Healthcare Costs, Patient Care Access Challenges Folks with Long COVID

The one in five adults who have experienced long COVID also have trouble with other aspects of healthcare, with new Urban Institute findings indicating issues with healthcare costs and patient care access, researchers wrote in JAMA Network Open.

Particularly, people who have had long COVID are more likely to face high healthcare costs, finding clinicians who are accepting new patients, getting a timely appointment, and getting health plan prior authorization approval. These issues could make it more difficult for individuals to take care of themselves and their healthcare needs when managing long COVID, the researchers posited.

Long COVID, widely called post-COVID-19 condition or PCC, is the experience of COVID-19 symptoms long after the infection has subsided. PCC may become an emerging chronic health condition as medical experts work to get a handle on how many people have it and the impact it has on their everyday lives.

This latest Urban Institute study looked particularly at the experience or potential experience of folks with PCC interacting with the US healthcare system.

“The experiences of patients with similar and overlapping conditions, such as myalgic encephalomyelitis/chronic fatigue syndrome, suggest that US patients with PCC may experience difficulties navigating a fragmented health care system,” the researchers wrote. “The consequences associated with unmet medical needs may include exacerbated risk of disability and reduced health-related quality of life. Access to timely and effective treatment may be especially important for maintaining employment.”

Those predictions are slated to come true, according to survey data about nearly 10,000 US adults. The survey included both people who have had COVID-19 and who have not, as well as a mixture of folks self-reporting long COVID symptoms.

Around one in five people who reported ever having COVID-19 said they also currently have PCC. And with that PCC diagnosis comes a myriad of healthcare problems, the survey showed.

Compared to both people who have never had COVID-19 and people who have had it but do not have PCC, those with long COVID are more likely to report issues navigating the US healthcare industry.

For example, around a quarter said they struggle with healthcare costs. This is somewhat comparable to those who have had COVID but outpaces those who have never had COVID (17 percent).

Moreover, those with PCC were more likely to have trouble finding a clinician who is accepting new patients, with 16 percent saying as much. That compares to 10 percent of people in both the only-COVID and never-COVID buckets.

“Although most adults with PCC had a usual source of care, some may have had trouble finding clinicians who were knowledgeable about and responsive to their conditions,” the Urban Institute researchers explained. “In addition, some patients may not have been aware of or had access to a multidisciplinary PCC clinic.”

And even if PCC patients can find a provider, they can’t get an appointment in a timely manner. One in five said they can’t get a timely appointment, while around 14 percent of people who do not have PCC and who have never had COVID reported the same.

And it’s not just challenges with the healthcare provider; 16.6 percent of people with PCC said they have trouble getting health plan care authorization, compared to 10.8 and 10.3 percent of those without PCC and who have never had COVID, respectively.

“Insurance-related barriers may also reflect limited evidence to inform standards of care,” the researchers noted. “Insurers may deny reimbursement for tests and procedures that they do not consider medically necessary. Prior authorization and other use-management practices may also be associated with claim denials and other administrative burdens for patients.”

“Insurance regulators and self-insured employers may potentially set standards for these practices to reduce delays in access to tests and treatments,” they recommended.

These findings come as the US works to understand the profile of those who have long COVID or PCC. Although this Urban Institute did not report on those characteristics, a separate study from the NIH found that Black and Hispanic people are more likely to report long COVID symptoms than their White counterparts, but that White people are more likely to report a documented PCC diagnosis.

“It’s not clear what's behind these symptom variations,” Dhruv Khullar, MD, a study author for the NIH data, physician, and assistant professor of health policy and economics at Weill Cornell Medicine, stated publicly. “We hope this work draws attention to possible differences across racial and ethnic groups, stimulates research into the potential mechanisms, and sparks discussion among patients, clinicians, and policymakers.”