The US faces a national health challenge—the effective and equitable care of millions of individuals with long COVID. It will likely take years to understand the pathophysiology of this disorder, refine objective diagnostic criteria, and develop effective treatments. Many treatments will be tried, some based in biology, others offered by for-profit entities, with limited scientific basis. During this time, it will be difficult for individuals to sort fact from fiction, and those with financial means will pay for treatments, regardless of documented effectiveness.
Recently, the Department of Health and Human Services (HHS) Assistant Secretary for Health Rachel Levine described how the federal government is responding to long COVID. However, few of these activities directly address clinical care and the potential of disability compensation. To ensure effective and equitable care for millions of affected individuals, the US must commit to creating a National Long COVID Compensation Program (NLCCP).
A Significant Burden
Currently, the Centers for Disease Control and Prevention estimates that 150 million people in the US have had symptomatic COVID-19 illness. There are estimates that as many as 50 percent of people who have had COVID-19 still report symptoms four months following infection. But even if just 5 percent ultimately fulfill criteria for long COVID, that means 7.5 million individuals would be affected in the US. In comparison, each year in the US, approximately 1.8 million individuals are diagnosed with cancer and 1.5 million are diagnosed with diabetes.
As more contagious variants emerge and objective diagnostic criteria for long COVID are developed, we can expect the number of patients in need of care to change. Patients with the disease will have mild symptoms to substantial disability. And it will be very difficult, particularly in individuals with diseases such as diabetes, or chronic pulmonary or cardiovascular disease, to separate the symptoms of long COVID from those symptoms that evolve with other diseases.
The burden of long COVID will fall on various groups: including the health care system, which will be responsible for the critically important tasks of developing diagnostic criteria and effective treatments; many employers, both public and private, who provide disability and health insurance; and health insurers who will have to decide which treatments to cover. Private health insurers will likely pass on any increased costs to employers, and Medicaid and Medicare, which, given the potential number of patients involved, will need additional financial support.
Altogether, it is impossible to overstate the challenge, complexity, and cost of responding to a new disease that will affect millions of individuals. It will likely require billions of dollars and runs the very real risk of perpetuating persistent disparities in care, coverage, and outcomes, by race, ethnicity, income, and region.
Consider A Successful Model
In the face of this daunting challenge, the US should look to the example of a very successful national program of care. In 1986, after years of debate, Congress created the National Vaccine Injury Compensation Program (NVICP) to ensure a stable supply of vaccines, protect vaccine manufactures from liability claims, and fairly compensate individuals who had very rare medical consequences associated with vaccines.
The new law added a tax to each vaccine administered, pooled the funds, and created a system to compensate individuals injured by a vaccine. It is a no-fault system, involving both HHS and the Department of Justice (DOJ). A claimant, or a representative of the claimant, presents evidence that they have been harmed by a vaccine, medical experts in HHS determine if the claimant meets edibility criteria and the case is referred to the DOJ, and the “vaccine courts” for adjudication.
To help claimants, the program created a vaccine injury table listing which vaccines are associated with which specific injury. Since 1988, more than 5,000 claims, mostly related to the influenza vaccine, have been awarded. This program has protected manufacturers from liability claims and therefore reduced the risk of entering the market, a key step to ensuring a stable vaccine supply and spurring the development and introduction of new vaccines. Virtually every public health group acknowledges this mechanism has allowed for one of the great public health success stories in the US: very high sustained vaccination rates in all children, regardless of socioeconomic status, race, or ethnicity.
With this model in mind, the US should create the NLCCP. Several entities could contribute to such a fund, including pharmaceutical and other companies that have reaped substantial profit since the pandemic began; and health and disability insurers, who would benefit from such a program. Policy makers might also consider adding an additional tax to vaccines to fund the program.
Rather than having disability insurers process claims, many of which will likely be contentious, a group of experts—perhaps lawyers, perhaps clinical authorities, perhaps both—should be charged with determining whether individuals meet pre-specified diagnostic criteria and the corresponding award amounts. (This approach would echo that of the National Vaccine Injury Compensation Program.)
Importantly, those without disability insurance could also file claims, an option that should help minimize disparities in care and compensation. The same group of experts could also determine which treatments for long COVID should be supported by either the program or health insurers. These determinations would be based upon recommendations from professional medical groups and have the added benefit of relieving health insurers of the challenge of making these decisions.
To be sure, such a national program would face challenges.
First, it may be difficult to define long COVID using objective criteria. Yet, relying only on subjective criteria will dramatically increase the difficulty of differentiating long COVID symptoms from underlying physical and mental disease.
Second, millions of people are likely to need access to the program. It will be important to create an administrative structure that ensures access for all individuals, regardless of their technical and electronic expertise.
Third, all individuals in the US should be eligible for the program not just those with health or disability insurance or those who have been vaccinated. Otherwise, substantial disparities in care and compensation will be embedded in the program itself.
Fourth, as with any national program, adequate funding will have to be identified. I propose a number of sources above and when combined, they could provide the necessary support while generating broad political support. Fifth, policy makers will have to tailor this program to meet the specific needs around long COVID. In addition to following the NVICP model of care, they may also look to Medicare’s end-stage renal disease program and the Ryan White AIDS Program.
In caring for and supporting the millions of individuals who have or will develop disabilities from long COVID, the US faces a monumental task. Without a national program, it is likely that individuals will not receive the care they need, disparities in care will inevitably develop, patients will be exposed to ineffective treatments, and staggering costs will be passed on to employers and state and federal governments. Only by creating a coordinated, national program, can we ensure an effective and equitable system of care for patients with long COVID.