As we approach the one-year mark for our country’s lockdown due to the COVID-19 pandemic, we recognize that the medical community has worked tirelessly to provide care for those who have contracted the disease and create and distribute a vaccine. Now we, the general public, are being made aware of a new medical condition that is coming out of this COVID-19 pandemic. As early as the summer of 2020, the medical community has been dealing with and trying to help those COVID-19 patients who suffer from residual symptoms of the virus months after “recovery,” the “COVID Long-haulers.” (Long-haulers)
In a recent press conference, Dr. Anthony Fauci stated that the US government was launching a nationwide initiative to study these Long-haulers. He said that the medical community even has a scientific name for this new syndrome, Post-Acute Sequelae of SARS-CoV-2. (PASC) This initiative will integrate data from existing projects on COVID-19 patients such as COVID-19 Neuro-Databank-Biobank (or the NeuroCOVID Project), a databank & biobank led by New York University. The databank will accept information on adults, children, pregnant women and their babies, which will be collected in a manner to keep the patients’ identities protected.
The residual symptoms that the Long-haulers are experiencing vary in diversity and intensity. But, interestingly, the current data points to the majority of Long-haulers to be women with an average age of 44 years, most of whom were formerly fit and healthy. The most common symptoms are fatigue, shortness of breath, fevers, gastrointestinal issues, anxiety and depression, “brain fog,” and generalized body pain.
Most people who contract and recover from COVID-19 will eventually return to relatively normal health. But, there is a population that will either take longer to recover or will never recover. At the present time, the actual percentage cannot be determined, we simply do not have enough data collected. However, some in the medical community are estimating as many as 10% of COVID-19 survivors will have persistent symptoms. The early data from Europe is suggesting the number is between 3% and 5%. Regardless of the actual percentage of COVID-19 survivors that will ultimately become Long-haulers, the number of Americans impacted will be, at the very least, in the 100s of thousands, which will certainly create a large wave of chronically disabled people in the United States.
One of the issues that are arising as we try to help, the first wave of Long-haulers who have been experiencing these symptoms for several months after surviving COVID-19 are now about to hit that one-year mark, is whether Long-haulers will qualify for disability benefits. Disability advocates and lawmakers are calling for the Social Security Administration (SSA) to get in front of this inevitable wave of chronically disabled Americans filing for Social Security Disability Insurance benefits by doing a study and updating their policies and offer guidance for applicants. Congressman John Larson, a Democrat from Connecticut, along with another member of Congress wrote to the SSA asking them to partner with scientists and get in front of this issue.
As someone who works with persons who have and are currently applying for disability, it has been my experience that the process to obtain permanent disability benefits from SSA is a long and difficult one. The three primary questions that need to be proven are: 1. Do you have a medically determinable disease/disability; 2. is there evidence that the disease/disability affects your ability to perform substantial gainful activity (full-time work) and 3. Has this disability lasted or is expected to last 12 or more months. As you can imagine this will be challenging, since this new syndrome, PASC, is based on the residual symptoms that only a fraction of COVID-19 survivors experience from a disease that has barely existed as a recognized disease for one year. To further complicate matters, many of those suffering from PASC who are approaching the year mark may not have been given the initial COVID-19 diagnosis, since testing of the disease was limited at the beginning of the pandemic. Add to that the fact that the SSA relies heavily on what they consider is “objective” evidence of a disability to determine whether someone is eligible for benefits. They get this “objective” evidence from medical treatment records. At present we have only about one year’s worth of “objective” evidence for the underlying disease of COVID-19, not to mention the new syndrome arising out of this new disease. The medical community has not been dealing with this syndrome long enough to even figure out protocols on treating the various symptoms or whether the syndrome is truly a permanent condition or if it can possibly be manageable through treatment.
There is still a lot more to be learned about this new syndrome and the impact on those who suffer from it. I believe that this is something that the medical community and the SSA need to actively participate in together. However, at the present, the SSA has declined to formally address COVID-19 concerns stating that they feel the current disability policy rules should be sufficient in evaluating those applicants for disability benefits filing due to COVID-19 related disabilities.
Gabrielle Emanuel, February 22, 2021, When Does COVID-19 Become A Disability? ‘Longp-Haulers’ Push For Answers And Benefits, Shots – Health News
Adriana Rodriguez, February 24, 2021, Dr. Anthony Faucci aims to answer ‘a lot of important questions’ about ‘COVID long-haulers’ in new nationwide initiative, USA Today
Ed Yong, August 19, 2020, Long-haulers Are Redefining COVID-19, Atlantic Online