Lost Patients of Long Covid: Why the U.S. Healthcare System Needs to Take Autoimmune Disease Seriously
As a chronic illness patient with Sjogren’s, a complex, systemic autoimmune disease that affects the entire body, I felt relieved and hopeful after I read Meghan O’Rourke’s “real-world” compelling account of her chronic illness journey in The Invisible Kingdom: Reimagining Chronic Illness. O’Rourke’s trials and tribulations are just one of many patient stories that recount the harrowing experiences of fighting an uphill healthcare battle to receive a chronic illness diagnosis.
According to the National Institutes for Health (NIH), the Office of Research on Women’s Health has named autoimmunity a major women’s health issue. The NIH reports that between 5% to 8% of the U.S. population has an autoimmune disease. Autoimmune disease is the third most common cause of chronic illness in the United States.
According to the American Autoimmune Related Diseases Association (AARDA), the average time for diagnosis is 4.5 years. Typically, patients see four doctors to receive their initial diagnosis. This time frame does not take into account the specialists that patients are referred to post-diagnosis. The Sjogren’s Foundation 2022 Patient Survey reported that more than half of survey respondents believe they had Sjogren’s symptoms dating back to early adulthood or childhood.
When patients finally receive a diagnosis, most clinicians (i.e. rheumatologists who specialize in treating AI diseases) do not understand the complexity of these diseases nor how to properly treat patients. However, the fault does not fall solely on clinicians but on vague medical school education and lack of training.
Because of delayed diagnosis, most patients are then faced with permanent systemic damage to their bodies. As a result, they are left to tackle the burdens of their mismanaged healthcare resulting in poor quality of life.
In a patient study conducted by Health Union, researchers concluded that rheumatoid arthritis (RA) patients found a severe impact on their quality of life and employment, and experienced financial hardship due to RA. 94% of the survey respondents said they cannot do as much in their daily lives as they were able to do before their RA diagnosis.
The CDC National Health Statistics Household Pulse Survey discovered that 1 in 13 adults in the U.S. (7.5%) have “long COVID” symptoms, defined as symptoms lasting three or more months after first contracting the virus and that they didn’t have prior to their COVID-19 infection. There is also a debate that long Covid could be eventually classified as a “new” autoimmune disease.
A long Covid research study reported that autoimmunity markers showed up in the bloodwork of patients with acute COVID-19. Anti-nuclear/extractable-nuclear antibodies (ANAs/ENAs) were present up to a year after severe COVID-19 disease.
My hope is that the U.S. healthcare system will finally recognize the serious public health impact of autoimmune diseases. It it time to take immediate action to better educate clinicians and researchers about the serious, systemic complexities of autoimmune diseases.
As an autoimmune disease patient with Sjogren’s, I have compassion and empathy for long Covid patients who now face the grueling task of being their own best patient advocate. Long Covid patients tackle a disjointed healthcare system that is not prepared to treat the influx of their autoimmune disease(s).
