Ideal Journey

Before we explore the actual experiences people with Long COVID and their caregivers have seeking treatment, let’s look at what an ideal care journey might look like.

Note: This treatment journey may not be applicable or relevant to everyone with Long COVID. If symptoms are extremely mild or are noticeably improving, a person may not require this level of care.

To begin, a person experiencing Long COVID-like symptoms schedules a visit with a health care provider (likely their primary care provider) or visits an urgent care center or emergency room.

At the appointment, the health care provider listens to and validates the experiences the person is describing, and has enough knowledge about Long COVID to elevate it as a possible cause.

The health care provider uses a set of diagnostic criteria based on patient-reported outcomes and biomarkers to diagnose the person with Long COVID. They may order other tests in the meantime to confirm the diagnosis and rule out other possibilities, but the diagnosis allows the person to more easily access Long COVID-related treatments, file for disability insurance, and request workplace accommodations.

The health care provider refers the person to the closest Long COVID clinic.

Pain Points

The ideal journey is not the care journey most, if any, people with Long COVID have currently. Each step of the way is far more complex.

A variety of other convoluted paths and pain points are typical of most care journeys. These barriers make the care journey more difficult. At each step of the way, some people may be unable to continue.

A person may be prevented from seeking out care. For example, a symptomatic child whose parents do not know about Long COVID may be unable to access care.

A person may worry about affording care due to being under- or uninsured, and choose not to seek care.

A person may not trust health care providers and choose to look towards alternative sources for information and solutions.

A person may not know about Long COVID, and instead assume symptoms are related to allergies, aging, or stress.

A health care provider who is either not versed in Long COVID and infection-associated chronic illnesses or who harbors stigma against chronic illness and COVID-19 may misdiagnose a person’s symptoms. Common misdiagnoses include anxiety and depression.

A health care provider may not believe the person and dismiss their symptoms entirely.

The health care provider may be reluctant to diagnose them with Long COVID, and instead send them to one or more specialists for further testing. Because the demand for specialists relevant to Long COVID has skyrocketed, people often endure significant wait times for appointments. A person may spend months, or even a year, waiting for a specialist appointment.

Because of inadequacies in today’s testing capabilities, testing often turns up normal results for people with Long COVID. In these instances, they may be sent to another specialist, or simply told there’s nothing wrong with them.

If the person is not referred to a Long COVID clinic but is instead referred to a range of specialists, they are on their own to coordinate, schedule, track, and travel to and from many appointments.

A Long COVID clinic may be too far from their home to be a realistic option for care.

Consequences

These barriers to care are difficult for anyone, but they are easier to overcome when a person has sufficient financial resources, time, health literacy, and extensive support networks. This unequal access to care can lead to a further increase in health disparities.

Many people are not receiving the medical attention they need.

Official statistics on the prevalence of Long COVID may be undercounts, making it more difficult to allocate resources adequately.

A person may waste time and money trying treatments and medicines that are ultimately unhelpful.

A person may lose trust and faith in their health care providers, and decide not to pursue care any longer.

A person may endure symptoms daily while they wait for their appointments.

A person is more likely to be denied financial assistance from disability insurance without a diagnosis and certifications from specialists. They may also have more difficulty requesting accommodations from their employers or schools.

After being dismissed and told there’s nothing wrong, a person might become so desperate as to try untested or even dangerous treatments.

A person may be too impaired by their Long COVID symptoms to be able to manage the care coordination process for themselves, which may lead to unscheduled or missed appointments, and ultimately, the end of receiving care.

A person may not be able to travel regularly, or travel great distances, either because of their Long COVID symptoms, or because of other life circumstances. Unless they have the assistance of a caregiver, they may be unable to access the care they need.

Quotes

“I didn’t want to go to the hospital because I didn’t have insurance. ... If I did have health insurance, I would do whatever the doctors told me. Like, ‘hey, you need to see a cardiologist.’ I would go to the cardiologist.”

—Carlos, office manager, fiancé, and person with Long COVID

“One of the doctors said, ‘Oh, this is all in his head. You know, maybe if you stop talking about, he’ll forget about it.’”

—Rebecca, therapist, mother to two children with Long COVID, and person with Long COVID

“I had already been to several doctors at this point. I went to urgent care. I went to a pulmonologist and a cardiologist a number of times. I went to a lot of different doctors and they were absolutely unresponsive. They would look at my chest. ‘X-Ray is clear. There’s nothing wrong with you.’ ‘Your EKG is fine. There’s nothing wrong with you.’ ... So, I decided to try ivermectin. The FDA and the CDC were both saying don’t take it. But I was desperate.”

—Agatha retired professor, writer, and person with Long COVID

“I’ve had to see 40 different doctors to get to the right specialists.”

—Amanda, Long COVID advocate, mother, and person with Long COVID