Benjamin Mateus
“The Academy shall, whenever called upon by any Department of the Government, investigate, examine, experiment, and report upon any subject of science or art …” March 3, 1863, signed by then President Abraham Lincoln
In August 2022, the Social Security Administration (SSA) charged the Health and Medicine Division of the National Academies of Science, Engineering and Medicine (the actual name of the institution popularly known as the National Academy of Sciences, NAS) to convene a committee of experts to review the chronic health impact related to infections with SARS-COV-2, the virus that causes the disease COVID-19.
In the statement of tasks, the SSA wrote that the Academy “will review the evidence regarding long-term disability that may result from COVID-19 illness and produce a report addressing the current status of the diagnosis, treatment, and prognosis of related disabilities based on published evidence (to the extent possible) and professional judgment (where evidence is lacking).”
However, the SSA specifically requested “the committee’s conclusions regarding best practices for assessing disability in these populations,” but to “make no recommendations.” This has profound implications for the millions of people who continue to struggle, filing disability claims that are frequently rejected.
A USA Today report from last year found, “Although the federal government has said that Long COVID can be considered a disability under the Americans with Disabilities Act, the health care system doesn’t have a clear way to diagnose it. There is no single test to identify Long COVID, and not having a positive test of the initial COVID infection can be a barrier to qualifying for disability, long haulers say.”
How the SSA defines a disability makes it nearly impossible for Long COVID sufferers, whose illness may wax and wane or manifest different symptoms, to qualify for benefits. The condition must last at least a year and the government only pays out five months after they deem a person is qualified, which can be an eternity for those who can no longer work or care for themselves. Delays and denials of benefits are further exacerbated by a healthcare system poorly equipped to order appropriate tests and adequately document evidence of Long COVID in patients.
Almost two years later, after extensive discussions and exhaustive research into every facet of the multisystem disorder and high-level interviews with several established experts in the burgeoning field of Long COVID, on June 5, 2024, the NAS published a 265-page report drafted by a committee of 14 doctors and researchers, meticulously detailing the chronic disability the country’s population has been exposed to as a result of the “forever COVID” policy pursued under the administrations of both Donald Trump and Joe Biden.
At present, according to the National Center for Health Statistics, 17.8 percent of US adults have experienced Long COVID, or nearly 50 million people. Since last winter’s peak in infections, the number of adults reporting Long COVID symptoms has remained stubbornly high at 6.8 percent, or around 17.6 million. In a JAMA Medical News Brief from February 14, 2024, the number of children living with post-COVID conditions, including neurological consequences like loss of smell and brain fog, as well as mental health conditions including anxiety, was estimated at about six million.
In their summary the NAS committee wrote, “Long COVID is associated with a wide range of new or worsening health conditions and encompasses more than 200 symptoms involving nearly every organ system.” Average estimates of these found that four percent can expect chronic cardiovascular health effects. About six percent develop neurological and psychiatric symptoms, six percent may have gastrointestinal disorders and up to four percent experience pulmonary issues.
Fatigue remains the dominant symptom, affecting upwards to three-quarters of those with Long COVID. Post-exertional malaise, or fatigue after minor physical or mental exertion, is insidious and may impact a significant majority of long haulers. They are unable to exercise, work or return to their daily activities.
Cognitive impairments mean that those affected do not have the ability to think normally. They can’t recall information easily, process information or pay attention, or problem-solve and use executive functions to multitask. There are also conditions under the heading of autonomic dysfunction, which means problems like brain fog, lightheadedness and rapid heart rates.
However, the NAS report acknowledged there are no consensus-based diagnostic criteria for Long COVID because of the multisystem nature of the disease. Additionally, the study makes the critical point that due to the nature of testing in the US, sole reliance by healthcare and insurance companies on a documented history of SARS-CoV-2 infection when considering the diagnosis of Long COVID will miss many people. The scientific understanding, however, is that “the presence of signs and symptoms and self-reported prior infection are generally considered sufficient to establish a diagnosis of SARS-CoV-2 infection.”
The report also stated that the severity of Long COVID increases with the severity of the acute phase of the infection. According to their research, the committee said, “People whose infection was sufficiently severe to necessitate hospitalizations are two to three times more likely to experience Long COVID than are those who were not hospitalized, and among those who were hospitalized, individuals requiring life support in the intensive care unit may be twice as likely to experience Long COVID.” They then noted, “However people with mild disease can also develop Long COVID and given the much higher number of people with mild versus severe disease, they make up the great majority of people with Long COVID.”
Other factors exacerbating Long COVID severity, the study noted, include being female, lack of vaccination, baseline disability or chronic health conditions, and smoking. But in their investigation, given the SSA’s current Listing of Impairments, the NAS investigators concluded, “[Most] individuals with Long COVID applying for Social Security Disability benefits will do so based on health effects not covered in the Listings.”
Regarding Long COVID among children and adolescents, the committee members made the following important observation:
It is important to note that in pediatrics, because of typical development, the baseline for performance of skills is constantly changing, especially among young children. This can make deviations in their performance during Long COVID challenging to assess, and there may be a delay in recognition of any deviations (e.g., lack of developing a skill at the appropriate age).
Additionally, the duration of symptoms (e.g., 1 or 3 months) can feel very different to and have a greater impact on children compared with adults. Currently, there is a dearth of prospective and cross-sectional studies on the prevalence, risk factors, and time course and pattern of Long COVID in children. More research is needed to identify the long-term functional implications of Long COVID in children, because information from adult studies may not be directly applicable to the pediatric population.
There are as yet no approved drugs or disease-modifying treatments for Long COVID. Recently, a Reuters report on a study with 155 participants who took a 15-day course of Paxlovid versus placebo found the drug failed to reduce the Long COVID symptoms of fatigue, brain fog, shortness of breath, body aches, or cardiovascular or gastrointestinal symptoms.
Although the COVID vaccines have shown the potential to reduce the risks of Long COVID, the current policy that allows the virus to continue to re-infect millions each week only undermines these benefits. Scientific research has shown repeat infections can exacerbate Long COVID compared to a single infection. However, vaccine hesitancy, misinformation and the evisceration of public health has led to a plummeting in the uptake of vaccines by the public.
What is left then to help those with Long COVID? The NAS committee wrote, “As with other complex multisystem conditions, management of Long COVID relies on techniques for controlling symptoms and improving functional ability, such as pacing (i.e., balancing periods of activity and rest in daily life), mobility support, social support, diet modulation, pharmacological treatment of secondary health effects, cognitive behavioral therapy, and rehabilitation. Management often requires a multidisciplinary team.”
Given how heavily COVID has impacted workers, in particular low-income wage earners who faced the brunt of COVID with limited access to healthcare and subjected to strict work demands without any meaningful paid sick leave, for them the forever COVID policy also means forever Long COVID. The notion that masses of workers will be able to engage in “pacing” or have a multidisciplinary healthcare team that can care for them is laughable.
Although the population is told that their Long COVID symptoms will improve over time, recovery may stall after six to twelve months. Only 22 percent of people at six months will make a full recovery by one year. For those who don’t fully recover, some can see their symptoms continue to worsen.
These same points were underscored in the committee report. They stated, “Patients with Long COVID may encounter skepticism about their symptoms when they present in medical settings, which discourages care seeking. This is particularly true for individuals disadvantaged by their social or economic status, geographic location, or environment, and can result in preventable disparities in the burden of disease and opportunities to achieve optimal health ... Individuals with Long COVID have increased health care utilization and financial burden, which may be exacerbated if they are unable to work to gain income and or receive health insurance coverage.”
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