Help End the Long COVID Crisis (U.S. Letter)
In March 2022, the U.S. Government Accountability Office estimated that 23 million Americans had developed Long COVID. Nearly a year later, studies suggest that number could be as high as 41 million. Yet there is no cure or treatment available.
Unfortunately, vaccines do not appear to have prevented the LC crisis. Despite incomplete data about vaccinations, two recent studies from George Washington University and Harvard that looked at infections between 2020-2022 found an average of 40% prevalence of Long COVID – even in these discrete populations that had vaccine mandates. As a Long COVID community, we regularly connect with new people who have been hit with hallmark Long COVID symptoms regardless of vaccination status or severity of their SARS-CoV-2 infection.
The widespread presence of Long COVID and the lack of access to prevention, support, and treatments has already created a crisis for individuals and communities. A democratic nation cannot defend itself if its people are battling a disabling disease with no cure or treatment.
Long Covid & The Economy
Long COVID poses unprecedented risks for the country that could rival the Great Depression. According to David Cutler, an economist at Harvard University, Long COVID could cost the economy $3.7 trillion in lost wages, increased medical expenses, and reduced quality of life. In 2023, up to 4 million Americans between 18 and 65 are missing from the workplace due to Long COVID. That could equate to 15% of the current labor shortage according to a January Brookings Institution report.
The current response to Long COVID is not enough to tackle these problems. Only a few specialized clinics exist, leaving many patients on waitlists for upwards of 6 months before being assessed. Today we don’t have enough clinics, enough funding, enough education, nor enough specialists to care for the rising cases of Long COVID.
As a large and ever-growing international community, we feel government is not meeting the needs of this crisis.
We, the undersigned, demand that your political office explain what steps you are taking in response to the Long COVID crisis. Specifically, the following objectives have been prepared by LCAP and we ask that you issue a statement of response to LCAP in which you consider the following points:
LONG COVID ACTION PROJECT OBJECTIVES
Declare Long COVID a public health emergency
- On a recent visit to Yale to meet with Long COVID treating physicians and researchers, Admiral Rachel Levine, MD, assistant secretary for health in the Department of Health and Human Service (HHS), responded on the subject of the Long COVID crisis:
- “Q: First of all, do you believe that Long COVID is a public health crisis?
- "Yes, Long COVID is a very significant public health issue that we are working to address through the federal government in collaboration with the states and local health departments, as well as with academic medicine and researchers.”
- Demand regular communication updates: @WhiteHouse press conference
- Realistic and transparent Long COVID numbers are needed. This requires improved testing of SARS-CoV-2 and its new variants, as well as ensuring Long COVID sufferers have access to knowledgeable providers.
- We urgently need to make the public aware of this crisis, the risks of developing Long COVID, and the steps being taken to end the crisis.
- Specific, regular updates on progress towards the objectives below are necessary.
- Establish a permanent entity to expand and accelerate access to prevention, research, and treatment of Long COVID
- E.g. “President’s Emergency Plan for AIDS Relief, PEPFAR, is both a model and a platform that can be used right now. ‘It would be a shame not to use the PEPFAR program for greater functions. There’s just not a chronic care platform that can compete with it,’ said Thomas Bollyky, the director of the global health program at the Council on Foreign Relations.”
- Ensure sufficient social support by the following:
- Widespread education of primary care providers of Long COVID presentations and its co-diagnoses. This is key for access to symptom management, financial support, and workplace accommodations.
- People presenting with Long COVID symptoms must no longer be turned away from hospitals and medical offices with gaslighting, erroneous diagnoses of mental health or functional neurological disorders.
- Investigate how people who are too sick to earn reliable income are surviving during the years’ wait to be approved for SSDI or SSI. Devise a program to close any gaps in support. For example, make cash assistance programs sufficient to cover basic expenses, automatic when applying for SSDI/SSI, as well as available earlier when the chronically ill and disabled are still searching for knowledgeable doctors.
- Investigate how employers are treating reasonable accommodation requests. Devise strategies and/or regulations to ensure people are not penalized for their accommodation needs.
- Urgent, sufficient, and sustained progress towards ending the Long COVID crisis by:
- Sustained, sufficient funding for key research avenues as outlined by the Patient Led Research Collaborative. As each biomarker is agreed upon, testing for it must be made accessible to all patients. Disproven and harmful approaches like graded exercise therapy and cognitive behavioral therapy should not be funded, as per Long COVID Physio and the World Health Organization.
- Immediate, adequate, and sustained funding to determine the extent of viral persistence, and to develop antiviral treatments that work.
- Clean air permit standards and mandates within public schools, medical facilities, and public transit.
- A permanent hub within NIH for complex chronic conditions, including (but not limited to): Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, mast cell activation syndrome (MCAS), chronic Lyme, post viral and post bacterial conditions, as well as adverse vaccine reactions that mirror the over 200 documented Long COVID symptoms (e.g. dysautonomia, cognitive dysfunction, persistent shortness of breath, crushing fatigue, persistent inflammation, and symptoms that worsen with attempts to "push through.")
Backman, I. (2023, February 16). Admiral Rachel Levine Visits Yale’s Long COVID Experts. Yale School of Medicine. https://medicine.yale.edu/news-article/a-qanda-with-admiral-rachel-levine-on-tackling-long-covid/
Bass, E. (2022, June 4). Opinion | PEPFAR Shows What a Global Response to Covid Can Look Like. The New York Times. https://www.nytimes.com/2022/06/01/opinion/pepfar-covid.html
Davis, H. E. (2023, January 13). Long COVID: major findings, mechanisms and recommendations. Nature. https://www.nature.com/articles/s41579-022-00846-2?error=cookies_not_supported&code=3fa87faa-ff5a-4712-b22f-cc0925c22262
Reddy, S. (2022, August 25). Over Two Million Americans Aren’t Working Due to Long Covid. WSJ.https://www.wsj.com/articles/over-2-million-americans-arent-working-due-to-long-covid-says-brookings-11661364528
Science & Tech Spotlight: Long COVID. (2022, March 2). U.S. GAO. https://www.gao.gov/products/gao-22-105666
Sellers, F. S. (2022, October 13). ‘We are in trouble’: Study raises alarm about impacts of long covid. Washington Post. https://www.washingtonpost.com/health/2022/10/12/long-covid-study-scotland/
Study shows prevalence of Long Covid in a university community. publichealth.gwu.edu. (n.d.). Retrieved February 20, 2023, from https://publichealth.gwu.edu/content/study-shows-prevalence-long-covid-university-community
Wang S, Li Y, Yue Y, et al. Adherence to Healthy Lifestyle Prior to Infection and Risk of Post–COVID-19 Condition. JAMA Intern Med. Published online February 06, 2023. doi:10.1001/jamainternmed.2022.6555.
Reference for Long COVID Economic Numbers:
A summary of the most frequently cited statistics regarding the economic impact of Long COVID. The Wall Street Journal’s article “Over Two Million Americans Aren’t Working Due to Long COVID” from August 25, 2022, states:
“Between two million and four million Americans aren’t working due to the long-term effects of Covid-19, according to a new Brookings Institution report released Wednesday.”
“David Cutler, a health economist and professor of economics at Harvard University, has also calculated the economic cost of long Covid. According to his estimates, the total cost is $3.7 trillion.”
“The inability to work translates to roughly $170 billion a year in lost wages, the report estimates.”
“It follows a January Brookings Institution report that estimated long Covid was potentially causing 15% of the country’s labor shortage.”
“The report estimates that roughly 16 million Americans of working age—between 18 and 65—have long Covid…”