
In other words, something more or less similar to long-haulers is not new. If we had delved into it and learned more about what’s happening in those diseases, it might allow us to treat long-haulers. But we didn’t, so we don’t understand what’s happening and don’t know how to help.
Future Impact of Long-Haulers
What is going to spin out from the fact that we have a growing population of COVID long-haulers?
- For employers… some employees who are no longer able to work.
- For doctors… a slew of long term patients whose treatments have to be quick whack-a-mole responses whenever an especially dangerous symptom decides to flare up.
- For home health care… a slew of long term patients needing help with activities of daily living, many of whom would not have needed help until decades from now if they hadn’t become long-haulers. Bear in mind, right now nobody even knows whether long-haulers are still contagious, so home health care workers will need to use full PPE and infection control protocols every time they see a long-hauler. That’s something they didn’t need to do with most of their clients before the pandemic.
- For the patients… a hell of a lot of misery. They’ve been through a few months of it already and nobody knows how long it will continue. It might be for the rest of their lives.
That may sound like a lot already, but we aren’t finished yet. We have barely given a passing glance to budgets and resources.
Country-Specific Variations
If they are in the USA…
When they lose their jobs because they are unable to work any more, they will discover there isn’t much of a safety net. Not many people carry long term disability insurance to replace at least some of their lost income. Without it, the quickest hope would ordinarily be to collect unemployment benefits if possible. But that is likely to require actively seeking a new job, which isn’t possible when fighting COVID symptoms all the time (optimistically assuming long-haulers aren’t contagious).
People too disabled to work, too young to collect Social Security retirement benefits, and not covered by private disability insurance usually file a claim for Social Security Disability Insurance or Supplemental Security Income, whichever is appropriate. The rub is that it takes time. On average, almost four out of ten applicants gets a decision in the initial application in three months or less, but another almost four out of ten get the initial decision after more than six months.
That doesn’t mean they’ll start getting benefits then. Claimants with illnesses that present like the parallel illnesses we’ve mentioned are often turned down in the initial decision and have to go through an arduous appeals process. I personally know several people who had to escalate all the way to a hearing with a disability judge. That’s typically one to two years. Even then, there is no guarantee the claim will succeed. To reach the judicial hearing, the claimants I know had to engage a lawyer on a contingency basis. That means if the claim succeeds with the judge, a hefty percentage of the catch-up payment goes to pay the lawyer.
Support during all of that time is a patchwork quilt with a lot of holes. Sofa-surfing and the kindness of friends were common for my friends during that long wait. Who will take in a long-hauler?
Upon losing their jobs, long-haulers will lose any company-sponsored health care coverage they’ve had. All their health care options from that point on depend on either having plenty of money or having access to a government supported fall-through such as the Affordable Care Act or Medicaid, both of which the GOP is currently striving to eliminate or cut back.
Speaking of having a lot of money, those who don’t have ample savings face losing all manner of things, including their homes. They may need to apply to the Housing Choice Voucher Program (Section 8) for help renting a place to live. That can also take ages. I used to rent apartments to Section 8 tenants and the waiting list in my area was about two years long.
If they are in the UK…
No worries about losing access to health care. They’ve got the National Health Service. But the NHS was stretched before the pandemic hit. Now, as in some other countries, an exodus of doctors leaving practice is expected before the next wave of COVID-19. The NHS will not be able to lavish attention on anyone. Health care will have to remain stripped back to only what is most urgent and important until whenever the system catches up, which could take years.
A lot of things are in flux in the UK. That began before Brexit. Austerity put an especially hard squeeze on supportive benefit payments for disabled people. The new Universal Credit benefits system typically waits five weeks before starting to provide payment. That contributed to a huge increase in resorting to food banks even before the pandemic, and of course the pandemic increased demand further.
Council housing, which has much lower rents than private rental housing, has insufficient stock and long waiting lists.
Despite such problems, there are fewer gaps in the benefits system for people to fall through and the delays before payments begin are a fraction of what it takes to collect SSDI/SSI in the States.
Adult social care (the British term for home health care for adults) is currently provided separately from the NHS. A minimal amount is provided for people who need help with activities of daily living. Patients can make private arrangements for more extensive services at their own expense. But (there’s always a “but”) resources were stretched before the pandemic and now that’s worse on two counts.
First, it’s a stressful low-paying job heavily staffed with immigrants who are being driven out by the government’s “hostile environment” policy toward immigrants, and a hard Brexit will cut off that workforce.
Second, it’s funded by local Councils. They simply don’t have enough money. Before the pandemic, adult social care generally took about half of each Council budget. Central government has been turning off its portion of funding to Councils. Some Councils were able to maintain services through becoming more efficient, but in the past three or four years that reached its limit. They’ve been stopping services that aren’t legally required and many have no more of those to stop. The Councils aren’t allowed to increase their tax rates enough to make up the difference and other ways of getting new revenue are constrained.
So far, central government has dealt with the pandemic’s extra squeeze on Councils by sending them a one-time tranche of money. Adding more need for adult social services will force a reckoning.
Ripple Effects
By now we are beginning to glimpse how far the ripple effects of long-haulers will reach through society.
Thousands of people are going from able to work and take care of themselves to being unable to work. Many of them may need help with basic self-care. They’ll need extra medical help on a long term basis.
As a society, in both countries we have been dealing with people who have comparable chronic illnesses mostly by dismissing them out of sight and out of mind. There are few enough of them. They are not strong enough to put up much of a fight about it. What energy they have is entirely consumed by just getting through each day.
So far, long-haulers report being dealt with similarly. But they are not turning up at a slow pace like the others. They are turning up in a relatively short period of time, a tidal wave of people who are very sick with no relief in sight. Some can still do something productive, just as Stephen Hawking (with ALS) did for physics and Laura Hillenbrand (with CFS) did with her books, but they can only have a chance to try if they have the support they need.
If we have one of them for every 19 other people who survive a substantial bout of COVID-19, there will be a lot of them. There will be too many to ignore. Even though they are too sick to advocate for themselves, a very large proportion of us will know at least one long-hauler. They will need the rest of us to advocate for them.
Our current systems are not set up to cope with them. We’ve got to think of better ways.
The alternatives are to either spend a huge amount of money and dedicate a huge amount of effort to fold them into our current systems, or (unthinkable in a civilized society) shove them onto the street to die.
Governments are still responding to the immediate crisis. It’s up to us to look ahead, make plans, and start putting together a better solution for the long-haulers… and, while we’re at it, for all the other chronically ill people in a similar pickle.
Click here for an overview about long-haulers in The Atlantic magazine
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