Long haul COVID patients and their conditions

 The Washington Post looked at the situation for people who have long haul COVID-related symptoms such as brain fog and severe fatigue. About 750,000 to 1.3 million people are estimated to affected. Another  50 million have experienced some of these symptoms after a COVID infection to be able to return to work and a fairly normal life Research has begun to understand what causes the various symptoms and how to treat them. There is not much understanding at present about causes and treatments. One tragedy is that many of the people who are long haulers have lost their jobs first and then their health insurance, leaving them unable to afford whatever limited health care there is. Most of these people are hopelessly adrift in society. A few have fallen into poverty and homelessness.

At present, new cases of long haul are coming mostly from unvaccinated people, adding to the social and economic cost of a personal refusal to get vaccinated. The WaPo writes:

Long covid is testing not just the medical system, but also government safety nets that are not well suited to identifying and supporting people with a newly emerging chronic disease that has no established diagnostic or treatment plan. Insurers are denying coverage for some tests, the public disability system is hesitant to approve many claims, and even people with long-term disability insurance say they are struggling to get benefits.

“They are suffering in dramatic ways, and in ways that have altered their lives and placed them in financial peril,” said Harlan Krumholz, a cardiologist and scientist at Yale University and Yale New Haven Hospital.

Depression and anxiety that are part of the brutal mix of long covid symptoms are exacerbated by despair over vanishing income. 

Often referred to as “long haulers,” they experience mild symptoms to begin with, then get stuck with months of chronic fatigue, shortness of breath, confusion and memory loss, erratic and racing heartbeats, radical spikes in blood pressure, painful rashes, shooting pains and gastrointestinal problems.

The government calls it post-acute sequelae of SARS-CoV-2, or PASC. The National Institutes of Health is spending $1.15 billion to study the syndrome. The symptoms sometimes subside, lulling long haulers into a false sense of relief, only to come roaring back after performing simple chores like vacuuming a living room or raking leaves.

Even for those who do have insurance, treating long covid can be unusually complicated and costly, since it’s a new disease without an established diagnostic or treatment plan and coverage for certain tests may be denied.

Health insurance companies, citing the blizzard of tests being ordered, say they are waiting for data-driven protocols to emerge so they can match insurance coverage with the best testing and treatment strategies for long covid.

The cognitive and emotional impacts also make it difficult for patients to navigate the bureaucratic tangles required to keep health insurance and file disability claims after a job loss.

John Buccellato, 64, an emergency medicine doctor at an urgent care clinic on Manhattan’s Upper East Side, was hospitalized with the virus in March 2020, in the same hospital where his mother died of covid.

In a matter of days, he went from treating patients at a busy clinic to being engulfed in a health crisis as covid attacked his lungs and vascular system. Severe cognitive and emotional strain left him unable to manage his day-to-day affairs.

Overwhelmed by brain fog and the sense of loss over his career, he frequently sobbed on the phone as he described his struggles in an interview, including the loss of his employer-sponsored insurance.

Buccellato said he has tens of thousands of dollars in unpaid medical bills that accumulated when he first lost his health insurance. He has some property and savings, but no weekly cash flow, he said. He signed up for COBRA, which provides a continuation of health insurance after a job loss, but after congressionally approved waivers that made it free expired in September, it now costs $922 a month, he said.

Buccellato said he recognizes his career is prematurely over, but he can’t figure out how to dig himself out of his worsening financial predicament. A lawyer helped him file a disability claim with the Social Security Administration, which a member of his support team said was recently successful. Because he left work for medical reasons, he was not eligible for unemployment insurance.  

Patients, advocates and lawyers said private disability insurers, which offer long-term disability coverage through employee benefit plans, have also been denying many claims.

The WaPo goes on to point out that patients who apply for disability insurance benefits are initially denied and require lengthy appeals, partly because the medical community is still unable to diagnose the symptoms. The Social Security Administration has received 16,000 covid-related disability claims since December 2020, but it refuses to disclose how many of those were approved. Once again, secrecy shrouds government operations for unknown reasons.

And once again, the moral compass of America's for-profit health care system is on display. Profit is the sole moral value. Human life comes in a distant 2nd or 3rd, or maybe 4th behind whatever other factor(s) drives our grossly expensive, needlessly blindingly complex, opaque health care system. As time passes and the influence of radical right conservatism clamps down harder and harder on average Americans, the situation for most people will probably continue to deteriorate. 

It will be interesting to see how this aspect of the pandemic plays out and what the social and economic cost will amount to, assuming the COVID pandemic ever ends.

Questions: 

1. Given the cost, is America's health care system (i) probably more concerned with profit than human life and/or (ii) too complex and opaque?  

2. Should COVID long haulers who had the opportunity to get vaccinated but refused always be treated just like all other patients, i.e., first come, first served? Or do they not deserve priority when it crowds out similar care to other kinds of patients because the local health care system is overloaded?