Health insurers can run, but they can't hide: Tough long COVID coverage decisions on the horizon

When it comes to coverage of long COVID, health insurance plans know the territory. It’s the same territory they trod when making decisions about what sort of coverage they’d provide for chronic fatigue syndrome, or fibromyalgia.

Long COVID affects millions of people in the United States, according to data that the Centers for Disease Control and Prevention (CDC) released this week. But as with chronic fatigue syndrome, or fibromyalgia, the exact cause of long COVID can’t be pinned down as yet. Health insurance coverage for treatments for chronic fatigue syndrome and/or fibromyalgia has been hit or miss, depending on a particular health insurer’s policy.

While the causes, diagnostic tools and treatments for long COVID may prove elusive, the effects can’t be ignored, according to the CDC data that was gathered by the U.S. Census Bureau, Household Pulse Survey 2022. Data were collected from September 14 to September 26, 2022, via a 20-minute online survey.

Nearly 24 million adults in the U.S. currently have long COVID. Of those, between 2 million and 4 million—or about 2% of the workforce—are not working because of it, according to a report that the Brookings Institute put out in August. In addition, that data shows that long COVID cuts across demographic categories and can strike regardless of gender, race, age, or disability. But while 30% of adults who’d been previously infected with SARS-CoV-2 said that they suffer from long COVID, the percentage is higher for transgender people (21.4%), those with disabilities (22.4%), and individuals without a high school diploma (18.6%). Those who were least affected by long COVID, include those over 80 years old (6.4%), those 70 to 79 years old (8.1%), and non-Hispanic Asians (single race) (8.3%).

Meanwhile, 14.9% of people 18 to 29 years old have experienced long COVID, and 16% of those 30 to 39 years old have had it, a point that’s too often overlooked, said Kevin Kavanagh, M.D., the president and founder of the patient advocacy organization Health Watch USA.

“This underscores the reason why using deaths and hospitalizations to judge risks to the young is inappropriate because a major risk is long COVID,” Kavanagh tells Fierce Healthcare. “This also may well be true of younger children in school.”

Long COVID puts health insurers in a tough spot because while there isn’t a test for individual patients “there are several biomarkers along with changes on MRI scans on patient populations which show that this is a true disease,” Kavanagh said. “One of the main effects of COVID-19 are the biological and anatomical changes it produces. They are associated with changes in memory and concentration, as well as somebody’s personality and their psychological well-being.”

Kavanagh has long been a proponent of the necessity for vaccines, but the CDC data doesn’t have a vaccination status category. Vaccination status became something of a lightning rod during COVID-19 surges, with those who followed the CDC guidelines noting that they often had to pay (in a sense) for the emergency care and/or hospitalizations of those that hadn’t. Being vaccinated helps guard against getting long COVID, according to the CDC.

Long COVID puts providers in a tough spot as well. The Department of Health and Human Services classifies long COVID as a disability. An individual seeking to qualify for Social Security disability benefits must show proof that they have it, but no diagnostic proof as yet exists.

Two of the major organizations representing healthcare plans—America’s Health Insurance Plans and the Alliance of Community Health Plans—did not respond to requests for comment from Fierce Healthcare.

Richard Stefanacci, chief medical officer at the Jefferson College of Population Health at Thomas Jefferson University, says that there are two obvious concerns for payers: What is their financial liability for a condition they did not anticipate in their budgets? And what should diagnostic and treatment decisions be based on?

With 7.5% of the population suffering from long COVID, according to the CDC, even a small per-member, per-month price tag for diagnosis and treatment can be significant, said Stefanacci. “Understanding the size of this cost and how best to manage it is critical,” he said. “While there are similar analogs in terms of long-term effects of an illness such as Lyme disease or chronic fatigue syndrome, these conditions impact a much smaller population and have somewhat better-known management guidelines. Long COVID is a problem due to its size and unknowns regarding management... As a result, it could be extremely expensive.”

Lucy Johns, a healthcare consultant, tells Fierce Healthcare that “when it comes to coverage of long COVID, health insurance plans may insist on basing coverage on evidence and treatment options, which studies now underway should produce soon.”

State insurance commissioners must then ensure that long COVID will be covered like any other systemic disease.

“Do we have to wait for that?” Johns wonders. “We know the industry tends to drag its feet when difficult diagnoses arise…. Will ERISA plan employers put the pressure on before that?”

In the meantime, the public and healthcare professionals will need to glean all the information that they can from government agencies.

The CDC’s list for long COVID is a long one, gathered under five different categories.

General symptoms

  • Tiredness or fatigue that interferes with daily life
  • Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
  • Fever

Respiratory and heart symptoms

  • Difficulty breathing or shortness of breath
  • Cough
  • Chest pain
  • Fast-beating or pounding heart (also known as heart palpitations)

Neurological symptoms

  • Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
  • Headache
  • Sleep problems
  • Dizziness when you stand up (lightheadedness)
  • Pins-and-needles feelings
  • Change in smell or taste
  • Depression or anxiety

Digestive symptoms

  • Diarrhea
  • Stomach pain

Other symptoms

  • Joint or muscle pain
  • Rash
  • Changes in menstrual cycles