The most common misinformation that I hear about COVID is not “this is a hoax” or “masks don’t work” or “kids don’t get sick” or “kids don’t transmit COVID” or “this is no worse than the flu.” It is a statement that goes like this, “Opening schools must be based on decisions that balance the risks – we know that kids generally don’t get sick with this virus, but we know the risks of abuse, suicide and food insecurity if we don’t open schools.”
The problem is that while we do have a long history of understanding risks to some kids when they are not in school, school boards often convey that they have weighed these risks against the risks of COVID. They have not. I have not even heard very much discussion about COVID risks at school board meetings, and frankly, school board members don’t know what the risks of COVID are, because no one yet knows what all the risks of COVID are.
The risks of COVID are often presented as two potential outcomes – (1) you get infected and may either be asymptomatic or have a mild illness or (2) a few may get severe illness and have to be hospitalized, and some of them may die. This ignores a vast array of complications (including strokes) and long-term effects, which may be life-altering for those who get them. This group of patients is not being considered in our decision-making, our policy-making or our assessment of the costs of this pandemic relative to the impact on employers of absenteeism and loss of worker productivity, the incremental costs to their health plans or the costs related to long-term disability. And, with loss of employment, I have not seen any projections of the impact of this to state Medicaid plans or in the event of a decision by the U.S. Supreme Court to strike down the Affordable Care Act early next year (more about this at the end).
So, in this group in the middle that doesn’t get talked about, we are finding many young, previously healthy and active individuals who are describing disabling long-term effects of their COVID infection, often even though they described the infections as mild and certainly not requiring hospitalization, lasting for months, and in many cases, that have continued to persist to this point. There is even a name given to these individuals – “long-haulers.”
These patients have not yet been systematically studied, and there are challenges to understanding what is going on because not everyone had confirmed infection, many likely having been infected during the initial surge in cases when testing was difficult to obtain or when they had symptoms that were not on our early symptom lists having only been recognized later. Further, many of these patients do not have positive antibody tests either, which we know happens in some cases of infection, and perhaps has some relationship to the symptoms these patients are experiencing. Interestingly, in a study of 1,400 long-haulers, two-thirds of those who underwent antibody testing had negative antibody tests, including some who had previously documented positive PCR tests.
The symptoms being experienced by these patients are wide-ranging, and it seems as though no two patients are alike. However, what is common to many of these patients is what they describe as a marked change compared to their “pre-COVID” status, and oftentimes quite disabling symptoms. These have included:
- Extreme fatigue, one patient describing it too exhausting to take showers. Some describe being unable to stand for long periods of time.
- Awakening with shortness of breath
- Burning sensations in the tips of their fingers and/or toes
- Discomfort with taking a deep breath
- Hair loss
- Hand tremors
- Headaches – often throbbing
- Heavy menstrual periods or loss of menstrual periods
- Memory loss – “brain fog”- a combination of short-term memory loss and inability to focus
- Night sweats
- Palpitations, tachycardia
- Persistent fevers
- Sensitivity to light and/or sound
- Shortness of breath, getting winded walking up stairs
- Tendency towards bruising
Some patients have reported that their symptoms are resolving, while others continue to be plagued by them. It is hard to know exactly how many people have been affected by these “post-COVID” symptoms because there is no standard definition for their condition and no central repository for reporting of these conditions, but it is believed that this disorder affects more than 90,000 people in almost 100 countries, including the US, UK, India, France, Finland, Senegal, and South Africa. Some suggest about ten percent of those infected with COVID will develop long-term effects.
Interestingly, while most people consider those in their 30s and 40s to be of “low risk” for severe COVID and death, the average age of these long-haulers has been 38, and while men tend to have worse outcomes and more severe illness with COVID infection, these long-haulers have been mostly women.
NYC’s Mount Sinai Hospital is one of the first hospitals in the country to establish a post-COVID clinic. They have reported seeing this predominance in women and the average age of their patients was reported as 44. Dr. Putrino, who runs this clinic, has indicated that many long-haulers have symptoms that resemble dysautonomia, an umbrella term for disorders that disturb the autonomic nervous system, which controls bodily functions such as breathing, blood pressure, heart rate and digestion. It remains unclear whether the virus itself causes damage that results in these long-term effects, or whether these long-term consequences are a result of an over-active or exaggerated immune response, despite the failure to develop an antibody response or the loss of antibodies once produced.
More than 90 percent of long-haulers whom Putrino has worked withalso have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,” Putrino said. This is the defining symptom of myalgic encephalomyelitis, or chronic fatigue syndrome.
The CDC has had little to say on this subject, but it acknowledges that 35% of COVID patients, even those with mild illness, do not recover even after 3 weeks.
There are few clinical studies on these patients. Here are results of some of the few studies that have been done.
- One report is from patients themselves. A patient-led research team of 640 patients reported their own characteristics at https://static1.squarespace.com/static/5e8b5f63562c031c16e36a93/t/5f25b5bfb3f4f86b1bf4d5f5/1596306894541/2020+Survivor+Corps+COVID-19+%27Long+Hauler%27+Symptoms+Survey+Report+%28revised+July+25.1%29.pdf
The most common symptoms reported were (in descending order) fatigue, muscle or body aches, shortness of breath or difficulty breathing, difficulty concentrating or focusing, inability to exercise or be active and headaches.
