"As a collection of clinicians, researchers, health policy experts, NIH RECOVER PIs, journalists, patient and disability organizations, community organizations, and research organizations, we write to urge you to address the crisis of Long COVID and other infection-associated chronic conditions1 as you establish priorities in the FY25 budget.
#longcovid is an infection-associated chronic condition (IACC) that can develop following a #covid19 infection, and has devastating impacts - on people’s individual health and quality of life, on caregivers and families, and on communities. According to the Centers for Disease Control and Prevention (CDC), at least 5.3% of American adults were experiencing Long COVID as of October 2023 and at least 1.3% of American children ever had Long COVID as of 2022.2 While Long COVID can affect anyone (including people who are vaccinated against COVID), transgender people, women, Hispanics/Latinos, and people with a pre-existing disability are disproportionately impacted. Recovery rates are dismal: of patients sick at 2 months, only 15% were recovered at one year, and of those, one-third subsequently relapsed. Estimates place the disease burden of Long COVID higher than that of heart disease and cancer, and there are significant impacts to people’s ability to work, with Brookings estimating in January 2022 that the disease could account for upwards of 15% of unfilled jobs.
Harvard economist David Cutler and others have estimated that the economic cost of Long COVID approaches $3.7 trillion in the first five years alone in terms of diminished quality of life, lost earnings, and medical care costs, which is equivalent to 17% of prepandemic US GDP. Meanwhile, the de Beaumont Foundation reports that while the vast
(1 Infection-associated chronic conditions (IACCs) are conditions that develop following an infection, and include Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (#MECFS), postural orthostatic tachycardia syndrome (#pots ) and other forms of #dysautonomia , chronic Lyme disease, and mast cell activation disorders.
2 These prevalence rates of Long COVID underestimate the true number of people impacted due to survey respondent bias, lack of public knowledge about Long COVID, inaccuracy of testing, and lack of access to healthcare and testing, particularly amongst Black and Indigenous communities who are underrepresented or not included in the Household Pulse Survey. Of note, meta-analyses show that about 25% of children who have COVID develop Long COVID.)
majority of physicians understand that Long COVID is a problem, only 7% are very confident diagnosing it and 4% are very confident treating it. This follows the historical neglect and underfunding of other infection-associated chronic conditions, like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, chronic Lyme disease, and #mcas"