A group of researchers, clinicians, health policy experts, journalists, patient and disability organizations, community organizations, and research organizations appealed in an open letter today to President Biden to increase spending on, and commitment to, the problem of Long Covid.
The appeal asked not only for a budget commitment, but also for public health measures and for Biden to address the significance of the issue, and his plans to address it, by raising it in his State of the Union address.
“As you have said, ‘budgets are statements of values,'” the appeal said. “Please value the lives of the tens of millions of people with Long Covid and [infection-associated chronic conditions], as well as those at higher risk of developing these conditions, by including their needs in your budget priorities for FY25 and draft your State of the Union address.”
Long Covid can have devastating impacts on individuals, on quality of life, on caregivers and families, and on communities, the letter says:
“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. 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.”
The administration’s current steps are not sufficient — establishing the Office of Long Covid Research and Practice, and creating a federal advisory committee on Long Covid — are encouraging, but not enough to address the crisis, the letter says. The $1.15 billion in NIH research funding for Long COVID that was allocated in 2021 is running out, the letter says.
“NIH budgets have been silent on future funding for Long Covid research, despite calls for an investment of at least $1 billion/year. We need a much more robust and sustained investment to ensure that we build upon the momentum of the scientific progress made over the last four years. Additionally, while patients with Long Covid await FDA-approved treatments, many do not have access to high-quality care and fall through cracks in the social safety net, which has long neglected disabled people.”
The letter also asks for more public health education on Long Covid, provider education on Long Covid, and for mitigation efforts like better ventilation in buildings to keep people from getting Covid in the first place.
Signers include include Ezekiel Emanuel, a health policy expert, former Obama advisor, and Biden Transition Covid Task Force member; Bob Wachter, chair of the department of medicine at the University of California, San Francisco; researchers like Akiko Iwasaki, Ziyad Al-Aly, Eric Topol, and David Putrino; the Center for Economic and Policy Research; and advocacy groups like Long Covid Justice, LONG Covid Families, BIPOC Equity Agency, Black Covid-19 Survivors Alliance, Inc., The Black Long Covid Experience, Disability Rights California, Covid-19 Longhauler Advocacy Project, Dysautonomia International, #MEAction, and the Patient-Led Research Collaborative.