2. Study out of Germany https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916
This study examined the cardiac MRIs of 100 people who had recovered from Covid-19 and compared them to heart images from 100 people who were similar but not infected with the virus. The average age of the study group was 49 and two-thirds of the patients had mild illness and recovered at home, while 33 percent were hospitalized. More than two months later (median time interval from diagnosis with infection to the MRI evaluation was 79 days), infected patients were more likely to have troubling cardiac signs than people in the control group: 78 patients showed structural changes to their hearts, 76 had evidence of a substance in their blood signaling cardiac injury typically found after a heart attack, and 60 had signs of ongoing inflammation of their heart muscle.
3. Italian study https://jamanetwork.com/journals/jama/fullarticle/2768351
87.4% of hospitalized patients (mean age 56.5 years) still had at least one symptom, and often a variety of symptoms, after two months since the onset of their initial symptoms of infection. The most common symptoms were fatigue and shortness of breath.
4. A researcher from the Indiana University School of Medicine in July surveyed 1,500 long-haulers from Survivor Corps, an online COVID-19 support group. They reported almost 100 distinct symptoms, from anxiety and fatigue to muscle cramps and breathing problems.
5. Cases of type 1 diabetes among children in a small UK study almost doubled during the peak of Britain’s COVID-19 epidemic, suggesting a possible link between the two diseases that needs more investigation. Thirty children in hospitals across north-west London presented with new-onset type 1 diabetes during the peak of the pandemic, approximately double the number of cases typically seen in this period in previous years, with clusters of cases in two of these hospitals. Twenty-one children were tested for Cobid-19 or had antibody tests to see whether they had previously been exposed to the virus. In total, five children tested positive, either for active Covid-19 infection or previous exposure to the virus. However, antibody testing was not routine, and fourteen children were not tested for previous exposure to Covid-19. At the height of the outbreak in the UK, testing was not widely available and many of the children were not able to be tested during the time they may have been infected.
Karen Logan at Imperial College Healthcare NHS Trust and supervising author of the study, said: “It appears that children are at low risk of developing serious cases of Covid-19. However, we do need to consider potential health complications following exposure to the virus in children. Our analysis shows that during the peak of the pandemic the number of new cases of type 1 diabetes in children was unusually high in two of the hospitals in north west London compared to previous years, and when we investigated further, some of these children had active coronavirus or had previously been exposed to the virus.”
- British study https://www.medrxiv.org/content/medrxiv/early/2020/08/14/2020.08.12.20173526.full.pdf
- CDC https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm?s_cid=mm6930e1_w
There are several points that I want to close with.
- We have only begun to understand the long-term effects of COVID infection. In some, they may be annoying, in others they are debilitating, and in others, they may be life-threatening (e.g., insulin-dependent diabetes, if this is proven to indeed be a consequence of COVID infection). Some people appear to recover over a few months, others continue to be plagued by these effects nearly half a year since their likely infection. There is much we don’t know. Why do some people recover quickly, yet others have lingering symptoms? Who is at risk for developing prolonged effects from their COVID infection? Do these symptoms eventually resolve, or will there be some who are plagued by these symptoms or disabilities for the remainder of their lives? Are there treatments that can improve their wellbeing? What happens to these individuals if they were to become re-infected? Do they have more or less risk than others of becoming re-infected?
- School boards and public health boards have, for the most part, not paid enough attention to these long-term effects of COVID as risks when they balance the risks of opening vs. not reopening schools for in-person classes, and even more importantly in decisions as to whether to hold athletic events or not.
- We have not yet begun to contemplate the implications of these long-term sequelae on society. Will long-haulers impact workplace absenteeism and productivity? Given that some long-haulers are reporting changes to their menstrual cycles, will this impact the ability to conceive? Will long-term disability result in an increase in behavioral health issues such as anxiety, depression or even suicide? What will be the costs of caring for these individuals over the long-term? And, as I have said on many occasions and written on others, this is particularly concerning at a time when the Affordable Care Act is being challenged in the U.S. Supreme Court this fall with the request that the Court strike the law down. As far as we know, Republicans have no back-up health plan that they believe can be passed by Congress and enacted into law if the ACA is struck down.
A decision by the Court to strike the ACA down (see my earlier blog posts for a full discussion of this legal challenge) would eliminate guaranteed issue, community rating, Medicaid expansion and the public insurance exchanges, along with the advance premium tax credits and subsidies. So, if a person lost their job and with it their health insurance, they would have two possible alternatives to get insurance – Medicaid and the public insurance exchanges with the assistance of financial assistance from the government. However, if the ACA is struck down, there is no Medicaid expansion and the public insurance exchanges will be gone. If the person is able to purchase insurance on their own, without the restrictions of the ACA, an insurer could deny coverage for someone who has been infected with COVID as a preexisting condition, or if they were to offer coverage, they could do so by increasing the premium significantly.
There are many implications of post-COVID effects, and we don’t understand what most of them are yet. This is an area that requires much more time to see what develops and what the answers are to the questions I posed above, more research, and is just one of the reasons we all need to pay attention to the Supreme Court decision that likely will come out in the first part of next year.