For those who have struggled to obtain a diagnosis for chronic illnesses such as chronic fatigue syndrome/myalgic encephalomyelitis or endometriosis, a familiar process is now playing out for a large portion of the population who are struggling to get a long COVID-19 diagnosis.
Chronic fatigue syndrome/myalgic encephalomyelitis patients often wait up to five years for a diagnosis. The condition remains a diagnosis of exclusion, which often means patients are subjected to many time-consuming and costly tests. Endometriosis has an average diagnostic delay of seven to 10 years from the onset of symptoms. These diagnostic delays are due to a variety of factors, from outdated clinical definitions and a lack of health care provider education to complicated and prohibitive coding and referral systems. We must heed these lessons and not repeat the same mistakes when diagnosing long COVID patients.
A correct diagnosis doesn’t just give patients a name for their ailments. A correct diagnosis unlocks treatment options, eligibility for clinical trials and financial coverage through insurance. A diagnosis also allows some to seek necessary disability benefits or work accommodations from the agencies that determine benefit eligibility. A meta-analysis by the Brookings Institution suggested that long COVID may be responsible for over 1 million workers being out of the labor force at any given time. Misdiagnosis or delayed diagnosis of chronic illness is a critical public health issue.
The first challenge is to create a universal and inclusive clinical definition of long COVID and subsequent medical coding. Long COVID is presently known by several other names, including long-haul COVID, chronic COVID and post-acute sequelae of COVID-19. Yet using terms such as “post,” “chronic” or “syndrome” can cause assumptions about the underlying physiological processes associated with the condition, which still largely remain unclear.
The lack of a single name and clinical definition causes problems for epidemiological data reporting, research, policy and treatment. But this must also be balanced against the need to provide an inclusive definition that ensures that no long COVID patients are left behind.
In October 2021, long COVID was recognized with a diagnostic ICD-10 code known as U09.9 Post Covid Condition, an important step for patients who need their care and treatment to be reimbursed by insurance providers. Guidelines for use of the code state that it should be used for patients who experienced a probable or confirmed COVID-19 infection. This is an important distinction as unequal access to testing at different stages of the pandemic means that many patients may not have serological proof of SARS-CoV-2 infection.
Unfortunately, this code also excludes any potential long COVID patients who experienced an asymptomatic COVID-19 infection. It is now well understood that the severity of the initial infection has no bearing on the severity of long COVID symptoms. A recent analysis of medical records in California found that 32 percent of patients with long COVID symptoms had asymptomatic infections. This unnecessary criterion could prevent thousands of long COVID patients from accessing treatment and care. The code also needs to better represent the broad range of symptoms associated with long COVID.
The next challenge is developing screening systems and educating health care providers on the full spectrum of symptoms and experiences. The symptoms associated with long COVID continue to evolve and grow. One Lancet study lists up to 200 symptoms. In addition to collaborating with researchers and physicians to develop guidelines for diagnosis, treatment and care, the Centers for Disease Control and Prevention (CDC) and other physician groups should be working with patient advocacy groups to fully understand the barriers to care and the breadth of the patient experience living with this condition.
Health care provider education should be ongoing. Since long COVID spans so many medical specialties, we also need to break down silos that exist between different physician groups to share resources and collaborate. Only then can we create comprehensive guidance and pathways for physicians to make long COVID diagnoses.
Between 10 percent to 30 percent of COVID-19 cases are now resulting in long COVID symptoms. This growing population means that screenings for long COVID symptoms should be integrated into annual primary care checkups. In particular, cardiovascular complications from COVID-19 are becoming increasingly common. This is true even for patients without previous cardiovascular disease, comorbidities and an otherwise low risk of cardiovascular disease. We need to ensure that cardiovascular issues are picked up at the earliest possible stage to avoid severe disease.
Another complex challenge is the institutional change required for doctors to work most effectively with long COVID patients. Many physicians are heavily restricted by the amount of time they can spend with patients due to insurance reimbursements and a fee-for-service payment model. The average 15-minute primary care doctor appointment mandated by many insurance companies is barely enough time to take a medical history for a condition as complex as long COVID let alone conduct an exam and order tests or make referrals.
Long COVID care should be integrated and patient-centered and utilize a multidisciplinary team. Primary care doctors who may not have the expertise required to diagnose or care for certain long COVID patients should have a network of local specialists and treatment clinics available for referrals.
Only by addressing these challenges can we begin to move forward toward an inclusive, swift and accurate diagnosis process for long COVID patients that leaves no one behind.
William Haseltine is president of ACCESS Health International. An infectious disease expert, Haseltine was formerly a Harvard Medical School professor and founder of the university’s cancer and HIV/AIDS research departments.