Are long COVID sufferers being ignored?

Are long COVID sufferers being ignored?
Implications of COVID-19 absences for employees.
31 Mar, 2024
Dr. Prajakta Banik
Tech Explorist

Researchers looking into long-term COVID discovered that because of a lack of knowledge about the illness, people with severe symptoms are often misdiagnosed by physicians and disregarded by family members or employers. The economy and the impacted individuals and their families may suffer significantly due to this lack of acknowledgment.

Bonilla said, “I’ve been working on chronic fatigue syndrome for almost eight years; when long COVID came along, it was like déjà vu. This is nothing new. We’ve been ignoring this problem for decades — so it’s time to pay attention.”

About 1.2 million people have died from COVID-19, which is roughly 2.2% of all deaths since the pandemic began, as per the Centers for Disease Control and Prevention (CDC). The CDC believes that at least 5,000 people have died from COVID, and they’re improving how they count these deaths by introducing new guidelines for reporting long-term COVID as the cause of death.

About 16 million persons of working age have long-term COVID, of whom 4 million are unable to work because of their severe symptoms. Dr. Bonilla highlights a concerning trend where some doctors suggest that patients with long COVID need more sleep, diet, and exercise, reminiscent of the early days of Chronic Fatigue Syndrome (CFS) treatment. 

Symptoms of both long-term COVID and CFS include

  • extreme fatigue,
  • difficulty concentrating,
  • chest pain,
  • coughing and breathing issues,
  • heart and stomach problems,
  • loss of taste and smell, and it increased depression and anxiety levels.

Recently, Dr. Bonilla and Dr. Gopi Shah Goda, a health economist, participated in a Stanford Health Policy Forum discussing extended COVID-19. While Dr. Bonilla is committed to providing patients with assistance and reassurance that they are not alone in their challenges, Dr. Goda is researching the economic repercussions of the syndrome.

Dr. Bonilla emphasizes the importance of validating patients’ experiences, acknowledging their challenges, and letting them know that millions of others face similar issues. He has encountered distressing situations, such as patients losing their homes and resorting to living in their cars and couples experiencing relationship strains because one partner doubts the other’s illness.

Health economist Gopi Shah Goda has discovered that in addition to the quarter of a million working-age people who passed away from COVID-19, at least twice as many have stopped working as a result of the virus’s long-term impacts. 

According to a study by Goda published in the Journal of Public Economics, the average wage loss per person due to extended COVID-19 is estimated to be $9,000, translating into a $62 billion yearly loss of labor supply. This is about half of the predicted production losses from illnesses like diabetes or cancer, funded much more than long-term COVID-19.

Long COVID has had a significant influence, yet research still needs to be well-financed. The U.S. Department of Health and Human Services awarded Stanford’s long-running COVID clinic a $1 million annual five-year grant to expand access to care, especially for underprivileged populations. The clinic opened in May 2021. 

However, many COVID-19 patients continue to go unnoticed because medical professionals find it difficult to categorize their conditions, which could result in lost disability insurance payments. With the COVID-19 public health emergency ending in May 2023 and the isolation guidelines recently lifted, experts like Goda and Bonilla are worried about how vulnerable employees may be if safety procedures are taken less seriously, particularly those without paid leave.

According to experts, within 90 to 180 days following their first infection, 37% of those who survived COVID-19 report having at least one prolonged COVID symptom. As with chronic fatigue syndrome, there are no approved treatments or specific diagnostics for prolonged COVID-19. Nonetheless, in clinics where patients receive treatment with off-label drugs such as Abilify and low-dose naltrexone, some encouraging results have been noted.

Efforts to raise awareness about the necessity for further research and potential cures are underway, such as the annual Long COVID Awareness Day on March 15 and initiatives like the NIH’s CureID research program, aiming to involve long COVID patients in research. 

Moreover, the U.S. Senate Committee on Health, Education, Labor, and Pensions held a hearing in January, led by Senator Bernie Sanders, acknowledging the seriousness of long COVID and the need for more congressional action to address it. 

Among other people, Gopi Shah Goda has stressed the significance of implementing mitigation policies and programs to help impacted people stay in the workforce. She did this by presenting a testimony to the committee.