LONG COVID Patients Struggle with Diagnosis and Finding Support

According to the Centers for Disease Prevention and Control, between 7.7 and 23 million people may be suffering from long COVID in the U.S. While most who get infected with the SARS-CoV-2 virus are able to overcome COVID-19 symptoms in about two weeks, a fraction of the patients (5-30%) experience lingering health problems for weeks or even months. Symptoms may include:

  • Fatigue
  • Cognitive dysfunction or brain fog
  • Shortness of breath
  • Palpitation
  • Racing of the heart

These symptoms can make it difficult for patients to work or earn a living and force them into long-term disability leave. Severe form of the disease may cause organ damage, including damage to the lungs, heart, nervous system, kidneys, and liver. 

However, long COVID is not getting the attention it requires, causing patients to face access as well as financial barriers.

Challenges With Seeking Care

Those suffering from long COVID face several challenges, starting with recognition of their symptoms with COVID-19. 

  • Both patients and providers often lack the knowledge to connect the dots between symptoms and diagnosis. Alternately, lack of insurance or being underinsured may prevent a person from seeking care. Consequence: a delayed diagnosis and treatment.
  • Misdiagnosis or a healthcare provider who dismisses symptoms. Consequence: the patient wasting money on the wrong treatment without relief or not seeking care at all due to a lack of faith in the healthcare system.
  • Significant wait times, sometimes in months, for appointments if referred to a specialist by a healthcare provider who may be reluctant to diagnose long COVID. Consequence: enduring symptoms during the wait and being denied financial or disability insurance in the absence of a diagnosis. 
  • Access issues due to need for care coordination with multiple specialists or due to distance from a long COVID clinic. Consequence: unscheduled or missed appointments or inability to get to the clinic independently without a caregiver.
  • Other barriers to receiving treatment may include long-COVID treatment being deemed medically unnecessary, lack of insurance, lack of coordinated care at the long-COVID clinic,  

Financial Burden

Severity of symptoms and lack of treatment (or effective treatment) can incapacitate patients leaving them unable to work and potentially without income. According to the COVID-19 Longhauler Advocacy Project, an estimated 44% of COVID-19 longhaulers were unable to participate in the workforce while 51% could only work parttime. This while facing an average medical cost of $36,408!

While the actual costs for the patient may vary based on the type of insurance plan, treatment in the hospital alone can prove to be very expensive. A patient who was on a ventilator for a month owed an astounding $250,000 for her care.

Here are some resources that can help support your road to recovery from long COVID:

For employees:
  • The Americans with Disabilities Act recognizes longhaulers and requires workplace accommodations for them among covered employers. 
  • Five states have piloted a return-to-work program for ill or injured workers, including those recovering from COVID-19. If you are a resident of one of these states, visit their websites:
  • Additional employment-related information is available here

Financial and insurance navigation assistance:

  • The Patient Advocate Foundation has a dedicated COVID Care and COVID Care Recovery Fund that can provide you with individualized support. 

Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience who brings her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.

Surabhi Dangi Garamella

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